Report of the Surgeon General's Conference Z a a) Ifyou would like more information on the “Healthy Children Ready to Learn” Initiative, the Conference on “Healthy Children Ready to Learn: The Critical Role of Parents,” or the six National Education Goals, please contact one of the following agencies: Department of Health Department of Education National Governors’ Association . and Human Services 400 Marvland Ave., S.W. 444 N, Capitol St, N.W. : 200 Independence Ave., S.W. Washington, DC 20202 Suite 250 Washington, DC 20201 (202) 401-3000 Washington, DC 20001 (202) 245-6445 (202) 624-5300 Office of the Surgeon General Department of Health and Human Services 200 Independence Ave., SW, Washington, DC 20201 (202) 245-7163 Department of Agriculture 4th St. & Independence Ave., S.W. Washington, DC 20250 (202) 720-2791 Parents Speak Out for America’s Children Healthy Children The Critical Role of Parents February 9-12, 1992 FEDERAL COSPONSORS AteAlthy CHilavEN * Administration for Children and Families, U.S. Department of Health and Human Services 7 * Food and Nutrition Service, U.S. Department of Agriculture im * Office of Elementary and Secondary Education, U.S. a Department of Education * Health Care Financing Administration, Department of Health and Human Services Pa * Intergovernmental Affairs Office 7 x _ * U.S. Public Health Service, Department of Health and Human Services x Alcohol, Drug Abuse, and Mental Health Administration Office for Substance Abuse Prevention x Centers for Disease Control National Center for Chronic Disease Prevention and Health Promotion National Center for Environmental Health and Injury Control National Center for Prevention Services * Health Resources and Services Administration Bureau of Health Care Delivery and Assistance Maternal and Child Health Bureau * Indian Health Service * National Institutes of Health National Institute of Child Health and Human Development National Institute of Dental Research * Office of Disease Prevention and Health Promotion * Office of Population Affairs PRIVATE COSPONSORS * Alliance to End Childhood Lead Poisoning * American Academy of Pediatric Dentistry * American Academy of Pediatrics % American Association of Public Health Dentistry * American Association of School Health * American Dental Association * American Dietetic Association * American Medical Association * American Nurses’ Association * American Public Health Association % American Public Welfare Association * American Red Cross * American School Food Service Association * Association for the Care of Children’s Health * Association of Maternal and Child Health Programs * Association of State and Territorial Dental Directors * Association of State and Territorial Health Officials %* Child Welfare League of America, Inc. * Children’s Action Network * Federation for Children with Special Needs * General Federation of Women’s Clubs * Girl Scouts of the U.S.A. * Healthy Mothers/Healthy Babies Coalition * Home and School Institute * Institute for Educational Leadership * La Leche League International * March of Dimes Birth Defects Foundation * National Association of Community Health Centers, Inc. * National Association of Elementary School Principals * National Association of Pediatric Nurse Associates and Practitioners * National Association of Social Workers * National Association of WIC Directors * National Center for Clinical Infant Programs * National Center for Educational Statistics %* National Commission to Prevent Infant Mortality * National Congress of American Indians * National Dental Association * National Head Start Association * National Health/Education Consortium * National Mental Health Association * National Parent Network on Disabilities %* National Parent-Teachers Association * National SAFE KIDS Campaign * National Urban League * Parent Action * Parents as Teachers National Center * Society for Nutrition Education * United Way of America Dedication wealthy CHidarth Oo The Critical Role of Parents here are 64 million children in this country. When I was appointed to be Surgeon General, I vowed to speak for all of them—whether rich or poor, healthy or sick, whatever their race or ethnic background. To this end, nearly 2 years ago, I established the Healthy Children Ready to Learn Initiative. This Initiative, which focuses on the health aspects of school readiness, was born out of the President’s first National Education Goal, that “By the year 2000, all children in America will start school ready to learn.” As part of this Initiative, the Conference on Healthy Children Ready to Learn: The Critical Role of Parents was held here in Washington, DC, in February 1992. More than 700 people attended—health professionals and administrators, teachers, Government officials, and others involved in the health and well-being of our Nation’s young people—but our guests of honor for this Conference were the approximately 225 parents who attended from each of the 50 States, the District of Columbia, and the U.S. Territories. Over the course of those 3 days, our time was spent listening to and learning from one another. We learned what worked; we were told what didn’t. The Conference was unique in that the parents spoke from their hearts. They raised a collective voice that said, in effect, “As parents, we must stand up for our children and our families and see that our needs are met. We must do so with dignity, and we must demand respect when others try to rob us of our dignity.” Parents who never knew that they could speak for others eloquently articulated the needs of children and families. Although these parents came to our Conference from all parts of the country and from all walks of life, they came with the same mission: to improve the lives of the children and the families of this country. This proceedings documentis dedicated to those parents who attended our Conference. We are proud of them and inspired by them. Itis our sincere hope that what we learned in those 3 days is reflected honestly in these pages. This document will serve as a “guide” for the rest of us and as an inspiration to do what was asked. As I stated at the close of our Conference, “This Conference may be ending, but what we have accomplished is the beginning of a way of acting and thinking with families in mind.” iv Parents Speak Out for America's Children We must care for our children. That responsibility does not belong to only one individual or entity or Government agency. What we learned at this Conference is that we are all responsible for all of the children. We must become advocates for one another and share our strengths. When President Bush outlined his six National Education Goals, he envisioned an America where our children can compete on an international level. He knew that the children of today are the explorers, the writers, the teachers, and the inventors of tomorrow. If we invest in their future today, we can ensure their growth and advancement for tomorrow. As Surgeon General, I will speak for you, the families of America. My voice and my office are at your service. I thank you from the bottom of my heart for your thoughts, your energies, and your heartfelt spirit. prea C Ayy Antonia C. Novello, M.D., M.P.H. Surgeon General Report of the Surgeon General's Conference Vv Contents Dedication iv Executive Summary 1 Chapter 1 * Introduction 13 Chapter 2 * Charge to the Conference, Antonia C. Novello, M.D., M.P.H., Surgeon General 19 Chapter 3 * Parents Speak Out: Summary of Parent Work Groups 27 National Consensus 30 Findings at a Glance 30 Awareness of and Entry into Health, Education, and Social Service Systems 32 Participation in Health, Education, and Social Service Systems 36 Transitions Through Health, Education, and Social Service Systems 39 Programs That Parents Grade A+ 43 Regional Issues 44 Region 1 44 Region 2 46 Region 3 48 Region 4 50 Region 5 52 Region 6 54 Region 7 56 Region 8 58 Regions 9 and 10 60 Native American Families 62 Migrant Families 64 a Chapter 4 * Presentation of Findings 67 Parent Representatives 68 Awareness of and Entry into Health, Education, and Social Service Systems Sherlita Reeves, Parent Delegate from Arkansas 68 Participation in Health, Education, and Social Service Systems Ellie Valdez-Honeyman, Parent Delegate from Colorado 70 Transitions Through Health, Education, and Social Service Systems Larry Bell, Parent Delegate from Delaware 73 Responder Panel 78 James O. Mason, M.D., Assistant Secretary for Health, U.S. Department of Health and Human Services 78 vi Parents Speak Out for America’s Children John T. MacDonald, Ph.D., Assistant Secretary for Elementary and Secondary Education, U.S. Department of Education 80 Catherine Bertini, Assistant Secretary for Food and Consumer Services, U.S. Department of Agriculture 82 Wade Horn, Ph.D., Commissioner, Administration for Children, Youth and Families, U.S. Department of Health and Human Services 86 Christine Nye, Director, Medicaid Bureau, Health Care Financing Administration 88 Lou Enoff, Principal Deputy Administrator, Social Security Administration 90 a Chapter 5 * Commitment of Our Leaders 93 George H. Bush, President of the United States 94 Louis W. Sullivan, M.D., Secretary of Health and Human Services 97 Edward Madigan, Secretary of Agriculture 100 Lamar Alexander, Secretary of Education 103 Roger B. Porter, Ph.D., Assistant to the President for Economic and Domestic Policy 108 a Chapter 6 * Panel Presentations 111 Panel 1A: Early Childhood Issues That Affect School Readiness and Health 112 Panel 1B: Helping Families Get Services: Some New Approaches 115 Panel 2A: Healthy Children Ready to Learn: What Are the Roles of Parents, Educators, Health Professionals, and the Community? 116 Panel 2B: Special Issues That Impact Children and Families: Substance Abuse, HIV, and Violence 120 Panel 3A: Disabilities 122 Panel 3B: Exploring Comprehensive Health and Education Models for Young Children 125 Panel 4A: Children with Special Health Care Needs: Lessons Learned 127 Panel 4B: Parenting: The Critical Role 130 Panel 5A: Childcare: Two Perspectives 134 Panel 5B: Healthy Start, Head Start, Even Start, and WIC: Integrating Health, Education, and Social Service Programs 136 Chapter 7 * Closing Remarks, Antonia C. Novello, M.D., M.P.H., Surgeon General 139 a Appendix A: Conference Participants A-] Appendix B: Advisory Group B-1 Appendix C: Planning Committee C-l Appendix D: Agenda at a Glance D-1 Appendix E: Facilitators and Recorders E-] Appendix F: Workshops F-] Appendix G: Exhibits G1 Appendix H: Entertainment H-1 Report of the Surgeon General's Conference vii Executive Summary Executive Summary AteAlthy CHilaveN n February 9-12, 1992, in Washington, DC, Surgeon General Antonia Novello hosted the “Healthy Children Ready to Learn: The Critical Role of Parents” Conference, sponsored jointly by the National Gover- nors’ Association, the Department of Health and Human Services, the Depart- ment of Education, and the Department of Agriculture. The 3-day Conference Oo was part of the Surgeon General’s Healthy Children Ready to Learn Initiative, developed in support of the first of six National Education Goals established by President George Bush and our Nation's Governors in February 1990. This goal states, “By the year 2000, all children in America will start school ready to learn.” At the Conference, approximately 225 parents, representing the 50 States, the District of Columbia, and the U.S. Territories, joined with more than 500 government officials and representatives from public and private health, educa- tion, and social service agencies to search for new ways to advance the health and education of America’s children. The parents were selected by their States and Territories to represent their area’s economic, social, and cultural diversity. Parents from diverse backgrounds and other participants directed their efforts toward these challenging goals: * To identify the strengths of parents and families in their roles in preparing children to be healthy and ready to learn. * Tovoice parent and family needs to the health, education, and social service professionals responsible for programs that address the goal of preparing children to be healthy and ready to learn. * To highlight Federal, State, and community-based programs that effectively address these needs. * To identify cross-cutting public/private /voluntary strategies that build a parent-and-family/professional partnership within the scope of existing programs. year 2000, all childre vill start school ‘Teady to 2 Parents Speak Out for America’s Children Conference Structure uring the Conference, the State Parent Del- egates attended Parent Work Groups to dis- cuss three phases of involvement in health, education, and social service systems (the patchwork of health, education, and social service programs and activities throughout our Nation): awareness of and entry into the systems, participation in the systems, and transition as families move through the systems. The delegates were grouped into Parent Work Groups by regions, and special Work Groups were established for Native Americans and Migrant families to ensure that their issues were not lost. (The Native Americans and Migrant families were also represented in the Regional Work Groups.) At the close of the Conference, three representa- tives from the Parent Work Groups (one for each stage discussed, i.e., awareness and entry, participation, and transition) reported their findings to the Conference at large. The issues they raised were addressed by a panel of Government officials, directors of Federal programs that administer key health, education, and social service programs. As the State Parent Delegate Work Groups were meeting, other participants attended presentations by panels of professionals and parent advocates involved with health, education, and social service systems. The focus of these presentations was on howto make programs fit families, instead of making families fit the programs. The following topics were covered in the panel presenta- tions: (1) Early Childhood Issues That Affect School Readiness and Health; (2) Helping Families Get Services: Some New Approaches; (3) Healthy Children Ready to Learn: What Are the Roles of Parents, Educators, Health Professionals, and the Community? (4) Special Issues That Impact Children and Families: Substance Abuse, Human Immunodeficiency Virus (HIV), and Violence; (5) Disabilities; (6) Exploring Comprehensive Health and Education Models for Young Children; (7) Children with Special Health Care Needs: Lessons Learned; (8) Parenting: The Critical Role; (9) Childcare: Two Perspec- tives; and (10) Healthy Start, Head Start, Even Start, and the Supplemental Food Program for Women, Infants, and Children (WIC): Integrating Health, Education, and Social Service Programs. Over the course of the 3 days, President George Bush and members of his Cabinet expressed their com- mitment to the Surgeon General’s Healthy Children Ready to Learn Initiative by addressing the Conference participants. President Bush, Secretary of Health and Human Services Louis Sullivan, Secretary of Agriculture Edward Madigan, and Secretary of Education Lamar Alexander each described the efforts of the Administra- tion in meeting the first National Education Goal. The Conference also provided 28 workshops cov- ering a variety of health, education, and social topics from which the participants could choose. During the breaks, a special exhibition containing information about Federal, State, and community programs con- cerned with the health, education, and well-being of children was open to Conference participants. Also during the breaks and before the opening session, the Conference featured entertainment provided primarily by local children’s groups. Charge to the Participants s Surgeon General, Dr. Novello is responsible for the health of our Nation’s people, and as a pediatrician, she ismost passionately concerned about her responsibility to our Nation’s children. There- fore, Dr. Novello has made the health of our Nation’s children the cornerstone of her agenda. In her Charge to the Conference, Dr. Novello stated that the first National Education Goal holds special importance for her. “Health and education go hand in hand; one cannot exist without the other,” she said. “To believe any differently is to hamper progress.” She cited the three specific objectives in the comprehensive goals statement for the first National Education Goal: Report of the Surgeon General's Conference 3 * All disadvantaged and disabled children will have access to high-quality and developmentally appro- priate preschool programs that help children pre- pare for school. * Every parent in this country will be their child’s first teacher and devote time each day helping his or her preschool child learn; that parents will have access to the training and support they need. * Children will receive the nutrition and health care needed to arrive at school with healthy minds and bodies, and the number of low-birth weight babies will be significantly reduced through en- hanced prenatal health systems. Dr. Novello spoke about some of the barriers that our country faces in developing healthy children ready to learn: failure to immunize against childhood dis- eases, Acquired Immunodeficiency Syndrome (AIDS), childhood injuries, and violence. She stated that, al- though the statistics are staggering, she is hopeful that we can make a difference. She announced her commit- ment to the arduous task and challenged the Confer- ence participants: “I see our task as improving the health and welfare of our Nation’s children in every way we can.” She urged the participants to work together, to teach and to learn from one another. “When it comes to health and. education,” she said, “we need total intuitive conviction to remove every barrier and reach every child.” She urged the parents and professionals present to help make the Conference “a blueprint for bonding education and health— an essential task, ifour children are to succeed.” Parent Work Groups n their discussions of the stages ofinvolvement with health, education, and social service systems (aware- ness and entry, participation, and transition), the parents examined three main questions related to the different stages: 4 Parents Speak Out for America’s Children * What is my role as a parent? % What are the barriers and issues of concern? * What are some solutions and existing model pro- grams incorporating those solutions? Several issues and themes recurred in the parents’ discussions, forming a kind of national consensus on the issues among the parents. The conclusions from this national consensus follow. Awareness of and Entry into Health, Education, and Social Service Systems Roles and Responsibilities of Parents First parents must identify their children’s needs. Then, they must find the programs offering services that meet those needs. They should consider them- selves full partners with the professionals in making decisions for their children. Parents should be advo- cates and should network with other parents to share information and moral support. Barriers to Awareness and Entry Information about the full range of programs available to families is not readily accessible. In addition, the bureaucracy devoted to administering most programs is daunting to most parents. The paperwork is over- whelming, both in volume and in language. Eligibility criteria are inflexible. Social service workers, who often suffer from employee burnout or are culturally insensi- tive, can be patronizing and intimidating. Inflexible office hours and difficulties with transportation add to the problem. The systems seem to suffer from a lack of accountability. Parents feel frustrated and do not know where to turn for help. Solutions An easy-to-read, universal application form for all ser- vices was a major proposal, along with consistent, flex- ible eligibility criteria. Agencies should operate during hours that are more convenient to working parents. Programs should be instituted in elementary schools to develop social competency and effective parenting skills. Funds should be made available for support groups. Parents need a. way to talk back to the systems. A campaign should be conducted to increase public aware- ness of the importance of healthy children. Participation in Health, Education, and Social Service Systems Roles and Responsibilities of Parents The parents’ primary role is to nurture their children. They should also serve as role models not only to their children but also to other families who need service, and they should enlist those families into programs. Parents need to be fully involved partners with the service providers—in making care decisions, communi- cating cultural sensitivities, and evaluating services. Barriers to Participation The same difficulties exist here as with gaining access to the system: paperwork, inflexible hours, transporta- tion problems, and gaps in service. These problems seem to stem principally from a lack of coordination among programs and the absence of a family-centered Executive ¥ Summary philosophy. Again, the parents saw a need for family support groups and funding to organize them. Solutions First, training in parent skills should begin early. Im- proved communications among agencies would solve many problems. “One-stop shopping” (i.e., receiving a multitude of ‘services at a convenient location) with flexible hours and simplified paperwork would go a long way toward easing parents’ burdens. Adirectory of services also would be helpful. Consistent funding for programs and parent involvement on the boards over- seeing programs would help provide quality service. A “national psychology” that supports families should be encouraged; i.e., our society must be encouraged to value the family and support the efforts of parents in raising their children, particularly for families who need help. To that end, people should vote for candi- dates who espouse that view and who will work to further it when elected. Transitions Through Health, Education, and Social Service Systems Roles and Responsibilities of Parents Parents need to be active participants in transitions from program to program because they are the best evaluators of their children’s needs. They must be prepared for and remain involved in the transition process and, in turn, prepare their children. Again, they should be advocates for the child to ensure that the child is truly getting what he or she needs. Other important aspects of the parents’ role are loving their children and helping develop self- esteem for themselvesand for their children. Forsmoother transitions, parents must also be good recordkeepers and request written reports. Barriers to Smooth Transitions A lack of communication among agencies regarding available services complicates the transition process for families. Reports that are not written in the language of the parents make transitions confusing: Culturally Report of the Surgeon General’s Conference 5 insensitive service workers isolate parents. Unstable funding makes it difficult to predict the availability ofa particular program when a transition occurs. Solutions Improved communications was one of the most often- cited needs, along with information clearinghouses, hotlines, service directories, support groups, and com- munity outreach. Service providers should receive sensitivity training. Once again, the parents cited the need for a streamlined system for handling paperwork, one-stop shopping, and sensible hours. Characteristics of Programs Parents Grade A+ Parents said that programs must have the following characteristics: be child centered and family friendly, be easily accessible, have broad eligibility standards, be antidiscriminatory and multilingual, be well-promoted, provide individualized service, be staffed sufficiently, and be open at convenient hours. In addition to having these characteristics, programs must coordinate with one another to facilitate entry and participation in the systems and to avoid duplication or gaps in services. Above all, programs should empower families as they serve them. The parents strongly recommended pro- grams that involve parents directly as a way to empower them. Furthermore, they stressed that programsshould involve the parents in making the decisions that affect their children, decisions ranging from policies to staff- ing and budgets. Parent Presentations n the final day of the conference, three repre- sentatives from the Parent Work Groups sum- marized their conclusions. One representa- tive focused on the discussions of awareness of and entry into health, education, and social service systems, an- other on participation, and the third on transitions. 6 Parents Speak Out for America’s Children Awareness of and Entry into Health, Education, and Social Service Systems Sherlita Reeves Parent Delegate from Arkansas In summarizing the reports from the groups on aware- ness and entry, Ms. Reeves said that the parents’ roles and responsibilities should include becoming informed about their own child’s needs, acting as an advocate for the child, meeting their own needs so that they can be equal partners with service providers and profession- als, and networking with other parents. The issues of concern were too much paperwork, difficulty in getting into the system, materials not writ- ten in parents’ language, and providers who do not understand the culture of those that they serve. Inflex- ible hours of operation, lack of transportation, and environmental barriers for physically impaired people were noted as barriers. A significant problem is the lack of accountability in the systems. Solutions to these problems focused on establish- ing school-based programs that develop social compe- tencies, building support networks within the commu- nity, producing directories of resources with toll-free numbers, designing one-stop shopping for all man- dated programs, creating a universal application form, and giving parents a way to talk back to the system. Participation in Health, Education, and Social Service Systems Ellie Valdez-Honeyman Parent Delegate from Colorado Ms. Valdez-Honeyman stated that parents need to pro- vide for the needs of their children. Food, clothing, safety, health care, and quality time are essential, but parents also need to instill a spirituality that encourages values, morals, and respect for themselves and for others. As families begin to participate in the systems, just as when theyare entering the systems, parentsneed to continue to be advocates—for their own children, for other families, and for components of the systems that work for them. They should be involved in their communities. Ms. Valdez-Honeyman related other areas of con- cern identified by the parents. They felt that a stigma is attached to receiving services, the stigma of being poor. Eligibility criteria can also be a problem because they are not flexible enough to include all who have need. Also, language not native to the parents and system jargon make dealing with the systems confusing. Trans- portation is an issue in rural areas where services are limited and parents must travel long distances. Pro- grams often do not have convenient locations or hours for obtaining services. The solutions identified by the parents fell into two categories: local initiatives that deal with local service delivery, and Federal initiatives that reach across all levels to create a standard in which service systems welcome and embrace families. The principles would then be embodied in the design, delivery, and evalua- tion of services. Transitions Through Health, Education, and Social Service Systems Larry Bell Parent Delegate from Delaware Mr. Bell provided a laundry list of issues that the parents had discussed regarding transition. First, parents need to participate in the transition process so that they can help prepare their children for the transition. They can Executive ad Summary & Piao be better prepared for the transitions themselves if a resource manual or some form of information about new locations or programs, including contact names, were available to them before the transitions occur. The parents acknowledged their responsibility to maintain copies of their children’s records to ensure that they are not lost during transitions. The parents also have a significant responsibility in ensuring that the roles of parents and professionals in the transition process are clarified and that the family is treated with respect. Programs and staff must be culturally sensitive and relevant, and they must help develop self-esteem not only for the children but also for their parents, who then can be good role models. Parents should not be afraid to confront the systems if necessary to ease the transition process. The parents stressed that, to ease transitions, parental involvement in programs should be consis- tent.. Furthermore, parental involvement should in- clude program design and policy-making decisions. Mr. Bell also presented concerns that were raised by the other representatives. The parents cited the need for improved communication among the various systems that serve them in the transition process. Im- proved communication would help avoid duplication of services and promote continuity of service as transi- tions occur. They recommended an interstate com- puter network to ease the application process as fami- lies move from State to State. They urged that school credits be accepted more readily from State to State. They repeated the plea for one-stop shopping, less paperwork, flexibility of service, and help with transpor- tation problems. They also promoted the use of school social workers who could act as advocates for parents and children in the transition process. Finally, Mr. Bell presented the parents’ recom- mendation for legislative action to help improve the transition process and urged the parents to elect offi- cials who are family advocates. He summarized his remarks by reminding the participants of the three C’s of successful transitions: consistency, continuity, and coordination of services. Report of the Surgeon General's Conference 7 Responder Panel James O. Mason, M.D. Assistant Secretary for Health U.S. Department of Health and Human Services Assistant Secretary Mason, head of the U.S. Public Health Service, answered the parents’ challenge for action by the officials by promising to meet with the State and territorial health departments and their com- missioners to discuss the issues raised by the parents. He reinforced the parents’ contention that leadership must come from all levels. Dr. Mason stated that he agreed with 98 percent of what the parents said and his agency is working toward creating a user friendly system of health care. As an example he offered a new Model Application Form, which isa simplified, unified, uniform application avail- able for use in the States. He stated that both the Federal Government and the parents want the same features in the systems, but that each must work from opposite ends to achieve them at the middle levels where the programs are implemented. He also outlined Healthy People 2000, a national program with 300 measurable health goals for the year 2000; 170 of these goals relate to mothers, infants, children, and adolescents. He closed by expressing the willingness to work together as partners. John T. MacDonald, Ph.D. Assistant Secretary for Elementary and Secondary Education U.S. Department of Education Assistant Secretary MacDonald said that schools need to return to things that parents and children need. He shared a vision of schools as the hub of one-stop shopping, where education is the central mission butwhere children and families can use other family services as well. This facility would operate from early in the morning until late at night, including weekends and during summer and holidays. It would virtually never close. He also said we need a massive urban intervention program using Federal resources in conjunction with State and local resources to provide for communities. 8 Parents Speak Out for America’s Children Assistant Secretary MacDonald explained that many current programs can help one another. He cited Even Start as an example. A program for children 0 through 7 years old that provides not only parenting and childcare butalso job training and placement, Even Start can be used to buy or expand Head Start services or to create its own services. He emphasized that Federal agencies are working to integrate their services, and they will continue to do so with the support of America’s families in persuading Congress to make needed changes. Catherine Bertini Assistant Secretary for Food and Consumer Services U.S. Department of Agriculture The Department of Agriculture spends more than half of its budget on food assistance programs for the poor and children. Ms. Bertini explained how the Depart- ment currently is working with directors around the country to promote joint services for immunization and WIC. She also described direct certification of school lunch and breakfast programs through a computer marriage of the school lists with files from the Aid to Families with Dependent Children (AFDC) program in an effort to simplify eligibility factors and expand ac- cess. The two-signature policy for Food Stamps has been eliminated and the agency has launched a pilot program called Electronic Benefit Transfer (EBT) us- ing bank cards for the food stamp program. In closing, Ms. Bertini discussed the importance of school breakfast for children coming to school ready to learn. Half of the schools that have school lunch programs also have breakfast, but through expanded access the schools can feed more kids. She urged parents to work with and support the regional agencies that provide services and to help persuade Congress to support proposals for change in the systems, Wade Horn, Ph.D. Commissioner Administration for Children, Youth and Families U.S. Department of Health and Human Services Dr. Horn admitted that Head Start works because it is built upon parental involvement and community sup- port. Head Start also integrates health services and social services and is one of the largest delivery systems of health services to poor children in our country. However, Head Start still has much work to do. It is undertaking three new challenges: administering more money to serve more kids; increasing services to adults with children in Head Start, particularly adult literacy and substance abuse; and providing job training for Head Start parents. Dr. Horn also warned that Head Start is not an inoculation against everything that can possibly go wrong ina child’s community. We must do a better job of creating a good environment for children when they leave Head Start. To that end, he has been working with Assistant Secretary MacDonald to establish better connections between Head Start and our Nation’s public schools. Christine Nye Director Medicaid Bureau Health Care Financing Administration Ms. Nye described the massive effort that Medicaid makes to serve our people; it spends more than $100 billion for services to 30 million Americans, 17 million of whom are children. She continued that, although Medicaid is expanding services and eligibility, it still falls shortin many areas. However, she cited some bright spots: expansion of eligibility for children to the maximum in as manyas 20 States and increased flexibility in providing waivers to keep children with special health care needs at home rather than in institutions. One expanded program for children is the early Periodic Screening, Diagnostic and Treatment Program, the greatest child health reform since the enactment of Medicaid. Ms. Nye also described efforts to make access to Medicaid easier: streamlining application forms, increas- ing payments to community health centers, and working to overcome barriers between physicians and Medicaid. She expressed her commitment to continuing these ef- forts, but cautioned the participants that Medicaid is administered by the States and that the parents should work with the State Medicaid staff and inform them of the findings of the Conference. In closing, she thanked the parents for rejuvenating her own commitment to imple- menting changes in the program. Lou Enoff Principal Deputy Administrator Social Security Administration Although most people think of Social Security as a retirement program, Mr. Enoff informed the partici- pants that it pays more than $1 billion to more than 3 million children under its programs every month. These children either have disabilities or they are the off- spring of retired or disabled workers or deceased par- ents. Social Security has expanded access with a nation- wide 800 number that operates 12 hours a day with bilingual help if the client needs it. In addition, Supple- mental Security Income (SSI) hasan outreach program to find those people who are eligible. Social Security has begun integrating services where possible with other agencies. Also, Social Security has published standards of service for its offices, which will be modified as goals in providing services are met. For instance, Social Security cards are now issued within 10 days after the application is filed; the same process formerly took up to 4 weeks. Mr. Enoff urged the parents to call if they have a problem with or concern about Social Security. He reminded them of the 800 number and added that, ifthey received no satisfaction from the service providers on the toll-free line, they could call him directly at 410-965-9000. Report of the Surgeon General’s Conference 9 Keynote Speeches George H. Bush President of the United States The President said that, in his administration, families come first. Pointing to the critical role of parents, he said that, as a child’s first teachers, they offer the love and nourishment that no government program can ever hope to provide. Citing programs that promote the health and education of young children, President Bush stated that, since 1988, Federal dollars for immunization have more than tripled. In the last 3 years, funding for Head Start has almost doubled; this year’s proposed increase of $600 million is the largest single increase in the program’s history. President Bush also outlined the provisions of his health care reform plan: providing a $3,750 tax credit for low- income families and an equal tax deduction for middle- income families; cutting costs to make health care more efficient, and cutting waste and abuse. The President called it a common-ense reform that will maintain high-quality care, Cutcosts, ensure maximum freedom of choice, and give every family access to health care. Louis W. Sullivan, M.D. Secretary of Health and Human Services Secretary Sullivan said we must invest in children. To support that investment, the President’s 1993 budget proposes to increase funding for programs serving children to $100 billion. Infant mortality is a national priority, and an expansion of the Healthy Start initia- tive will concentrate $143 million on 15 communities with stubbornly high infant mortality rates. We must also focus on prevention. The President has requested $52 million for immunization activities and $40 million for Centers for Disease Control (CDC) Lead Poisoning Prevention Grants to support 30 state- wide programs. Finally, we must empower parents. The President’s $600 million increase in funding for Head Start will serve an estimated 157,000 additional children in 1993 10 Parents Speak Out for America’s Children and will involve their parents. In addition, the tax provisions of the President’s health care reform pro- posal will help more than 90 million Americans and will cover 95 percent of the uninsured. Edward Madigan Secretary of Agriculture Secretary Madigan outlined the many Department of Agriculture programs that have direct impact on chil- dren. He cited the following examples: WIC, a gateway to other governmentservices such as immunization; the Child and Adult Care Food Program, which serves meals to preschool-aged daycare children (including Head Start meals), a service that is expanding; the National School Lunch and Breakfast Programs, which are being cross-matched with AFDC files to ensure that entitled children are reached; various summer food assistance programs; Food Stamps, the largest food assistance program; and various other programs for distribution of commodities. In addition to providing food, the Department of Agriculture also provides nutrition education through various programs. The Nutrition Education and Training Program (NET) trains school food-service personnel, teachers, and students. The National Food Service Man- agement Institute, which operates at the University of Mississippi, trains school-lunch operators. Also, WIC provides nutrition education as an integral part of its program. Secretary Madigan urged the participants to work locally to ensure the success of these programs. Lamar Alexander Secretary of Education Secretary Alexander reiterated the Administration’scom- mitment to Federal standards for quality education. He recounted the implementation of the Healthy Children Initiative in Tennessee during his term as Governor. That program sought to expand prenatal care, identify doctors for newborns, and encourage employers to provide childcare opportunities for their employees. Secretary Alexander stated that, although na- tional policies and State programs are important be- cause they affect funding, the fundamental problem is a matter of parents, families, and communities taking care of children and putting a priority on them. He said the Department of Education now has 27 different Federal programs that are available for children under 5 or 6 years old, but the challenge is to spend the money more wisely. As an example, Secretary Alexander pointed to the Decatur, Georgia, school district, which has turned the school community around by setting and enforcing tough standards and by using the school as the organiz- ing point to integrate community services for the chil- dren. In closing, Secretary Alexander encouraged the audience to assist their communities in becoming part of the America 2000 program. Roger B. Porter, Ph.D. Assistant to the President for Economic and Domestic Policy Dr. Porter stated that the President’s commitment to the goal that all children start school ready to learn permeates his administration. The President’s Educa- tion Policy Advisory Committee, which is made up of educators, business and labor leaders, and media repre- sentatives, has spent much time discussing ways to enhance parental involvement in the health and educa- tion of our children. In addition, the President has established a partnership with the Nation’s Governors in adopting the six National Education Goals. Dr. Porter stated three convictions that synthesize the spirit of the National Education Goals. One, fami- lies come first. Two, we must never allow things that matter most to be at the mercy of things that matter least. We, as a society, must honor those activities that involve one generation transmitting to the rising gen- eration a set of fundamental values and aspirations, which includes good health and a commitment to learning. Three, we are all in this together. Closing Remarks n her closing remarks, Dr. Novello observed that everyone came together at the Conference for only one purpose: to improve the lives of children and families. She said thatreforms in the health, education, and social service systems of this country will be ad- vanced through the families. It was her belief that the Conference did one thing beautifully: It vindicated parents. Parents will no longer be silent partners; they will be activists and advocates. Dr. Novello asked attendees to join her in sharing the responsibility for making their families and chil- dren well. She reiterated some of the concerns raised at the Conference: the importance of fathers in the family, the need for flexible services and cultural sensi- tivity, the needs of teenage parents, and the desire for self-esteem for all of our children and their parents. She urged the participants to become involved and share with those at the local and at the State levels, in the public and in the private sectors. Our children’s well- being is no longer one person’s responsibility, and we must “get real.” There is too much at stake. This Conference, then, can be just the beginning of a coalition of parents trying to determine, through their collective actions, what this Government can do. In closing, Dr. Novello challenged the participants one last time. “I’m with you,” she said. “Are you with me?” Report of the Surgeon General’s Conference 1 Chapter | xeAlthy CHilarén “Providing for health, ‘nourishment, | active parenting are basic introduction n February 9-12, 1992, at the Ramada Renaissance Techworld in Washington, DC, the Surgeon General, Dr. Antonia Novello, hosted the “Healthy Children Ready to Learn: The Critical Role of Parents” Conference. This conference was jointly sponsored by the National Governors’ Association, the Department of Health and Human Services, the Department of Education, and the Department of Agriculture. The Conference was held as part of the Surgeon General’s Healthy Children Ready to Learn Initiative, which in turn supports the first of six National Education Goals established by President George Bush and our Nation’s Governors. This goal states, “By the year 2000, all children in America will start school ready to learn.” Recognizing the crucial role of parents in ensuring their children’s good health and preparing them for school, Dr. Novello invited them to join with Government officials and represen- tatives from public and private health, education, and social service agencies to open the channels of communication and to explore innovative steps to support the care and education of our Nation’s children more effectively. Approximately 225 parents, representing the 50 States, the District of Columbia, and the U.S. Territories, gathered with more than 500 professionals concerned about the care of children to express the needs of families and explore ways that those needs can be addressed. Appendix A lists the more than 700 participants of the Conference. providing a suitable foundation for normal growth and emotional well- being, a foundation that fosters the ability to learn and ensures school readiness.” 14 Parents Speak Out for America's Children Report of the Surgeon General's Conference 15 Background he seeds for the Conference were planted in February 1990, when President Bush and the Nation’s Governors made education a national priority and established the six National Education Goals. The first goal is an extremely important one because it focuses on the foundations of learning: physical, social, and emotional health and well-being, and cognitive development. Providing for health, nourishment, and active parenting are basic ways of providing a suitable founda- tion for normal growth and emotional well-being, a foundation that fosters the ability to learn and ensures school readiness. However, deficits in any of these areas during the critical early period in achild’s development are difficult, if not impossible, to overcome. To achieve the first National Education Goal, our Nation must provide access to health care and proper nutrition, education for parents, and educational programs for all ofour children. In August 1990, through the announce- ment of her Healthy Children Ready to Learn Initiative, the Surgeon General accepted the challenge to support achievement of this readiness goal. Dr. Novello’s initia- tive focuses on the health component of the first Na- tional Education Goal because children’s ability to learn is dependent on their health. To assist her in undertaking this challenge and to explore the best means to meet the goal, Dr. Novello formed an Advisory Group of highly qualified represen- tatives from the White House staffand the Departments of Education, Agriculture, and Health and Human Services. (The Advisory Group members are listed in Appendix B.) The role of the Advisory Group is to recommend steps to improve the health and well-being of children so that they are healthy and ready to learn when they begin school. This role encompasses the following tasks: (1) determining the health needs of preschoolers and their parents; (2) identifying Federal resources that can be used to meet those needs; (3) discovering gaps where resources to meet the needs are 16 Parents Speak Out for America’s Children lacking; (4) clarifying the relationship between the Federal Government and the States in meeting these needs and the responsibilities of each; (5) developing strategies to minimize barriers to cooperation among Federal, State, and local agencies and private organiza- tions involved in the health and education of young children; and (6) identifying ways to expand the Nation’s resources through cooperation and collaboration to meet the challenges of this readiness goal. Among other recommendations, the Advisory Group advised seeking parents’ perceptions of needs that must be met if our Nation is to reach the readiness objective. The design of this Conference was based on the Advisory Group’s recommendations. The Surgeon General set these challenging goals for the Conference: * Toidentify the strengths of parents and familiesin their roles in preparing children to be healthy and ready to learn. * To voice parent and family needs to the health, education, and social service professionals respon- sible for programs that address the goal of prepar- ing children to be healthy and ready to learn. * Tohighlight Federal, State, and community-based programs that effectively address these needs. * To identify cross-cutting public/private/volun- tary strategies that build a parent-and-family/ pro- fessional partnership within the scope of existing programs. In preparation for the Conference, the Surgeon Gen- eral requested that the States identify parents who would make up a State Parent Delegation at the Confer- ence. The term “parent” was broadly defined to include anyone who is guardian of a small child, i.e., parents, grandparents, adoptive parents, foster parents, etc. The individual State delegations were asked to hold pre- Conference meetings to discuss issues relating to health, education, and social service systems of importance to the parents. Conference Organization he Conference, which was the result of 18 months of planning by the Surgeon General and her Advisory Group, assisted by the Planning Committee (listed in Appendix C), provided a unique opportunity for parents and families to meet with Fed- eral, State, community, and private professionals from health, education, and social service systems. The agenda (Appendix D) was carefully planned to make the Conference an effective forum for information exchange. The State Parent Delegates attended three Parent Work Groups to discuss their needs and issues relating to three phases of involvement in the health, education, and social service systems: awareness of and entry into the systems, participation in the systems, and transitions as families move through the systems. The delegations were grouped according to geographical regions, and special work groups were established for Native American and Migrant families (who were also represented in the re- gional work groups) to ensure that their special concerns were not lost. The Facilitators and Recorders for these discussions are listed in Appendix E. In her Charge to the Participants, found in Chap- ter 2, the Surgeon General emphasized that these Par- ent Work Groups were the focus of the Conference. Chapter 3 of these proceedings summarizes the issues discussed in the Parent Work Groups. The summaries examine a broad national consensus from issues raised in several of the work groups and then explore the narrow focus of the individual work groups. Chapter 4 contains the findings as presented to the full Confer- ence at the closing session by three State Parent Del- egate representatives. It concludes with the remarks of the Responder Panel, directors of government pro- grams that provide services, who responded to the issues presented by the parents. During the Conference, President Bush and key members of his Administration expressed their personal commitment to Surgeon General Novello’s initiative and emphasized its importance to our Nation’s future by their attendance at the Conference and their remarks to the participants. The speeches delivered at the Conference by President Bush, Secretary of Health and Human Ser- vices Louis Sullivan, Secretary of Agriculture Edward Madigan, Secretary of Education Lamar Alexander, and Assistant to the President for Economic and Policy Devel- opment Roger Porter are found in Chapter 5. Concurrent with the Parent Work Groups, panel presentations that explored current services, both pub- lic and private, and parent support groups were con- ducted for General Participants (those who were not State Parent Delegates). These presentations, by panel- ists who were experts in their respective fields, focused on ways to customize services to fit families instead of trying to fit the families into the services. Chapter 6 contains summaries of the Panel Presentations. All participants had a choice of 28 informative workshops covering a variety of topics from nutrition, health care, and injury prevention to violence and its impact on children. These workshops, led by profession- als in the fields, are described in Appendix F, Addition- ally, the Conference presented a special exhibition of Federal, State, and local programs dedicated to the health and education of children. Program representatives shared information about the programs and distributed materials. Appendix G contains a listing of the exhibitors. Participants were entertained during each of the breaks by an array of performers, most of whom were children. Appendix H recognizes each group who shared their talents with the participants. Report of the Surgeon General's Conference 17 e to the Conference no Jayde) Chapter 2 Antonia C. Novello, M.D., M.P.H. Surgeon General ood morning. Twould tke to welcome vou to the “Healthy Children Reads to Learn: The Critical Role of Parents” Conference. This Conference is the culmination of 18 months of plan- ning, outlining, and meeting with the bestand brightest individuals concerned with the health and education of our Nation's children. President George Bush has mace the education of our Nauon’s children a major priority of his Presidency. The Department of Health and Human Services and Secretary Sullivan have made caring for children a comerstone of the Department’s agenda, and as the Surgeon General, Phave made the health of our Nation's children the cornerstone of mine. Health and ecduca- lion go hand in hand: one cannot exist without the other. To believe anv differently is to hamper progress, Just as our children have a right to receive the best education available, they have a right to be healthy. As parents, legislators, and educators. 1 is up to Us Lo sec that this becomes a reality. Therefore, we are meeting to improve the educa- tion and health ofour Nation's children and to improve these things through the eves of parents, through the collective participation of the family. This is one of the most serious tasks for anv society. and it should not be anv less serious for all of us gathered here today. As T welcome vou and ask vou to give this task vour Most serious attention, Lam going to ask even more of vou. Carl Jung. the great psychologist. said that “We should not pretend to understand the world only bv intellect: we apprehend it just as much by feeling.” Lam going to ask vou to use vour experience and intellect, but also Tam going to ask vou to express vour feelings about this challenge. Pwant vou to bring not only vour love and concern but. if necessary, even vour anger to this issue. Tam asking vou toe get involved. Adding 20) Parents Speak Out for America’s Children I lechng todniedicet will bring dhe best in each one of us out andl will bring as the best of what this Conference can give to the smdiest of America’s citizens. Tami asking vou. as a parent, official. teacher, or health care provider. to bring vour honest perceptions of what can help families ane childven to be healthy and readw to learn, Ifwe do not face the barriers or address the concerns, then we become a partof the problem and not apart ol the soliton, We know we have problents, but we also have great resources and strengths, not the least of which is America’s devotion to is children. We need a commitment from each person here today and the organizations they represent so that they will bring their best knowledge and most profound human commitnent to this issue. Perhaps our greatest challenge is to join hands and recovera true American spirit, This is the most caring country in the world, wid today we will bring this concern to the tives of our children. xteAlthy Crilavéy “Heady-to Tear We are focusing on the role of parcnts—all of us. whether the President, Cabinet officers. Federal of fi- cials, Governors, or State officials. Some of us might be parents; others may not, But today. for the duration of this Conference. lets take the honorable position that each adiltis each child’s parent. Each American child belongs to each of us. No one parent or program can help each and every child. but together we can strive for the common goal of making cach child as healthy and ready to learn as possible, Twould also remind vou not to get discouraged about the Federal Government. This is vour Govern- ment, and it isa powerful one. We are going to teach vouwhata powerful toolit canbe. We are going to teach vou how to use it. We have created. iniproved. ane extended Head Start. We have changed immunization policies to protect children agaist a deadly revival of measles and other childhood iliesses, We have gouen Involved in improved nutrition programs, We wantvou to know that we are here to work with vou. Let me expand just a moment on measles. We have had a verv successful Fedeval State. private cam- paign to increase nunizauions, Granted that imeastes often appears in waves and that we have been tna bad wave, but let me point out chat the rate of measles has dropped 65 percent between 1990 and POOL. from 27.786 cases in 1990 to GAS cases in LOYL. We had onl about 1,500 cases of measles in 1983, so vou can see we stl have far to go to reduce measles completely. The public and the private sectors have mobilized: cvervone has responded. Dr. Sullivan. Dr. Roper. Dr. Mason. and Tare finishing a six-city tour and have visited clinics im San Diego. Detroit. Philadelphia. Rapid City. Phoenix. and Dallas to encourage Hnmunization, This past Friday. we visited aa imantuinization clint i San Diego with President Bush. Hollvwood celebrities took on measles imununization as their cause anid formed the Children’s Action Network. Phe Public Health Ser vice has responded acdinirably, but there is sul) more to be done. Let me make this point. When we join together— parents, communities. and the government—when to- gether we think and care. we can turn any epider around. We have both the means and the wet “The influence of a parent is impos- sible to exaggerate. A child looks up to a parent; children trust their par- ents to help them make their dreams become realities.” More than 2.000 vears ago. Plato said, “The direc- tion da which education starts a man will determine his future life.” Pbeleve that. Pknow it to be true in my own life. My mother has been an educator all her life. and she beheves that education is the greatest gift of all. She was the one who cneouraged me to use education as a tool for success. AH of us learn the dimensions of a larger world from our parents. The influence of a parentis impossible to exaggerate. A child looks up to a parent children trust their parents to help them make their dreams become realities. It wasa long way for me from Fajardo, Puerto Rico. to the Office of the Surgeon General, but it was not an iMpossible wav. Education made it possible. Twould ask vou to remember, too, that exceptional teacher who touched and inspired vou as a student. Think what a teacher can do. As parents. edttcators, and health professionals, we must remember the influence we can have on the future of our children, When President Bush outlined his six National Education Goals for the vear 2000. he envisioned an America where our children compete on an interna- Honallevel He knew thatthe children of today are the eXplovers. writers, teachers, aud inventors of tomorrow. Weomust teach them all thatwe know and provide them with thease tools thes need to make ther dreams come Reporpotthe S aeeon Generals Conference 217 true. Our children are verv smart; some of them are smarter than any of us ever were. They are eager to learn, and we must not fail them. We have some hard facts to face. Our educational system is unsurpassed at helping children excel at all levels, from diverse backgrounds, and often with En- glish as a second language. Our public schools and our concept of an educated society are the source of America’s strength and its potential. Still, we must face the truth. Scholastic Aptitude Tests (SAT) scores con- tinue to remain low. We are not doing well in math and science. Many of our schools are overcrowded and overburdened, and many of our teachers are set up to fail by having too many children to teach. “We can’t become discouraged. Our teachers, children, and future depend on our dedication to turn things around. Some will tell us that it can’t be done or that it just might be be- yond hope. But I know in my heart that isn’t true.” We can’t become discouraged. Our teachers, children, and future depend on our dedication to turn things around. Some will tell us that it can’t be done or that it just might be beyond hope. But I know in my heart that isn’t true. The President and the Nation’s Governors are working to remedy these problems—to make our schools the institutions for learning that they were meant to be and are capable of being. Collectively we must work to make that a reality. 22 Parents Speak Out for America's Children As Surgeon General, I am responsible for the health of the people of this great country. That means all cultures, races, mothers, and fathers. And to me, as a pediatrician, it especially means children. When I was appointed Surgeon General, I resolved that my agenda would focus on the needs of our Nation’s children. It is an overwhelming task, but it is an altogether necessary one. When the President announced his six National Education Goals, there was, and continues to be, great enthusiasm for the promise of these goals. The first National Education Goal, that “By the year 2000, all children in America will start school ready to learn,” holds special importance to me. This goal is realistic, and it is achievable. I believe those of us here in this room can be instrumental in implementing it in our own schools and communities. I know it is worth our best efforts. as part of this first National Education Goal, we must work to satisfy three objectives: *® First, that all disadvantaged and disabled children will have access to high-quality and developmentally appropriate preschool programs that help children prepare for school. * Second, that every parentin this country will be their child’s first teacher and devote time each day help- ing his or her preschool child learn; that parents will have access to the training and support they need. *® And last, that children will receive the nutrition and health care needed to arrive at school with healthy minds and bodies, and the number of low- birthweight babies will be significantly reduced through enhanced prenatal health systems, These three objectives are the keys to our children arriving at school healthy and ready to learn, and your participation is crucial. This Conference has been structured to give each one of you the opportunity to participate and to listen to what the esteemed panelists, Government represen- tatives, and keynote speakers have to say. Most impor- tantly, this Conference has been structured to give you the opportunity to participate in these discussions and in the dialog that follows. Those of vou here representing the 50 States and the Territories will be able to tell the rest of us what works and what doesn’t work in your States and commu- nities. There is always room for improvement, growth, and change. We are going to talk about the good and the bad. By doing so, we will be able to avoid mistakes along the way and help, in turn, to highlight and applaud the success stories and use them as models as we move toward the vear 2000. Today, there are 64 million children in this coun- uy. We have 19 million American children under 5 years old and 4 million under 1 year. More than 20,000 children a vear are killed by injuries. Some 1,677 have died from AIDS since its outbreak. Childhood diseases, due to a lack of vaccines, have disabled or killed thou- sands more. Although I am verv hopeful, we must be honest. The statistics are staggering. What can we, as a Nation, doy What can I, as Surgeon General, do? For one thing, | am alwavs going to keep you informed, and I am going to tell you what you can do to help the Department [of Health and Human Services] and the Nation. To start, the goal of the Department of Health and Human Services is to have 95 percent of children immunized by 1995 and, hopefully, all of our children immunized by the year 2000. If you are a parent, see that your children are immunized, and tell other parents, too. If you are an official, check out the situation in your own area and help make immunization for all children a reality. I believe that immunization is a right, and we must all get involved to make that righta reality. To be successful, all vaccines must be used if they are going to work; they do us no good by sitting in a clinic or a doctor’s office somewhere. I must make one point perfectly clear: We do not suffer from lack of vaccine: we suffer from failure to immunize. The immunizations are available: we need to get them to all of our children. With regard to the terrible pandemic of AIDS, it is here that we must increase our vigilance to stop its spread. We must educate about AIDS, help everyone involved in the care of those with HIV disease, and send “It is my sincere hope that our true legacy will be evident in the children who will benefit from our collective efforts.” the message that we must fight the disease, not the people with the disease. The number of pediatric AIDS cases continues to increase. Before 1985, 58 percent of the children reported with AIDS were from New York City, Newark, or Miami. After 1985, however, only 36 percent of children with AIDS were from these cities. AIDS in women and children is spreading beyond the large cities to smaller towns and even rural settings. The greatest increases in numbers of cases reported to the CDC [Centers for Disease Control] were in rural areas and in metropolitan areas with populations of under 100,000. From 1988 to 1989, there was a 12 percent increase in the number of pediatric AIDS cases. From 1989 to 1990, there was a 37 percent increase. As of August 1991, 3,199 children under 13 with AIDS were reported to the CDC, more than half of them in the last 2 years alone. Of these cases, 84 percent were infected perinatally, and 52.4 percent, or 1,677, have died. Based on the National Survey of Childbearing Women, the CDC estimates that 5,000 to 6,000 HIV-infected women gave birth in the past year. Based on a 30 percent transmission rate, itis estimated that 1,800 to 2,000 HIV- infected infants were born. Children of minoritv families have had more than their share of AIDS. For example. although only 15 percent of all children in the United States are Report of the Surgeon General’s Conference 23 Mirican-American, they are known to account for 51 percent of all AIDS cases. Although only 8 percent of all children in the United States are of Hispanic de- scent, they account for 26 percent of AIDS cases in children. Clearly, all of us here must be prepared to deal with children and families with AIDS. But to do that. we must have culturally sensitive programs. We must know Harlem to design a program for Harlem, and we must know the barrios of Texas to be able to work there, Some programs must be in Spanish or in any language that is necessarv. Parts of Appalachia can be as desolate as any inner city slum. We should not design programs for our communities unless we have walked in their shoes and in their streets. We must be humble and consult those who know those communi- ties when we design any interventions. The third point on which we all must continue to focusts that of childhood injuries. According toa recent health report issued by the Bureau of Maternal and Child Health, injuries are the most significant health problem affecting our Nation’s children and adoles- cents, however we measure it—whether by numbers of deaths, dollar costs for treatment, or relative rankings with other health problems. Injurv need not maim and hull so many ofour children. The tde of injuries is an epidemic we can control, Childhood injurvis one of the principal public health problems in America todav, causing more deaths than all childhood diseases com- bined and contributing greatly to childhood disability. The United States is also a Nation plagued bv violence. American children are LO times more likely than German children, 11 times more likely than French children. and 15 times more likely than English chil- dren to be victims of homicide. We could debate whether itis poverty or race that so intensifies patterns of morbidity and mortality, that so-darkens the picture for violence, but now, sutfice it to sav that this has to stop. As Abraham Lincoln said in 1860, “Let us have faith that right makes might.” Knowing we are right, let’s dare to do our duty as we understand it. f may as well admit that Isee the Office of the Surgeon General as a way of reaching families, a way of reaching children. [have probably held more babies 24 Parents Speak Out for America’s Children than anv Surgeon General in history, Mv schedule— ask my staffif vou don’t believe me—goes off the rails when I visita pediatric clinic, an Indian Health Service hospital, a pediatric AIDS unit. Thave talked in more high schools and in more small towns than I can remen- ber. The Black Foot Indian Nation gave me the name “Princess Flying Woman.” I believe they knew that I wanted to. touch all Americans. For the time thatis mine to serve as Surgeon General, lam absolutely committed to make a difference. Fam making these confessions to warn vou. I did not accept the responsibility for this Healthy Children Ready to Learn Initiative for reasons of status. Tam as serious as vou are. Tsee our task as improving the health and welfare of our Nation’s children in every way we can. By attending this Conference. vou have made an excellent commitment on behalf of other parents and children from your State, and for that commend vou. I urge you to participate fully in the panel sessions and discussion groups. We are here to teach and to learn from one another. We are going to, as the kids sav, “get real.” I know that any of vou here would jump from vour seat and take off in a dead run to grab a child from the path ofacar. You would shield a child about to be hurt. You would endanger yourself to protect a child from a dangerous fall. When it comes to health and education, we need a dead run; we need total intuitive conviction to remove everv barrier and to reach everv child. This Conference is geared to be that “dead run.” When I was appointed I vowed to speak for all of the children. I vowed to be the Surgeon General for all Americans, especially for all American children, whether rich or poor, African-American, white, Hispanic, Asian Pacific Islander, or Native American—whether docu- mented or not, from the President's grandchild to the child of a Migrant worker. All our children need this attention, but there are some who especially need my voice. One in five American children lives in poverty: I speak for them. Thirty-eight percent of Hispanic chil dren live below the poverty line; 43 percent of all African-American children live in poverty. I speak for them, too. In the words of the Chilean poet, Gabriela Mistral: Many of the things we need can wait; The child cannot. Right now is the time his bones are being formed, his blood is being made, and his senses are being developed. To him we cannot answer ‘Tomorrow: His name is ‘Today.’ Today, as parents, you are both the expert and the student, and I ask all experts today to think also as parents. Byall means, play both roles. By the year 2000, chances are that any one of us may be only a distant memory. Itis my sincere hope, however, that our true legacy will be evident in the children who will benefit from our collective efforts. They will be children who started school healthy and ready to learn, children who learned and learned well, children whose parents taught them first and set the stage for the teachers who followed, children who were immunized and well nour- ished, children who have had all that America can give. The time has come for me to turn the focus back on vou and ask all of you within this room to work together. We have a precious opportunity to spend 3 days at this Conference to think, argue, forge new initiatives, prioritize, and get involved. It is my fervent hope that the goals of this Conference will become a blueprint for bonding education and health—an essen- ual task, if our children are to succeed. I wish vou the best in vour endeavor. God bless vou all. Report of the Surgeon Generals Conterence 25 . Parents Speak Out: = Summary of Parent es Work Groups Chapter 3 stealthy CHiddvtn a Parents Speak Out SUMMARY OF PARENT WORK GROUPS uring the Conference, the State Parent Delegates attended work groups to which they were assigned according to the geographical regions in which they live. Native American and Migrant parents could choose to attend the regional work groups or separate work groups, which were established to ensure that their special needs or issues were not lost. In all the work groups, roundtable discussions were held to discuss three topics representing stages of families’ involvement with health, education, and social service systems: aware- ness of and entry into the systems, participation in the systems, and transitions from one program to another as families move through the systems. In their discussions, the parents examined three main questions related to these stages: (1) What is my role as a parent in this stage of working through and with the systems: (2) What are the barriers or other issues I face in this stage? (3) What are some solutions to these problems, and what are some existing model programs that incorporate some of these recommended solutions? This section details the issues raised by the parents. First, a summary of the national consensus, broken down by topic, is given. The national consensus summary contains issues raised bv several of the work groups and upon which they were in agreement. Next are summaries of the comments made by each work group (regional, Native American, and Migrant). To avoid repetition, these descriptions may not include issues contained in the national consensus. Their purpose is to highlight the issues that were of particular concern to the specific work group rather than to provide an exhaustive list of issues discussed in each work group. 28 Parents Speak Out for America’s Children Report of the Surgeon General's Conterenve 29 National Consensus Awareness Systems Roles and Responsibilities of Parents * * * * Identify their children’s needs Interact and communicate with their children on a daily basis Consider themselves equal partners with profes- sionals who also care for their children Participate in networks and support groups Barriers and Issues of Concern * * * * Confusion about the systems due to limited avail- able information or contradictory information Too much “red tape” Cultural insensitivity and communication barriers Poor attitudes and intimidating behavior of ser- vice providers Poor pay and lack of incentives for providers to accept Medicaid Inflexible hours of programs, clinics, ete. Transportation problems/inconvenient locations of service facilities Inflexible criteria for eligibility to receive services Lack of accountability within the svstems Inadequate funding of needed services of and Entry into Health, Education, and Social Service Solutions * * Universal application form to apply for an array of services, such as WIC, Head Start, Food Stamps, etc. One-stop shopping, with assigned resource coor- dinator for each family and provision of service directories, including toll-free hotlines Flexibility in criteria to establish eligibility to re- ceive services Convenient operating hours for programs and facilities Elementary school curricula in social compe- tency and parenting skills Funding for support groups for families Mechanisms within the systems for establishing accountability and for halting complaints Rotation of service-provider staff to prevent em- plovee burnout An awareness campaign to promote the impor- tance of healthy children Development of a national health care policy Participation in Health, Education, and Social Service Systems Roles and Responsibilities of Parents * Become empowered and become role models for their children and other parents * Serve as advocates for their children, for other parents in the systems, and for the programs that provide services to them * Be involved in program activities and work with service providers in meeting their children’s needs 30 Parents Speak Out for America’s Children * Train service providers in their culture and unique * family characteristics Be involved in program decisionmaking and in evaluating services Barriers and Issues of Concern * Bureaucracy, inflexible hours, and transporta- tion-problems * Gaps in services * Lack of coordination among services * Lack of a family-centered philosophy . * Insensitivity not only of service providers but of the public at large * Lack of incentives for families to become inde- pendent * Rigid eligibility requirements * Inequities in funding for education * Frustration with the systems * Hesitation in confronting the systems * Need for support groups Solutions * Training in parenting skills, beginning as earlv as elementary school * Improved communications among service agen- cies and central community resource clearing- houses {one-stop shopping) * Paid positions for parents on boards that oversee programs : * Employment policies that support families, such as family leave ; * Secure and increased funding for programs * Media campaign to improve public opinion of families receiving services * Election of government officials who support families * Expansion or adaptation of model programs to reach more commutnities and families Transitions Through Health, Education, and Social Service Systems Roles and Responsibilities of Parents * Be active participants in the transition process * Be good recordkeepers | * Demandrespectand develop self-esteem for them- selves and their children Barriers. Families Face During Transitions * Lack of communication among programs and the need for one-stop shopping * Failure to receive copies of children’s records; records that contain technical jargon or that are not translated into parent’s native language * Lack of sensitivity * Lack of consistency in parental involvement across programs Need for support groups Too much paperwork Transportation problems Inflexible programs and facilities Lack ofemplovment policies that support families + + + Hh MH OH Abolishment of programs because of unstable funding * Be a good role model for their children and for other parents * Define the role of parents for professionals in the systems Solutions * Tollfree hotlines and resource directories * Sensitivity training for service-provider staff * Mentoring of new parents in the programs by system velerans * Guidance for parents provided by doctors. hospi- tals, and other service providers * One-stop shopping and assignment of one case- worker per family for all programs * Reform of eligibility requirements to consider net pay. examine hardship conditions, and provide a safety net * Legislative action, such as family leave policies * Assertiveness training for children by their parent Reportot the Surgeon Generals Conference 31 Awareness of and Entry into Health, Education, and Social Service Systems The parents willingly accept their responsibility as the primary provider of their children’s needs. However, they also acknowledged that everv family needs help occasion- ally. Federal, State, and local programs can support informed parents who enroll their children into these programs, Unfortunately, lack of information, bureau- cracy, and inflexibility in service provision prevent many families from benefitting from these programs. The parents maintained that programs must be coordinated under the one-stop-shopping approach to supply flexible and accountable service. Roles and Responsibilities of Parents The delegates recognized that they must first identify their children’s needs. Children need to be immu- nized, given a proper diet, nurtured, taught self-respect and respect of others, taught learning skills, provided with a safe, stable home environment—the list is long, covering the full range of physical, emotional, and spiritual development. No system of health, education, and social service professionals can take the place of parents in the home. Parents must take the time and effort to know their children. Federal, State, and local programs can serve only a supporting role as parents struggle to raise healthy children. Daily interaction and communication with children iskey. Good parents listen to their children, notonlywhen they complain or are sick but also at other times. Parents with special needs children must make an additional effort to maintain balance within the family and to devote attention to healthy siblings. All children, however, can benefit from existing Federal, State, and local programs, and parents must take the second step of finding out what the programs are and what they have to offer toward meeting their children’s needs. There is no substitute for the well-informed parent. The delegates maintained that parents should consider themselves partners on equal footing with 32 Parents Speak Out for America's Children professionals and other care providers and be recog- nized as such. Parents who know their children’s health needs and risks and the services available to support them make self-confident parents who can work effectively with care providers. While respecting the judgments of professionals, parents should not surrender the decisionmaking to them; when profes- sionals give advice that seems questionable, parents should trust their own instincts enough to seek second opinions. As advocates for their children, parents should be assertive and persistent but should not forget to be diplomatic. The way they interact with care providers will influence how their own children behave toward others. Good partnerships are respect- ful partnerships. the place of parents in the home. Finally, the delegates agreed that networks and support groups are a tremendous asset. Parent networks can provide information, moral support, and hands-on care, and can make up for some—though certainly not all—of the failures of the present health care systems. Networks can help parents at all stages of their children’s health care, but most ofall in the entry stage, as they make their first tentative and sometimes confused steps into the programs. When an individual family questions a profes- sional opinion, networks can supply alternative sources of information; when the family doesn’t know where to turn or what step to take next, networks can point the way. Networks allow parents to draw from the shared experi- ences of other parents and work together toward common goals. Not all parents entering the programs know their rights, and networks give them the opportunity to learn and exercise their rights in an unthreatening environ- ment. Networks are effective in this wav because thev teach by example. Networks can also help parents learn their respon- sibilities. Notall parents are responsible parents. While it is important that parents raise their children as thev see fit, some fail to recognize that their children have special needs. The children mav be physically healthy but have learning disabilities or behavioral or emotional disorders, and their needs mav pass unnoticed. The parents may have alcohol and other drug problems or problems that lead to child neglect or abuse. These parents may deny that problems exist. Thev may be reluctant to seek help because they believe it is shameful to do so. Professional health care providers can inter- vene in such cases. However, professionals are often perceived as threatening and, asa rule, are less effective than parent networks in these especially difficult cases. Troubled parents are more likely to listen to other parents and to perceive them as partners rather than as authority figures. The other parents can, in turn, seek guidance from the rest of the network as it shepherds the family into the health care systems. Barriers and Issues of Concern The most often cited problem of parents being aware of and entering programs was confusion about the systems. To many parents, the systems seem designed to discour- age them from the start: To withhold information and frighten them away with paperwork. No single source of information on the many available resources exists, and information provided is often contradictory. In addition, many employees of the programs don’t even know how the systems work, nor do they know how to access the information that can help parents find their way. The amount of red tape is enormous: application forms are long and complicated. To make matters worse, different agencies have different application forms, and parents are forced to repeat the same com- plicated procedures as they try to move from one agency to another. As one parent stated, “The paperwork doesn’t flow.” In addition, application forms make no allowances for the diversity of applicants. Parents who are not native English speakers often have great difficulty trving to make sense of the forms. Even fully fluent English speakers make this same complaint. No allowances are made for cultural differences or for the communication styles of minorities. Alternative services for the blind and the hearing impaired are also lacking. Manv delegates complained that the attitudes and behavior of social service workers and health care pro- viders can be patronizing, unfriendly, intimidating, and sometimes even abusive. They believed that a great many social service workers suffer from employee burn- out. Workers are not sensitized or properly trained, and they therefore bring their prejudices to the workplace. Parents entering the programs feel this most strongly, while those at later stages come to expect a certain degree of mistreatment as part of the price they must pay in exchange for services. “It’s hard to get into the system, and once vou get in, vou don’t want to stay,” stated one delegate. But their needs force the parents to stay, with the result that they come to feel as trapped by the systems as by the needs that brought them to seek help in the first place. As for health care providers, their attitudes and behavior tend to reflect their own unhappiness about how poorly they are paid for the services they provide. Medicaid, for example, pays providers so little that they have no incentive to take Medicaid patients. Asaresult, the patients often receive inferior care or are refused care outright. Ultimately, the patients are the ones who suffer from inadequately funded programs that fail to deliver on their promises. The health care centers themselves often presenta variety of physical barriers to disabled children. Another concern was the lack of flexibility in office hours. Social service and health care providers Report of the Surgeon General's Conference 33 who hold 9-to-5 office hours are making no allowances for working parents. The working parent who has to leave work—losing a morning. an afternoon, some- times a whole dav in the process—to meet these inflex- ible hours may be at risk of losing his or her job. This situation, in turn, may put the child at risk of forgoing important preventive medical services such as immuni- zations and well-child checkups. Transportation is a related problem. Parents often have to take long hours away from their jobs because thev have to travel long distances to their appointments, and they often have to rely on either public transportation or help from friends. This prob- lem is particularly acute in remote, rural areas. The delegates expressed unanimous dissatisfaciion with eligibility criteria. The criteria are artificial and inflexible. They do not reflect real income—net income, after taxes—and applicants can be denied entry into programs if their income exceeds the criteria by as little as a few dollars. A family may meet the criteria one vear, only to be disqualified the next because ofa slight rise in 34 Parents Speak Out for America’s Children income. While the eligibility criteria are meant to prevent abuses, the criteria themselves often foster dependency. In many cases, a family can benefit in the short run— qualify for Food Stamps, for example—if one of the parents quits a job so as not to exceed the eligibility criteria. Quitting a job can actually mean more food on the table. Under some welfare programs, a familv can qualify only if the father leaves home. “You learn to play the game,” one parent said. Parents take these steps, not because thev are lazy or cynical but because thev have immediate needs and feel thev have no other choice. However, the choices they make often mean that depen- dence on welfare programs is handed down from genera- tion to generation. Parents who try to make this point with social service workers feel even more frustrated. They face a bureaucracy from the moment they enter a program, and they either adapt to the bureaucracy or go without services. If thev feel they are mistreated, they have no one to turn to within the systems. They see a general lack of accountability and are often afraid that if they protest, they will be denied services or subjected to further mistreatment. Inadequate funds are an underlying problem for all programs. Because there are simply not enough dollars to go around, programs serving the same com- munities are forced to compete for the same dollars. This competition creates divisions within communities, and the rifts are often felt in the parents’ networks. Parents will naturally fight for the children, but when they are forced to fight other parents, the real losers are the children. Solutions to Promote Awareness of and Entry into Systems First among the proposed solutions was a universal or near-universal application form for all services, with consistent eligibility criteria. The form should be easy to read. Alternate versions of the same form should be made available to parents who are not native English speakers. Special arrangements should be made for the blind, the hearing impaired, and applicants with low literacy levels. There should be a single point of enuv for all services, i.e., one-stop shopping. When families enter the bureaucratic maze, they should be able to consult a single source for comprehensive information on avail- able services and referrals. A resource coordinator should be assigned to each family, and the family should be provided with local, State, and national directories of available services. Toll-free hotlines for resource information would be a useful supplement. Eligibility criteria need to be more flexible. The criteria should be based on real (net) income. Inflexible criteria often foster dependence on the svstems, as par- ents quit jobs or avoid seeking employment and fathers leave households so that families can meet eligibility criteria. Greater flexibility will promote self-help. Agencies must also have flexible working hours— not just 9 to 5—in support of working parents. Many parents risk losing their jobs if thev have to take time off from work to meet appointments with care providers. Programs should be institutedin elemen tarv schools to develop social competency and parenting skills and to help train children to be effective parents and advocates for their own children someday. The characteristics taught should include selfesteem, problem-solving and decisionmaking skills, and respect for others. Funds should be made available to help create and maintain support groups. Support groups are popular: they encourage parents to take a more active role in raising their children; they develop parenting skills; and, because they promote self-help, they can actually lighten the burden of social service systems. As one parent stated, “The best program is the program that doesn't cost anything,” in other words, that encour- ages independence. Support groups are the closest known approximation to that ideal program. They can be developed at the neighborhood level, at the work- place, at schools, or within the tribe, and they can be tailored to anv number of specific needs. Parents need a way to talk back to the systems. Parents are partners with service providers, and the true beneficiaries are the children; when the partnership breaks down, the children pay the price. Parents should be treated compassionately and with respect. A mecha- nism should exist by which parents can submit evalua- tions of the services thev receive and register complaints when necessary. Complaints should be addressed in a timely manner. The bureaucracy must be more ac- countable, and accountability must be on site to be effective. Parents who have been recipients of programs should serve on agency advisory boards. Many delegates expressed the belief that em- ployee burnout is responsible for much of the rude treatment parents receive. The delegates suggested that rotating employees to different posts within agen- cies could help prevent burnout and would certainly result in better informed employees who can then pass their knowledge on to needy families. An all-out effort needs to be made to raise public awareness as to the importance of healthy children. Antismoking and AIDS awareness campaigns have proven effective; children should be the next focus. Together with a media campaign on children as an investment in the future. this county should initiate an cnergetic debate on our national health care policy. Report of the Surgeon General's Conference 35 Is health care aright or a privilege? Is health insurance a right or a privileges We cannot expect to move forward on particular solutions without defining our values and goals in specific, practical terms. Participation in Health, Education, and Social Service Systems As families participate in health, education, and social service systems, parents must seek education for them- selvesand become empowered, the delegates maintained, so that they can become role models for their children and for other parents whose families need services. Fur- thermore, programs should offer incentives for parents to become empowered and for their families to become independent. Programs need to become family centered, and parents need to be involved in program decisionmaking to keep programs focused on providing quality service to meet families’ needs. Roles and Responsibilities of Parents The delegates agreed unanimously that the parents’ PARTICIPATION primary role of nurturing their children does not change as their families participate in health, education, and social service systems. Parents of children who receive services do not relinquish their role as the primary advocates for their children and as the parties respon- sible for ensuring that their children’s needs are met. On the contrary, the delegates expressed that participa- tion in programs brings added responsibilities to the parents. The delegates contended that parents in families receiving services have an even greater respon- sibility to become empowered themselves so that they can empower their families. They stressed that parents must seek education, when necessarv, and good mental health; they stated emphatically that parents have the responsibility to be “emotionally and socially straight.” As parents become empowered, they become role mod- els, not only for their children but for other parents in the community. 36 Parents Speak Out for America’s Children An important function of parents whose children receive services in serving as role models is to reach out to other families and enlist them into the programs. When new families are enlisted, declared the delegates, these parents have a responsibility to help orient the new families in the programs by providing them with information and offering their support. In this way, parents serve a dual advocacy role—for new parents, by offering their support, and for the programs, by publi- cizing their services and being committed to them. This commitment may involve lobbying for endangered pro- grams. As parents serve as advocates and network with other parents, they can build community support for families. As one delegate stated, “Empowerment of families happens as a result of education, support, and working together.” Working together, the parentsinsisted, also means working with the service providers. Parents can sup- port the efforts of professionals working with their children by being involved with the programs’ activi- ues and offering supplemental exercises at home. Parents should ask teachers or other care givers for activities that thev can use at home. Working together for the children’s benefit can build trust among profes- sionals and parents, with the result that service provid- ers may begin to view parents in the manner that they so fervently desire. i.e., as experts where their children “Empowerment of families happens as a result of education, support, and working together.” are concerned and as respected partners in providing for their health and education. Parents also have a responsibility to train service providers in the culture and unique characteristics of the families thev serve. Onlv the parents can educate the community about the special problems of minority families. for instance. Programs must understand the communities they serve to adequately meet their needs. Repeatedly, the delegates insisted that. as respected partners, they should have a voice in the programs that serve their families. They contended that, because thev have a vested interest in the quality of service, thev should be involved in all aspects of the programs, from program design to budgets and hiring decisions. The parents’ role should extend from planning and implementing pro- grams to evaluating them and their services. After all, the quality of services affects the parents directly: they are the first to know when needs are not being met. Barriers to Participation and Issues of Concern On the topic of participation in health, education, and social service systems, parents reiterated many of the complaints that thev had expressed concerning aware- ness of and entry into the svstems. The frustration with the systems does not end when families become in- volved, they stated, citing the same difficulties in obtain- ing information, inflexibility in hours and services, transportation problems, and language barriers. Nor does the amount of “red tape” decrease once a family is participating in the programs. Stated one delegate, “Bureaucracy often discourages participation.” The delegates were also concerned about gaps in services, which service providers often do not address directly but instead “pass the buck,” sending the family from one provider to another in search of the needed service. The supply of services is often inadequate to meet the demand, resulting in long waiting lists or the use of quotas. For instance, the lack of affordable daycare was a problem cited by many delegates. The delegates attributed many of these problems to two principal factors: lack of coordination among pro- grams and the absence of a family-centered philosophy. Coordination and collaboration among programs would facilitate the identification of gaps in services, as well as duplication, so that resources could be used more efficiently to meet the needs of clients. The implemen- tation of a family-centered philosophy would ensure that programs would provide parents with the necessary information, would have flexible hours, would be con- veniently located, and would consider their families’ cultural and language backgrounds, not only in their printed materials but also in their policies and proce- dures. The delegates also stated that leadership is lacking at the Federal and State levels, resulting in a resistance to such changes in the systems. The insensitive attitudes of service providers often extend to the public, the delegates maintained, leading to a “national psychology” that looks down on parents receiving services. Delegates shared the embarrassment of themselves and friends created by comments that other customers in checkout lines make regarding their use of Food Stamps. The delegates want the general public to know that parents whose families receive services care about their children and that their misfor- tunes can happen to anyone. “Our country is not segmented into welfare recipients and the rest of us,” one parent insisted. In fact, most people in this country benefit from some kind of public funding, for example, farm subsidies. As we improve our attitude toward families receiv- ing services, the parents countered, we must not let them become apathetic or complacent, with the result that they are dependent on the systems. The delegates repeatedly said that the systems need to offer incentives to parents to become independent. Often, they said, programs provide a quick fix for crisis situations without addressing the underlying causes. True healing cannot begin, they said, until the systems provide a holistic approach to treating family problems. As one parent said, “There is a sense of futilitv on the part of some families, a lost sense of what they could be reaching for and what thev might achieve.” Some delegates complained that middle-class children often are “squeezed out” or “fall through the cracks” between programs because the families are not Report of the Surgeon General's Conference 37 eligible for services: vet the parents cannot afford to provide for more than the child's basic needs. Health care, for instance, was a major concern; the delegates reiterated that every family has a right to adequate health care. Once again, the parents criticized the rigid eligibility requirements. This situation also extends to education, they maintained. They contended that inequities in funding in the local school districts automatically precludes “equal education for all,” and middle-class children often are not eligible for special educational programs. They urged that these funding inequities should be addressed. Finally, the parents expressed again their frustra- tion in confronting the systems to achieve positive changes. Even parents who are actively participating in systems hesitate to make waves. Said one parent, “If vou act assertively, vou are isolated.” Thev reiterated the need for family support groups and funding to organize them. All of these problems can be overwhelming for PARTICIPATION parents at times. One delegate summed up this senu- ment with the following remark: “The children are our future, and it’s scary.” Solutions to Facilitate Participation Although the problems may seem overwhelming, thev are not insurmountable, the parents stated emphati- cally. They recommended taking steps in the following areas to begin to break down the barriers to producing healthy children ready to learn. First, the parents advocated that training in parenting skills should begin early, before a youngster becomes a parent herself or himself. They pointed out that our young people receive limited training, at best, for their mostimportantrole. Mostofus follow the parenting stvles of our own parents, but not everyone is fortunate enough to have loving and nurturing parents, Early training in parenting skills is imperative. The parents stressed that, for parents who need services, improved communications among service agen- 38 Parents Speak Out for America’s Children cies would solve many problems. Improved communi- cauons would facilitate entry into and participation in programs because service providers would be able to guide families to the most appropriate program to meet their needs. The delegates recommended cen- tral community resource clearinghouses. Such clear- inghouses should be staffed with culturally sensitive employees, should provide the paperwork to apply for services (preferably through the use of the universal application form), and offer flexible hours. Such a facility would lead to better coordinated services and a reduction of gaps and duplication in services. It would “Thereis a sense of futility on the part of some families, a lost sensé of what they could be reaching for and what they might achieve.” be a first step toward implementing a one-stop shop- ping approach. In addition, the delegates recom- mended that resource hotlines be established, that directories of services be published, and that each communit’s telephone directory include a directory of local services and resources. To move toward a family-centered philosophy in the svstems, the delegates recommended that parents be elected or appointed to the boards that oversee programs. Through their positions on the boards, the parents could offer input, not only in planning but also in evaluating the programs that serve them. Parent input would keep the programs focused on the bottom line: providing quality service to meet the needs of families. The delegates added that parents should be compensated for their work and the expertise thev would bring to the planning and evaluation processes. Without compensation, they asserted, the parents would find it more difficult to gain the recognition they de- serve as respected partners. Employers also need to recognize the importance of families and develop policies accordingly. The del- egates expressed a need for flex-time so that they can more easily attend to family matters. The work groups universally endorsed the passage of a family leave act. Thevalso recommended that emplovers support daycare centers for their emplovees. Secure and increased funding for programs to ensure their continued existence would also improve participation in the systems, the delegates maintained. Funding is particularly important for parent support groups. In addition, the delegates recommended that funding mechanisms for education be changed. Fu- thermore, they recommended overall reform of the educational svstem. The delegates urged thata “national psvchology” be developed acknowledging thatall children and fami- lies have the right to certain basic supports for their health and well-being. This attitude can be achieved through the media. One group maintained that the Surgeon General’s Office “has the power” to change public opinion through an advertising and public rela- tions campaign stressing this concept. Television spots could show a respectful approach to families applying for services. Another aspect of changing the national attitude is to elect officials who actively support families. The delegates urged that Americans become involved polit- cally. Ifwe are to solve many of the problems facing our families, they said, we must have committed leaders. Finally, the delegates asserted that we have model programs that show us what works. We should adapt local model programs to other communities and expand model programs for special needs children to fit all children. Elements of the most cited model program, Head Start. could be incorporated in the primary grades, for instance. Transitions Through Health, Education, and Social Service Systems All parents and children experience transitions. The Parent Work Groups agreed that parents, agency offi- cials, and community people all have roles and respon- sibilities in the successful transition of children through health, education, and social service programs. Being ready to learn, they said, is more than making children ready for schools, it’s also making schools ready for children, Thev concluded with what they called the “rule of the three C’s,” which they said drives successful transitions: Consistency, continuity, and coordination of services are all necessarv to promoting healthy chil- dren—and families—readv to learn. Roles and Responsibilities of Parents During Transitions As they discussed parental roles and responsibilities in transition, the 12 work groups centered their thoughts on the following question: How do we, as parents, TRANSITIONS ensure a smooth transition from birth through infancy to early childhood to being healthy and ready to learn for entering school? One response was sounded repeat- edly: Parents need to be active participants in the transition process because they are the best evaluators of their children’s needs, including health and special equipmentneeds. To participate in transitions, parents must be prepared for the transition process. A transi- tion from one program to another requires adjust- ments for both parent and child. Therefore, a smooth transition begins with the transition of the parent. Examples of ways the delegates have participated in transitions and prepared their children for them in- cluded touring a new school or health facility with the child, introducing children to new people to acquaint them with new teachers or specialists, and learning a program’s daily routine and talking to children aboutit before immersing them in it. The groupsall agreed that making these preparations for any transition is impor- tant to evervone’s well-being. The parents recom- mended that health providers. school administrators, Report of the Surgeon General's Conference 39 and service providers develop transition resource manu- als concerning their programs and services for families. Agreement was unanimous that parents must be good recordkeepers in order to make successful transi- tions; the parents must also ensure that records are transferred when a child makes a transition out of one health, education, or social service program or system and into another. These records, the delegates pointed out, include financial records for program eligibility, medical records for immunizations and tests taken, and school records for credits. During transitions, as well as in other stages of working with the systems, the delegates said parents must demand respect and develop self-esteem for them- selves and their children. To help ensure children’s self-esteem during transitions, parents must make sure the children know their feelings about transition are important. Some parents have a special responsibility for developing the self-esteem of their children and making transitions smooth. Parents with children in A eS special programs, for example, must make sure they don't fall prev to the stigma that others often create when children need more than usual services. The parents complained that practitioners do not value parents as human beings. They were critical of people administering health, education, and social service pro- grams who sometimes act as though thev own the children. Phrases such as “parents are professionals, too” and “label cans, not kids” were voiced throughout the conference. The delegates agreed that parents need to be good role models, and becoming good models sometimes means finding good models for themselves first. It also means that parents need to watch out for other children in the community, and teach better parenting skills to parents who don’t adequately fulfill the role of parent. As the conference was ending, one delegate com- mented, “I thought I was a pretty good parent when I came here. But with all I’ve heard and learned here, I know I'll be a better parent in the future.” The other delegates agreed with this sentiment and added that the 40 Parents Speak Out for America’s Children Conference has given them anew role: They have been charged with the responsibility of returning to their communities to meet with officials of programs that affect their children and to define the role of parents for the professionals involved. Barriers Families Face During Transitions To open a dialog on barriers to successful transition, the delegates focused on one question: What makes it difficult for my child and me to move from one program to another? One universal need for making transitions more successful was for parents, providers, and government officials to improve communications. The parents felt that better communication among agencies would de- crease turf wars, prevent duplication of services, and promote the continuity of services. The delegates voiced concern that, too many times, they have found that professionals in office A don’t know what programs are available through office B—even when A and B are under the same umbrella agency. The parents pointed out that one-stop shopping is just as important for smooth transitions as itis for entry into programs. They also called for development of one universal applica- tion form for a variety of public assistance programs, such as WIC, AFDC, and Food Stamps. They insisted that transitions would be smoother if files were tracked through a computer svstem that is accessible to staff in all State programs. Parents said they need to receive the reports written about their children so that thev can assume the role of recordkeeper. Butifreports and other program materials are to be useful, they cannot contain technical jargon. Instead, they must be written in the language of the parents. That might mean having materials in foreign languages for parents who do not speak English or having them developed as picture books for parents who are illiterate. One delegate told of a Spanish- speaking mother of a mentally retarded girl who at- tended public school. For 4 years, the mother did not know about the child's educational progress, problems, or needs because everything she received from the school was written in English. and none of the school staff spoke Spanish. Parents repeated that. during transitions (as in other phases), program materials and staff must be sensi- tive to all different tvpes of cultures; thev must be sensitive to social and financial status, too. The delegates com- plained that case workers tend to stereotype and pigeon- hole people, too often ignoring clients’ backgrounds and histories. Successful transitions, the delegates said, de- pend on everyone involved trusting each other; inappro- priate communications do not breed trust. Another universally noted need was for parents to be involved consistently during transition. Parent boards that are proportionately representative of eth- nic, racial, and cultural differences give all parents an important voice in program design and policvmaking, which can help them prepare their child for transition. After transition occurs, parents still need to be in- volved. The parents repeatedly cited Head Start as a good example of a program that keeps parents in- volved; but after Head Start, parents need to make an extra effort to stay involved in their children’s other educational opportunities. The delegates said that support groups are needed even more during transitions, and they advocated that programs work with support groups to make transitions more positive. But even if support groups are not available, delegates said programs should provide coun- selors to help get parents involved and to prepare them for transitions into and out of programs. Once again. the work groups cited a need to decrease the time parents spend on paperwork by developing less complex forms. In addition, delegates said agencies must be directed to reduce the time they take to decide an applicant's eligibility. Implementing these changes would help families make more timely transitions and provide more motivation for families to move from one program to another. Delegates from small towns everywhere pointed out that families in rural America often have no re- sources in their hometowns to meet some children’s health, education, or social service needs; travel dis- tances to available providers can be long, and public transportation is seldom available. If transitions are to be successful, programs need to be as flexible as program administrators expect the fami- lies to be. Flexibility should begin with program eligibility criteria and then continue to the program structure and facilities. Many delegates remarked that family and indi- vidual needs still exist when income levels change, but eligibility criteria are often too rigid to accommodate the transition. Too often, the parents noted, agencies over- look the need for their offices to be open when parents can gain access to them, after traditional business hours or on weekends, for example. A story from one delegate, the mother ofa child with physical disabilities, documents the need for flexible facilities. The child’s classroom contains a restroom. However the delegate’s son, who uses a wheelchair, and his attendant were not allowed to use these facilities because he requires more time than the other children. They had to go across the school gym toa communal restroom because the teachers didnt want the other children waiting in line for the boy. Some flexibility in the program would have made him feel more welcome and comfortable. and it would have made his transition to the classroom much more postive. Report of the Surgeon General's Conference 414 Labor laws need to be enacted to make emplovers more considerate of the needs of people with children, particularly poor working parents. One parent del- egate surprised even her understanding colleagues when she told that her employer, a hospital, would not give her time off to come to the Surgeon General's Confer- ence; she had to deduct the Conference from sick and vacation leave, which she also uses when her child has a medical appointment or a day off from school. Parents reported that they and their children are constantly facing new transitions. They suggested that some of these transitions and their associated problems could be eliminated, if all levels of government would stop the frustrating practice of abolishing programs that families depend on without notice. Unstable fund- ing from all levels of government is another frustrating barrier parents hurdle during transitions in health, education, and social service programs. The parents felt strongly that funding should not be based on grants or time limits. Solutions, Resources, and Partnerships for Improving Transitions As in the other stages, improved communication dur- ing transitions was one of the most often cited needs, and parents repeated their suggestions of using 800 numbers for information clearinghouses and hotlines, especially for State program information, and creating local phone directories for resources or computer data- bases that would be updated yearly with current infor- mation on various programs. Some delegates noted that hotlines need to have bilingual operators who are representative of the calling population. One delegate commented, “Where’s 1-800-MEDICAID: There's no trouble finding 1-800-SEX.” To address the need for culturally relevant pro- grams and culturally sensitive staff people, the del- egates suggested that professionals, particularly the first points of contact in a program or service, be given sensitivity training so they know how to avoid offending 42 Parents Speak Out for America’s Children people from various ethnic backgrounds, social classes, and financial means. Parents said they could use guidance through the health, education, and social service systems. One such guide they proposed was using system veterans as men- tors for new parents; these veterans could become personal mentors or could develop resource manuals that parents new to programs would receive for assis- tance and advice. They could also encourage new parents to seek out community-based groups, particu- larly support groups. Doctors and hospitals could provide guidance to parents through expanded prenatal and parenting train- ing. They could also distribute information and do outreach for State and community programs through packets that would be given to every parent of a new- born. Service providers could assign a full-time staff person to help people with transitions into and out of the program or service. A number of regions discussed total community ownership of programs as another solution to promoting parental involvement. In other words, programs have to be familiar to evervone in the community, not just parents. It is also important to involve parents in evaluation teams for clinics, schools, and social service agencies. The delegates found no shortage of solutions, either, for how to decrease paperwork and modernize programs. As was previously discussed, every work group advocated one-stop shopping, sensible hours that fit parent schedules, and the use ofasingle form for several assistance programs. Likewise, many parents proposed that one case worker be assigned to work with a family for all public assistance programs, rather than one worker for each program. This practice would allow families and case workers to develop a more trusting relationship and would reduce duplication of questioning and processing. The delegates also offered more solutions to the problem of rigid eligibility standards. The delegates suggested thatassistance programs base their decisionson take-home pay, not gross income. One mother said, “If] brought home my gross pay, I wouldn’tneed the services.” The delegates also suggested that the Government de- velop hardship deductions that would be used in calculat- ing eligibility for services and programs. Another call was for a safety net for families who don’t alwavs fit within the parameters of assistance programs but are needful of help, even fora short time. An example of sucha situation came from a southern delegate who told that she was living in the north when her doctor said her child was dving and needed to live in a warm climate. She and the child moved to Florida, but the father, who couldn't find a comparable job in Florida, staved in Michigan. The woman applied for some assistance but was told she wouldn’t be eligible unless she first filed abandonment charges against her husband. All work groups discussed legislative solutions and regulatory relief to some of the barriers to successful transitions. One remedy, the delegates agreed. is that parents have to support and elect family advocates at all governmental levels. Another recommendation is for the Government to simplify application and eligibility re- quirements. A third solution involves getting parental leave bills passed; they have been proposed but now they must be enacted so that parents, especially poor working parents, can have time away from their jobs without being penalized when a child needs to see a specialist or go to an interview for a new educational program. A number of delegates expressed concern that laws supporting families have been enacted butare not being enforced, at least not everywhere. Delegates from New York, New Jersey, and Puerto Rico, for instance, made a laundry list of needs that delegates from the Virgin Islands said their territorial govern- ment is addressing through the provisions and man- dates in the Education for All Handicapped Act (Pub- lic Law 99-457), which targets children aged 0 to 2 who are at risk. The parents did not let themselves off the hook as far as developing solutions was concerned. The parent- directed solutions included acting assertively on the child's behalf, teaching children their rights so they can become their own advocates, training them to be coop- erative (even when others are not), helping them un- derstand it’s not their fault when difficult teachers or caregivers can’t be circumvented, and confronting teach- ers who don’t respect children or who belittle them, especially in front of other children. Programs That Parents Grade A+ When the delegates were asked to make a wish list of what a model program would be like, succinct descriptors were given quickly. In summary, the parents said programs must be child-centered and family friendly, be easily accessible, have broad eligibility standards, be antidiscriminatory and multilingual, be well promoted, provide individualized service, be staffed sufficiently, and have hours of service that are convenient to parents. Parents also cited a number of programs that they felt were exemplary in their administration or service. Public Law 99-457, for children at risk aged 0 to 2 years, is a good example of a seamless and effective system. New parents need to be targeted for special attention. Public Law 99-457 should be expanded to benefit older children and children who do not have special needs, and should include family planning and prenatal and neonatal ser- vices. More vaccines could also be delivered through this program. Other generic programs, or those based in many States, included Head Start, school-based clinic programs, Home Instruction Program for Preschool Youngsters (HIPPY), workshops on the development of Individual Education Plans (IEPs), United Way services, Pathways to Understanding, and Family Resource Cen- ters. Local or regional programs are listed in the descrip- tions of individual work groups, which follow. The delegates offered these recommendations with the hope that many of them will be implemented. One parent concluded, “We've said all this before; is anyone listening?” Report of the Surgeon General's Conference 43 e Regional Issues portance of good prenatal care, fam- § ilv planning, neonatal screening, and CONNECTICUT Se _ early health intervention programs. . i - 7 : a To increase awareness of such pro- MAINE mo cer op ; ; ~ grams, information on the programs . 8 a should be available in public libraries. A MASSACHUSETTS 7 , _ oe catalog of available services, explaining : eligibility criteriaand benefits, would hel NEW HAMPSHIRE oe P parents as they enter the systems. The delegates rec- RHODE ISLAND ommended that application processes pe streamlined, beginning with a single application form, if possible, for all services. Application forms should be adapted to VERMONT linguistic and cultural differences. The blind, the hearing impaired, and those with low literacy levels need special attention. Social service and health care providers need to adjust or stagger their office hours for working parents. The parents’ transportation needs also should be addressed. To participate fully in the health, education, and social services systems, the delegates strongly advocat- ed that parents vote in na- al services available in tional and local elections, ¥ i y ch roness ae En ty ith, education, and so * Make ! 1 public libraries $e Streamline the 5 One ape | ours for services flexible h : xo . transportation needs jein or form networks in ices heir ities, and take anply for service . . their communities, an procedures to app 7 and cultural differences on forms to linguist a more active role in their school systems. They viewed advocacy for their . a hildren as ti , Participation scipation and advocacy fovea ahoaae ie 2 nt particip cy & Encore ES f their rights: publicize prog $¥ Inform parents © arents’ options ye Make’ service pr lik Understand the nee olicies and . . . am Pp of parenting in their rela- uionships with teachers, widers accountable e parents ds of parents, par ticularly sing} doctors, etc., and not just in the realm of leg- mental stages a elop ‘hati iti on ~ - abilities and deve islative activities. Thev “Transitions eadiness for transiaon by abilia ‘ |) & Determine her than by age amon * Naineain consistent philosophies a g i ing use # Train parents the curriculum being “+ 3¢ Train p _ supplement it oe Train providers t social status stressed that service in- programs d and demonstrate ways to stitutions need to be ic, firvanciat, and more flexible philo- . in ethn differences In € sophically so that oO be sensitive to they can be more “parent driven” and that parents should participate with schools and service providers as respected partners. For instance, parents should be allowed to attend in-service training sessions for service providers, and thev should serve on boards that direct the activities of programs. Parents should be informed of their rights as thev participate in the systems: 1e., policies and options should be not only written but also publicized. Policies that result in children being taken from their parents should be scrutinized closely. Par- ents should not be afraid to express their needs. The delegates also complained that social service and health care systems are rigid, bureaucratic. and overspecial- ized, with the result that parents feel lost within these systems, The delegates were concerned that the service providers are not accountable for the quality of service thev provide. Parents need support from the svstems and from their emplovers (e.g.. flexible hours) to participate. Providers and emplovers must recognize that parents, particularly single parents, can’t “do it all”; thev have physical and emotional imitations (such as lack of time and an abundance of stress). Parents from the New England States were con- cerned that children are subjected to transitions too often simply because their age dictates they move into a new program. These delegates felt that instead of chronological age, abilities and developmental stages should be the factors that determine readiness to move on, up, or out. Thev noted that this concern is especially important for children with special needs. Another concern peculiar to this group was that changes in philosophy among programs impede successful transi- tions. As a solution, thev suggested that schools host parent workshops that demonstrate the curriculum and tell parents how they can complement it at home. Region | delegates echoed the sentiments of most other groups concerning how programs and people must be sensitive to differences in ethnic, financial, and social status. But this group added a unique parental role to the equation: Mothers and fathers must make sure that caregivers and service providers understand and appre- ciate individual familv values. as well. Among the model programs in the New England States that the delegates cited are Elbot's Healthy RKicls in New Hampshire, which coordinates nutrition educa- tion in schools: the Upper Valley Support Group in New Hampshire and Vermont, Growing Up OK in Bristol. Vermont: Early Childhood Group in Middlebury, Ver- mont; Collaboration for Children in Massachusetts; Early Childhood Network in Aroostook, Maine; Devel- oping Capable People Transition Task Force and Child Find, both in Rhode Island. Report of the Surgeen General's Conterence 45 NEW JERSEY ie NEW YORK PUERTO RICO VIRGIN ISLANDS Indicating their commitment to finding solutions to the prob- lems discussed, the Region 2 delegates held an impromptu meeting on their own time to outine a proposal for establishing a model health, education, and social service system. The proposal calls for a Federal initiative mandating a partnership across Federal agencies, the Office of Management and Bud- get, key Congressional committees, and families representing local areas, The initiative would establish a formal structure for implementing the following principles at all local levels: * Aclient and family-centered program philosophy that emphasizes parent involvement in children’s programs, and that is accountable to the individuals served. * A creative and flexible atmosphere within the systems brought about by regulatory relief from bureaucracy and “red tape.” * The standardization of eligibility requirements across all service programs and simplification of the process for establishing a client's eligibility. *% Easier access to services provided by centralized directo- ries of services, one-stop shopping, and flexible hours. * An integrated approach to service delivery using unified case management and followup. * The rotation of service personnel and continuous train- ing and cross-training to reduce burnout and promote sharing of information across programs within the sys- tems. * Increased parental community involvement. Parents could make valuable contributions, especially for public relations, outreach to new families, and advertising of services. To promote parentinvolvement, use acommu- nity-based approach and allow for flexible work sched- ules. Seek collaboration with businesses, churches, and other community organizations. 46 Parents Speak Out for America's Children entering health, education, and so- cial service systems should network - . with more experienced parents and ~ play active roles in parents’ organi- zations. The delegates also advised ea that resource coordinators be assigned to families to help simplify the entry process and assist the parents as they learn about and access the programs they need. Application and entry procedures are far too daunting; parents can feel lost trving to enter the svstem. One- stop shopping for services was strongly recommended. Office hours must be built around the needs of working parents. In addition, agencies need to expand their public service announcements and make a greater overall effort to keep parents informed about available resources. The delegates recommended a toll-free information hotline, along with support groups and other programs designed to make parents, especially teenage parents, more aware of their responsibilities. The Region 2 delegates felt that the parents’ role in networking does not end with active participation in the systems. Parents should enlist other families into programs. The delegates also agreed that parents should have a stronger role in developing agency pro- cedures and policy. Parents need greater representa- tion on agencv advisory boards. Parents also should be involved in reforming health, education, and social service systems to benefit families. For instance, the delegates cited numerous problems with Medicaid, such as lack of physicians who accept Medicaid and long waiting lists for those who do. In addition to needed reforms in services, the delegates cited a need to change our society's attitude toward families receiv- ing assistance from the systems. They are stigmatized in the public’s perception as Jazy and uncaring, and even the social service workers often behave rudely toward parents. This situation causes high frustration levels for families who participate in programs and prevents others from participating. The delegates felt that this behavior by service providers is a symptom of employee burnout, and recommended that employees be rotated to different positions within their agencies on a regular basis. This solution would also provide emplovees with a wider range of experience and information about how their agencies work—information that they can pass on to parents. Delegates from Region 2 considered the parent’s role in transitions as acting assertively or aggressively and emphasized that it must begin as soon as a child's needs are diagnosed. It is the parent's responsibility, they said, to demand access to and information about the prenatal and postpartum care their child with special needs might require. However, to encourage parents to act assertively, thev agreed, the Nation must develop effective parent education. That education is linked to another need cited by Region 2 delegates. They wanted the Surgeon General to know that the country needs to establish an infrastructure to assist parents through their children’s continuous transi- tions. Another important issue to this group was the lack of quality control in services. They remarked that unless quality control in health, education, and social service systems 1S consistent, transitions will never be better than mediocre. Puerto Rico’s . Project ESPA (Es- \ Region 2 eT cuela Para Padres Ad- ultos, Project School for Adult Parents) was | singled out as a success- Awareness ful support group. The New York parents’ lement Foundling Hospital * Imp was also mentioned as a model program. In * Establish 4 New Jersey, the State Health Department's Catastrophic Tlness in | \ u Children Fund provides | ‘ye stance grants to families who | ass i zt 4 would otherwise be fi- nancially devastated by catastrophic illness. Recommendations rent networks * Assign resource + Simplify app * Have flexible: * Expand publi Partic ye rents to enlist other families ec * Provide for pare * Seek parent input + Seek ways to © | Rotate employees ¢ + Establish cons In addition, the Region 2 delegates recommended establishing a Federal initiative to institute a formal structure for implementing several principles in health, education, and social service systems. In implementing this initiative, the Region 2 delegates recommended the following approach: (1) linking it to America 2000 or similar program; (2) involving the private sector; (3) borrowing strategies that work from existing model programs and integrating them vertically and horizontally into community programs; (4) designating the Surgeon General to head the initiative and enlist the participation and cooperation ofall relevant Federal agencies; and (5) recruiting parents who represent the diverse communities of the United States to be the liaison between government, community, and business representatives in the initiative. The delegates recommended recruiting and organizing these parents through a national clearinghouse and compensating them as experts for their work on the initiative. ata Glance assist families dinators tO coor ; rocedures Jication and entry P one-stop shopping nours for services vs tha c service announceme toll-free information hotline ™ cee as t inform parents of propia we . ds advisory boare’s t on agency the systems j n nt involveme 7 rd families who receive for needed reforms in hange societal attitudes towa 9 avoid burnout i ildren 1f of their chi on beha nsition assist families in ta On as measures across sy nts to act assertively nfrastructure tO ; stent quality-contro DISTRICT OF COLUMBIA MARYLAND PENNSYLVANIA VIRGINIA WEST VIRGINIA Recommendations at Entry Awarenah an oaranss for teenage parents ¢ Establish spec | i hildren ‘ @ordinators for special needs ¢ nildren cates * Dictribute lists of services wit aa s i * Pass a family leave bil il | 4 Pass the fetal alcohol bi - groups i * Provide funding for support ding to preven 4 * Expand program funding 1) programs moons rt i icipation _ 1 ' Par ake programs community Oelp . x Hire recipients of Ce es oe cmaking tal involvement icyn \ Fain programs to increase sensitivity, 4 2 repent cal nee i effectively d disseminate information. more an j who * Create tax credits for parents home i f 1 1d * } : 1 1 x M: ki funds ava lable for affordable daycare ake sur ane Transitions _cevices | e Invest in preven Ove se CS on * Promote continuity of se fees | & Resolve problems on a sys a Glance Z vide reso ish bi rrier-free health care centers and pro | x Establish ba i0Us t turf battles among vario dminister services better training for wide or put decrease bureauctacys sel Vice providers mak: W *: . 7 Ly ec better USE. of reso rc es i t keep children with special needs a i x reate tax ene its LOT em oye! 0 ix ns wl ip cla p sw € perso Ss specl needs or / the systems — +. basis rather than a case-by-case tic ba importance of special programs for teenage parents to help them cope with their role as parents and to make them aware of available services. They also expressed that entryinto programs would be facilitated by barrier-free health care centers and resource coordi- nators for special needs children. To inform parents about available services, lists of services could accompany birth certificates; private doctors should always have such lists on hand. The special needs of foster children demand greater attention; medical charts and equipment for foster children with special needs should follow the children in a timely manner, Family leave would allow parents time not only to address their own infants’ special health needs, but also to help other parents and their children. While all regions discussed legislative solutions and regulatory relief to some problems families face, Re- gion 3 delegates were the only ones who discussed supporting the fetal alco- hol bill as part of the solu- urce tion to making healthy children ready to learn. This bill would prohibit restaurants, bars, and li- quor stores from selling alcohol to pregnant women. Also, because support groups are so important, funding should be provided to sustain them and cover basic operating costs, Additional funding is required to prevent turf battlesamong agencies and within the com- munities they serve. To enhance participation in the svstems, the Re- gion 3 delegates stated that programs should be commu- nity based whenever possible, administered by people who live in the communities. The delegates also recom- mended that the recipients or part-time recipients of services be hired to administer the services as well, to help bridge the gap between bureaucracies and families. Thev viewed the role of parents participating in the systems as thatofdecisionmakers who helpempower families receiv- ing services, although they admitted that the svstems do notallow for parental involvementin policvmaking,. They were most concerned about the lack of cultural sensitivity displaved by the systems, lack of training for service providers, and the negative stereotyping of recipients of services. They also complained about the svstems” bu- reaucracy and the poor use of resources, resulting in the lack of services in some areas, and the lack of information about services. The delegates from the mid-Atlantic States advocated financial solutions to parents” needs. They suggested creating tax credits for parents who keep children with special needs at home (rather than institu- tionalizing them at Government expense), creating tax benefits for emplovers who hire individuals with special needs or their parents, and making funds available for affordable daycare. The Region 3 delegates maintained that transitions would be facilitated if programs focused on prevention of problems before crises occur. Although preventive ser- vices may require a higher initial investment, these par- ents asserted, they would present significant cost savings to the Government in the long term. Thev also commented that there is a lack of continuity of services as transitions are made within the systems. Delegates told how some children with special needs were given assistive devices to help them in school but that the equipment remained the school’s property. In some cases, the equipment was not even allowed to leave the building when the child went home for the evening; even more often, a child was not allowed to take the devices to a new school]—even one in the same svstem—as he or she matriculated. The delegates warned that these policies do not promote smooth transitions for parents or children. A father from Pennsvlvania was able to add some hope to this discussion when he told how his State had bypassed the . problem with a solution that benefitted evervone. In his State. parents of a child with special needs can spend up to $1,500 annually on assistive devices such as reading boards. The parents buy the device, but are reimbursed by the State. Their child can use the item until he or she oulgrows itor leaves the State school system. Then the equipment is returned to the school, where it becomes available to another child. . This regional group also advocated that solutions must be svstemic; programs and services cannot con- tinue to respond to problems on a case-by-case basis. One parent said her child’s school had rerouted a bus so it could transport a child with disabilities. But that change in the route meant that some children rode the bus 4 hours a dav. The school responded to a particular case, not the underlying problem that it did not have enough buses accessible to children with disabilities. When another child with disabilities needed transpor- tauon, the problem had to be readdressed. The parents maintained that the school svstem should have broad- ened its solution the first ime by buying another bus and hiring another driver, a solution they felt would be cost effective in the long run. Model programs cited by the Region 3 delegates include Pennsylvania's Development Disability, which funds support groups, and the Communication Coun- cil, which involved parents as it rewrote the State-level standards for special education; the District of Columbia's Equipment Loan program, which funds equipment for special needs children, and the Parents and Friends of Children with Special Needs, a parent support group; Marvland’s Special Mothers in Train- ing, a 5-week training program for parents with disabili- ties, and New Visions, a program that uses parents as case managers; West Virginia’s Public Health Screen- ing. designed to meet the needs of parents who do not qualify for Medicaid but cannot afford health insur- ance: corporate Adopt-a-School programs: and Virginia's Department of Education /Division of Special Educa- tion Programs, which provides information on child development. Report of the Surgeon General's Conference 49 ALABAMA FLORIDA GEORGIA KENTUCKY MISSISSIPPI NORTH CAROLINA SOUTH CAROLINA TENNESSEE I |jpeaton 4 *% Develop 4 universal applic | i nity | & Establish community \ tolkfree hotline beyond assistance \\participation * Involve paren 5 Remove barriers uo and fimited hours i * Provide profession: \. qggues facing families ad * Provide job stability 2 \ Transitions il Involve pare \ 9¢ Allow famuy 1 e Recommendations at a Glanc n form i ify the entry process i ‘ , ation for and simplif \ jearinghouses, upplemented by a resource C riteria and incentives for families to move i . . “40 i * Establish flexible eligibility . «ders i service provide ces Be Pie limitations, GIS , of language. : its resources, and the ity, als who know the community affordable housing _& Establish family leave poli ite care S * Provide better daycare and respl visitation programs nis in peer erare nildren during tran ‘Wy time to yeassure C all Federal programs share a univer- _ Sal, easy-to-read application form to ~~ help simplify the entry process for nee parents. A central community re- 7 source clearinghouse, or referral cen- ter, supplemented bya toll-free hotline, could also facilitate the process for enter- * ing parents. The eligibility criteria should be the same for all programs, but they should be more flexible. Presently, the systems encourage “staving poor” to meet these rigid criteria. They stressed that incentives are needed for families to move beyond assistance. The delegates also recommended that edu- cation in parenting skills begin in junior high school. Overall, the systems would be more responsive to parents’ needs as they participate in programs if the parents had greater involvement in policymaking and especially in the training of providers, many of whom behave as though they have no sense of the worth and dignity of needy families. These families face lan- guage barriers, attitudinal barriers, physical barriers at health care centers, long distances to the cen- ters, and inflexible office hours. Working parents need special consider- ation. Asa rule, the par- ents have no choice but to adapt to the systems’ requirements, whereas, asone parentsaid, “The money should follow sitions the child, not the other way around.” They ex- pressed a need for pro- fessionals who know the community, its re- sources, and the issues facing families. The delegates stressed that job stability and good housing are critical components of health. Parents need family sick leave policies and release time to obtain the services thev need. Housing ordinances need to be enforced. Also needed are better davcare services and respite care services for overburdened parents. Several regions considered some untraditional ways toimprove communications to facilitate transitions. Region 4 delegates made a unique recommendation: Involve parents in peer group visitation programs. One mother told how her community solicits experienced parents to visit the homes of new parents and offer friendly, nonthreatening advice about programs, services, support groups, and organizations that are available to them. These visits, she added, are made to all new parents, not Just parents of children with special health, education, or financial needs. The parents from the southeastern States also pointed out the importance of families’ making time for children between transitions: evervone needs a break, they said, especially when a transition involves.a change in marital status, lining arrangements, or health care. Some model programs cited by the Region 4 delegates include Kentucky's Family Resource and Youth Service Centers, created as part of the Kentucky Educa- tion Reform Act and operated through the schools to benefit children and families at risk; the Eastern Ken- tucky Child Care Coalition, a private resource develop- ment agency that offers training and assistance to childcare providers and families; and Mississippi's Fami- lies as Allies, a network of families with special needs children. The Florida delegation shared materials on several public and private programs from their State: Infants & Toddlers; Florida's Interagency Program for Children and Their Families, which has established the Directory of Early Childhood Services, accessible through an 800 telephone number; Collaborative Adolescent Parenting Program (CAPP), an intergovernmental, in- teragency, community-based effort to support teenage parents; Family Connections, which provides services to low-income teenage parents, and Family Interaction Now (FIN), a family support program for recovering pregnant and postpartum addicts, both sponsored by the Child Care Connection of Broward County, Inc., a private, nonprofit organization that supplies Title XX childcare; Casa Madonna, an aftercare program for Hispanic substance-abusing mothers, which is spon- sored by the Miami Mental Health Center, Inc.; The Bridge, sponsored by Family Health Services, Inc., which provides a mix of services to young mothers and their children; and Project MITCH (Model of Interdiscipli- nary Training for Children with Handicaps), which provides training to parents and other care givers, through funding from the Florida Department of Edu- cation to the Florida Diagnostic and Learning Resources System/South. In addition, the Department of Health and Rehabilitative Services sponsors First Steps and the Community Resource Mother or Father Program. Report of the Surgeon General's Conference 51 parenting skills should be part of every child's schooling and that re- ILLINOIS sources should be available for the INDIANA continuing education of parents in these skills. Better parents will become a MICHIGAN stronger and more effective presence in their communities. They will assume MINNESOTA greater responsibilities in their local school systems, both in policymaking and in day-to-day participa- OHIO tion, to help counter the chaotic forces that act on children as they enter adolescence. The Region 5 del- WISCONSIN egates complained that the middle class is excluded from services. They stressed that everyone needs access to adequate health care and that our Nation should provide “equal education for all.” They pointed out that the goals of the Surgeon General's initiative should go beyond the year 2000. Other barriers to entry into the systems that thev cited are long waiting lists for services and inflexibil- itv of the systems. They rec- ommended a one-stop-shop- ‘Region 5 Reg plating lance Recommend aG ations at ping approach to services with providers who are in- ' ‘(Awareness and Entry ing skills for all children formed about available re- o x Provide training 1 poale class from services initiative beyond the sources. Thev suggested : i ° nv - ok Don’t exclude the Children Ready to Learn producing a guidebook of “Continue the Healthy year 2000 * Implemen _ & Produce 2 8 - 4n community + services and including a di- . rvices Be of local se t one-stop shopping | 4 uidebook of services 4 telephone directories wo a directory ar d include a di rectory of local services in every community's tele- phone directory. - Allow greater par® ools, social servic "Forge stronger links among sch siness * penoritize needs before spending spent “ . for how funes hiased evaluation of progr provide healing, not | x Provide a weases of families problems a x Address the C4 "pand-aid fixes” fur S$ a ake T rams ab nd nd m p og m account le a a - repare children to Transitions life skills, beginning at om early age, to PFeP "|e Teach basic lite SAU arent the next 4 t arent Appoint br. Novello as th s or cs and outreach PEO e eee cate for families inistration Ss 4 e Administl a -: : . . ice faye . 4 Participation ices with education wers for questions or to voic As families partici- be se { ans te Accompany : f arents to ge . be . ms or Pp pate m programs the de mechanss .: , _& Provide ts « nolicy decisions local deleg: asserted, ed complain nt involvement in p ? e systems, and joc elegates asserted, eqdu- cation should accompany the services rendered. They complained that the programs are not family centered, and that parents who act assertively to have their needs met are isolated. The social service system was criticized for having no built-in mechanism by which parents can get answers to their manv questions and a sympathetic ear for their complaints. The svstems are generally perceived as bureaucratic. rigid, and insensitive. Parents need to plava greater role in policy decisions and act as advisors to programs. For instance, many of the delegates felt that parents should work with their schools to explore the possibility of dress codes and establish other policies. When this group discussed the parental role of being an advocate, they commented that parents need to take this responsibility to the fullest. Thev must be involved in the school or program, know evervone from school board members to administrators to teachers, and become a presence in their child’s education. Schools, in turn, need to forge stronger links with the social service systems and local businesses. Another important issue to the Region 5 delegates was that needs must be prioritized before money is spent, that programs must be accountable for how the money is spent, and that programs should be evaluated by unbiased parties. The delegates expressed that programs must address the underlying causes of problems families face and that services should provide healing as families participate, not give them just a “band-aid fix.” The Midwestern delegates repeatedly said that par- ents need to begin at childhood to prepare their children for the ultimate transition from child to parent. They advocated reaching out to children to show them how to be parentsand to explain the respon sibilities that go along with the role. Thev recommended that schools teach basic life skills, beginning at an early age, so that children will be prepared to parent the next generation. These parents also stressed that communication among parents and between parents and programs is kev to successful transitions. They stated that strategies to improve communication should include outreach programs to draw new families and to truly affect the community. Region 5 delegates looked to the Surgeon General to be more than a partner with them in making healthy children ready to learn. They agreed that she must be the administration's advocate for families. She must be among the ranks of people who hold health, education, and social service systems accountable for ensuring that children and parents can make transi- tions between programs smoothly. Model programs cited by the Region 5 delegates include the Illinois Governor's Education Initiative, which involves parents in school policy decisions. Un- der this program, 35 communities discussed the reallo- cation of funds to allow State agencies to coordinate their efforts and develop stronger ties with the school system. Another Illinois program, Families With A Future, funds prenatal care, home visits, a children’s clinic, nursing care, and certified advisers who coach mothers as they enter the social service svstem; volun- teers provide transportation. In Minnesota, the Leave No Child Behind program funds learning readiness. Other programs in Minnesota include Challenge 2000, Parent Involvement, and Learning Readiness. The Ohio delegates cited Family and Children First, and Indiana parents praised the Indiana University Medical Center’s James Whitcomb Riley Children’s Hospital as a model for caring for sick children and supporting the families during times of crisis. Michigan programs in- clude the Latino Outreach Program in Detroit and Project Uptown, Report of the Surgeon General's Conterence 53 families should be a nationwide ARKANSAS : priority. They also strongly advo- cated regulation of the insurance LOUISIANA i -e industry. Insurers can raise rates, deny coverage, and cancel policies NEW MEXICO arbitrarily, with the result that families either cannot afford health care or have OKLAHOMA mo to enter the social service system and sometimes give up jobs and income to meet rigid TEXAS eligibility criteria. The delegates also pointed to low levels of private participation in health care services, saving that if providers were reimbursed at competitive rates, the services would improve across the board. The providers need to be better informed about available services and ready to pass that information on to fami- lies. A resource directory and a toll-free information houine in each State were strongly recommended. In addition, health care providers should be coached and sensitized by t10ns at a Glance parents who are participat- ing in and have experience with the systems. At callati of 4: arhitrary cancellaion resent, families are not Awareness and Ser. justry to prevent arbitrary ws . * Regulate the insurance I «oc py yeimbursing perceived as partners with : licies . ervices DY . health in eee participation in health care 5 providers and do not feel neonate * Encourage P titive rates d- service providers : t compe . providers 2 ink i hlish a toll-free hotline * Provide better een and es urce ) * Develop a reso respected. The delegates warned that parents with regional accents have to . s in sensitivity ovider mmunity to be the to coach health care. pre ers to 4 who are represe sa aw rvices and evaluation of Poe es a nd family needs by locating 14 a e be careful that they are * Recruit parents ! # Provide individu i oint of contact * Orient services aroun convenient locations ative \ + Allow parents mere CF +) to evaluate programs i i not perceived as less in- together in telligent merelv be- portunity . . 0 cause their pronuncia- icy input and the Op input and poli tion is different or their ‘ speech patterns are ‘ Transitions , * Maintain effectiv between parents and caregivers, slower. The point of nh e communicatlo contact for services — values. Most systems show a marked cultural insensitivity and fail to involve parents in decisions that affect their chil- dren. Social service workers need to be more compassionate, and they need to encourage the growth of community-based programs. Eligibility crite- ria need major overhauling. The criteria are based on artificial standards (income levels versus need) and lead to unfair labeling and inequities in services. Re- gional cost of living differences are not taken into account. They maintained that families who need the services most often cannot participate. Like parents in other regions, these delegates com- plained about the lack of coordination of services; duplication of some services confuses recipients and forces providers to compete for funding while gaps existin the provision of other services. Furthermore, they maintained that the distribution of services around the country isuneven. They also voiced a desire to participate in the de- sign and planning for pro- rams, including involvement in curriculum development, hiring,andbudgetdecisions.. At the same time, parents mustensure thatservice pro- viders havea full understand- ingoftheirchildren’sneeds. They also maintained that the parents have a respon- sibility to be advocates, not . only for their children but a agencies also for the programs in which they participate, and to lobby for these programs. The delegates substance from the Far Westand Pacific protectorates shared their concerns about the overwhelming responsibilities of being parents. Thev said that parents need hope to get them through daily living and especially in situations when transitions are involved. To give families hope, Government agencies and other service providers need to help them fulfill basic needs, including those for housing, health care, and nutrition. These parents also noted the lack of collaboration among agencies and the lack of consis- tency across agencies, both of which make transitions more difficult. Thev cited a need for referral persons within agencies to help families deal with transition issues. The Nation as a whole (especially all people caring for its children) needs to comprehend the ef fects of such family problems as broken homes and substance abuse; special concerns of parents who are incarcerated or unemployed need to be understood and taken into consideration when transitions are necessary. Parents have a responsibility to network and to be team players in helping to provide services, par- ticularly during times of transition. Like the delegates from other regions, this group maintained that parents must maintain information about their children, and they must prepare their children for transitions. A model program would allocate funds for parent networks, especially among minority groups; involve local media, churches, and other community organiza- tions. including police, to disseminate information; involve greater parent participation; reduce paperwork for applicants; ensure that programs and services are better coordinated; and respond to information re- quests in a Umely manner. Examples of model pro- grams cited by these delegates include the Murphy School Districtin Phoenix, Arizona; California’s Healthy Start Support Services for Children; Even Start in Blackfoot, Idaho: the Maternal and Child Health Pro- gram, Handicapped Children’s Resource Center, and Referral for Services in the Mariana Islands; and the Washoe Pregnancy Center in Reno, Nevada. Report of Ge Surgeon Generals Conterence 61 NATIVE AMERICAN FAMILIES Native American delegates iden- tified the search for information as their overriding issue. Parents with The highlighted States or areas within States are those that - special needs children feel particu- er larly rantain reservations or @ large population of Native Americans. More than 60 percent of Native Americans at a loss, and there are too few live off the reservation in both urban and rural areas. --& programs for newborns. Social service systems in Oklahoma and Montana fail to provide Native American parents with ” comprehensive information on available services, and transportation to health care centers is a serious problem in isolated areas. Supplemental foods are also hard to obtain in these areas. Non-Native American doctors and dentists often refuse to provide services to Native Americans and those who do serve Native Americans are concerned primarily with paying off scholarships and show little compassion toward or understanding of their patients. Housing, especially housing provided by the Department of Housing and Urban Development, is often inferior. These problems re- sult in and are com- pounded by problems such as a high rate of sub- Native American Families Recommendations at a Glance stance abuse among mothers, including paint and glue sniffing, which ony i “lable services ed eas ane Fave t information on availa ¥¢ Provide co ms s * Address transportation proble in isolated area often is undiagnosed. t foods easier Native upplementa who serve . te Make obtaining mua of doctors and dentists Teenage pregnancy * Increase the num t of Housing and Urban rates are also high, and _- Ameri housing provided by the Departmen Indian parents seem to * Improve hers . \ P ment abuse among mot of have difficulty commu- Develop! detection of substance crease the number } * Imp ne ducation for teenagers 4 nd in nicating about sex with i *& Provide sex © \ mothers receiving prenatal care their youngsters. The community’s lack of compassion for these participation peor ' “scan children & Increase i — programs spec ecifically for Native Ame ir Target funds 10 tiv1 \* Improve ‘cultural a N ¥ plems \ * Address communica young mothers lowers wd ns their self-esteem. Fur- thermore, they often ul don’t realize the \ val need for prenatal | . ‘ database for social... care anddon’tknow ‘transitions a jJe instituting a national cam | Ya 1 while in u ct confidentiality how to adequately u * Prote = gions 4 services arate na . eee of tribes a8 SEP e the status } heritage” x Reco ent as educators of cultura * View P a2 care for their babies. yw a8 i a4 Asa result, many Indians begin life at risk and remain so all their lives. Native Americans feel that funds to combat these problems are allocated on the basis of head counts alone and that services are uneven and often discrimi- nating. More funding was a universal recommenda- tion. The Native American delegates added that some funds need to be clearly targeted for Indian children so that all their children’s needs can be met, regardless of family income or tribal programs. As the 1990 census indicates, more than 60 percent of Indians live off the reservations in both urban and rural areas. In urban areas, the Indian community is culturally diverse, some- times representing several tribes and languages. Provid- ers need to be aware of this cultural diversity, and services should be provided in these urban areas. One delegate told about being denied special health services because a provider insisted that she use the reservation hospital, which did not offer evervthing her condition required. Another delegate told of a person who had facial characteristics of an Indian but did not have a tribal heritage; nevertheless, he was sent to the reserva- tion for services. Indian delegates reminded their white and Afri- can-American colleagues that, as Native American par- ents participate in programs, acting assertively to con- front the system and demand that it become responsive defies tribal heritage and culture. Native American parents will not be assertive merely because someone tells them that they must. However, this problem can be resolved if Native American parents accept the role of teachers for practitioners who don’t understand tribal customs and history. It is imperative that service providers be taught that it is contrary to tribal culture for a person to look directly into another's eyes when he or she speaks because social service providers have been known to doubt a person’s honesty because he or she did not maintain eye contact with the practitioner and deny benefits. Other unique communication barriers include the loss of information or misunder- standing during translation, especially when all words in tribal languages do not have an English equivalent, orvice versa. Programs and the materials they use need to be tied to cultural relevancy both for children and parents. Although confidentiality in health and social ser- vice programs is a concern for all parents, it is particu- larly important for Native Americans. Confidentiality is sometimes threatened when the programs are adminis- tered by the tribe because the providers and recipients of services are often acquainted or even related. Hold- ing tribal staff accountable is very difficult. Neverthe- less, these delegates, like their colleagues in all the other regions, said a national database network for social services is needed; however, they advised that regulations ensure confidentiality among all services and programs. In another area, services and programs must rec- ognize the distinct status of tribes as separate nations. The delegates said that professionals need to be aware of and address issues of racism, and the system needs to begin to see Indian parents as prime educators, espe- cially educators of cultural heritage. Practitioners and professionals tend to show little respect for the use of elders for teaching tribal nations, they added. Head Start and WIC are considered model Fed- eral programs. Newer programs that seem to be work- ing well include Wisconsin Indian Network Genetic Services (WINGS) (in Wisconsin and Oklahoma), which identifies special needs children and helps coordinate services for them; the Trails program, an Outward Bound program; National Indian Youth Leadership, a New Mexico model for youth leadership and mentoring; and Indian Child Welfare programs, aimed at keeping Indian foster care and adopted children in Indian families. The HomeBound and Babies Having Babies programs in Oneida, Wisconsin, both serve teenage mothers. Oklahoma has excellent referral centers in the Tulsa Indian Health Care Resource Center and the Oklahoma City Indian Health Clinic, The Pawnee Benefits Program issues benefit cards that can be used for care by a private physician. Report of the Surgeon Generals Conference 63 MIGRANT FAMILIES Migrant families also have their own special set of issues of con- The arrows on the map indicate the general rou tes followed in Migrant families as they travel to work during the cern, with housing, salaries, health growing season and harvest of America's crops. insurance, and injured workers ben- efits taking the lead. Migrants often must rely on crew leaders who recruit teams of workers and then may exploit them, denying them basic rights (such as forcing them to work on Sunday when they want to attend church) and charging them for free services (such as housing provided by the farm owners). Migrants were largely overlooked in the 1990 census, and the low level of available health care and social services reflects this deficit. The lack of coordination between programs from State to State affects Migrants particularly: They cannot qualify for WIC, Food Stamps, or Medicaid benefits in one State without canceling their benefits in another. If they return to a State, thev have to reapply. Migrant parents need some kind of resource material, available Migrant Families i ce ecommendations at a Glan before they move, that would provide them with a State's | regulations and _ policies. | \ | \ wareness and Entry p > ce, ¢ C ura , cess * Im rove hous conditions salaries acce to health insul n and v g Federal programs also should be coordinated with the needs of Migrants in I 4 Provide ¢ ontro S ove is a ment by crew leaders i : . 1 ym we U Y . . i * ‘ nd soc jal servic es ilable health care a ° ' Increase ava 9 : ° t : id. F Or exampl h i * p rovide res ur ¢ Cc tate Pp g Oo ce materials on €a h S s ro rams U.S. Departments of Ups \\ Provide funding for support BNP AP Health and Human Ser- vices, Agriculture, and a4 . . u icipation ties Parole conveniently tocated fact * Address transportation proble Hocation i f£ food stamp & fice + implementation OF tthe post offic i Examine an an ailable for distribuoon throug Make Food Stam idi ore bilingual staff x mmunication problems by providing ™ * Address.co * * Education each define a “migrant” differently, which leads to confusion i i i | i 3 and causes denial of ben- efits. : 1 school ; keep children in “1d labor laws and Enforce child Support groups Provide daycare services for Migrant families sorely need funding. ha Pp . } * i i th : “ tp t x TOVI e improve al cess to ro Tain ‘ari omer mecharrisms to he ee c Pp g s | i mig T ant families pr epal e€ for wr ansition. Pp ty | oO S Ss esp * im rove sensitivi t migt ‘ant families pr oblem and how Yr ect Migrant workers who do participate in programs find that they often must travel long distances to ob- tain services and miss whole days of work. Transportation is often hard to obtain. Crew leaders often do not allow parents time off to attend meetings. Migrants are often subjected to illegal treatment regarding Food Stamps allocation. One delegate recommended that Food Stamp distribu- tion be alphabetized for pickup at post offices, so that recipients do not have to spend hours waiting in line. Communication is often a problem for Migrants be- cause service providers lack enough bilingual staff or have no one who can speak the client's language. Keeping Migrant children in school is a pressing issue. Child labor laws are not enforced; children as voung as 10 or 11 vears are hired to work in the fields. Parents often have no recourse but to have their chil- dren work; their familv’s livelihood depends on their harvesting as much as possible, and each pair of hands adds to their production. This problem is compounded by the lack of daycare for Migrant families. The result isthat small children are brought to the fields along side - working mothers, or thev are left in the care of children who are too young to work, and who are not much older than their charges. , Migrant families, their conference representa- tives pointed out, face transitions that are almost alwavs double-edged; they.are geographic as well as develop- mental. Migrant families are constantly making transi- tions and that means new rules and new environments for their children without any mechanisms to prepare for the adjustment. This continuous movement means continually losing friends and family support.. This delegation commented that it is particularly important for their parents to be guardians of children’s records. Itiscommon for Migrant families to complete and file all the paperwork necessary to receive public assistance, only to have the growing season change and force a move to another State before the assistance starts. When they get to the new State, they added, the paperwork has to be redone. But guarding the records does not always guarantee that they will be transferred easily or correctly. These delegates said school credits do not transfer from State to State verv easily or uni- formly, especially when students enroll in a new school in the middle ofaterm. Migrant parents recommended that the U.S. Department of Education devise a system that allows classes and credits to transfer from other States. These delegates also called for improved access toroutine programs asa way to make transitions smooth. They said that bad health conditions and no daycare, after-school care, or social services are the norm for communities where Migrant workers live. They urged that emplovers of Migrant workers be closely moni- tored regarding their employment practices, facilities, and use of pesticides. For Migrant parents, developing children’s self- esteem often entails demanding respect for Migrant families in general from teachers and other caregivers or service providers. They complimented the confer- ence cosponsors for including Migrant issues on the agenda, saving that more of these opportunities are needed. They urged the continued participation of Migrant families so that they can be partners in raising healthy children ready to learn. The families agreed that a model program should include classes in prenatal care, dental care, and En- glish as a second language; make Head Start available for all Migrant children; involve parents in policy deci- sions; bring mobile health clinics to rural areas; fund senior centers for care for the elderly; and sensitize social service staffers to the special needs and cultural differences of Migrant workers. Migrant families are subjected to exceptional stresses and strains, and model programs should take care to address the needs of the family as a whole, to help maintain family integrity. Among existing model programs, Washington State has a Migrant Council that works with the whole family; the East Coast Migrant Head Start provides continuity of services; and overall, Head Start is an effective program because it is designed to serve the family as a unit. Report of the Surgeon General’s Conferences 65 Presentation of Findings ie a Chapter 4 Presentation of Findings n the final day of the Conference, the more than 700 participants came together to hear the findings of the Parent Work Groups. The find- ings were presented by three parent representatives, one for each of the topics discussed: awareness of and entry into health, education, and social service svstems: partici- pation in the svstems; and transitions from one program to another within the svstems. The parents prepared their presentations of the findings by working with the work group facilitators, recorders, and rapporteurs to deter- mine a national consensus based upon the thorough written notes of the work group sessions. After the parent representatives presented the findings, the issues thev raised were addressed by the Responder Panel, composed of directors of key Government agencies that provide services to families. This dual panel composed of the Parent Representatives and the Responder Panel was moderated by Rear Admiral Julia Plotnick. Chief Nurse of the U.S. Public Health Service. Parent Representatives’ Awareness of and Entry into Health, Education, and Social Service Systems Sherlita Reeves Parent Delegate from Arkansas Hi. She [Rear Admiral Plotnick] told vou I'm from Clinton country, I live in a verv rural part of Arkansas, and so that’s the background I come from. I have two children. I have a 14-vear-old who is normal, healthy, and looks like she’s 18. and an 8-vear-old who has spina bifida, a neuralgenic bladder, severely dislocated hips, club feet, hydrocephalus, and growth hormone defi- ciency and who must take injections daily. 68 Parents Speak Out for America's Children I'm a multidegreed individual, and J think [im well educated, but I have to tell vou that nothing in my life prepared me for being the parent of a special needs child, But then, nothing prepared me for being the parent ofa teenager, either. So, you know, vou just have to learn as vou go. My 8-vear-old daughter, who has spina bifida, has been involyed in programs like Head Start, which was a blessing to my family. Presently she is on TEFRA, which, as many of vou mav know, is the Katie Beckett waiver, and, again, that’s been a Godsend to my family. It can be very frustrating when you are working and uving to do good for your family, and just because "The remarks of the Parent Representatives have been edited for davity, “The Tax Lquity and Fiscal Responsibility Act (TEFRA), Public Law 97-248, enacted in 1982, allows States to amend their State Medicaid plans so that children with special health care needs under age 19 can receive benefits while frving at home even though SST rules require institutionalization under the eligibility criteria. Individual Katie Beckett waivers provide the same entille- ments dnet were granted an a case-ly-case basis, whereas TEFRA covers all children in the State who meet other eligibility criteria. Katie Beckett waivers were created in 1982 and phased out in 1984. you are working and trving to do good, vou don't have anv more ofan idea where to go for services than people who aren't working and well educated. I mean, just because vou have a college degree, doesn't give vou anv great insight into how to deal with children. That’s just something we all have to learn. It’s my task today to summarize to vou the reports from the groups on awareness and entry. and | wish to let vou know that] am speaking tovouina collaborative voice, and not as a single individual. The Parents’ Roles and Responsibilities The groups felt that the parents should first become informed about their own children’s needs, and that they need to be informed about what services are available. It’s verv important to remember that knowl- edge is power. And we need to know what our rights as parents are. Parents should be their children’s advocates, and in order to do this, they must first have a belief in themselves. Thev've got to be able to meet their own needs in order to be equal partners with professionals and service providers. Parents should network with other parents because there is great strength mm num- bers, but we have to keep in mind that networking can be just one person with another person. Issues of Concern There’s just too much red tape and paperwork in systems that are not people oriented. It's very difficult to get into the systems, and once vou get in, you don't want to stay. An example of this is problems with the Medicaid program. Medicaid says that they will pay for services for children who are indicated by screenings. but they are unwilling to pav providers enough monev to make it worth their while. And the end result is the same: the child still gets no services. The system is not set up to meet the needs of people whose first language is not English and who have a different culture. Their hours are inflexible for working people. If vou’ve got a 9-10-5 job, a lot of times vou can't take off work to get vour child’s immuniza- tions without endangering vour own job, That's a problem. There are barriers for physically impaired people. There’s a lack of transportation to providers, especially in remote rural areas. There is no account- ability in the system, and if vou have a problem, there is often no one to whom vou can complain. Our system fosters dependency. Generations are growing up on a welfare system, and it’s becoming the only wav of life that they know. In some cases, single parents making minimum wage cannot afford private health insurance to cover their children. And thus, in manv cases. it’s easier to be dependent on the system than itis to getajob. Welfare programs, such as AFDC, cause families problems; families are unable to get assistance a lot of times unless the father is willing to leave the home. thus breaking up the family. There aren‘t enough tax dollars to go around. There aren't enough dollars to go around, Community programs are forced to compete for the same funds. This situation breaks up the communiw. Solutions Now we get down to the meat of the problem, the reason we came. We feel that there should be school programs, starting in kindergarten and going through 12th grade, that develop social competencies, to prepare children on how to be effective parents and advocates for their own children later on in life. Thev could learn selfesteem, self- confidence, problemsolving, decisionmaking, and howto get along with others. We need to build support networks within the community—whatever that community may be for you, ifit’s vour neighborhood, vour workplace, etc, Itmay be people who have similar health concerns, or it might be your tribe. There should be clirectories of resources avail- able, locally, statewide, and nationally, with toll-free numbers for resource information. And there should be one-stop shopping for all mandated programs, such as Medicaid, WIC, or Food Stamps. And this should begin with a single application form, or as some people sav. a “universal form.” Children need a comprehensive health care svs- tem from the time thev ave born. We need to provide Reportof ihe Surgeon General's Conference 69 “And now we. charge you, our are you gomig to t we don’t it?” prenatal care for everyone. We need early intervention. Public Law 99-457 is aimed at children 0 to 2 years of age. We need to target new parents. We need Head Start for children ages 3 to 5. Those are just some of the programs we felt had worked. Parents should have a way of talking back to the system. Parents need a common ground with agencies, a respectful partnership that recognizes each other's needs. This relationship is going to foster and encour- age easy entry into the system. Parents need to build a method to evaluate the services thev receive and hold service agencies accountable for the quality. There should be persons designated to respond to all com- plaints in a timely manner. Children are our greatest natural resource and our future. There should be an all-out media campaign just as intense as the one for anti-smoking and AIDS awareness. It speaks very poorly of our country that we had laws to protect animals before we had laws to protect children. We need to define our national health care system. This country needs to make up its mind. Is health care aright, orisita privileger Is insurance a right, or is that a privilege? There’s a parent here at this conference 70 = Parents Speak Out for America's Children today who is paying insurance premiums of $1,000 a month. How? That's $12,000 dollars a vear! How many families can afford that? In closing, we've been asked to report to you, our Government, on everything that we've done in the last few days. And now we charge you, our Government, to report back to us, the parents. We want to know, what are you going to do with this information? How will it be used? When are you going to tell us? How are you going to tell usr And what if we don’t like it? Participation in Health, Education, and Social Service Systems Ellie Valdez-Honeyman Parent Delegate from Colorado I'm from Region 8 and the beautifuland mountain state of Colorado. Iwas born in the southern part of the state in a place called El Valle San Luis. It was there that I learned to speak Spanish with my grandparents, who were very special to me. My husband, Mike, and I have six children. They range in age from 2] vears—and I know! don’tlook that old, but I am—down to 20 months old. We have three girls and three boys, and three of our children have disabilities. Currently, our home is also blessed with the presence of two grandparents, who are there for an extended stay. Two of our children with special needs are attending their home schools with support from special education. Our 5-vear-old and our 20-month- old attend an integrated daycare program at a wonder- ful place in Denver, which has been our family’s Point of Light, called Laraden. There, our daughter Jamie, who's 20 months old, also receives her therapeutic intervention, We're a complicated family, and we have some fairly complicated needs. We’ve had to challenge the system at all levels to get what we needed for our children. Butright now I’m not here for them, and I’m not here for myself, or for my State, but I’m here to speak for parents all across our country who are repre- sented by all of us at this conference. Every work group addressed the areas of awareness, participation, and transition. And I’m going to try to speak about our collective thoughts on participation. | took the liberty and came up with a definition that I hope savs what vou thought participation means. Participation is being an integral and meaningful part of whatever it is that we need to be healthv families ready to live and learn. In participating as families, we all identified some responsibilities and roles that we have. We need to provide for the needs of our children. That means giving them those things that can be seen and touched, like food, clothing, safety, health care, and quality time, which will in turn manifest itself in good self-esteem, confidence, or as one mom from the southeast said, [so] “They'll be emotionally and socially straight.” After those immediate needs are met, we need to instill in them a spirituality that encourages values, morals, and respect for themselves and for others. We need to be advocates. We need to be advocates for our children. We must get their needs met first, and after we do that, we can become advocates for other ‘amilies who are just starting out, or who are stuck. And finally, we can advocate for the system components that work for us. We need to develop partnerships with systems. We must become partners with the systems, and becoming partners means there’s an equal status and respect of input, as well as capability. Parent to parent—that can mean a lot of things. But, parents, I suggest that we need each other. No matter whether we're a stepparent, foster parent, single parent, birth parent, adoptive parent, grandparent— we need each other. And we can help each other by supporting, mentoring, role modeling, or whatever itis that links us together. We need each other. We're responsible for community education. We must become involved in our communities, because by our presence, we'll educate about the benefits of integra- tion and inclusion and we'll get beyond just cultural awareness and cultural sensitivity. We'll all become cul- turallv competent. In other words, we won’t just serve tortillas and peanut butter around Cinco de Mayo, but we'll have all our forms available in the languages that the people speak. We'll understand that when a Native American mom doesn’t make eye contact, it’s out of respect, not disrespect. We can go on and on about those areas of competency and what that means. Regarding these parents’ roles, we identified some issues of concern. There were many, but the ones that came through loud and clear were the stigma of receiv- ing services, the stigma around being poor, a circum- stance over which babies have no control. One of us here identified “a national psychology” that stigmatizes you if you are a recipient of certain Government ben- efits. One mom described her embarrassment at the checkout when she overheard someone make a com- ment about her purchase of cookies with her Food Stamps. She was almost in tears when she said, “Doesn’t every child deserve a cookie now and then?” Ironically, we have families who can’t get those benefits, because they make a few dollars over the maximum. A parent from New Hampshire says she can'tafford to get a job, because she'll lose income and her health care. Eligibility is the barrier. Eligibility for services should not be just income-based. We can't forget those families who should be eligible because thev have children with overwhelming needs. Report of the Surgeon General’s Conferenes 71 There were lots of barriers to participation in services, programs, and support. But some of the ones that kept getting mentioned were language, and not just non-English, but language full of complexity and jargon. “System language” that only a bureaucrat can understand, and that (hey sometimes can’t even trans- late, is also a barrier. Transportation is a barrier in rural areas. There aren't enough services, and sometimes vou have to travel far to get what you need. In large urban areas, lack of public transportation can keep you away too. Inflexibility is also a barrier. We need flexibility from our employers to get to the services. We need services to be available at flexible hours and in flexible places. Families need to be able to identify who their community and family are. A big barrier sometimes develops when the systems trv to define family and community. Bureaucracy is complexity, and often the bureau- crats don’t understand the system. Paperwork is com- plicated. One mom in the northeast told us how she was eligible for Medicaid and she had her card, but she couldn't find a doctor who would see her. Doctors are often leerv of Medicaid patients, not just because of the low reimbursement rate, but because of the paperwork and the time involved in getting their monev. Being the proactive and sensible people that we parents are, we identified some solutions, and we put them into two categories. The first one was local initiatives. We identified that we need flexibility in service delivery. A variety of hours and davs when the services are available would really help us. Our provid- ers need flex time, if necessary. Our moms and dads who work need support after 5:00 p.m. and sometimes on weekends. We need consistency in funding. We want to be sure that the services that we need will be there tomorrow. Locally based services and support need to be available and close to home. We want our children with disabilities to go to school with their brothers and sisters and neighbors. We want all chil- dren to get a fair shot at education, not based on the income—or lack of it—of their parents. We have to foster self-esteem. The services, supports, and benefits 72 = Parents Speak Out for America’s Children cident called ‘falling through the cracks.’” should be viewed in wavs that are meant to help families to become enabled and in which empowerment is facilitated. We all have the potential for empower- ment. More support should go to programs that make families rejoice in the success of being self-sufficient. As parents, we accept some responsibility. We think that all parents have to be involved, as budget planners, policvmakers, and partners in decisionmak- ing. We saw interagency collaboration asa key solution. Good services will result from good interagency collab- oration, and once again, the collaboration should in- clude parents—not as tokens but as real participants, who are respected and maybe even paid for their expertise. If agencies work better together (or, as a bureaucrat friend of mine from Denver said, “smarter, not harder”), then maybe fewer of us would become casualties of that common accident called “falling through the cracks.” The second category is Federal initiatives. Our companeros in Region 2 actually put together an initia- tive for a partnership across all Federal agencies that would include families and agencies from local levels. This partnership would be a formal structure that would create a standard in which service systems wel- come and embrace families and use proven models that work, such as Head Start. The principles outlined in the plan would be embodied in the design, delivery, and evaluation of services. The philosophy must in- clude family-centered, comprehensive, and account- able service and support. And again parents must be included as equal partners. Dr. Novello, vou issued us a challenge when we came here, and vou've already heard one challenge. We're issuing another one. We as parents voted last night, and we decided that, from Washington. vou should lead that initiative. IT want to thank Rosa Palacious. a parent who supported me last night through the long process of putting all these collective thoughts together, and [just want to share with you something that I learned at this conference. Isaw.and see. areal beauty in the diversits here, and we need to celebrate in that diversity. T also felt a power in collectiveness, and I think we need to harness this collective power. We need to identily those areas that are important to all of us. such as family, health care, and education, and we need to unite as parents—all kinds of parents—to make our families healthier and happier, to make health care accessible, and to make education more than just an academic experience, but an experience in living. To do this I suggest the leadership must come from all of us. Transitions Through Health, Education, and Social Service Systems Larry Bell Parent Delegate from Delaware Being up here makes me pretty nervous, especially in following these very competent young ladies who went before me. J want to take this time to thank Dr. Novello, and all the parents that were here, and all those people that kept me up all night last night trying to put this together. And especially for the parents that were in Region 3, which is the group that I was in, for their support. It isan honor to have been chosen to stand and represent you. I was waiting, and I saw my wife come in—are vou here. somewhere? Yes, okay, I feel better now. They were calling me this morning wondering where I was. and I came down, and I had all these people (I guess security people) with walkie-talkies calling and velling, “They're coming through.” It made me feel good as an African- American male to have all that security and not be on my wav to jail. My name is Larrv Bell, and I’m from Delaware. | have five children and three grandchildren. ['m a second-generation Head Start parent. I was involved with Head Start when mv children were in Head Start, and now I have custody of one of mv grandchildren who’sinvolved in Head Start, and that’s how] ended up being involved in this process today. The purpose of my presentation is to bring to- gether all of the work that the parents have put in so diligently over these past 3 days and talk about issues of awareness, parucipation, and transition, And my topic is going to be transition. First, ] want to share a little story. I heard a minister friend of mine and by the wavy, [forgot to tell people that Iwas a minister and was going to be passing the collection plate in a few minutes—I heard a minister friend tell a story of how every time he went home and they sat down to dinner, thev alwavs had squash. He hates squash. Every Report of the Surgeon General s Conference 73 time thev passed the food around, when it came to him, he would pass it on to the next person, and his mother would say, “Boy, what's wrong with your You know vou don’t pass food without taking some and putting on it your plate!” He would say, “But Mom, I hate squash!” She would take the squash and proceed to put more on his plate than he would have if he had done it himself. He would say, “But Mom, why are you making me eat this? I hate squash.” (And he’sa grown man.) And his mother would reply, “Because it’s good for you.” The pointis this: the information that we as parents are presenting to you, especially the legislators, is the truth. Some of that ruth that vou hear will be “squash truth.” It will be truth that you may not like to hear; it may not feel good, but it will be good for you. And throughout my topic here, we'll be covering the issues and roles and responsibilities of par- ents; we'll be dealing with the problems, issues, and concerns as well as solutions. And I kind of combined them together. The thing that I want to leave and impress on all of us before we leave here is that all of us have a responsibility when this Conference is over. People are asking, “What's going to happen with the information? Is this just to be another time that we come together and share information and nothing happenswith it?” It might be, but knowing from what I’ve seen, the time that I spent with and around Dr. Novello, I don’t believe that’s going to be the case. But all of us, when it comes to working with problems, solutions, and transitions, have a responsi- bility when we leave here to go back to our communities and meet with various agency officials to begin to talk, share ideas, and discuss the roles of parents and the roles of people involved in the system. We all have a responsibility when it comes to the transition of our children. Our charge to our parent delegates is to go back to vour communities and meet with the officials of whatever system or svstems that affect or impact on vour children. Sit down and define those roles. When we talked about transition, we came up with nine major issues. And the first one is that parents need to participate in the transitional process. Parents need to be aware of their children’s needs, including health 74 Parents Speak Out for America’s Children needs and special equipment needs. They should be encouraged to articulate those needs to the systems in which they will be involved. Parents need to be prepared for and about the transitional process. But we need to remember that transition really begins with the transition of the parent, to prepare children for the transition—to do things like introducing them to new people, taking them ona tour of the school, finding out the daily routine, and talking to our children about that process. To prepare our children for transitions such as having their parents at these conferences thatinvolve their children, people need to talk with their kids about the change as soon as they know that it’s going to happen. We also decided that it would be very helpful to develop a resource manual, information that would be available and accessible to the parents so that, when thev move through different systems, they would have a source with the names and numbers and contact people. Then, when other needs arise in the future, they will have something in their hands so that they can contact somebody to have those needs addressed. We felt that parents also should be encouraged to be good recordkeepers, to have copies of all their children’s records so that as they move through the transitions, if the system fails to make sure that informa- tion gets moved on or passed on to the next system, the parents at least have a copy of that information to make sure that it gets passed on. We thought that parents needed to demand re- spect for themselves and for their children and that the svstems that thewre involved in need to respect them and recognize that parents are professionals too. We felt that one of the other things that would help in the transitional process is for the systems and the parents to sit down together and share and clarify their roles in who's going to be responsible for what. We also need to improve communication between systems. Improving communications would make for smoother transitions; it would help decrease turf wars, avoid duplication of services, and help to promote the continuity of services. We felt that program materials need to be written in the language of the parents, to take into consideration the languages of non-English-speaking people. Also, we suggest using picture books for those parents who might be illiterate and being sensitive to language that doesn’t always translate exactly into English. Many of the Native American terms don’talwavs compare when theyare translated, and we need to be sensitive to those kinds of things. Successful transition depends on having everyone involved to learn to trust each other and the systems that impact upon their lives and the lives of their children. We want you to know that this takes work on both parts to develop that kind of trust. We want a svstem that we're involved with to avoid technical jargon and using terms that we don’t understand. When vou sit down to work with parents to develop an IEP, make sure that vou speak in terms that the parents understand, and make sure that the parents are aware that they don’t have to sign an IEP if they disagree with it. Another area of concern was that programs and staff must be culturally sensitive and relevant. Svstems need to see parents as the prime educators of their children and especially educators of their own cultural heritage. Programs need to be aware of and address issues of racism that occur during transition—or any time that it surfaces directly or indirectly. Remember that the sensitivity in this area goes beyond just ethnicity, but also should take into account social and financial status and spirituality issues. Remember to label cans, and not kids. Also, we must focus and work on developing pa- rental and child self-esteem. We want to focus on the children, but when you’re working with the children, remember that parents need self-esteem too, and those issues need to be addressed. Parents must be good role models for their children and be good role models throughout the transitional process. Sometimes this means finding a good role model for the parent. One of the responsibilities of parents is to love their children, but we know that before you can love other people you first have to love yourself. Parents must learn to be able to feel good about themselves before they can help their children feel good about Report of the Surgeon General's Conterence 75 themselves. We want to make sure that children know that their feelings about the transitional process are importantand that thev should be encouraged to share or to express those feelings. We should make an attempt to bolster childrens’ selfesteem so that they won't be afraid to speak up. At the same ume. we should bolster parents’ self-esteem so they won't be afraid to speak up, so that they won't be afraid of the systems that impact upon them and will be able to confront the svstem. Some of the parents said that other parents won't speak up for fear that if they do, they mav get involved in a system that may end up investigating them or even make an attempt to take their children. Because of those kinds of fears, some- times they are uncomfortable confronting the system. But we need to encourage parents to stand up and be the primary advocates for their children. Another concern was that parental involvement must be consistent across svstems. Many times parents who are involved in the Head Start program are con- stantly involved in the progress of their children: they volunteer in the classroom, they spend time with them. etc. Then, when they move or enter other systems or the school system, thev’re not thatinvolved. We feel that we need to keep the parents involved and keep that in- volvement as they make transitions throughout the systems so that our children can be healthy and ready to learn. We also felt that parents should be involved in program design and the policvmaking decisions that affect and impact upon their children. One suggestion is that we form parent boards, which are verv prevalent in Head Start but do not exist in many other systems, After the transition occurs, parents need to continue to be involved, For example, parents that are involved in Head Start need to stay involved as their children grow and move through other programs. Parents need to form their own support groups. When they do, programs should work with them. In other words, when a parent group forms a support group to help themselves and to help other parents work through the transitional process, the programs and systems should be there for them, to support them, 76 Parents Speak Out for America's Children help them learn the transitional process, and provide materials or whatever they need to make that transition as smooth as possible. Program counselors should be appointed to help parents prepare for the transition. Also, parents need to be aware of not onlv the needs of their own children, but the needs of others—to move away from, “me, mv four, and no more.” Consistency is the key to successful transitions. We need to be aware of the impact on children and parents of abolishing programs without notice, and manv times without preparation to have those needs met through another area. We need stabilized funding so that programs can address the problems, instead of just looking at the svmptoms. Someone suggested that the transitional process would be easier ifwe developed an interstate communi- cation system. We should create a national computer network so that the information on parents in one State could be readily accessible to another State. When people such as the Migrant workers move from one State to another and they have to apply for benefits, thev have to close out their file in the first State, reapply at the next, go through that whole process again, and reopen their files. Often it takes a long time before they get the benefits. Sometimes they are ready to move on to the next growing season or the next location before the benefits even get started. So, if we had a national network, that information would be readily available, and that could speed up that recertification or reapphi- cation process. Also, another thing that came up was to create a way that school credits could be acceptable from State to State. People move through different situations. They have things that are credited in one State, and when they go to the next State, the school says, “I’m sorry, but this is not credited here.” Then, the child has to go through that whole process again. Establish one-stop shopping—and I won't elabo- rate on that because it has already been stated. Decrease the time spenton paperwork. Make forms less complex. And make an effort to cut down on the duplication of information during the recertification process. Many “Being ready to learn is more than making our children ready for the schools. We need to make the schools ready for our children.” times parents go in to be recertified, and they give the same information thev gave 3 months ago. Sometimes in Delaware, when vou go to be recertified or to get services, thev tell you that vou have to be at the social service agency at 7:30.a.m, They see vou at 8:30 a.m. or 9:00 a.m., and then thev give vou paperwork to fill out that vou just filled out the Jast time. No information has changed, but they sav, “Well, vou have to do it.” We could cut down on that process and speed it up. Workers need to be sensitive to the needs of the parents who come in and should be aware of the stereotypes and not have negative attitudes towards them, because they wouldn’t be there if they didn't need the help. The other area of concern was flexibility. We need to make the eligibility criteria flexible. For example. some people have incomes above the guidelines to receive Medicaid but also have children with special needs. They can't get regular insurance because the child has a preexisting condition, so the msurance company does not want to cover them. So those people getlostin the cracks. We need to pave the wav of smooth transitions by making programs and facilities flexible. One of our delegates expressed that she has a special needs child who has been mainstreamed into the classroom, When that child has te go to the bathroom, he’s made to go to the other side of the school because it takes him a little bit longer to use the bathroom, and thev don't want him to hold up the other children. We don't think that’s fair, and that situation needs to be addressed. We already talked about flexible hours. Employ- ers need to understand the parents’ need for daycare, leave for medical visits, and appointments with other programs. Remember that the familv and their indi- vidual needs still exist when income levels change. Transportation was an issue and must be im- proved and addressed, especially in rural areas. With- out transportation, the children are not going to be able to make successful transitions between programs and obtain other needed services. Another area of concern is increasing and promot ing the use of school social workers. Social workers could act as advocates for parents and children so that they can help them with the transitional process. Thev can help families access services and become a primary link be- tween school systems, parents, and the community. The last and final area is that legislative action must be taken to improve our children’s transitions. First, we see a role of the parent to take the responsibil- ity to elect family advocates in political offices. We need to work to develop Federal and State laws and regula- tions that better address the families’ needs to make the transitional process much easier. We need to find a way to enforce the laws that are already on the books. We also need nottojustaddress the needs of one individual's problems. For example, one of the parents shared that they were in the process of suing the school system for some needs for their children and that when that fight is over, and that parent wins, the next parent has to go through the same process. We think that systems need to learn from those fights with parents and those kinds of things that happen. Thev need to learn from the results so that other parents don’t have to learn how to fight the systems better. We need to make sure that our programs are adequately funded so that the needs that they are designed to address can be addressed, In summary. we want to remind vou of the three C's.) Consistency. connuin. and coordinadon of Report of the Surgeon General's Conterence 77 services are necessary to promote healthy children in families that are readv to learn. We want to issue another challenge—and this is not necessarily to Dr. Novello—but we not only want our children to be healthy and ready to learn. Being ready to learn is more than making our children ready for the schools. We need to make the schools ready for our children. Responder Panel* James O. Mason, M.D. Assistant Secretary for Health US. Department of Health and Human Services T want all of you to know how much I appreciate this opportunity to be here with vou. IT want to express appreciation to all vou parents, andI don'tneed to tell vou that vour three representatives up here are tremendously Tdon'twant to repeat what has been said by other articulate and very well prepared. I could talk for 2 hours speakers, but I want to respond to a number of ques- just in responding to what the three of them have said, ions that were raised. When President Bush came and obviously I don't have time to do that. Let me say that here and talked about his comprehensive plan for I'm not just the head of the U.S. Public Health Service: health care reform, he was addressing a number of the I'm also a father. J have 7 children and 17 grandchildren. problems that have been described. This reform. so I could sit out there as well as stand up here. [hope | which will provide tax credits or certificates and tax can express my sympathy for vour point of view both as a deductions, willencompass 9 million Americans. It will governmental official and as a parent. provide access to health care services for all poor I think it was Ms. Reeves who talked about the Americans. Itwill create insurance pools so that people importance of our children. So often we read in the at high risk will not have to pay those higher premiums; newspapers about being competitive with our automo- thev'll be in the same pool with many other folks, to biles, electronics, or pharmaceutical industry, but we average the risk out. The President talked to you about are here to reaffirm that the most important product health insurance security so if you move from one that this Nation has is its children. Our children are the community to another, or from one job to another, future of America, and every minute we spend here is your health benefits would be portable. Then he talked time more than well spent. I believe—and I don’t think about choice. You see, choice and a tax credit (a it’s just because this is an election year—I've never seen certificate) empower a parent; you don’t have to be a meeting where the President and three departmental part of a system for just poor people. You take your heads (three Secretaries) came, and that’s a commit- certificate and vou buy vour health care from a pro- ment of this Government to the importance of children gram that will provide the quality and the content of and doing something in this partnership between the Federal level and parents. “The remarks of the Responder Panel have been edited for clarity. 78 Parents Speak Out for America's Children services that you need. Then he talked about affordability and cost containment. Ifwe can convince Congress to enact this plan, it will begin to address some of the health care problems that vou are encountering and that I encounter as a grandfather. I would just like to answer the question: “What are we going to do?” [just want to mention two things and then I willsitdown. First ofall, we are here to listen, and I think listening is probably the most important thing vou can do so thatyou understand the concerns. You've heard the recommendations for solving these prob- lems. But we need to do more than listen. Here's one example of what I am going to do. Each quarter I meet with the officials of State and territorial health depart- ments and with vour State health department comunis- sioners. Each quarter | meet with the US. Conference of City Health Officers and the National Conference of County Health Officers. I'm going to discuss the things that vou’ve been talking about with them because this isa partnership. Itwas said that leadership should come from all of us and. of course, it’s got to come from parents, our neighborhoods and communities, our cities, our counties, our State, and the Federal Govern- ment. Only when we all provide that leadership will this system really work optimally, and I will pledge to you mv support to do all I can to work not only at the Federal and we’ve got to work harder from the top so hat it gets all the way through. "3 level but down through that system of health officials to see whether we can implement your recommendations. Now let me give you an example, and time doesn’t permit me to give many. I agree with 98 percent of everything you've said. Let's talk about one-stop shop- ping. You want one-stop shopping, and I want one-stop shopping. Why don’t we have one-stop shopping? There are communities—and I have visited them—in the United States of America where they have one-stop shopping. If we all want it, let's do it! There isn’t any disagreement. We've talked about having a uniform application form. I'm holding up a litde document that’s called a Model Application Form, and this was published in the Federal Registeron December 4, 1991, a little over a month ago. It was developed in collabora- tion with State and local people, and it involved the Department of Health and Human Services, the De- partment of Agriculture, and the Department of Educa- tion. So, at the Federal level, we want a simplified, unified, uniform application. Now why don’t we have ity We want the same things. You've got to start working up from the bottom, and we've got to work harder from the top so that it gets all the way through. You've talked about flexible hours. You want flexible hours; you not only want them, you need them. And we want flexible hours. Last Friday, Secretary [Louis] Sullivan [Health and Human Services], Sur- geon General Novello, CDC Director Bill Roper, and I were in San Diego to talk about an immunization initiative for infants. And what were we pounding the table about? Flexible hours, so that parents could bring their kids in the evening, on weekends. Let's make the systems user friendly. You want user-friendly systems; we want user-friendly systems. Let’s work together to get it. We're not against each other. We're working for the same things, and some- how we have to get it into the middle. And I’m willing to work on that, and I know you will as well. I'm simply trving to say that we are striving for what you want, what you are talking about. Perhaps we can put more power into our grant applications. Let me just sav that we often provide funds for programs that vou use, but we dot hire or fire the Report of the Surgeon Generals Conterence 79 people that provide those services. We can talk more, and we will, but we are going to have to work from both ends ifwe are going to make those services user friendly. We wantit.and we'll do all we can; we've heard vou. But dom tlet them kid you down at any other level. We want it: vou want it: let’s get it. Let's work together. Let me just end by talking about this document. We have what we call Healthy People 2000. This is not a Federal program; it’s a national program. You helped develop the 22 priority areas and the 300 specific, measur- able, realistic goals of where this Nation could be by the year 2000. We've pulled Healthy Children 2000 out of a much thicker document, and of the 3,000 measurable objectives for the Nation for vear 2000, 170 of them relate to mothers, infants, children, and adolescents. We hope that vou will work with us so that even before the vear 2000, as soon as possible, this Nation will have arrived at where vou—as you helped us develop these—said we ought to be. And we're willing to work with vou; we are partners, and we thank vou for vour input. John T. MacDonald, Ph.D. Assistant Secretary for Elementary and Secondary Education CLS. Department of Education T would like to thank our presenters for what I consider to be an extremely inspirational message. but one that has a great deal of meaning to us. I would like to focus my comments in terms of the presentations on children and their families. I just returned last night from the Organization of American States meeting in Guatemala City on issues that affect the hemisphere in terms of the same kinds of things that we are talking about today— precisely the same kinds of problems thatvou've brought here. We are dealing with a hemispheric problem that we have to address if we are going to survive, not just as a Nation, but as a hemisphere. What I heard today, in sum, means involvement, flexibility, a role of advocacy, and finally, as Larrv [Bell] shared with us, consistency, continuity, and coordina- tion. I would like to talk a little bit about commitment, as the other C, to children and their families in an integrated way, a much more integrated way than we've ever done before. In my trips around the country and 80 Parents Speak Out for America's Children also in spending 34 vears in this business of children and families. I found that, on the awareness issue, it means vou must not only be made aware but you must have access. Jim used the term “user friendly.” Our schools basically have never been user friendly because the schools that we have todav are designed for a society, frankly, that doesn’t exist today in most areas. I can remember, some months ago, [Secretary of Education] Lamar [Alexander] convened a group of us with an eminent sociologist, a guy I have a lot of respect for and who has done a lot of work in this area for years. We were kicking around the question, “Why don’t our schools work any more” And he said, “Heck, it’s very basic. What vou are trving to do with your schools is for a bunch of folks who don’t exist any more.” This gets to the access issue, what you need to do with folks. They can't get at you, and you can’t get at them. So why don’t vou think about it? I think back to the experiences I had as a principal years ago, working in an area where poor parents had many of the same problems that vou have addressed in vour presenta- tions. Thev worked. They had to work, They had to get their voungsters off early; thev couldn't get back to “.. you've got to join us in that message that . . . our-schools must become user friendly, to provide a setting for one- stop shopping—places where education can go on and where multifamily services can go ome.” school to attend sessions or conferences or this, that, or the other thing. At that time, we had Title I—that was 27 vears ago, when I came on board—and we developed what we called extended school. This is verv similar to what Lamar mentioned that Decatur [Georgia] is doing now. We have the Federal resources to open up the access issue. You can change the mindsets out there if you join us in that attempt, working with our State commissioners, your State legislators, and vour local school folks to say that there is a system out there that will support your needs, if it is properly designed. We want access to it, and we want to use it. But you've got to join us in that message that we are trying to get across to people that our schools must become user friendly, to provide a setting for one-stop shopping—places where education can go on and where multifamily services can go on in terms of local agency services, State agency services, and, of course, the educational services that should go on on a continuum, places where a school operates from early in the morning until late at night and on weekends and is open during the school year, where it never closes, and it shouldn't. It’s vour largest real property investment. It doesn’t mean the teachers, as Lamar pointed out in his remarks, have to take on all these other chores. Thev are not trained to do so—fine. But with that kind of setting, or a setting comparable to it in a community, we can reach and provide for children and their families the kinds of needs that we need to meet today. It really bothers me terribly—to the point where I don't understand it—-when I think back to the late 1950s and 1960s. When we built elementary schools, we built little clinics in them, and dental centers, and so forth. Try to find a new elementary school today that has that provision where we can provide that kind of service to a child and his family. It doesn’t happen any more. We have to return to some of the things we identified earlier on that parents need and children need and get back to itand make those provisions and open up those schools to do those things. Let me talk about transition for a minute. Larry [Bell] was talking about transition. Let me throw outa bias of mine that we've been trying to work with— {Commissioner of the Administration for Children, Youth and Families, Department of Health and Human Services] Wade Horn and his folks. Transition, to me, means from conception to birth; it means from birth to school and community; and it means to the final thing that the President has also mentioned, and that is to making a life. Unless we have the kind of system in place that provides for that and can deliver that, we're going to find ourselves generationally not making strides that we need to make to address the needs that we have today. Looking at some of the things that I looked at for the past 3 davs in a Third World country—that can't happen here. We have the ingenuity, resources, intel- lect, and experience that most people don’t on how to approach this effort, and we can do it. Let me say in closing thatifwe use what we know and use it creatively, we can develop support for what we are trying to put through in reauthorization of all the elemen- tarv and secondary programs—that’s 57 programs and currently over $9 billion. What we are trving to say is that we need a massive urban intervention program utilizing Federal resources in conjunction with State and local resources to provide for communities, an opportunity to plan for whatever number of vears it takes to pull those resources together, locating the school or another center Report of the Surgeon General's Conference 81 as a hub to provide an extended service or extended school concept so that children and their families can utilize the various resources in collaboration to accommo- date the needs we have. We have many programs out there currently, for example, that can help each other. For example, Wade’s program [Head Start], even with the President's increase, will still not serve all the voungsters who are currently eligible. But Wade can use our program Even Start, which is for children 0 through 7 vears old and their parents, to provide not only parenting and child care services but also job training and placement ser- vices. That program can buy Head Start services, can be used to expand Head Start services, or can create its own. Our Chapter I program, which is basically age neutral, can also be used to buy Head Start services, expand Head Start services, or buv their own. In other words, what am saving is that in terms of integrating what we have currently on the books today, we can do a better job. With our Department of Agriculture, with its Women, Infants, and Children [WIC] programs, we've recently signed a Memoran- dum of Understanding with them so that our Migrant programs can utilize WIC services. We want to expand that to Even Start because Congress. on our request, has now expanded the age range, not for children from 1 through 7 vears old. but from 0 to 7; [wish I could get itfrom prenatal to 7. Butit’sin this wav that we te things together, and the Surgeon General and her office with the Healthy Children Readv to Learn Task Force has been instrumental in pulling those of us together who have been working on this so that, again, we are more integrated than we have been before. We willcontinue tostrive in this direction, butwe are going to need your support with Congress to continue in this direction, where we are pulling together and coordi- nating all the Federal efforts around the one focus—what we need to do for our children and our families who need them the most. Thank vou verv much. 82. Parents Speak Out tor America’s Children Catherine Bertini Assistant Secretary for Food and Consumer Services U.S. Department of Agriculture President Bush has told those of us whom he appointed to jobs in his administration that he wanted us “to work to reorient government to better serve the needs of individuals.” | remember that quote exactly because I thought that was so critical to defining our jobs; it is certainly critical to defining why Dr, Novello has con- vened this Conference: to talk about one group of people—children and their parents—and how, by work- ing together with parents on behalf ofhealthy children, we are helping children be ready to learn and to grow strong. Your confidence in Dr. Novello is very well placed, and I know that she has been not only an outstanding spokesperson for these issues, but also, in convening all of us together, is making a constructive effort to seeing this happen. I've learned a lot already today, and I'd like to share some thoughts in several areas: One-stop shopping, service coordination, im- proving services, empowerment, and then finally some ideas about solutions. Before I start, though, first of all I want to explain why Lam here. As Secretary Madigan said when he spoke vesterday, the Department of Agriculture spends more than half of its budget on food assistance pro- grams for the poor and for children throughout the country. Soin my portfolio, I manage the Food Stamp program, school lunch and breakfast, WIC, summer food program, food program on Indian reservations, food for the elderly, food for childcare centers, Head Start centers, and others—there are 13 programs all together, with Food Stamps, school lunch, and WIC being the largest. Also, ] come here asa colleague of the people at the table and as a colleague of Dr. Novello’s and Dr. Mason’s. One-stop shopping, as Dr. Mason said, is abso- lutely a must around the country. We agree totally on that issue in bringing all social services together, and as everv speaker here said, that isa critical component. We have been sending alot of books to Delaware because 12 centers there have combined all social services except for job training—WIC, Food Stamps, AFDC, Medicaid, various child development projects and programs—all together in one office. I visited one of those offices; it was a pleasant place. One receptionist sees the clients, and all of their information is on a computer, which sounds simple and makes sense. But it was a huge undertaking for the State to convince the different Federal agencies involved to all participate in that project. Itisa model, and we encourage manv States— we sent many people there—to see how that works, hoping that we can help them go more toward one-stop shopping in putting services together. The President mentioned the immunization pro- gram. We've been very involved in that from the WIC perspective because it is one of the few places where very young children come within the system. If we can combine services and provide immunization services there at WIC clinics, it might be a very productive and helpful program to initiate. To thatend, Dr. Mason and I have been working aggressively with health directors around the country to promote joint services for immu- nization and WIC. Secretary Madigan vesterday mentioned direct certification for children in the school lunch program. This is a critical program, and I want to expand on it briefly. It doesn’t make sense that a child may not be able to access a school lunch or breakfast just because ofa bunch of paperwork that wasn tturnedin. The way the system worked before direct certification, as you know, was that at the beginning of the year, the school sent home a form, through the child, to the parent that said, “Please fill out this form. Your child may be eligible for a free or reduced-price meal; tell us your income.” Manv times those papers don’t get returned; a lot of parents don't want to fill out that paper; some parents may never get it; some parents may not be able to read it. So children end up not being in the school lunch and breakfast program, under which they may be eligible for free meals, because of paperwork. What direct certification is doing—and in the counties that have started this already, we've had great success, and itjust began in September—is marrying computer lists. They marry the computer list of the kids enrolled in school with the families that are enrolled in AFDC and Food Stamps. They keep this confidential; it follows all the confidentialitv requirements. But instead of get- ting a letter stating that “vour child may be eligible,” when this works—and it has worked so far in the manv schools that have started it—parents get a letter at home that savs. “Your child is eligible for school hinch.~ And. in fact. whether the letter ever gers home or nol or the parent reads the Jeter is trrelevant because the Report of the Surgeon Generals Conterence 83 child gets the Junch or the breakfast. Ewould encour- age people to go home and ask their school district if they have done this vet. On the Food Stamp and AFDC side. I was at the Department of Health and Human Services managing the AFDC program before I came to [the Department of] Agriculture. One of the reasons Iwas asked to come is that the Administration cares about uving to put these programs together. Almost evervone who is an AFDC recipient receives Food Stamps, and the majority of Food Stamprecipients receive AFDC. Itcertainly makes sense to simplify the rules and regulations. The people who determine eligibility have thick books in every State for each of AFDC, Food Stamps, and Medicaid. Anvone having to learn the rules and how to work through them takes ona fairly remarkable chore. So what we are doing is working on the Federal level to identify eligibility requirements. So far, we've identified 52 eligibility factors that are different in the two programs, and we are working now to determine which ones we can change to make them the same or similar, so it will be easier for eligibility workers to manage, and ultimately easier for those who are in need to access the system in both programs. We learned from this process, however, that we have to identify these [needed changes}. but we can't make all the changes ourselves. Many of the changes will require congressional approval, and we will be looking at changes we can make in the Federal Govern- ment and identifving when we need to go to Congress to request other changes. I found out one of these changes when I first came to this job. fi Alabama, I went to a Food Stamp office to apply for Food Stamps because I wanted to see how the svstem worked. I filled out lots of forms, and then the worker gave me one form that indicated T had to take it home and have my husband fill it out. I said, “Why? You're taking me at my word that I’m the head of the household, and all these other forms are OK for me to sign. Why do [have to take this one home for him to sign?” “Well, because that’s the requirement. Every adult in the household has to sign this particular form.” Well, that didn’t make anv sense to me, whatever; it was 84 Parents Speak Out for America's Children a form dealing with whether or not we were U.S. citizens, So, came back and asked questions about it, and alot of the eligibility workers laughed. We'd been telling vou that this was duplication fora long time. We proposed in the Farm Bill to Congress that they change this and eliminate the two signature requirement, and we got it changed. That was the good news. Then we found out that AFDC and Medicaid have the same requirement. The final point on service coordination that I want to mention is what [ think is the most exciting one we are working on, and that is called Electronic Benefit Transfer. We have now in the Food Stamp program a pilot project, and I want to explain what itis. This EBT, as it’s called, is using the equivalent of bank ATM [Automatic Teller Machine] technology for the pur- pose of providing benefits for Food Stamps and, poten- tially, for AFDC, WIC, and other programs as well. The wav this works is, or would be, that there are no longer food coupons in anv community that undertakes this project. People geta plastic card and have a private PIN [Personal Identification Number]. The State or the county programs the amount of money that would otherwise be food coupon money into the account. When a client takes the card to the grocery store, the recipient runs this card through a machine at the checkout line. and it debits the appropriate Food Stamp account for that month, She could also use it. if itsan AFDC card. in a bank cash machine to take out her AFDC allotment, not necessarily in one lump sum, although that is certainly her option, but also in any amounts that she wants for the month. We have, in the areas where we are testing this [EBT]—Reading, PA; Albuquerque, NM; Casper, WY (for WIC): Ramsey County, MIN; and Baltimore, MD— only praise from clients who have been using this and from the Government and the private sector who have been using it as well, with one exception that I will mention ina minute. The people who use Food Stamps in AFDC have been thrilled with it, and the comments that we hear and the research that we have sav that people like it. Thev like it because, first of all, it gives them security: people don’t have to wait at the mailbox “Children are empowered by getting a good breakfast and lunch at school so that they can learn better.” (as they must if their food coupons or their AFDC ts mailed) to make sure thev get it. Thev don't have to cash the AFDC check in one lump sum and sometimes pay money to a check cashing place to get it cashed: it empowers them to be able to make decisions about how much money they want at each particular tine. When they use this card in the grocery store, they don’t have to deal with the coupons and counting out the coupons and dealing with it; they don’t have to deal with anvone else trying to steal and use their coupons before thev get to the grocery store. It’sa quicker way to get through the system when they get to the grocery store. In Wyoming, one woman ata cash register told me that she had been a WIC client and now she was working, managing the cashiers in the store. One of the reasons that she liked working there was that the card took the confrontation away in the line. Because (this program was in WIC, she said, but it could work in WIC or Food Stamps) the machine says what’s eligible and what's not eligible, there doesn’t have to be a battle between two people for that purpose. It’s a benefit for the stores; it helps them move people through the line faster. It’s a benefit for the clients on WIC because vou don’tget one voucher, one time a month. When vou get one voucher once a month vou have to use it all, and that’s tough if thev don’t have your type of cereal that day. With this new system, vou can go back and use the card again; vou don’t have to buy all of vour milk once a month and have it rot in the refrigerator, but you can go back over and over again. It’s a real plus. It'salsoa plus for the taxpayers, I have to say, because it will ensure that all of the money that the taxpavers are spending on food—in our budget thisyear 1s $34 billion— will be spent on food, and it will be an overall plus. What we have to do is ensure that it’s cost effective, and the way that it’s cost effective we hope, through our studies, is through combining services. If we combine Food Stamps and AFDC and per- haps WIC, and perhaps someday other programs that we can save on the administrative costs, which J think was mentioned by a couple of speakers before, it will help us in the long run. That is the one problem: we have not vet proved that it will save administrative money, but we are determined to do that. States can implement this program for Food Stamps after April | of this vear without a demonstration project. As far as improving services, as Secretary [of Agricul- ture] Madigan said. President Bush for the last 2 vears has increased the WIC program by proposing larger increases than any president ever--$223 million last vear, $240 million this vear. That combined total is going to help us serve more than 300,000 more people in the WIC pro- gram. Improving services in WIC goes bevond just putting more people in the program; it extends to improving the actual services that we provide. One of the things that we've done in the WIC program is to look, for instance, at the issue of promot- ing breast feeding, and the issue of helping to empower mothers to make a choice between breast feeding and bottle feeding after thev have given birth. Once when I visited a WIC store in Mississippi and went through the line looking at what I would buy, I told them I was a breast-feeding mom. I wanted to go through the line as a breast-feeding mom and pick up the food I would get. I picked up my peanut butter, eggs. cereal, milk, and my other products and then they said, “Oh, well, if vou weren't breastfeeding. here, this is the formula that vou would vet.” Well. there was so much formula for the Report of the Surgean General’s Conference 85 month that | couldn't carry it out of the store! It is no wonder to me that only 10 percent of WIC moms breastfeed, when people may be thinking that they mav be giving up this wonderful option of this great formula for their child. Not only would we like to empower women in making this choice, but also provide more nutrients for women who are breastfeeding. We filed a notice with the Federal Register asking for comments, and we intend to file a proposed rule as soon as we can to offer a separate package for breastfeeding moms in the WIC program. In closing, school breakfast is critical for children all of our studies coming to school ready to learn show that. Half the schools that have lunch also have breakfast; we can have more. We've been going around the country encouraging schools to offer school break- fasts, and it’s really critical for children to come to school ready to learn, The summer food program is available—schools can offer it during the summer and private non-profit schools can offer it during the sum- mer to help children have meals at school. All of these programs empower people. The WIC program em- powers mothers to help make good decisions bv educa- tion and nutritional support. Children are empowered by getting a good breakfast and lunch at school so that they can learn better. These programs are empowered by your comments and your direction to us. The solutions? How can we work together? EBT can start in States for Food Stamps after April of this year, You can tell vour State administrators and vour county administrators that vou think that thev ought to have EBT. You can work with our regional offices. We will work with you, and I will take Jim Mason’s lead and work with the public welfare administrators and com- municate your comments specifically when I meet with the State Welfare Commissioners in 2 weeks. We can work together with changes that will simplify the appli- cation of AFDC and Food Stamps when we come up with proposals. We can work together because we need your help convincing our colleagues on the Agricul- tural, Wavs and Means, Finance, Education, and Labor Committees. It would be helpful ifwe had similar rules for all of these programs. You also can help bv going to 86 Parents Speak Out for America’s Children your school, and if vou don’t have school breakfast, tell the school, school board, or someone else who is a decisionmaker in your community that you want school breakfast for the children in vour school. It’s an entitle- ment program; the Bush budget anticipates at least 500 schools entering the program next year, but it takes community leadership and community support to get that done through the schools. Every person in this room, those of us at this table, be they the parent presenters or the people in the Administration, can do a lot to work together so that we can take your direction, the thoughts that we have, and implement. We can implement the President’s direction to us to reorient government to better serve the needs of individuals. Thank you very much. Wade Horn, Ph.D. Commissioner Administration for Children, Youth and Families US. Department of Health and Human Services It is a pleasure to be here today at the closing day of this Conference and I] want to thank the Surgeon General for the invitation to participate here, but particularly to thank her for her wisdom in acknowledging and recognizing the importance of the role of parents in helping to get their kids to school healthy and ready to learn. If we needed any validation of how critically important parents are, we've heard that from the three representatives here on the panel this morning. Tlearn not just from parents but also from my own children, which I think all of us do. And it’s because of mv own experiences with my own kids that I have remained committed to trving to help as best I can in my present position, help programs help parents raise their kids, because kids are our future. I could be real briefhere and I could sav, “Guess what, 1 run Head Start. Head Start works: it’s great,” sit down, and everybody could applaud. Because Head Start isa great program: becaitse it, in fact, embodies much of what itis that the parents talked about today. It embodies parent involvement and empower- ment. Head Start has long recognized that parents are the firstand most important educators of their children, And we've embodied that empowerment in the Head Start parent policy councils. Also, Head Start integrated health services with social services long ago. Do vou know that Head Start makes arrangements for one of the largest delivery systems of health services to poor children in this country Last vear, more than 600,000 children in Head Start got free medical and dental screenings and followup treatment, as well as immunizations, through the Head Start program. It has also been a leader in removing barriers to children with disabilities in terms of incorporating them and involving them in the program as well. Head Start has long recognized that children with disabilities need to be mainstreamed. We were doing that back in 1965. Iwas in the 5th grade, butin 1965, we were doing that. And we were a leader in that. In fact, todav, almost 14 percent of all children enrolled in Head Start are children with disabilities. We even pay parents for their knowledge. Do you know that almost 40 percent of all paid staff in Head Start are parents of children either currently enrolled in Head Start or formerly enrolled? But I'm not satisfied, and we shouldn't be satisfied because there is still much to be done. Lam just going to mention three new challenges and initiatives we are undertaking in Head Start. First ofall, we need more money; we need to serve more kids. The President, over the last 4 years, has increased our budget by $1.6 billion. That's an incredible achieve- ment—that’s real money, even here in Washington. The second thing we need to do is increase services to adults of children enrolled in Head Start. In the old davs. we had this naive belief that we could save children by taking them out of the home, working with them, and sending them back. We know that doesn’t work. Ifwe are going to help children, we have to help their parents. Over the last 3 vears we have been improving the kinds and quality of services to adults of children enrolled in Head Stat, particularly in the area of adult literacy. By the end of this vear, we will have an adult literacy program in every Head Start program in this country. We need to do a better job of working with substance abuse problems where thev exist in the families we serve. A recent study shows that at least 20 percent of all adults who have children enrolled in Head Start have a serious substance abuse problem. We need to do a better job, and we've been working with Dr. Mason and his staff, particularly in the Office for Substance Abuse Prevention and also with the Office of Treatment Improvement, to try to better coordinate services around substance abuse issues in Head Start. focused on the parents. The third thing we need to do is to use Head Start as a wedge to increase job skills of the parents who have their children enrolled in Head Start, and we’ve been doing that in active collaboration with the new [Job Opportunities and Basic Skills training] JOBS program, the 1988 Family Welfare Act. and also with trving to merge or coordinate with the [Job Training Partnership Act] JIPA programs as well. We have to recognize that times have changed. We have a number of homes with no parents at home when Head Startis done at 12 noon. We have to doa better job of coordinating with new childcare monies, and particu- larly childcare development block grant monies to ensure that, for those Head Start children who have parents emploved outside the home, we can keep those centers open so those kids don’t have to be bused across town toanother cenler or worse vel (and it a vs happen h sent home with the hope that somebody is there. Report af the Surgeon General's Conterenee 87 Finally, in terms of transition, we have to do a better job of moving kids from Head Start into the public schools. Larrv Bell talked about making our kids ready for school. but he also said that we have to do a better job of making our schools ready for our kids. We do. Sometines people point to Head Start. and they sav, “Do vou thinkit’s asuccess? It’snotasuccess. Because vou know what? After your kid gets a vear or two of Head Start, 5 vears down the road, the gains start to clissipate.” And I say, “Sure. If the child graduates into neighborhoods that are riddled with violence, ifthe child graduates into homes thatare riddled with substance abuse, if the child graduates into schools that are unresponsive to the needs of their children, what do vou expect?” Head Start is not an inoculation against evervthing that can possibly go wrong in that child’s community. The fault is not Head Start’s; we need to do a better job of what happens to those children when thev leave Head Start. That's why it’s been so gratifing over the last 3 vears to work with Jack MacDonald in ensuring that we make those connections between Head Start and the public schools. Thank vou for the invitation to be here. Christine Nye Director Medicaid Bureau Health Care Financing Administration J want to thank [parent presenters] Larry Bell. Sherlita Reeves, and Ellie Valdez-Honevman for vour comments this morning. It’s always so crucial and important that we hear the things that concern and interest vou, Much of what I heard this morning had to do with the Medicaid program. The interesting thing about this Conference and what I’ve heard this morning is thatitstruck a relevant chord for me not only as a parent but also as an adminis- trator of the Medicaid program. As Dr. Mason said, I really didn't know how to frame my remarks to vou this morning, but it’s absolutely true that vou want these things to happen. We want these things to happen too, so why don’t they happen? Let's make them happen, and I think that is so important. Not only are we all as parents somehow affected or infected by the things that vou said this morning; it goes deeper than that in other wavs too. 88 Parents Speak Out for America’s Children For example, Pm the parent of two daughters, one of whom would have been 4+ a month ago, but who, despite all the efforts of technology, died. And I’m also the parent of a little girl who will be 3 next week. So I have, personally, because of that, a deep commitment to manv of the things that vou do. Similarly, I can go through people in the Medicaid Bureau who are work- ing on eligibility policy, on home- and community- based waivers, who also have a commitment to making things better, not only as professional people working in the Medicaid program, but who also are personally involved in some of the things that vou are involved in as well. And that occurs not only at the Federal level— that we as people share these things—but also at the State and local levels. Iwanted to make afew comments today, and there are many things that] could say—so many things that we are trving to accomplish, so manv areas where we are sull falling short. so many things that we have to work on together, Medicaid is a massive program. It serves almost 30 million Americans, and 17 million of those are Children. Children are disproportionately repre- sented in terms of the number of those in poverty that are served, More children in poverty are served than adults or the disabled, for example. But despite that, and you all know this, it's become such a visible thing of late, that we still serve less than 50 percent of people in poverty in this country despite the fact that we are spending over $100 billion on Medicaid this vear. So, Medicaid is receiving a lot of focus, not only through reforms in the Medicaid program but also, more re- cently, through the President’s proposal for health reform in terms of Medicaid’s kev role in that svstem and also through additional key reforms that have to be made in Medicaid to make it more responsive to the American people. There have been enormous changes in the Med- icaid program lately in response to the concerns and issues vou've raised. There have been expansions in eligibiliwv. There are options and mandates in many States; as many as 20 States have enormously expanded eligibility for children to the maximum. There are changes for pregnant women and for infants, again, enormous changes, in response to the concerns ex- pressed by you and others. I think the concern thatI’ve heard expressed repeatedly is about the dropoff or the “falling through the cracks.” That problem is one that has not been addressed adequately so far, but again I think that the President's proposal is one that would address it. In terms of service expansion, again, in Medicaid, there is an enormous recognition of some of the prob- lems that are faced—increased flexibility in providing waivers to keep disabled and other children at home and notin institutions, and enormous changes in terms of the increased use of case management for various population groups in Medicaid, particularly for preg- nant women and for children, but also for disabled children. What I consider the greatest child health reform in Medicaid since it was enacted is the enormous expansion in the Early Periodic Screening, Diagnostic. and Treatment Program, the EPSDT Program, the child health screening program in this country. Along with service and eligibility expansion, there are also enormous concerns about access. Trving to streamline these application forms, getting eligibility workers out to places, and trying to expand the amount of dollars paid to community health centers and persons you can effeet change, through your effective advocacy.” providing obstetrical and pediatric services are allaccess issues in dealing with red tape problems, trying to overcome some of the barriers that physicians and other providers have with Medicaid. But again, as Dr. Mason said, these are things that vou and I believe, and they are happening, but we need to continue to make them happen. One thing that isa reality about Medicaid is that it is a Federal-overseen and State-administered program. States have enormous flexibility, which is both a strength and a weakness in the program as vou try to make the kind of changes that are most appropriate for vour communities. Through your networks, the power and cohesion vou are developing, vou can effect change, through vour effective advocacy. I would suggest, as a followup to this conference, and maybe this is already planned, that you debrief vour State Medicaid people about the kinds of things that vou discussed and that came out of this conference. We had a handout here; it was a one-page informa- tion sheet about Medicaid, and on the flip side was a list of all the regional offices for the Health Care Financing Administration and the people there whom we have designated to be responsible for maternal and child health issues. Those people are available to you to help vou to approach and access the svstem. Also, we have a wonderfully knowledgeable person, Bill Hiscock, who will be more than willing and eager to answer your questions. In terms of your questions, “What are you going to do with these recommendations and all the time that we've spentand the heart-felt feeling thatwe have about changes that need to be made?" I have found this enormously helpful and also rejuvenating in terms of my commitment in trying to make some of these things happen, clarifying policies in what Medicaid will and will not cover and in transportation, and making sure that States are implementing the child health screening service appropriately. So, for that I want to thank you. I wish you much success when vou return to your States and discuss at that level the things that vou have discov- ered or heard. Report of the Surgeon General's Conference 89 Lou Enoff Principal Deputy Administrator Social Security Administration laccepted a call from Dr. Novello Jast evening, and I will tell vou I'm glad I came. I'm glad I accepted, and it isa real pleasure to be here. I, too, am a parent. My youngest is graduating from high school this vear, but I am also an expectant grandparent, I don’t have a picture yet, but I have a sonogram, if vou'd like to see that. We're anxiously awaiting that. I’ve been involved in the activities of all three of our children in the schools, in the curriculum council, and in the PTA, and I just want to say, keep up what vou are doing. I'm here not only because I'm a parent. You're probably saying, “What the heck does Social Security have to do with kids?” Well, most people think of Social Security as a retirement program. And we are, I think, avery successful retirement program. We have a budget of over $300 billion, and we pay 40 million checks every month on time—we’ve done that for more than 50 vears. We have 1,350 offices around the country, where Tassume you all get verv good service when vou go there. We have people who serve you with compassion and efficiency. We're proud of that. But many people don't realize that we at Social Security also have a great deal to do with children. Every month, we pay more than SI billion to more than 3 million children under one of the Social Security programs because, in addition to retire- ment, Social Security has a survivor's program and a disability program. We pay children of retired workers, children of disabled workers, children who are them- selves disabled, and children whose parents are de- ceased and where there is a need for income. So, everv month we do pay 3 million kids more than $1 billion. Let me speak for a moment about some of the things that we have done in response to the questions that have been raised here. First, in terms of access, a few years ago Social Security installed an 800 telephone number, toll free, nationwide, 12 hours, from 7 a.m. to 7 p.m., so that you can call us from anywhere in the country. You'll get someone who will help you, includ- ing bilingual help. If you need a referral, we can refer from there. We're talking about Social Security 90 Parents Speak Out for America’s Children “We are.your servants here here to help you.” p business, generally. We can’t refer you for everything, but we will help vou if vou call us on that 800 number. We can make an appointment for you in one of the offices if vou need to come into the office. We're trying to bring that service to where people can access it from their home, if they need it. Second, I would mention the program that we administer called SSI, Supplemental Security Income. Itreaches another 4 or 5 million eligible people. Com- missioner King launched an SSI Outreach Program. We recognize that we in government cannot do this alone. We cannot find the people who might be eligible for this program and who have a needs base there. Butwe know that vou in the community do know about people, so we've begun an outreach campaign in all of our local offices where we trv to educate those who are involved in the community to help us find those who may be eligible for the program. It’s been very successful, and we've had a 20 percent increase in applications in both of the last 2 years, and we are continuing to forge those partnerships with commu- nity organizations. We need your help, and we'd be glad to work with you in any of your organizations in helping to find persons who may be eligible for SSI. Also in the last 2 vears, we have launched a special program for children with disabilities who may be eligible for SSI. Some of you may have heard of the Zebley court case. In that situation, we've developed a whole new procedure for determining disability in children. We’ve worked with pediatricians, school so- cial workers, and others to define what disability means in a child. We’ve had a lot of help from the Public Health Service, and we've had a lot of input from community groups. During the last vear and a half, we've taken 450,000 applications from children with disabilities, and we've increased the number of persons receiving those benefits from about 200,000 to more than 400,000. You mentioned one-stop shopping. Working with our colleagues in agencies represented here, we've begun to integrate our services. We are locating our offices whenever we can together with other State, local, and Federal offices that have the same clientele that we do. Secretary Sullivan has launched a program of inte- gration of services, and all of us in [the Department of Health and Human Services] HHS are working closely to try to coordinate our service delivery at the local level. We do have a standard of service. For the first time, we have published standards of service for our offices, and we have just begun receiving public input to that. We will be modifying that as we go along, and we will be publishing our goals and how long it should take you to receive service in a Social Security office. We issue a Social Security card, for instance, in 10 days now. It used to take us a month to do that. We have other goals, too. We are trying to determine what is most important to the public so that we can put our emphasis in that area. I think it was Ms. Reeves who said, “What will we do, ifwe don’t like what we hear?” Well, I hope you'll call us, if you have a problem or a concern about Social Security. I mentioned the 800 number; if you call that number and don’t get satisfaction, I hope you'll call me. My number is 410-965-9000. We are your servants here; we are here to help you. Report of the Surgeon General's Conference 91 ov Jajydeyy) Commitment of Our Leaders Fz Chapter 5 Commitment of Our Leaders resident George Bush and prominent members of his administration expressed their personal commitment to the Healthy Children Ready to Learn Initiative by attending the Conference and speak- ing to the participants. President Bush delivered his keynote address in the afternoon of the first day. In addition, each day of the Conference began with a keynote speech given by heads of the cosponsoring Governmentagencies: Secretary of Health and Human Services Louis Sullivan; Secretary of Agriculture Ed- ward Madigan; and Secretary of Education Lamar Alexander. Roger Porter, Assistant to the President for Economic and Domestic Policy, also addressed the participants. This section contains their remarks.! George H. Bush President of the United States ight I just say at the beginning of these brief remarks that J am very proud of Lou Sullivan and what he’s doing as Secretarv of Health and Human Services. He’s doing a superb job, and we all are grateful to him. And let me just say it’s a pleasure to be here today to help launch this historic Conference. I particularly want to thank our Surgeon General, Antonia Novello. She has inspired people all across the country with her example and her message. And she “AH children have a right to be healthy.” Then she says, “We need to sums it up this way, better than anyone: speak for those who cannot speak for themselves.” That’s whv you’ve gathered here this week, and you've come to lead a great movement of parents, doctors, teachers, public programs, and private enter- prise—a movement destined to transform America. Here’s our goal: By the year 2000, every American child will start school healthy and ready to learn. Our success will provide a lifetime of opportunity for our children. ‘Some of these remarks have been edited for clarity. 94 Parents Speak Out for America’s Children It will guarantee the health and safety of our families and neighborhoods, and it will ensure that America remains the undisputed leader of the world. Now, Iam proud that our administration is part of this movement. In this administration, families come first. We're proud to join hands with people like Trish Solomon Thomas, who has come from New Mexico to be here this afternoon. She has two children, both of nourishment that no government program can ever hope to.provide.” them with special health needs. She perfectly expressed the spirit of our movement when she said, “I used to be shy, but I had to learn to stand up for my kids.” And that’s why we're here, to stand up for our kids. We will not let them down. Our movement draws its strength from Trish and the millions of parents like her. The title of this Conference says it all: “Healthy Children Ready to Learn: The Critical Role of Parents.” Parents are a child's first teachers, offering the love and spiritual nourishment that no government program can ever hope to provide. If I can brag for just a minute here today, you may know of Barbara’s work promoting literacy. I’m very proud ofher. She wants to help parents understand just how important it is to read to their kids. When parents read aloud to their young ones, they open their children to the jov ofa larger world; thev teach the self-assurance and curiosity that comes from learning. Barbara asked me to extend her best wishes. She's now on a learning program, an education program right this minute, in the State of Mississippi. Our movement instills the habits of good health: wholesome nutrition, sound hygiene, and protective mea- sures like earlv immunization. Parents know that learning and health are two sides of the same coin. Again, parents, families, and communities are the kev. But government can help and must help. Last June, for example. Dr. Sullivan and I, with able advice from Dr. Novello. took steps to ensure that no American child is at risk from deadly diseases like polio, diphtheria, and measles. We launched an initiative to support childhood immuniza- tions, especially immunizations for kids in the early vears of life. Now, that’s a crucial step toward meeting our goal. I'm proud we've been able to help. Since 1988, we've more than tripled the dollars for Federal immunization efforts, from $98 million to $297 million for 1992. On Friday, Dr. Sullivan and the Surgeon General and I] were outin San Diego, and we had the privilege of visiing Logan Heights Family Health Center to see firsthand the benefits of this initiative. We spoke with parents and community leaders, and everv one of them stressed the importance of early immunization in pre- venting illness. Logan Heightsis, one of many, I'm sure, a perfect example of what can be done if concerned inclividuals set their minds to it. The Center was founded by a wonderful woman named Laura Rodriguez, who's become one of our administration's Points of Light, helping others and setting an example in the process. Laura saw a need, and with hard work and dedication, she rolled up her sleeves and did something about it. Logan Heights now serves 75,000 patients a year. So 1 sav, “Thank God for people like Laura. She’s an ex- ample for all of us.” There are many, many other examples right here in this room. For those kidswho needa head startin preparing for school, we’ve made sure that thev'll get it. In the last 3 years, we have almost doubled the funding for Head Start Report of the Surgeon General's Conterence 95 programs. and this year, | have proposed the largest single increase in Head Start’s historv: $600 million. This vear’s increase will ensure that 157,000 more kids will be able to start school ready to learn. Head Start brings children and parents into the classroom and into the learning process. Head Start works because parents take the lead. You may not know this, but volunteers in Head Start outnumber “Our great challenge, then, istokeep what worksin our system, and then reform what doesn’t work.” paid staff by eight to one. Head Start works because people care. We're making sure it continues to work. If it’s good for America’s kids, it's good for America. These are important steps. But there’s more to do. We must address the larger issues of American health care. Last week, I proposed a four-point plan to do just that. Every American family must have access to affordable, high-quality health care. I don’t need to tell you that the American health care svstem has problems. The crisis has probably touched many of vou right here in this room. Right now, more than 8 million children go without health insurance because skyrocketing costs have placed cov- erage bevond the reach of their parents. And even parents whoare covered worry about losing their family’s insurance if they move on to a different job or, worse still, lose the job they have. You shouldn’t have to live 96 Parents Speak Out for America’s Children with this kind of uncertainty. No American family should, and mv proposal would put an end to that. Yet I think we should keep one thing in mind. It’s important to remember that, for all its problems, our health care svstem still provides the best health care in the world. That's why people from all over the world come here seeking better care. Most often they're trying to escape health care systems in which the government dictates how much care you'll get and what kind you'll get and when you'll get it. In America, that’s unacceptable. Our great challenge, then, is to keep what worksin our system, and then reform what doesn’t work. We must maintain a maximum freedom of choice and the highest quality care. At the same time, we must make sure that our children have access to health care their parents can afford, sick or healthy, rich or poor. That's what this four-point plan does, and let me just briefly spell it out for you. First. I want to make health care more affordable and accessible. I want a $3.750 tax credit for low-income families to help them buy health insurance; for middle-income families, I’ve proposed a tax deduction for the same amount. Poor people, those who don't file taxes, also would be cov- ered under this plan. Second, to cut costs, we will make health care more efficient. The math is simple: The larger the group being covered, the lower the cost per individual. So we've proposed health insurance networks that bring companies together to cut administrative costs and make insurance affordable for working parents. And third, we must cut out waste and abuse. We can start with medical malpractice lawsuits that drive up the cost of care for evervone. A doctor pestered with frivolous litigation ends up passing his legal costs right along to you, the American people, and right along to the patient. When vou go to the doctor, I don’twantyou to have to pav a lawver, too. Just pay the doctor. Finally, we must slow the spiraling costs of Federal health programs. These costs are rising far beyond the rate of inflation, and that only endangers important benefits while making less money available for more pressing needs. There it is. A common-sense reform that will maintain high-quality care, cut costs, ensure Maximum freedom of choice, and give every family—rich or poor, sick or healthy—access to health care. IT know how important this is. particularly for parents who have children with special needs. Mv plan will ensure that vou can change jobs without endangering the health insurance on which vour child depends. We're build- ing on our system's strengths. We're avoiding the pitfalls of nationalized care. the kind that people from all over the world come to America to escape. All these approaches for meeting our goal of healthy children ready to Jearn must build on a basic truth, that, in this country, families come first. Govern- ment programs that overtake the rightful role of fami- liesand communities, deny them the freedom of choice. or bind them up in red tape are simply unacceptable. Our movement is about strengthening families. Over the next few davs, Pm told vou will continue agreal national dialog. share information, explore new ideas, and then return to vour communities to lead the good fight. Your commitment is an inspiration, and | thank vou for inviting me to get a feeling of it firsthand. May God bless all of vou. Thank vou all and mav God bless America. Thank vou very, very much. Louis W. Sullivan, M.D. Secretary of Health and Human Services ood morning. It is a sincere pleasure to welcome evervone to the “Healthy Children Ready to Learn” Conference. I'd like to take a moment to commend mv colleague, Dr. Antonia Novello, who has been working diligently during her tenure at the Department of Health and Human Services to improve the health and well- being of America’s children. This very imely and important Conference is the culmination of 18 months of planning among the Office of the Surgeon General, the Departments of Agriculture and Education, the National Governors’ Asso- ciation, and so manv others. | am confident that this Confer- ence will play an essential role in our departmentavide effort 10 improve school readiness, You know it is not often that we policvmakers in Washington stop to confer with the real experts about the challenges facing American children. But today we are. Todav. we are convening parents from every State in our Nation. Together with educators and health professionals from the front lines, we can network, share promising programs, and strategize about how we can meet the President's first National Education Goal that “by the vear 2000 all children in America will start school ready to learn.” As we all know, a good beginning is often the key to success. This is especially true when we speak of children. As parents. health care professionals, psy- chologists, educators, and others who work with chil- dren will attest, the experiences of childhood shape the course of a lifetime. This sentiment was beautifully captured bv John Milton, who wrote: “Childhood shows the man as morning shows the day.” Report of the Surgeon General's Conference 97 What determines whether a childhood is a beau- uful sunrise in warm tones of amber and crimson, ora grim, colorless dawn? First and foremost, a child needs to be secure in the love of his or her parents. A father who reads to his child each night before bed, or a mother who proudly displays cravon masterpieces on the refrigerator, is really laying the groundwork for a positive school experience. In addition, a warm, color- ful childhood is a healthy childhood. Children’s health and their ability to learn are mutually dependent. Be- ing ready to learn depends upon a child having enough to eat, being protected from preventable diseases, grow- ing up free from environmental pollutants, and having access to health care. Helping parents to provide a healthy childhood for their children is a central part of the mission of my Department. In his fiscal year 1993 budget, President Bush has provided us a blueprint for action. The President's budget proposal has three areas of emphasis: First, we must invest in children; second, we must focus on preven- tion; and third, programs must empower parents. Investing in Children Investing in children is simply good health care policy. The time and resources we devote to children now will pay continuous dividends in the future in the form of healthier and more productive citizens. In recognition “T the fir id best department off ealth vservices. And:¥’d like to say, as well, that parents ay first and best. eMepargnent of 98 Parents Speak Out for America’s Children of this fact, the President's budget proposes to increase investment programs serving children to $100 billion, up from $60 billion in 1989. Healthy Start The first few vears of life, beginning in the womb, are the most crucial period of child development. There- fore, if we truly desire to invest in the next generation, we must begin before the child is even born. We must begin by making sure every mother receives early, quality prenatal care. Overall, nearly 25 percent of all women—and nearly 40 percent of Black and Hispanic women—do not receive prenatal care in their first trimester of pregnancy. Lack of prenatal care is a contributing factor to this Nation's disgraceful infant mortality rate. Despite spending more on health care than any other nation, the United States remains 24th among nations in the rate of survival of infants. Each vear, 40,000 American babies do not live to celebrate their first birthday. Black babies are more than twice as likely as white babies to die. The President and [ have made infant mortality a national priority by developing a new infant health initiative, Healthy Start. Our strategy is to concentrate resources 1n 15 communities with stubbornly high in- fant mortality rates. Each community is given the flexibility to create a mix of services tailored to the needs of their population. We are requesting $143 million to provide these 15 communities with the re- sources necessary to fully implement their detailed strategies for reducing infant mortality rates by at least 50 percent over a S-vear period. We will use the knowledge gained from these demonstration projects as a model for other communities across the Nation. Focus on Prevention The President’s budget also will focus resources and attention on preventive health programs. Common sense argues that it is better to invest in prevention and screening programs than to wait until the advanced stages of disease. when treatment is more complicated and more costly. “It ismo surprise that our most suc- cessful programs for children—like Head Start—are built upon direct parental involvement.” Immunizations Childhood immunizations are among the most cost- effective prevention activities. A $1 investment in measles-mumps-rubella vaccine mav return $14 in avoided medical care costs. We can be proud of the fact that 97 percent of American children entering school are immunized. However, to be fully protected, chil- dren need to be properly immunized by the time they are 2 years old. Our rates among preschoolers are much lower, and in some inner-city areas, the immunization rate among 2 vear olds is an abysmal 20 percent. That is why the President has requested $52 mil- lion for our immunization activities—an increase of 148 percent since 1989. My Department will use this in- crease to target those children most at risk. These dollars will translate into 6.7 million polio vaccinations, 4.1 million measles-mumps-rubella vaccinations, and 2.6 million hepatitis B vaccinations. Lead Poisoning Lead poisoning, the most common environmental dis- ease of young children, is another preventable disease. As many as 3 to 4 million American children under 6 vears old may have lead levels in the blood high enough to cause developmental delavs, learning disabilities, behavioral problems, decreases in intelligence, and even death. Low-income, minority children growing up in ur- ban areasare mostat risk of having dangerously high levels of lead in their blood. The President’s budget requests $40 million, a 90 percent increase, for CDC Lead Poison- ing Prevention Grants. These grants will support about 30 statewide lead poisoning screening programs. Empower Parents The third emphasis of the President’s budget is the critical role of parents and the need to support programs that empower parents. I trulv believe that the family is really the first and best department of health and human services. And I'd like to say, as well, that parents are a child's first and best department of education. Educators often speak of the “hidden curriculum of the home” to describe the important lessons we learn during our first few vears of hfe. We learn that our parents love us verv much, and that gives us a sense of security. We learn how to share, and we learn right from left and right from wrong. These are not easy lessons to teach. And all too often this learning does not occur because parents cannot, or do not, attend to the needs of their children. It is no surprise that our most successful programs for children—like Head Start—are built upon direct pa- rental involvement. Head Start Head Start has won the confidence of the American people. It is known as a program that works and a program that is worthy of our tax dollars. Many of you in the audience are familiar with Head Start; some may even serve on parent councils, which guide the opera- tions of the individual centers. President Bush, a firm believer in the value of Head Start, has proposed the largest single-vear funding in- crease in the historv of Head Start. The $600 million he has requested will serve an estimated 157,000 additional children in 1993. These additions would mean that funding for Head Start has more than doubled since President Bush came to office. This unprecedented increase in Head Start supports participation ofall eligible and interested disadvantaged children for one vear. Report of the Surgeon General's Conference 99 The President's Health Care Proposal In addition to targeted interventions such as Head Start and Healthy Start, the President announced last week his health care reform proposal. Under the President’s plan, the middle class will get help to pay for health care through a new income tax deduction. For poor families, the plan guarantees access to health care through another new feature: a health insurance credit. In combination, these tax provisions will help more than 90 million Americans and cover 95 percent of the uninsured. This morning I’ve outlined the tremendous new resources that the President wants to make available for children. But more money alone is not enough. The critical element of any initiative to help children is par- ents. Unfortunately, for reasons ranging from parental exhaustion to preoccupation with careers, children todav spend 40 percentless time with their parents than they did in 1965—an average of onlv 17 hours aweek! To put that figure in perspective, American children spend an aver- age of 25 hours watching television each week. I'm encouraged to see so manv parents and child experts gathered for this Conference. Over the next few days, you will have the opportunity to use your combined expertise to move this Nation toward the goal that all children will begin school ready to learn. To borrow again from Milton, vou will have the oppor- tunity to make childhood a warm and radiant sunrise, ushering in a dav of golden hope. Thank you all. Godspeed to all of the Healthy Children Ready to Learn participants. Edward Madigan Secretary of Agriculture utrition is basic. All things can be possible for a child who is well fed; very little is possible for a child, or a pregnant mother, or anyone for that matter, who doesn’t get the nutritious foods we all need to grow, to learn, and to excel. It’s our job to get that information to you and before the public and into everyday practice. There are 64 million children in the 100 Parents Speak Out for America’s Children United States today, and all of them share this need. That’s why we're here this morning. The President recognized the importance of a strong nutrition foundation in his education initiative. The first of his six National Education Goals is that “By the year 2000, all children in America will start school ready to learn.” To achieve this, we have to ensure that they re- ceive the nutrition thev need for healthy minds and bodies. That responsibility begins before children are born. Working with mothers, we must ensure that the number of low-birthweight babies is significantly re- duced through good prenatal care. Although we are investing large amounts of money and effort to help, it's the parents of children in these programs who have the primary role to play in their care and feeding. One of our best programs for reaching both children and the parents of children at risk is the Supplemental Food Program for Women, Infants, and Children, or WIC. This program provides supplemental food and nutrition education to low- income pregnant, postpartum, and breastfeeding women: infants; and voung children—all at nutritional risk. WIC serves one in three babies born everv vear. That's about 5.3 million participants this month alone. And our highest priority is low-income pregnantwomen and their infants. What's more, WIC has become a gateway to other government services, especially health care. Through WIC, pregnant women are learning about and obtaining health services they need. Local WIC agencies refer applicants to Medicaid if it’s likely thev're eligible. WIC is an adjunct to health care that participants receive at local health clinics. For example, WIC per- sonnel promote breastfeeding among program partici- pants, coordinate with State and Federal immunization programs, and provide alcohol and drug abuse preven- tion education and referrals. WIC is cost-effective. A major study done in 1987-88 in five States showed that Medicaid-eligible pregnant women who participate in WIC do indeed have healthier babies than low-income women who do not participate. Every dollar spent on prenatal WIC care was associated with a Medicaid savings of between $1.92 and $4.75 for newborns and their mothers. Last vear, the President highlighted WIC as a major priority to ensure that children enter school healthy and ready to learn. He requested the largest budget increase for WIC of any president. An even larger increase, $240 million in 1993, will enable WIC to reach 5.4 million women, infants, and children each month. Virtually all low-income pregnantwomen and infants who are eligible are enrolled in the program. This 2-vear effort will extend WIC benefits to nearly 500,000 more people. This year, President Bush is requesting a $600 million increase for the Head Start Program. Here again, we at the Department of Agriculture work together with another Federal program. Head Start provides education services under the Department of Health and Human Services; the Department of Agriculture provides the meals and snacks. Our counterpart program is the Child and Adult Care Food Program, which concentrates on preschool children, ages three to five, in non-residential childcare centers and family daycare homes. Today, the program is operating nationwide. in 170,000 childcare centers and daycare homes. It’s been a fast growing program, and many of vour preschoolers participate. Next year, we propose to spend $1.17 billion on the Child and Adult Care Food Program. We expect to serve 100 million additional meals in 1993, due in part to the continued expansion of Head Start programs. Of course, the program vour children probably participate in when they enter kindergarten or first grade is the National School Lunch Program. Through this program, schools serve almost 25 million lunches each school day in virtually all the public schools and in most of the private schools. Half of those are free or at areduced price, Our efforts to change this program are aimed at focusing our limited resources to those who need them the most, without sacrificing the program benefits to all of our Nation's children. Once again this vear, the Bush Administration 1s proposing a restructuring of the reimbursement for the School Lunch Program. Our proposal would reduce the cost for reduced-price lunches by a quarter, so that a studentin that categorv could get a nutritious meal for no more than 15 cents. For reduced-price school breakfasts, the cost would be reduced to a dime. More well-off children would find their per-meal costs increasing by $.06, a small price for such an extended benefit to those truly in need. This proposal would enable us to reach 250,000 more children who are currently eligible to pur- chase meals at a reduced price but are not participating. This year, we've made it much simpler for schools to establish a child’s eligibility for free school lunches and breakfasts. We've started a direct certification system under which schools now communicate directly with local welfare offices. [fa child comes from a family receiving Food Stamps or benefits under the Aid to Families with Dependent Children Program (AFDC), the child may receive free school lunches and break- fasts. Parents are not required to submit an application. Asaresult. schools report that they're serving more free lunches to eligible children than ever before. We don't vetknow how many more are benefiting, butindications are the pumber is substantial. As many of vou may already know, [am working to see that schools and daycare facilities begin to comply with Report of the Surgeon General's Conference 101 the 1990 Federal Dietary Guidelines for All Americans. Among other recommendations, these guidelines sug- gest that children and adults eata diet in which 30 percent or less of the calories come from fat. We're working to achieve that goal in the school lunch and breakfast pro- grams, and we're making progress. To assist in this effort, we’re conducting demonstrations in California, Colo- rado, Louisiana, Ohio, and Tennessee to test how schools can modify their menus to reduce fat, salt, and sugar and still keep students eating school lunches. We are testing or have tested four different types of low-fat hamburgers in six States last year, and the comments coming back from the schools were very favorable. In a few months, we will issue a publication and instructional videos to give cafeteria workers additional information they need to offer meals that meet the dietary guidelines. The new dietary guidance will be provided to more than 275,000 child nutrition program operators—some of you are here today—in more than 90,000 school districts across the country. I have prom- ised to provide schools with the tools they need to comply with the dietary guidelines by 1994. Our goal is to have at least 90 percent of all lunch and breakfast menus in line with the dietary guidelines by the vear 9000. I'd like to do a little better than that, and sooner. Some of you are parents of children who will be participating in the School Lunch Program, and vou need to be involved with vour school and its lunch program. Just as Head Start owes much of its success to parent involvement, the same holds true for school lunch. Our most successful school lunch programs are those where parents are involved. Besides school lunch, the School Breakfast Pro- gram serves almost five million children daily. And about 80 percent of school breakfasts are served free. The largest of our food assistance programs is Food Stamps. Eighty percent of those benefits go to families with children and about half of all Food Stamp partici- pantsare children. More than 12 million children receive Food Stamps each month. Beyond that, three out of four households with children also receive benefits from at least one other food assistance program. In 1993, the Department of Agriculture expects to spend almost $23 102 Parents Speak Out for America’s Children billion on the Food Stamp Program alone. Food Stamps are available for every needy person who meets the quali- fications and enrolls in the program. There are, of course, other food assistance pro- grams. During the summer months, the Department of Agriculture provides meals for children in low-income neighborhoods. In 1993, this program will provide about 100 million meals. We also distribute food pack- ages and commodities. Food packages are distributed on Indian reservations and to the homeless. We also have programs that distribute bulk commodities to orphanages, hospitals, soup kitchens, food banks, and meals on wheels. The food assistance programs do a very good job of providing needy people with food. But they need to do more than that. We must make use of these pro- grams to teach people about the critical relationship between diet and health. We need to do more than provide good food. We need to provide food that is good for them in the right mix. We need to help them understand the difference. The Nutrition Education and Training Program, known as NET, supports nutrition education for school food service personnel, teachers, and students. NET has done a good job in the Nation’s schools. But some areas deserve more attention—such as educating preschoolers in the Child and Adult Care Food Pro- gram. The President’s 1993 budget requests a 50 percent increase in NET funds next year. These new funds will be used to expand nutrition education and training to childcare providers who serve verv young children. We will develop preschool curricula as well as materials that show care providers how to serve safe and nutritious meals and snacks. I want to mention the National Food Service Management Institute, sponsored by the Department of Agriculture. The Institute began operations at the University of Mississippi in 1990. It helps school hinch operators improve both the quality of meals and the operation of child nutrition programs. We expect the Institute to be a valuable source of consistent training and research-based information. From the beginning, WIC has made nutrition edu- cation an integral part of the program. In 1993, we will spend $115 million on nutrition education to help par- ents learn about the right foods to serve their children. To further improve the nutritional status of the neediest WIC participants, we have requested $12.5 million for our Extension Service to provide intensive nutrition training for the most needy. We will use these funds to serve 50,000 new WIC participants, in addition to the 91,000 now served through the Expanded Food and Nutrition Education Program. The President’s budget also proposes $4.5 million in State grants to develop and distribute training and nutrition education materials for hard-to-reach adults. The objective here is a nutrition message sensitive to income, educational levels, and cultural preferences. The breadth of our food assistance efforts affects many people. In total, this month, we’ll reach over 50 million Americans. This effort begins with informed, engaged parents who are taking an active role in the programs that affect their children. I urge you to work locally to see that these programs succeed. Everyone who can and should be enrolled in these programs needs to be enrolled. They are among the most success- ful and helpful in government. In many cases, it takes you to make them work. Keep atit. There are 64 million children depending on you and on me. We can make a difference in their future. It’s our future as well. The stakes are too high for us not to succeed. I thank you, and God bless vou. Lamar Alexander Secretary of Education an vou imagine a more irrepressible Surgeon General than Antonia Novello? She called me a few months ago, and then she came by to see me. I said, “Now, I will be glad to come see you,” and she said. “Oh. no, [want to come see you.” So she came over to see me, and she told me about her ideas for this Conference and how she wanted to focus the idea of healthy children with the first National Education and how she wanted Goal—children ready to learn the various Departments, those of us in the Federal Government who work in these areas, to join in and to work with the Governors. But more than anything else, we wanted to invite and bring together people from around the country, not all of whom were experts in working with the Government every day, but people who were advocates. Some are experts in working with the Government every day, but many are not, and I’m sure it’s been a verv free-flowing, spontaneous, useful 2 or 3 days. I got the sense of that just this morning in the few moments I talked with you. I think it’s good to have conferences when you don’t know exactly what the result will be; when you have people who aren't programmed necessarily; when you have an opportunity to hear a lot of different people and learn some things you might not have known before and consider some things that might be different than things you considered before. I think in an opportunity like that vou can make more of a contribution than you can in something that is staged. I know that many of you worked late last night with your thinking and your ideas, and you will probably be wondering, “Now what? Whatabout all of that work, all of that enthusiasm, all of that talk—will it make any difference?” Well, the answer is, of course it will make a Report of the Surgeon Generals Conference 103 difference. You ought to get a sense of that from the crowd that you've attracted here in the last few days. The President's been here; lots of people have been here. Thev're paving attention, I think, to vour presence. So your ideas will make their way back into Government, into the States that vou come from, and hopefully, and maybe mostimportantly, which is what Pd like to talk about, back to the communities in which vou live. We like to call them the America 2000 communi- ties. You may call them whatever vou would like, but in the end, that’s where the results really make a differ- ence. I get a lot of letters from children, since we're talking about children, and teachers encourage them to write me. I like to see that, because so often our children today end up sitting around watching televi- sion, which is sort of a one-way thing, and thewre not communicating and talking and having conversations as much as they should. The President talked about America 2000 and a national examination system. Thisisa voluntary system. You may be in my hometown in Merryville, TN, and you really wonder, “Well, I read all this stuff in the paper. Are our kids here learning math in the fourth grade to a world-class standard? [I'd like to know.” What the President wants to do is to make sure we create some standards in math, science, English, history, and geog- raphy, then a series of what he calls American achieve- ment tests that we can use in mv hometown to answer that question, Then if some kids are and some kids aren't, atleast we Il have an honest answer about it and we can go to work on it. Of course, what the President is suggesting is not more tests, just different tests—tests that might give usa clearer indication. We want Ameri- can schools with American values for our children, but we also want them to be able to learn enough and do enough—all children—to live, work, and compete with children growing up in Seouland Taiwan andallaround the world. I was the Governor of Tennessee for 8 vears, and after | had been there a while, I figured, if we just sort of get up every dav and do our job, we may end up going around in circles. We have a philosopher in Tennessee named Chet Atkins who plays the guitar, and he savs 104 Parents Speak Out for America's Children something very profound: “In this lite vou have to be mighty careful where vou aim because vou are likely to get there.” We talked about it with our cabinet in the State government and came up with a very short sen- tence about what we were trving to help our State do. Notice I didn’t sav “what we were going to do for our State” because that’s not the wav it works. That's the way some people think itworks, and sometimes you read the newspapers and people say, “I’m going to do this, and I'm going to do that.” That’s not the way it works. What we were trving to do was use our positions in govern- ment to help people do things for themselves, commu- nity by community. And our goal for our State was to have healthy children who lived in safe and clean communities and who could go to good schools that would help them have a better life and a good job. Itwas that simple. and we always started with healthy children. My wife was one of my educators on this. Gover- nors really educate themselves in public, if thewre smart. Thev don’t arrive knowing evervthing: thev really don’t arrive knowing much. So. I learned a lot, and I thought that one of my roles as Governor was to help others learn as I was learning. Mv wife formed a Healthy Children Initiative and went to work over a period of 6 to 8 vears on a number of things. One of those things had to do witha very high infant mortality rate we had in the State and a very low level of prenatal health care. We found that for a relatively small amount of money we could take prenatal health care services, which were available in only about 30 of our 95 counties, and expand them virtually to every county. It really took placing priority on it and working on it and talking to a lot of people about it and spending some money. In the whole State budget, however, tt wasn't much money. We saw results from that. Tran into individuals, women in Tennessee towns, who would come up to me and savy, “T think your wife helped my baby be born healthy,” because thev knew that she was involved. It gave the mothers some awareness of what some of their responsibilities might be during the period of pregnancy. and it made some difference. We found some other things that could be done. The Healthy Children Initiative revealed that mans babies were being born without a pediatrician available on the first day. They also found it was entirely possible to have one available on the first dav, and that it didn't necessarily cost money. The pediatricians in our State and our Healthy Children Taskforce got together and simply agreed that, ifa child was born who didn’t have a pediatrician identified, the hospital, doctors, and Healthy Children Initiative would designate one so that babies being born in Tennessee had a doctor. So, just those two things made a difference. I also recall that toward the end of the time J] was Governor, the head of the Healthy Children Initiative and my wife came in and said, “We need to do more in childcare.” I said, “Well, the budget is alreadv made up and we don’t have any more money for this vear.” Iwas always trying to think of the practical things, vou know. They said, “Oh, that’s not a problem, we'll just ask the corporations in our State to double the number of childcare spaces that they provide to their employees.” Now this was 5 or 6 vears ago, so itwas a modest number, but we got some major corporations together, the CEOs [Chief Executive Officers], talked to them about it, and challenged them to double the number of childcare “The one message I would like to leave with you today is that while it’s extremely important what national policy is. ..and while it’svery impor- tant what the State does... it is most important what happens where you live, in your hometown,” © spaces thev provided to their emplovees. They quad- rupled the number of childcare spaces they gave to their employees, and I believe the succeeding Governor continued that initiative. I make those comments to you because manv of vour States, and many of you are involved in this, know of efforts to expand prenatal health care. Many of you know of efforts to identify doctors for babies from the time they are born. Many of you know of efforts to encourage employers to provide childcare opportunities for their employees; some of vou might not mind doing that. The one message ] would like to leave with vou todav is that while it’s extremely important what national policy is—that affects the spending ofa lot of money— and while it’s verv important what the State does—that also affects the spending of a lot of moneyv—it is most important what happens where vou live, in vour hometown. The truthis. the fundamental problem that Report of the Surgeon General's Conference 105 you're here about, the fundamental problem that President Bush’s education initiative addresses in the end, is a matter of parents, families, and communities taking care of children and putting a priority on children as they are growing up. It’s the greatest challenge that any adult ever has—that matter of bringing a child healthy and safely into the world and helping that child grow up. I think every child is at risk from before they are born and continues that way until that person begins to have his or her own children and for some time after that. Everv child is a fragile, miraculous opportunity for success and potential. The more I see of schools, communities, and this country, I think what is really happening is that we have gotten to be a very busy country, busier than ever, all of us working. It seems like our feeling of responsibility for our children has dropped afew notches, and we need to move it back up or else we'll be planting landmines in the desert all over America, and we'll never be able to find them all or to take care of them all. I think of goal number one everyday because it’s part of my job to help America 2000 communities do what the President has asked them to do: adopt those six National Education Goals; develop a strategy in their hometown to move toward those goals; and develop a report card to measure progress toward those goals and to think about creating a new, break-the-mold Amerni- can school that really meets the needs of children the way they are growing up todav. Then, I go to California, and the Governor reminds me that | out of 10 babies born in California every year is a drug baby—babies born with some poison in them. They're not all crack babies, but they are drug babies. There are 250,000 children born in California everv vear. That’s alot of babies, and that’s an obstacle to learning. Those children have one strike against them from the dav they are born in terms of their ability to grow up, live and work, and compete in a world with children from all over the world. One of my perceptions is that more money will help, but there is alot of Federal money out there, much of which could be better spent if we could find wavs to organize it better. For example, Jule Sugerman came in to see us the other day. Many of you may know him. He 106 Parents Speak Out for America’s Children got busy in the 1960s and really, with some others, invented Head Start—just a little pilot program and zoom, here it goes, over the last several years. Everyone is awfully proud of Head Start. He pointed out to us in the Department of Education that there are now 27 different Federal programs that were available for chil- dren who are less than 5 or 6 years old and that the major challenge right now—while he’s an advocate for more money—is spending that money wisely. I think of Decatur, Georgia, as a wonderful ex- ample. There’s a schoo! district that, in the early 80s, had people trying to get out—parents seeking to get their children in schools in other districts. Today they are trying to getin. There are two reasons for that: One reason has to do with what goes on inside the school and the second reason has to do with what goes on in the community outside the school, both involving children. Inside, it’s a tough school with high standards, teachers who are responsible for the progress of the children, and a very strict superintendent. This is a school that would have a profile for low achievement scores—it’s a minority district, 90-95 percent, where most of the kids have a chance to have free lunches or free breakfasts. But in this school thev have among the highest achieve- ment scores in the school districts in the State. What makes the difference? I think it’s what goes on inside the school, The superintendent in this rela- uvely small school district—one high school, one middle school, and a few, three or four, elementary schools— has gathered more than $1 million of support from the community to help the children. He uses the school as the organizing point to help those children, so thev don't just turn kids loose in the afternoon at 3:30 p.m. to go home to an empty house with no support. Thev have everyone from the Boy Scouts to the Girl Scouts to the local foundation, to the Department of Health and Human Services and Department of Education offices. They've just rounded them all up, and they’ve taken that money, energy, and interest, and they are fitting it with the real needs of those children. They don’t interfere with the school’s function of teaching and learning. I don’t think we should; we shouldn’t dump problems on the school that the school is not capable of handling. But they do use the school as a center for the organization of community efforts, which helps the children become ready for school and stay ready for school as they grow up. dis a fragile, miraculous op- portunity for success and potential.” I am sure the President has told you that the Head Start increase that he’s recommended is the largest one- time increase in history. The Federal budget has gone up 25 percent over the last 4 years, overall. Head Start funding from the Federal Government has gone up 127 percent. I suppose it could be more as compared to the rest of the budget, but nothing I can think of has had a higher priority than the Head Start increase. Then there’s Even Start, the WIC program, and many others which I’m sure you’ve already discussed in the last 3 days. The point I would like to leave with you is that when you go home, I hope you will seriously think about becoming deeply involved in creating an America 2000 community, because that will put you in the midst of what is going to be happening in America in this decade to help our children reach this goal. That’s the first thing we have to do. We have to get interested, and we have to mobilize the community. They have to pay attention to mothers who have no prenatal health care, to babies who have no doctors, to children who have no one to love them or read to them, to disabled kids who need a litle extra help and an opportunity to be included. All of these take time, and we can't make progress if what we lead the Nation in is watching television. We have to get unconnected from the television and more connected with real people in our own hometowns. So if, in Derry, New Hampshire, or anywhere, they decide to respond to the President’s challenge to become an America 2000 community as they have in Las Cruces, New Mexico, in Billings, Montana, in Omaha, Ne- braska, in Richmond, Virginia, America will benefit. There are already 1,000 such communities; there will be 2,000 by the end of this vear and several thousand as we move on through the 1990s. In all of those communi- ties, goal number one is the children. What I would hope is that while you’re spending some of your time advising us how to change the Federal spending patterns, the State commissions, and the various advocacy groups, don’t forget to advocate where vou live, because that’s where you'll make the most difference. In Decatur, when they take the children in one high school, one middle school and three elementary schools, and they mobilize everything there to help those children, they can do it, because there are that many children and there’s plenty of help and they can fit it together. When we think about the whole world, sometimes it’s so incom- prehensible that we can’t seem to find a way to make a difference. Butwhen we think about where we live and we go outside and we spend that time with our children, which is hard to do, asso many of you do as advocates, then we can make a real difference. The schools can be changed to fit the needs of working families and can be made more convenient. They can be made better places for children who need special help, gifted children, children who need help catching up, and children who would like to go ahead. For example, there’s no reason schools should really ever be closed. That’s the first conclusion reached by Derry, New Hampshire. They can open the schools in the afternoon to be convenient to working families and in the summer for kids who need special education, and everyone involved in special education knows how much a child loses between May and September. There's no need for that to happen. The schools can open up, and families that can afford it can help pay for thitt—-it Report af the Surgeon General's Conference 107 doesn't cost much—and the Government can pay for families who can’t afford it. It’s usta matter of coming to the conclusion to do it. T thank vou for coming, and I thank most of vou for staving up so late. I've already had a glimpse at the thoughts that are behind vour reportjust this morning. I know that the Surgeon General with her irrepressibil- itv will make sure thatall ofus pay attention to what vou sav. We'll tv to do our best here in funding and the organization of programs in ways that make a difference for vou. I hope you'll keep in mind that there is a lot there to work with and that there are children who need help. Still, the most effective place to make a difference is in the family, in the community, and in the places closest to the children. Thank vou verv much. Roger B. Porter, Ph.D. Assistant to the President for Economic and Domestic Policy Usa great pleasure for me to be with vou today in the final hours of this verv important Conference as vou prepare to leave behind a series of findings that those of us in the Federal Government are cager and anxious to read. I salute mv great friend. the Surgeon General. for hosting this conference. Itis a reflection of her tireless commitment to children, to the health and well-being of our Nation, and to the strength of the American family. Dr. Novello’s experi- ence as a pediatrician has equipped her with special expertise in the subject of this conference, “Healthy Children Ready to Learn.” and her eloquence as a public servant in tackling many of the most important issues of our day enables her to make a real difference. The President earlier this week reiterated to vou hiscommitment to the goal thatall children start school ready tolearn. Thisisa commitment that permeates his administration. The President’s Education Policy Advisory Committee, which is made up of educators, business and labor leaders, and media representatives hasspent much time discussing ways to enhance parental involvementin the health and education ofour children. 108 Parents Speak Out for America's Children “The first conviction is that families come first... .. My second conviction ... is that, in our lives, we must never allow the things that matter most to be at the gery of the things that matter least.” I've had the privilege to be involved throughout the administration in the partnership with the Nation's Governors on education. This partnership was established in 1989 at the President's summit with Governors in Charlottesville, Virginia. Following that summit, the President and the Governors adopted six National Education Goals for the first time in our Nation's history. Those six goals provide a foundation for all of our collective efforts to revitalize our Nation's education system, Thev aim to ensure that our children have the opportunity to start school ready to learn and to get the kind of education that will enable those children to succeed in life. This audience represents a marvelous commit- ment to that first National Education Goal—that bv the vear 2000 all children in America will indeed start school ready to learn. You represent millions of the Nation's parents who are the key to success in this goal. My time is short with vou this morning, and I simply want to leave with vou three brief convictions that I hope you will remember and carry home with you. The first conviction is that families come first. As the President said to you on Monday, “In this adminis- tration, families come first.” We live in a marvelous ime in historv and in a marvelous time in the history of the world. Never before has there been greater opportunity and perhaps never greater challenge. The opportunities for learning, travel, and communication are almost limitless. And vet this ume of great opportu- nity is also an enormous time of great challenge. The family, the most basic unit of our society, seems under almost daily attack. The need for concerned and loving parents and concerned and loving mentors is as great as in any time in our Nation’s historv, The President, sensing this great need. announced in his State of the Union Address that he was establishing a commission on America’s urban families, partially in response toa remarkable meeting that he had with a group of the Nation's mavors. Republicans and Democrats, who came to him with a single and simple message on which they all agreed. The message was that there was not a single problem thev faced in our Nation’s great urban areas that did not have at its roots the disintegration of the family. They called on the President to work with them in trying to find wavs to rebuild and strengthen the family. As the President said, in his administration, families come first. My second conviction I want to leave with vou is that, in our lives, we must never allow the things that matter most to be at the mercy of the things that matter least. Plato once said that “What is honored in a country will be cultivated there.” We as a society must honor those activities that involve one generation transmitting a set of fundamental values and aspirations to the rising generation. As this Conference has so successfully articulated, these values must include good health and a commitment to learning. We must learn to reward excellence in education, not simply to eulogize athletes and entertainers. We must cultivate a culture of charac- ter in this country for, as Secretary Sullivan has re- minded us frequently, the great health challenges that we face now are not communicable diseases. which 100 years ago caused our life expectancy in this country to be 45 vears of age. Those have gone; we ve now added 30 vears of life expectancy in the last 90 vears of our history. That is a remarkable event; nothing has ever been seen like it in the history of the world. The challenges we face now with respect to health are tied heavily to lifestvwle—to the conscious. deliberate choices that people make about how thev are going to live their lives. We have to be about the business of helping children understand what those choices are and how to make the right ones. Mv third and final conviction is that we are all in this together, We want to cheer vou on as vou go to your homes, families, and professions after this Conference has concluded. Dedicate vourselves to communicating and practicing the critical role that we have now to pass onto the next generation the most valuable of treasures you can give to another person: a healthy life, commit- ted to learning. IT applaud, as many others do, your dedication and commitment, and I wish vou, and all of us asia Nation. well as we undertake this important task. Thank vou verv much. “My third and final convictién is that we are all in this together, Report ol the Surgeon General's Conference 109 Panel Presentations i3E — W) Chapter 6 Panel Presentations hile the State Parent Delegates were at- tending the Parent Work Groups, the Gen- eral Participants attended panel presenta- tions dealing with a number of issues related to the health and education of children. The group of more than 500 General Participants consisted of parents who were not appointed as State Parent Delegates (several of whom represented parent advocacy groups and parent networks); government officials; representa- tives of Federal, State, and local government health, education, and social service programs; representa- tives of other public (nongovernmental) programs; and representatives of private programs. Each panelist was chosen based on his or her extensive experience in the specific subject area to be presented. Two concur- rent panel presentations were given in five different time periods. Summaries of the presentations follow. aes Tal a EARLY CHILDHOOD ISSUES THAT AFFECT SCHOOL READINESS AND HEALTH Moderator Marilvn H. Gaston, M.D., holds the rank of Assistant Surgeon General in the Public Health Service and is currently the director of the Bureau of Health Care Delivery and Assistance at the Health Resources and Services Administration. She described four cornerstones that affect school readiness and health: adequate nutri- tion, proper immunization, injurv prevention, and access to primarv and preventive health care, The panel discus- sion focused on building preventive measures, providing quality services on time, and overcoming the barriers to adequate health care and nutrition, 112 Parents Speak Out for America’s Children Walter A. Orenstein, M.D. Director, Division of immunization National Center for Prevention Services Dr. Orenstein manages the Federal Immunization Grant Program, which supports the States’ immunization pro- grams and provides nearly one-fourth ofall the vaccines roudnely used to prevent disease in children. He said that U.S. immunization levels are the highest in the world; State laws provide for immunization of children regardless of their socioeconomic status, race, ethnicity, etc. Orenstein emphasized that these immunization requirements provide effective protection against dlis- eases, not only for individuals but also for communities, because high levels of immunization in a community can stop the chain of transmission, However, Dr. Orenstein reported that recent sta- tistics reveal some problems in our immunization pro- grams. For example, inner cities may have large con- centrations of unvaccinated people. Also, the recent measles epidemic was caused by the failure to vaccinate children at an appropriate early age. To combat the problem, Dr. Orenstein urged health professionals and other members of society to talk to each other and parents about the need to vaccinate on time and the implications of not doing so. He also talked about the importance of a community infrastructure to provide vaccinations (¢.g.. an adequate number of clinics avail- able, appropriate staff. and flexible hours for vaccina- tons). He recommended promoting immunization through all health care contacts, such as early infancy caregivers, early childhood health care providers, and educators. He stressed the importance of figuring out the barriers to prevention. “The bottom line,” he said, “is that there is no reason for people to suffer from preventable diseases.” Deborah Jones, B.S., M.S. Director, New Jersey State WIC Program New Jersey State Department of Health Ms. Jones discussed the role of nutrition with respect to the health and well-being of children. Noting that nutrition has physiological, psychological, biochemi- cal. and social implications, she relayed its role in providing energy, digestion, and a host of other meta- bolic functions. She suggested wavs to ensure adequate nutrition and talked about the recommended dailv allowances of various nutrients and how they help foster proper growth and development of the verv voung. Ms. Jones then focused on the symptoms and treatment of malnutrition and hunger. Both have a negative impact on learning abilities and behavior. Numerous studies of malnourished children show that they perform poorly on problemsolving and psvcho- logical, cognitive, verbal, and visual tests. Other signs of undernutrition are apathy, inattentiveness, problems interacting with others, and other learning problems. Ms. Jones noted that nutrition programs such as WIC provide several benefits, including food supplements, information on nutrition, and social services. WIC is sometimes referred to as “the gateway” to health care, immunization, Food Stamps, Medicaid, Aid to Families with Dependent Children, and Migrant Education. In the long run, WIC can save Medicaid costs for newborns and mothers. When mothers participate in the pro- gram at the prenatal stage, both baby and mother become healthier. Ms. Jones affirmed that atrisk babies whose mothers participate in the WIC program are born heavier than those whose mothers lacked that advantage. In closing. Ms. Jones urged the eradication of malnutri- dion and hunger and the promotion of social services to address the needs of underserved and targeted popula- tions. To achieve these objectives, she advised (1) edu- cating the American population on the importance of nutrition, (2) expancing the WIC program to serve a larger portion of its eligible population, and (3) promot- ing programs that provide nutritious school lunches. Modena E.H. Wilson, M.D., M.P.H. Associate Professor of Pediatrics fohus Hopkins Unrversity According to Dr. Wilson, preventing injuries to chil- dren mav be the most significant challenge to health caregivers for children. One in five children is seriously injured every vear. One-half of childhood deaths are due to injurv, and the number is growing. However, preventive measures have been slow to develop, noted Dr, Wilson. Injuries to children result from a variety of inci- dents: accidental shootings, poisoning, falls, motor vehicle accidents (both occupant and nonoccupant), drowning, and burns from fire or other sources. The injurv problem visits different populations in different wavs. Statistics show that boys are more likely to have all types of injuries than girls and that children of color are at greater risk than whites. Because many types of injury require home treatment, parents need to know and applv first aid skills. However, not all parents are equipped to handle injury, The lasting effects of injuries vary greatly, and thev can be significant. Injuries may interfere with the ability to move or manipulate objects for the rest of the child's life. Head injuries interfere with physical and/or mental functioning—whether or not the child becomes com- pletely disabled. Because injuries mav affect how a child looks, thev often help lower his or her seliesteem. In all of these cases. injury affects children’s readiness to learn, Report of the Surgeon General's Conference 113 How do children get into situations that cause injuries? Dr. Wilson believes accidents occur in part because children live in an environment designed bv and for adults. First, childrens’ small size isa problem because they can easily slip through spaces. (Seatbelts and grocerv carts, for example, are not designed for children.) Sec- ond, children lack the judgment and experience that this environment requires. For example, they ask questions such as “Is this gun a toy? Can I fly like Superman?” To combat the childhood injury problem, Dr. Wilson noted that supervision of parents cannot always be relied upon as a solution. Instead, she advocated, we need to build a better environment for children. Myron Allukian, Jr., D.D.S., M.P.H. Director, Personal Health Services Boston Department of Health and Hospitals Dr. Allukian spoke about the importance and the diffi- culty of getting primary health care and preventive health care for children, Quoting Mark Twain, he said, “Even if you’re on the right track, you'll get run over if you just sit still.”. He urged taking an aggressive ap- proach to solving children’s health care problems, because the Nation has not emphasized that working together to produce the healthiest children isa priority. He noted that, while three out of four elderly citizens receive financial assistance, a large number of chil- dren—one out of five—lives in poverty, and one child out of four is born into poverty. Yet cash pavments to needy families with children have decreased signifi- cantly. This situation broadens the gap between the haves and the have-nots and amplifies the social prob- lems that stem from poverty—among them: (1) inad- equate health care and food supply; (2) poor academic performance; (3) teenage pregnancy; and (4) wide- spread drug and substance abuse. To address this situation in which many people lack health and dental insurance and an increasing amount of care is given to fewer and fewer people, Dr. Allukian offered the following guidance. First, health care priorities must be reversed so that the health care system promotes health care for everyone. To accom- plish this reversal, the national budget for health care 114 Parents Speak Out for America’s Children “ .. while three out of four elderly citizens receive financial assistance, a large number of children—one out of five—lives in poverty, and one child out of four is born into poverty.” must be increased. Parents, educators, health profes- sionals, and legislators need to become more account- able. “Currently,” he warned the audience, “we are using band-aid approaches.” Head Start serves only a small portion of the people who need it. Community health centers reach only one-fifth of the children eligible for services. He noted progress in lowering infant mortality rates for the Nation; however, he said, the black population sull experiences two to three times greater rates of infant mortality. Second, national leadership must promote preventive health care for every man, woman, and child. Community-based pre- vention services and a national health plan, including a preventive health program for kindergarten through grade 12, must be provided. The plan would include national programs in family planning to promote the concept of having children who are wanted. Third, medical schools need to be encouraged to cooperate— rather than to compete—for private sector grants. Fi- nally, Dr. Allukian talked about the importance of sensitivity to the needs of the community and private citizens when dealing with health matters because, he said in closing, “children are 100 percent of our future.” Panel 1B HELPING FAMILIES GET SERVICES: SOME NEW APPROACHES This panel, moderated by Ronald Vogel of the Depart- ment of Agriculture’s Food and Nutrition Service, pre- sented several innovative wavs of eliminating the diffi- culties many parents encounter in trving to negotiate the bureaucratic maze that surrounds the services thev need for their children. Making the system more comprehensible, more user friendly, and simpler to access was the common theme. Juanita C. Evans, M.S.W. Chief, Child and Adolescent Health Branch Department of Maternal, Infant, Child, and Adolescent Health Maternal and Child Health Bureau Ms. Evans presented the new Model Applicaton Form whose development was mandated by the Omnibus Bud- get Reconciliation Act of 1989. The Model Application Form is designed to simplify the application process for individuals and families eligible to apply for any or all of the seven aid programs offered through the Maternal and Child Health Bureau. In keeping with the congressional mandate, work was completed within 1 year’s time and many agencies (including the Department of Health and Human Services, the Office of the Assistant Secretary of Health, WIC, Medicaid, Head Start, and others) were represented on the interagency work group. Ms. Evans said that including representatives from the Office of the General Counseland otherreviewing bodies greatly helped the process, because their input was obtained during the development phase rather than after the fact. The Model Application Form is available for use from the Maternal and Child Health Bureau or from Governors’ offices. State agencies are free to use the form in whole or in part, to adapt it as necessary, or to not use it. Deborah Clendaniel, M.S. Director, Maternal and Child Health Services Delaware Division of Public Health Ms. Clendaniel’s presentation introduced the concept of one-stop shopping, or colocation, for health and social services delivery. This type of system has been working in Delaware for more than 20 years. Having a single point of entry into the system makes obtaining services and enrolling in appropriate programs easier for clients, thereby increasing the number of people who receive the services they and their children need. The staff of the Delaware Service Centers see them- selves as a “funnel,” helping to direct clients to the services they need and to which they are entitled, all during a single visit. Each center houses a variety of health and social services, including senior centers, health clinics, parole/probation offices, daycare facili- ties, and migrant health offices. Most are open from 7:00 a.m. until 9:00 p.m. While clients’ convenience is the main concern, colocation also benefits program administrators. Information can be shared among agencies, and the certification and income verification process is greatly simplified. Referrals (e.g., for speech/ language /hearing evaluations) can be made in house. Automated data management makes client informa- tion more accessible, keeps it up to date, and lets the staff members closest to the client access the data they need to make decisions. Ms. Clendaniel said that the guiding philosophy is that delivery systems must begin to accommodate, rather than merely tolerate, the needs of the population they serve. Mary Jean Duckett Chief, Home and Community-Based Waiver Branch Medicaid Bureau Health Care Financing Administration Ms. Duckett explained the Targeted Case Management benefit available for some Medicaid recipients. Selecting Targeted Case Management allows Medicaid clients to choose a certified case manager to assess their needs and guide them to appropriate services and agencies. Case managers not only referclients to Medicaid-covered agencies and providers, but also help clients interact with landlords or housing agencies, schools, and any Report of the Surgeon General's Conference 115 other areas where assistance is needed. Medicaid is a Federal agency that is State administered. and States set most of the regulations that govern who is eligible. what services are covered, and which providers are authorized to request reimbursement for services rendered. States may make Targeted Case Management available to Medicaid clients on the basis of income, certain medical or psychological conditions, geographic region, age. or other criteria as deemed appropriate. Authorized case managers can be schools, social workers, or other agencies, and case managers need not work for public agencies. States may notrestrictcase manager eligibility to a particular provider; rather, general qualifications must be written to allow a variety of providers to be eligible. J. Terry Williams, R.D., M.P.H. WIC Program Director Wyoming Department of Health The Wvoming Health Passport. presented to the audi- ence by Dr. Williams, uses smart card technology to record and store comprehensive medical and eligibil- itv data for WIC clients in a format that is portable, inexpensive, easy to update. and confidential. The passport itself, which looks like a credit card, is a 16 kilobyte microcomputer. The cards cost about S10 each and have an estimated life of 5 vears. A card’s memory capacity can be doubled for about S040. Because WIC information takes up only about one- third of the card’s memory, the remaining memory is open for other agencies to use. A chent who visits a service provider presents his or her card: the client's history is available to the provider, and the card is automatically updated each time services are rendered. Clients control access to the information through the use of PINs. Clients can obtain paper copies of their entire record at WIC offices. Dr. Williams said that the Health Passport has been especially valuable in sparsely populated Wyoming, because it eliminates both the delav and the cost of mailing, telephoning, or faxing information among agencies. Other States that are preparing to pilot similar programs are Montana, North Dakota, and Idaho. 116 Parents Speak Out for America’s Children Clara L. French Food Program Specialist Supplemental Food Programs Division Food and Nutrition Service US. Department of Agriculture Ms. French closed the session with a discussion of privacy and confidentiality of client information. Al- though integrating services and sharing data have ben- efits, such exchanges may sometimes threaten patient confidentiality. Many Federal and State regulations govern the exchange or disclosure of personal informa- tion. Special regulations apply to certain sensitive informauon, such as program records concerning sub- stance abuse, AIDS status, sexual history, and actual or suspected child abuse. In integrated data systems, confidentiality may be maintained by the use of pass- words, read-only screens, exclusive or restricted access files. and other methods. In searching for the appropri- ate balance between data sharing and client privacy, Ms. French asserted, administrators should solicit clients’ opinions about what information mav be shared and what information mav not. Administrators must review and become familiar with the requirements of all appli- cable legislative, regulatory, or policy restrictions on the release of information. Finally, Ms. French urged con- unued cooperation among agencies and programs as thev work to balance these two important concerns. Panel 2A HEALTHY CHILDREN READY TO LEARN: WHAT ARE THE ROLES OF PARENTS, EDUCATORS, HEALTH PROFESSIONALS, AND THE COMMUNITY? The theme of this panel, moderated by Josie Thomas, Project Coordinator for the Family and Community Net- working Projectat the Association for the Care of Children’s Health, was cooperation among parents, educators, health professionals, and the community in raising healthy chil- dren. Each speaker stressed the need for true collabora- tion, interdependent partnerships, and empowerment. Rosalie Streett Executive Director Parent Action Ms. Streett urged the audience to put family issues at the top of the national agenda and to improve the quality of life for American families. Highlighting the pivotal role of parents in mecting these goals. she said people should turn to parents first when looking for informa- tion pertaining to children’s well-being. “The onh people who can make a change for parents.” she said. “are parents.” She cited adoption staustics to Hlustrate how rapidly the world has changed. Fifteen vears ago, the process to adopt a child took an average of only 9 months. Now, the situation bas reversed, with only 1 of &5 teenagers presenting her baby for adoption. thus creating a shortage of adoptable babies and long wait- ing lists for prospective adoptive parents. However, Ms. Streett emphasized that. in the face of a changing society, the needs of children and the need for strong families have not changed and never will change. Un- fortunately, today’s demands on people’s lives may cause them to forget about the support that children need, Although the support children need is common knowledge, not evervone recognizes that parents are the largest untapped political constituency. Ms. Streett offered the following guidance. (1) Ensure that every political candidate—local, State. and national—sup- ports the needs of parents. (2) Encourage parents to voice their needs. Forexample, children’s needs can be supported by creating a better workplace. Some offices, she said, are leading in this direction by allowing chil- dren to come to work with their parent when the childcare provider is sick. Noting that the United States is possibly the only western country that does not have a family and medical leave policy, Streett told the group that it’s time to get motivated. (3) Encourage children to be creative and interactive. She directed parents to turn off the video games and television. In closing, she “ urged the audience not to “take the easy wav out because we're tired, because none of us are as tired as our grandmothers were.” Willie Epps, Ph.D. Duector, Head Start Program Southern Illinois Cniversity at Edwardsville Dr. Epps spoke about the integral role of educators in the partnership with parents and families, health professionals, and community resource people. Collaboration, he said, enables educators to interact effectively with individuals, families, groups, and communities to enhance awareness of problems, promote appropriate action, and advocate solutions. He talked about the need to establish goals, which he defined as simply dreams with a timeframe, such as President Bush's goals for the vear 2000. The educator's goals must maximize the physical, emotional, and social well-being of children. A compromise in any of these areas might affect children’s abilitv and willingness to learn. Realization of goals, said Dr. Epps, requires educators to use knowledge and skills effectively in these three roles: (1) assessor, (2) advocate, and (3) promoter. xrealthy CHilavin Report of the Surgeon General's Conterence 177 Dr. Epps elaborated that, although formal mecha- nisms such as screening activities and programs help educators assess children’s needs, these mechanisms shouldn’t replace the daily monitoring of children’s behavior and actions. By observing behavior, attitude, and/or symptoms in daily interaction with children, educators can begin to understand the physical, emo- tional, and social risk factors that have a negative impact on children’s health. They then can address actual or potential needs by communicating their knowledge about children’s patterns of growth and development to other members of the partnership—families, com- munity resource people, health professionals—to rein- force behavior (if healthy) or intervene (if unhealthy). In the role of assessor, educators must negotiate, con- sult, and refer. They must work with outside health professionals to gain knowledge and skills so that fami- lies and schools can replace unhealthy lifestyles with healthy ones. As advocates, educators influence the way the community views and responds to the goal of making children healthy. In this role also, Dr. Epps noted that strong collaboration with other partners—legislators., civic leaders, corporate officers, and community lead- ers—is crucial. For example, noting that Head Start can “The message needs to ring clear that (1) society is in danger when children’s health is at stake, (2) children’s health and learning go hand in hand, and (3) proper resources must be allocated to ensure the health of children.” 118 Parents Speak Out for America’s Children be rephcated anywhere and that Head Start makes children ready to learn, Dr. Epps stressed the fact that public schools are not yet ready to receive Head Start graduates. Public schools need to collaborate with the local Head Start programs. The message needs to ring clear that (1) society is in danger when children’s health is at stake, (2) children’s health and learning go hand in hand, and (3) proper resources must be allocated to ensure the health of children. As positive role models, educators must promote a healthy lifestyle by showing nutritious eating patterns, participating in exercise and fitness, practicing stress management techniques, and eliminating substance abuse. Finally, educators must promote comprehen- sive school-based health programs as feasible and cost- effective. In closing, Dr. Epps reminded the audience that healthy children are the product of instituted and sustained change. “Only through health,” he said, “can children learn.” Robert G. Harmon, M.D., M.P.H. Administrator, Health Resources and Services Administration U.S. Public Health Service It is important to get children healthy and ready to learn each vear, in 2nd grade as well as 12th grade, began Dr. Harmon. His presentation focused on the role of health care professionals in making children healthy, the problems they face, and characteristics of successful collaborations. He noted the multitude of problems that concern health care professionals: low birth weights, infant mortality rates, immunization, and environmental contaminants. To address these problems, he said, communities need partnerships of all kinds: between the public and private sectors; between various professionals such as psychiatrists, social service workers, and family physicians, etc.; and between parents and all others in the partnership, The family environment is the most significant factor in providing for children’s health, said Mr. Harmon, because, “while social service systems fluctuate, the family is constant.” The family profits from successful collaboration. Among the criteria for evaluating “The family environment is the most significant factor in providing for children’s health ... because, ‘while social service systems fluctuate, the family is constant.’” programs is the ability of health professionals to (1) understand the development needs of infants, children, teenagers, and families, (2) provide family- centered care, (3) provide emotional support to families, (4) understand and appreciate that families have different methods of coping, (5) access a delivery system that is responsive to parents, (6) be culturally competent, (7) understand and honor racial, ethnic, and cultural differences among families, and (8) respect beliefs, attitudes, and talents of family members. Charles P. LaVallee Executive Director Caring Program for Children Western Pennsylvania Caring Foundation, Inc. The Caring Program for Children is a Blue Cross and Blue Shield program that acts in partnership with the community to provide free primary health care to children living in poverty. The program operates on the premise that children won't be ready to learn if they are not healthy, and the program’s overall goal is to empower parents. Therefore, a key feature of this program is that each participantreceives a medical card so that no one knows he or she is in need, and confidentiality and family dignity is thereby protected. The program works because the burden is shared between the physician who provides care in the hospital and Blue Cross and Blue Shield, which matches expenses. Empowerment of people in this way and building of partnershipsare key to the success of this type of program. One of the problems society faces, said Mr. LaVallee, relates to the “knowledge gap” about the large number of people who lack health care insurance. A strategy for combatting the problem of the uninsured is to promote community fundraising programs that keep funds in that particular community. The strategy works with the help of community leaders and mobilization of power bases, because people are attracted to projects designed to keep money at home. Mr. LaVallee stressed the need to form partnerships with hospitals, legislative staff, and community leaders, among others. He also emphasized the need to work with both the media and members of these partnerships to find people in need in the community. He cited some examples. In one case, WIC workers, school nurses, and hospitals discovered people in need. In another case, the media used an identifiable figure—television’s Mr. Rogers—to iden- ufy thousands of needy children. Poverty health care needs are an important priority. To underscore this importance, Mr. LaVallee posed a situation in which chronically ill children of deceased parents lose their eligibility for medical assistance once their social security income runs out. Mr. LaVallee recom- mended dramatizing such situations through the media. Report of the Surgeon General's Conterence 119 Panel 2B SPECIAL ISSUES THAT IMPACT CHILDREN AND FAMILIES: SUBSTANCE ABUSE, HIV, AND VIOLENCE Moderator Bill Modzeleski of the Department of Education's Office of Drug Planning and Outreach called this panel one of the most important at the Conference. He stressed the relevance of the issues that would be discussed by the panelists, noting that these issues will touch the overwhelming majority of Ameri- can children and adolescents before they graduate from high school. Substance (drug, alcohol, and to- bacco) abuse, HIV and AIDS, and violence affect our families and communities without regard to race, re- gion, or income level. Beverly Coleman-Miller, M.D. President The BCM Group, Inc. Dr. Coleman-Miller spoke about the impact of violence on children, which she has observed in more than 25 years’ experience in the medical field. She cited the horrendous statistics for deaths, shootings, and stab- bings, then pointed out that these figures account only for reported incidents. The growing acceptance of violence in the streets as a part of life is, according to Dr. Coleman-Miller, the single biggest problem that must be overcome in putting an end to violence. “The United States understands that children who witness violence are different from children who don’t,” she said, citing the special educational and counseling programs that were launched for children during last year’s Gulf War. No such programs exist for children who witness street violence ona daily basis. Dr. Coleman- Miller expressed her belief that the time for studying the effects of violence on children is past; now we must work to eliminate violence. She reminded the audience that violence affects all of us. Children who witness violence at an early age grow up believing that violence is an acceptable wav to deal with conflict, and the cycle 120 Parents Speak Out for America's Children is repeated in the next generation. The strain on the medical system also affects everyone. When hospitals and trauma centers are forced to fold under the pres- sure of providing free medical care to indigent patients who have been shot or stabbed, the result is fewer hospitals and trauma centers available to all. Dr. Coleman-Miller closed the session with an invitation to her workshop session, where she would discuss inter- vention strategies. Dr. Wendy Baldwin Deputy Director National Institute of Child Health and Human Development Dr. Baldwin discussed the social effects of pediatric and adolescent AIDS cases. Dr. Baldwin emphasized that in pediatric AIDS cases, we must consider families with AIDS, notjust children with AIDS. More than 3,400 children in the United States are known to have AIDS, and because full-blown AIDS is the end stage of the disease, the number of children who are HIV-infected is assumed to be much larger. Current estimates place the number of infected children beaveen 10,000 and 20,000. AIDS is the ninth leading cause of death for children in the general popu- lation and the sixth leading cause of death for African- American children, AIDS affects minorities and the poor “AIDS is the ninth leading cause of death for children in the general population and the sixth leading cause of death for African-American children.” disproportionately, often striking individuals and families least equipped to deal with the resulting pressures. Children contract AIDS in one of two wavs: they are born to an infected mother or they receive a contami- nated blood transfusion. In most cases, at least one parent already has the disease. Often, the family has a history of substance abuse, and many children with AIDS are mem- bers of unstable or single-parent families. Poverty is another problem that frequently affects AIDS families. Many HIV-positive children are wards of the State and are therefore denied access to the state-of-the-art treatments "that are available only in clinical trials. The stigma attached to AIDS because of its routes of transmission (intravenous drug use or unprotected inter- course) can lead to grave consequences for children who are diagnosed with the disease. In some cases, parents have hidden the child’s condition and have refused to seek medical treatment for the child. An HIV-positive diagnosis has in some cases led parents to abandon their children. When children become infected through con- taminated blood transfusions, the stigma, emotional pain, and financial strain of this new disease often compound the worries-of the medical condition that required the transfusion in the first place. . Adolescents constitute a significant risk group, especially those who lack the supervision and guidance that a strong familv provides. Unprotected sex and drug use remain the two biggest risks for HIV transmis- sion among teenagers. Dr. Baldwin said that, while parenting skills did not require extra work in quieter times, parents must devote added attention and effort to rearing children in this turbulent era. “Families are the basic socializing unit for children,” she said, as she underscored the importance of teaching children self- esteem and discipline early in life. Millie Waterman Interim Chairman National Parent/Teacher Association (PTA) Health and Welfare Commission Ms. Waterman presented the PTA’s approach to address- ing the critical problems of substance abuse, AIDS, and violence. At the heart of all its policies is the PT-A’s 95-vear- old tradition of support for parent involvement. The National PTA is working to achieve three major goals in conjunction with the President’s six National Education Goals: (1) to design and implement comprehensive parent involvement programs in schools across the coun- try. (2) to identify and eliminate the risks to children, and (3) to use the schools as a delivery point for counseling, nutridon, and health programs. On the topic of substance abuse, PTA advocates a “no use” policy designed to eliminate the mixed messages children receive about drugs, alcohol, and tobacco. Although the use of illicit drugs (such as cocaine and marijuana) has declined over the past decade. the use of alcohol and tobacco has increased. To be successful, Ms. Waterman said, drug use prevention programs must discourage the use of all drugs and must be supported by the entire community. Not only children but also parents must be educated about drug use. PTA is the recipient of a grant from General Telephone and Electronics, Inc. (GTE), fora program called “Common Sense,” which targets children between the ages of 8 and 12. This program is based on three components: (1) building strong bonds between children and families, (2) setting limits and rules for children, and (3) serving as good role models for children. PTA also calls for an end to “At the heart of all its policies is the PTA’s 95-year-old tradition of support for parent involvement.” Report of the Surgeon General's Conference 121 television advertising for beer: this advertising is Most often aired during sporting events, which are watched by thousands of children who get the impression that, in Ms. Waterman's words, “beer time is party ime.” On the subject of AIDS, PTA has begun a program called “AIDS Education in the Home and at School” with a grant from the CDC. PTA urges all boards of education to establish policies on the school placement of children with AIDS and on AIDS education in health and hygiene classes. PTA advocates sexual abstinence as the best way to prevent the spread of AIDS among the teenage population. PTA also recognizes the many forms violence takes in our society. Corporal punishment, or beating children as a means of discipline, is legal in 28 States. The National PTA promotes banning corporal punishment across the country. Television violence is another area of concern. The National PTA also works to reduce the violence that gangs and child abuse inflict upon our children. Mark L. Rosenberg, M.D., M.P.P. Director, Division of Injury Control National Center for Environmental Health and Injury Control Centers for Disease Control This presentation on the public health approach to violence prevention closed the session. Like Dr. Coleman-Miller, the opening speaker, Dr. Rosenberg stressed that the time for action has come. The solu- tion to violence in America isn't buving guns, installing home alarm systems, or putting metal detectors in the schools; rather, it is preventing violence in the first place. Although the popular conception of CDC has to do with diseases such as AIDS and toxic shock syndrome, CDC’s prevention philosophy is no less applicable to violence. According to Dr. Rosenberg, “accident” is a word that has been removed from the CDC vocabulary because it implies that injury is unavoidable. On the contrary, he said, violence is preven table using the same steps that researchers followin epidemiological (disease control) studies. First, the reports of violence and intentional injuries are studied to determine recurrent patterns. Next, researchers work to design possible 122 Parents Speak Out for America’s Children interventions that would prevent such incidents. These interventions are then tested to determine which are most effective. Dr. Rosenberg emphasized the prevention aspect of CDC’s approach. Unlike police officers and other law enforcement professionals, public health profes- sionals can get involved before the harm is done. Public health officials also have access to a broader range of incidents, because unlike police, they can work on cases where no criminal activity is involved. As part of CDC’s prevention efforts, Director Bill Roper recently an- nounced his intent to begin a National Center for Violence and Injury Prevention at CDC. FTA] ee DISABILITIES Moderator Vernon N. Houck, M.D., Director of the Na- tional Center for Environmental Health and Injury Con- trol at the Centers for Disease Control, began this discus- sion by contrasting recent progress in eliminating dis- eases, such as polio paralysis, rubella, and cerebral palsy, with the need to reduce the causes of developmental disabilities in children. Prevention of the diseases was successful, he stated, because the cause in each case was identified. However, learning disabilities such as those related to childhood lead exposure are not yet prevent- able because lead poisoning and its sources often cannot be pinpointed. In their discussion of lead poisoning, mental retardation, fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE), Dr. Houck and the panel speakers delivered a common message: although it is costly to remove pollutants and take preventive measures to combat other disabilities, “the cost of doing nothing is far more than the cost of finding interventions and apply- ing them.” The speakers emphasized education and prevention, wherever possible. When prevention is not possible, quick intervention and diagnosis are needed. Equally important is research to determine the causes of disabilities if they are not completely understood. Sue Binder, M.D. Chief, Lead Poisoning Prevention Branch Centers for Disease Control According to Dr. Binder, childhood lead poisoning is an ancient problem. The Romans discovered the sweet- ness of lead salts and used them in alcohol. Today, water and soil have more lead in them than we think, and lead is sull found in paint. Asaresult, children ingest lead as part of their normal hand-to-mouth activity, Although lead-based paint was federally banned in the 1920s and 1930s, it is still used from time to time. In the 1940s, several cases of lead poisoning manifested svmptoms like inflammation of the brain, inability towalk and talk, and—in the worse cases—death. The Byers and Lord study followed 20 6 to I L-vear-olds with problems sus- pected to be caused by lead poisoning. The researchers found that the children’s intelligence quotient (IQ) was average, but thev did poorly in school. The children appeared to be smart, but they did not learn. In the 1970s, the Needleman study examined lead exposure in children who did not display symptoms by measuring lead levels in their teeth. The findings revealed a positive correlation between high lead levels in teeth and teachers’ evaluation of distractibility and other academic performance characteristics. Children with high lead levels had lower IQs (by 4 points) and did not perform as well as those with lower lead levels. The Needleman study followed these children for 1] vears (through high school). The followup findings showed that, although these children displayed basically nor- mal IQs, they performed below normal and had high dropout rates and absenteeism. The tragedy is that these problems of lead expo- sure are preventable. However, according to Dr. Binder, “Unul the 1970s, people were not concerned with lead exposure unless they displayed symptoms.” At that time, 40 micrograms of lead per deciliter was consid- ered to be a problem. In 1991, the Surgeon General considered 10 micrograms per deciliter to be a prob- lem. “The bad news,” said Dr. Binder, “is that we worry about lead levels that are lower and lower, but the good news is that we are finding the average blood lead level to be dramatically declining.” The reason for this decline can be attributed to lower lead in gasoline and stricter laws by the Environmental Protection Agency that result in reduced lead levels in blood. We have reduced these environmental sources. However, the major sources of lead still are lead- based paint, paint-contaminated dust, and debris from window wells that children ingest in normal hand-to- mouth activity. Older homes that have undergone renovation are a particular problem. The Department of Housing and Urban Development estimated that, in 1980, 74 percent of homes still contained some lead- based paints. In November 1990, Herbert Needleman spearheaded a plan with a program agenda that called for an increase in the number of prevention activities and programs, an increase in the abatement of paints and lead poisoning, and an increase in the surveillance of elevated blood levels in children. This agenda has resulted in increased funding dollars and increased efforts to promote partnerships in the private sector and foundation support. among others. Report of the Surgeon General's Conference 123 Craig T. Ramey, Ph.D. Director Civitan International Research Center Dr. Ramey described the “rapidly changing landscape” for children with disabilities, particularly mental retar- dation, as society stands on the threshold to mount new research for programs to treat and prevent these dis- abilities. Mental retardation, he said, represents 79 percent of all disabilities and is predictable; it is not randomly distributed. The poor are ata much greater risk for mental retardation than other populations. Perhaps 25 percent of individuals that fall below the poverty line are at an elevated risk for mental retarda- tion that lasts over more than one generation. Mothers with an IQ lower than 70are also at greater risk ofhaving mentally retarded children. Mental retardation is caused by factors such as poor health care and systemic mild insults. Seventy-five percent of mental retardation fall in the mid-range (IQ of 353 to 70). “The notion that mental retardation ts a permanent characteristic ofa person.” said Ramey. “has been challenged by longitudinal and ethnographic research. ,.. Treatment of mild mental retardation has been synonymous with education and the provision of rehabilitative environments.” Recent research in mental retardation has shown that low-birthweight and premature infants are born into a “double jeopardy” situation because they were born not only with low birth weight and premature, but in dispro- portionate percentages to disadvantaged families. These children did relatively well when thev received intensive home treatment with individual care and a vocational curriculum with a very good teacher-to-child ratio. This treatment and development program, which is affiliated with several universities, was implemented in eight pro- gram sites across the country. In most cases, significant improvements occurred when key components were fol- lowed: intervention, followup, surveillance, referrals, and home visits. In this study, followup was more extensive than in many other similar intervention studies. Across the board, those in the more intensive intervention group were at an advantage. The frequency of mental retarda- tion decreased in direct proportion to the amount of 124 Parents Speak Out for America’s Children intervention received. The followup of children (through age 12) showed high risk children had an 1Q of below 85 (borderline intelligence). For those mentally retarded children who received early intervention, only 28 percent repeated at least one grade by age 12. Without early intervention, 53 percent repeated at least one grade by age 12. Ann Streissguth, Ph.D. Director, Fetal Alcohol and Drug Unit and Pregnancy and Health Studies University of Washington Children afflicted with FAE and FAS are unable to reach their full potential due to prenatal alcohol exposure, according to Dr. Streissguth. These youngsters have normalintelligence but can't “getit together.” They often suffer from distractibility, attenton deficit disorder, and the lack of ability to focus on important issues. However. FAS. she emphasized, is totally preventable. “It’s one thing to prepare children for school,” she said, “but it’s a big responsibility to ensure thateach child begins life in an alcohol-free environment.” FAS deprives children of reaching their potential justas surely as birth defects do. However, birth defects are observable. For example, children exposed to thalidomide have noticeable phvsical defects. FAS, by “FAS deprives children of reaching their potential just as surely as birth defects do.” contrast, isa hidden disability. Because ethanol crosses the placenta freely, in minutes the blood level of the fetus is the same as that of the mother. Symptoms of FAS include (1) prenatal and posinatal growth defi- ciency, (2) a pattern of malformation in terms of facial features (large distance between eves, thin upper lip. and flat midface) and brain composition, and (3) cen- tral nervous system dysfunction. The musconcepuion is that all children with FAS are mentally retarded. [In reality, only 50 percent are retarded: manv with FAS are borderline intelligent. However. all children with FAS are dysfunctional. “TQ is not the factor that determines how well a person functions.” affirmed Dr. Sureissguth, “underlying brain damage is.” Dr. Streissguth stated that victims of FAS are at high risk Qnany are involved in crime). and the long- term consequences of the problem need to be under- stood. She brought attention to the severity and magnitude of FAS and FAE and stressed the need for education and early intervention. She has received many letters from parents—one of which she read aloud—stating, in effect. that our system fails these children. Dr. Streissguth advocated (1) public educa- tion, (2) professional training, and (3) professional services. People need education about the risks associ- ated with social drinking during pregnancy (i.e.. there is no known safe level of alcohol exposure during pregnancy). Specifically, Sweissguth recommended (1) improved diagnosis of FAS and FAE and (2) design of special programs for children with these problems so that they can find productive places in society and are not failed by society. She acknowledged that many people simply don’t recognize the difference between brain damage (an effect of FAS and FAE) and retarda- tion. She emphasized the need to diagnose young children, adolescents, and young adults. Without a successful diagnosis, she said, these children remain in an environment that offers no help for them. Panel 3B EXPLORING COMPREHENSIVE HEALTH AND EDUCATION MODELS FOR YOUNG CHILDREN Moderator Marv Brecht Carpenter of the Commission to Prevent Infant Mortality introduced the panel members. The wo speakers on this panel presented concrete recom- mendations for innovative ways to improve health, educa- uon, and social services delivery for voung children. Edward Zigler, Ph.D. Director, Bush Center in Child Development and Policy Stardy Yale University Dr. Zigler. a self-described "Congressional gadfly.” pre- sented his views on the future of childcare in this country and outlined his plan for the School of the Twenty-First Century, As long ago as 1970, Congress recognized the need for a national childcare system. In 1971, Congress passed legislation that would have mandated a national network of childcare centers, but the bill was vetoed by then president Nixon. Dr. Zigler stressed that childcare is now an even more important national priority due to two particular demographic shifts: (1) the dramatic “We cannot treat children the way we are currently treating them in the childcare setting in America and expect this to be a great nation.” Report of the Surgeon General's Conterence 125 increase in the number of mothers working outside the home and (2) the increase in the number of single-parent families. Today, 63 percent of mothers with school age children work outside the home. The figure for moth- ers of preschool children is 60 percent. Among women with children less than 1 year old, 54 percent work outside the home. Moreover, the Department of Labor estimates that, by the vear 2010, labor shortages will draw even more mothers into the work force. Today more than 25 percent of all American children and 50 per- centofblack children grow up in single-parent families. Research on the impact of daycare on children, Dr. Zigler noted, has shown that good daycare is good for children and bad daycare is bad for children. We know how to provide good care, but we don’t want to pay what it costs. “The general state of childcare as experienced by children in this country is abysmal,” he stated. “This country is getting what it pays for.” The average annual turnover in childcare facilities is about 40 percent. As many as 90 percent of daycare centers in the U.S. are completely unregulated. No national standards exist, and there is wide variation among States. Even where standards exist, they are too lax to be of much use. Based on studies recently completed in California, Dr. Zigler estimated that about one-third of centers in this country are so poorly managed and the quality of care isso low that children are being “seriously compromised.” He went on to say, “We cannot treat children the way we are currently treating them in the childcare setting in America and expect this to be a great nation.” Although the 1990 Childcare Block Grant has been hailed by many as a victory for childcare reform, Dr. Zigler expressed doubt that it will have any signifi- cant positive effect. Seventy-five percent of the funds allocated to the Block Grant are earmarked for poor or nearly poor families. The middle class, which is equally in need of good childcare, will see almost no benefit, and Dr. Zigler expressed his fear that this situation may lead to backlash against the grant and against childcare reforms in general. He stressed the relationship of good daycare to achieving the President's six National Education Goals. “Five lousy years of childcare will 126 Parents Speak Out for America’s Children ATi auve guarantee that they [children] will show up at school not ready to learn.” In Dr. Zigler’s opinion, the svstem as it currently exists does not work and cannot be made to work. Instead of trving to retrofit the current system, he proposes a whole new system that he calls the School of the Twenty-First Century. The program, as Dr. Zigler envisions it, will incorporate the following key features: * Two systems will exist: first, the formal, 9-month, 8:00 am to 3:00 pm school, and second, the 12- month, 7:00 am to 9:00 pm school. * Children will enter the system at the age of three for full-day, developmentally appropriate school. In communities that already have Head Start programs, Head Start could simply be blended into the system; parents with earnings above the poverty line will pay an enrollment fee. * Before- and after-school childcare will be pro- vided for children aged 6 to 12. * Each family will be assigned a home visitor who will conduct developmental screening, offer sup- port to parents, etc. * All family daycare programs will be tied in to the school, which will offer support and periodic training sessions for childcare providers. * The school will contain a comprehensive informa- tion and referral system that can direct families to appropriate health and social servicesagencies (such as immunization clinics or night care providers). Successful pilot programs to build Schools of the Twenty-First Century already exist in several States, including Missouri, Connecticut, Colorado, Wyoming, Texas, Kansas, Idaho, Arkansas, and Mississippi. Another proposal Dr. Zigler is attempting to present to Congress is the “Children’s Allowance for America.” This plan would allow a new parent to withdraw up to $5,000 from his or her own Social Security account to allow the parent to stav home or to help pay for good childcare. Nancy Van Doren President, Travelers Companies Foundation Director, National and Community Affairs Division The Travelers Companies Ms. Van Doren spoke on behalf of the Travelers Com- panies Foundation about the role that businesses and private organizations can play in securing good care for children and pregnant women. The Travelers are headquartered in Hartford, Connecticut—one of the poorest cities in the country, located in one of the richest states. Disproportionately large numbers of children in Hartford are born to teenage mothers, are underimmunized, and have asthma, attention deficit disorders, or learning disabilities. All of these condi- tions are usually preventable. As one of the organization's social responsibility commitments, the Travelers are working to improve the health of children and the prenatal care of mothers in the greater Hart- ford area. When a new children’s hospital was proposed for Hartford, the Travelers commissioned an independent analyst to conduct an evaluation of Hartford's health care delivery needs. The consultant found that, while Hartford would indeed benefit from having another hospital, it was even more important to increase availability of primary and preventive health care for children and expectant mothers. Ms. Van Doren said that it has been a challenge to persuade contributors and decisionmakers to redirect their hmited resources from “glamorous,” high-visibilitv projects such as new hospitals to more mundane (but effective) applications such as prenatal and perinatal health clinics for low-income mothers. Ms. Van Doren said that she is motivated in her efforts by a mixture of rage and shame that people in her community are unable to have even their most basic needs met. She urged the audience to let their rage and shame move them to act and to search for opportunities to push for the redirection of resources to the places where they can do the most good. Hartford has been successful so far in its drive to reallocate resources from prisons to schools, and from neonatal intensive care units to preventive care. Ms. Van Doren emphasized the importance of preventing health crises rather than remedving them. Panel 4A CHILDREN WITH SPECIAL HEALTH CARE NEEDS: LESSONS LEARNED This panel offered valuable insights about setting up systems that address the problems of children with special health care needs. The speakers offer three perspectives—all key to successful programs: (1) par- ent empowerment, (2) program-level development, and (3) State-level involvement. The panel was moder- ated by Rear Admiral Julia R. Plotnick, M.P.H., R.N.C., who holds the rank of Assistant Surgeon General and is the Associate Director, Division of Services for Children with Special Health Care Needs, at the Maternal and Child Health Bureau. Report of the Surgeon General's Conference 127 Diana Robinson Parent/Child Advocate Center for Successful Child Development Ms. Robinson serves as a parent/child advocate at the Robert Taylor Community—known to be the largest public housing division in the United States—where she has resided for more than 20 years. Her video presentation highlighted the daily struggles of a com- munity with highly concentrated and severe poverty and its associated problems: extreme overcrowding, extremely high infant mortality and morbidity rates, high incidents of low birth weight, high percentage of teenage mothers, and high rates of violence. The community is further crippled by threatened family unity; psychological and physical absence of fathers: anger, depression, and despair; and social isolation. Ms. Robinson's determination to help herself and fellow community members led to her advocacy work on the Beethoven Project at the Center for Successful Child Development. The Center provides community-based services that address the health, education, and social needs of the community. The Center's philosophy is based on two beliefs: that each individual has the ability toachieve and be independentand in control of his or her life, and that strong family relationships are important. Services are tailored to the needs of individual families. in a tvpe of holistic service plan. Instead of focusing on the barriers to improving community life, said Ms. Robinson. the Center builds on community strengths to deal with the problems. From her experience at the Center, Ms. Robinson shared two basic problems and approaches to solving them. (1) Economic entrapment and isolation leads to a month-to-month struggle to meet basic needs. To address this problem, the Center offers ongoing emplovment training, counseling, and referrals. The Center also provides other tools to make life easier and help people to help themselves. Project staff are empathetic rather than sympathetic, and support groups abound. (2) Educational opportunity is lacking in the community. Project staff help parents to become better persons as well as better parents. The Center recognizes that parents who feel powerless and/or inadequate as parents don't read to children. Staff 128 Parents Speak Out for America’s Children members stress the importance of reading to their children and other approaches parents can use to foster school success. The staff encourage strong parent-child relationships and emphasize taking pride in the child’s academic achievement. Finally, parents are taught to become accountable and take an active role in their children’s lives and in their community. Said Ms. Robinson, “Healthy parents ready to learn will provide us with healthy children ready to learn.” Polly Arango New Mexico Parents Reaching Out Governor’s Task Force on Children, Youth, and Families New Mexico Children’s Continuum Ms. Arango introduced her audience to New Mexico from the viewpoint of New Mexico’s parents of children with special health care needs who have been working to improve the State's medical and educational systems. While New Mexico isa State of great physical beauty and diversity, italso faces many challenges: * One of seven New Mexico children livesin poverty, % New Mexico ranks 51st in the Nation in the per- centage of women receiving prenatal care. * The State's teen suicide rate is dismal. Therefore. New Mexico's families have arranged to make the lives of their children better, one family and one issue ata ume, Ms. Arango became involved as an advocate when she and her family learned that their youngest son, Nick, has cerebral palsy and developmental delays. As with many middle-class families, the Arangos discov- ered that few avenues existed to assist them as they struggled to pay Nick's medical and preschool bills. For example, although Nick was adopted, his adoption occurred before the emergence of adoption subsidies. Nick is an American Indian, but his birth parents chose not to enroll him in the tribe, a decision honored by Nick’s adoptive family. As a result, Nick is not eligible for services through Indian Health Service or the Bu- reau of Indian Affairs. Because they were decidedly middle class, the Arangos could not meetincome guide- lines for the State's crippled children program. To deal with her frustration, Ms. Arango joined with other parents to found a statewide organization called Parents Reaching Out (PRO) for anv and all families with children who have chronic conditions, disabilities, or illnesses of anv kind. Twelve years later, PRO has 500 members who are from every part of the State and everv ethnic background and who have chil- dren with manv challenges. Manv of PRO’s members are the professionals, friends. and relations of families who have children with special health needs. PRO began as an organization to provide peer support and information to families, and this function continues to: be the heart and soul of its efforts today. However. PRO’s parents soon tackled bigger issues such as writing the legislation that created a Compre- hensive High Risk Insurance Pool for New Mexico. The list of issues thev have addressed goes on and on. The following elements have contributed to their success in changing the svstem: * Ordinary parents have united to form a common bond. * They have forged strong partnerships with health. education, and other professionals. * One parent usually has risen to the forefront as a symbol! of the movement. * Public and private agencies have supported the campaigns with technical assistance and in-kind contributions as a way of enlightening and educat- ing the public. * At least one policymaker who is willing to “bleed and die” for the issue has become involved. * The highly visible work and people are supported by a broad-based grass-roots community of fami- lies and professionals who volunteer at home, * Everyone remembers the bottom line: improving the health of children and ensuring that their fami- lies can raise them with dignity, respect, and love. Beverly McConnell Director, Parent Participation Program Children’s Special Health Care Services Michigan Department of Public Health When Ms. McConnell’s child required an oxygen tank. she had to learn about health care systems and how to make them work. Because of her experience, McConnell was hired by the Michigan Department of Public Health to work on a peer level with “weightv” issues for a newly created parent participation program. The program, born out of decentralization at the State level, needed more parent involvement at the local level. Ms. McConnell described the initial ambivalence of one supervisor who did not understand the need for parent involve mentat the State level. However, as the program gained wide acceptance, she gained this person’s full support. Ms. McConnell’s job was to build relationships; create task forces; make approvals; and set policies for hospitals, physicians, and home health services. She is proud of the fact that all hospitals in her State now need parentadvisory committees and parent staff. She stressed the benefits gained from building relationships among parents, community, and government: the establishment of enormous power bases that took action when funding cuts were threatened. Thev influenced senators so that “Families have both an immediate vested interest to get things changed and the freedom to act... .” Report of the Surgeon General's Conference 129 parents received needed appropriations. They helped establish boilerplate in laws thatrequired that families and consequences to them be considered before programs are changed or funds are withdrawn. In effect, the legislation mandated State government to work with families. Ms. McConnell noted that parents are willing to take risks to support the continuance of needed services. “Even if thev are not sure the steps are right,” she said, “[parents] are willing to follow their instincts.” Ms. McConnell introduced four strategies to help families meet children’s special health care needs. (1) Support. State agencies should nurture and facilitate the develop- ment of statewide coalitions of and support groups for persons with disabled children. State agencies should encourage referrals to these groups. Financial support 18 also very important. Parent consultants must get reim- bursed for their time and expenses. Another type of support involves helping parents acquire a wealth of knowledge. They need information, for example, about who in the community has had a bad experience with clinics, etc. (2) Dissemination of Information. State agencies must establish effective, routine mechanisms for receiving information from parents and parent support groups and for disseminating information to them (fam- ily support networks). Agencies must provide families with clear written information describing programs, ser- vices. and mechanisms for accessing those services. Agen- cies must provide ready access for parents to unbiased and complete information from their child's records. (3) Collaboration. Families that participate across the State must represent the cultural and economic diversity of the State. They must participate fully with professionals in policy development, program implementation, coordi- nation of services, and evaluation of programs. State agencies must financially support parents involved in these activities. (4) Integration (the ultimate goal of services). State agencies must have a written policy that reflects the pivotal role of families. Integration recognizes the concept of family-centered services. However, parent inputis needed to ensure that services are family centered. Therefore, mechanisms for parent and professional col- laboration should be used routinely at all levels and in all program areas. 130 Parents Speak Out for America’s Children In closing, Ms. McConnell shared the following “lessons learned” from her experience: (1) Families have both an immediate vested interest to get things changed and the freedom to act (they have no boss in this endeavor, nothing to lose, and everything to gain). (2) Concepts trickle down to benefit health care for children in general, not just for those with special needs. (3) Financial support and encouragement are vital. (4) Advocacy can result from one-on-one relation- ships, either parent to parent or parent to professional. (5) None of the panelists are specialists in special health needs. In other words, parents should be recruited on the basis of their commitment, not educational de- grees. (6) Gaining new territory is worth the risk. esd at=) et) PARENTING: THE CRITICAL ROLE As she introduced the speakers on this panel, Modera- tor Barbara Heiser of the La Leche League stressed the importance of parent involvement in children’s lives both at home and at school. As children’s main support svstem, first teachers, and caretakers, parents exert a lifelong influence on their children’s development. Ann G. Cagigas, R.N., 1.B.C.L.C. Lactation Consultant For this panel's opening presentation, Mrs. Cagigas shared some of her experiences as the mother of three children, two ofwhom had severe sleep apneaas children. As infants, all of her children had to be constantly monitored lest they suddenly stop breathing. Mrs. Cagigas, a former emergency room/ trauma nurse, found herself wholly devoted to a new, 24-hour, acute care detail athome. Her eldest daughter, who is now 13 vears old, has fought several medical problems, including thyroid failure and Tourette's Syndrome. Mrs. Cagigas said she believes that the commitment she and her husband made to their children and their determination to stay active in their roles as parents carried them through some difficult times. She also stated that breastfeeding her children as infants helped her to feel connected to them later in life and kept the maternal bond strong even during very stressful periods. Mildred M. Winter, M.Ed. Executive Director Parents as Teachers National Center University of Missorri - St. Louts Ms. Winters presented the methodology and history of Missouri's Parents as Teachers program. Children are born learning. she said, “but thev don’t come with instruc- tions.” As children’s first and most influential teachers, parents should help their children learn all they can. The Parents as Teachers program helps parents give children “good beginnings.” The kev. according to Ms. Winter, is to reach children as early as possible. We learn more as children than we do during any comparable period of our lives. To make the most of this ferdle learning period. the Parents as Teachers program promotes the develop- ment of a parent-school partnership. A home visitor program brings trained parent educators into the children’s homes to talk with parents about opportuni- ties for the child to learn, things the parents can do to stimulate the child’s imagination, and what skills the “As children’s first and most influential teachers, parents should help their children learn all they can.” child should be developing. Home visitors also act as listeners and offer the parents support and a svmpa- thetic ear. The Parents as Teachers program involves as manv family members as possible, including fathers and grandparents. Anv family is eligible to enroll in the program, and special efforts are made to attract low- income families and teenage mothers. To date, four independent evaluations of the pro- gram have been conducted; all have shown that children whose families participated in the Parents as Teachers program to score higher in language development, intel- lectual development, and social development than chil- dren who were not itvolved in the program. Thirteen states, including Missouri, have Parents as Teachers programsin place. Manv use fandsfrom Even Start, Chapter I. Chapter IE. children’s trust funds, private corpora- tions and foundations, and public service groups such as the Kiwanis Club. In closing, Ms. Winters said that while the Parents as Teachers program does not solve all of the prob- lems that face children and their families today, she and her organization are proud to be part of the solution. Following Ms. Winter's presentation, a member of the audience [Sandra McElhany of the National Mental Health Association] urged attendees to write their representatives in Congress toask them tosupportan amendmentto the Bill for Educational Research and Education thatwill be proposed by Senator Kitt Bond of Missouri. The amendment, which has the support of Senators Kennedy (Massachusetts), Dodd (Connecticut), and Pell (Rhode Island), would grant States funding—$20 million per year for 5 years—to start or expand Parents as Teacher programs. Mary Louise Alving, M.Ed. Project Director, Parent Leadership Traming Citizens Education Center Ms. Alving presented a set of proven guidelines for setting up parent involvement programs. Although it is widely known that parent involvement improves children’s self-esteem and school performance, 75 percent of parents still do not get involved. Ms. Alving offered ways to increase parent involvement in school programs. The Parent Leadership Training Project at the Citizens Education Center began in Seattle in 1986 Report of the Surgeon General's Conference 131 ““ . . .parent involvement improves children’s self-esteem and school performance. Lee to address the needs of Migrant families. Since then, it has expanded to include families and schools of all backgrounds. Ms, Alving first talked about the four myths. that people use to say that parent involvementis not practical. The first was that “parent involvement” means volunteer- ing for school activities. Ms. Alving disagreed, saying that a parent who helps his child with her homework, or who takes an active role at school board meetings. is at least as involved as the volunteer. The second mvth is that parents don't have time to participate in school activities. She pointed out that parents do come to school when thes have what they think is a good reason (for example. debates about condom distribution in high sehools). “Parents are hard to reach" was the third myth. Ms. Abing asserted that it is the schools, not the parents, who are unwelcoming. The fourth myth she confronted was the “at risk” classification of families from certain’ ethnic groups or economic levels. She said that all families are at risk at some time, and that these kinds of classifications promote division within the community. Ms. Alving presented eight “do's” for successful pargnt involvement programs. These were repeated in the video that was shown at the end of the session. * Allactivities and programs should be based on the idea that all families have something to share. 132 Parents Speak Out for America’s Children * Parent involvement programs should inchide members of other programs—such as Chapter I and Head Start—and should collaborate with other programs. * Most successful programs focus on the child’s teacher. Parents want to meet and get to know their children’s teachers. Teachers are often the best wav to reach parents. * The program should be coordinated by a team, a good program will rapidly expand to a size where it simply cannot be administered by only one person. Teams should consist of the school prin- cipal, two parents, two teachers, a school district © representative, a business/community represen- tative, a social services professional, and a cul- ture/language specialist (as required). Before | the team begins planning, they should attend a 5- dav training session. % Successful programs always allow room for adjust- . ment. Every school is different, and programs must be adapted to fit theiraudiences. * Teacher training is an important part of parent involvement programs, Teachers often have no training on how to work with parents. * Ongoing funding for parent involvement pro- grams should be obtained. Too often, when funding runs out, the parent involvement pro- gram goes with it. Begin to work for permanent funding early. * Building a developmental evaluation process into the program means that staff can evaluate their progress at any point and can make any necessary adjustments. Letitia Rennings, M.S. Even Start Coordinator U.S. Department of Education Last to speak in this session was Ms. Rennings, who discussed the Even Start program. This family literacy program has increased in Federal funding from $14,820,000 in 1989 to $70 million in 1992. President Bush is recommending that funding for the 1993 fiscal vear be $90 million. There are currently 240 funded programs, including 9 Migrant programs. Even Start is open to children from birth through age seven living in a Chapter I elementary attendance area and a parent who is eligible for adult basic education. Even Start is composed of three core compo- nents—parenting education, early childhood educa- tion, and adult education. The projects build on eNIst- ing programs in the community, such as Head Start, Chapter I, Chapter H, adult education, programs for children with disabilities, JTPA. and JOBS. The program's goal is to break the evcle of illiteracy that plagues so many American families. The benefits of Even Starts focus on literacy are many. Parents who learn to read develop an interest in school, and some of them choose to go back to school as a result of their involvement. In addition, children feel proud of their parents and work to emulate their parents’ academic success. In some projects, parents have formed their own support networks and have learned the importance of proper health care and nutrition, talking and reading to their children. and serving as good role models. The self-esteem and confidence of participants—adults and children alike— is greatly increased. The results of first vear (1989) program evalua- tions show that 70 percent of families served have annual incomes of less than $10,000. Even Start has reached 45,000 adults and 48,000 children across the country. The majority of adult participants are between the ages of 21 and 29. To close her presentation, Ms. Rennings offered the audience some specific illustrations of the good Even Start can do for families and for whole communities. She Report of the Surgeon General's Conference 133 briefly described three successful programs—one ina trailer park in Fort Collins, Colorado, one in a very poor community in Sneadville, Tennessee, and one in the town of Hidalgo, Texas, on the Mexican border. Each of these programs has tailored its services to fit the specific needs of the community and families it serves. Recognizing that families’ basic needs must be met before they can begin to apply themselves to studving, the Colorado program offers not only General Equivalency Diploma (GED) training for parents, butalso teaches parenting skills, basic nutrition, and hygiene, and coordinates a food donation program. In Sneadville, where many people have never been inside a school building, 150 families almost everv- one in the county—is involved in Even Start. More than 500 people attended the program's spring picnic, with evervone in the community participating. The town sheriff cooked. and the staff of the barbershop gave free haircuts—some to women who had never had their hair cut by someone outside their immediate family. At the end of the year, 48 women enrolled in Even Start had passed the GED and 10 of them received drivers’ licenses. In Hidalgo, Texas, the Even Start program serves a community that is mostly Hispanic and poor; the families participating in Even Start had no plumbing or sewer systems. Their homes resembled small toolsheds. Nearly 120 parents and 130 children are enrolled in the program. Before Even Start came to Hidalgo, many women, who had had even less education than their husbands. were completely illiterate. Many families were entitled to food assistance, but could not negotiate the system because they could not read. The Hidalgo Even Start home visit has proved the most effective means of improving families’ literacy skills in a cultur- allv sensitive mariner and of assisting families in dealing with social service agencies. 134 Parents Speak Out tor America’s Children Panel 5A CHILDCARE: TWO PERSPECTIVES Childcare can be viewed from two perspectives: that of the parents and that of childcare providers. This panel, moderated by Barbara A. Willer, Ph.D., Public Affairs Director for the National Association for the Education of Young Children (NAEYC), presented the results of two national childcare surveys, one from each perspec- tive. Dr. Willer noted that these projects, which were separately funded and designed, are unique because they highlight partnerships (collaborations). The first study was the National Childcare survey sponsored by NAEYC and the Administration on Children, Youth, and Families, U.S. Department of Health and Human Services. The study used a telephone survey of parents designed and analvzed by the Urban Institute. It ex- plored general questions about childcare arrangements and included substudies of low-income families and mihitarv families. The second study, the Profile of Childcare Settings, was sponsored bv the Department of Education. 4 The study dealt with the supply of childcare services, use by low-income families, range of services, and quality. Patricia Divine-Hawkins Public Affairs Co-Director National Association for the Education of Young Children Ms. Divine-Hawkins reported immense change with respect to childcare in this country in this generation. In the 1990s, many mothers are working, resulting in a large proportion of children in preschool and a large number of children caring for themselves. She also reported a shift from informal toward formal childcare centers and homes. Census studies of parents and national studies by the Administration on Children, Youth, and Families point toward these conclusions. She noted that the consumer studies of 1974 through 1976 were prototypes of our understanding of childcare, but they did not include family daycare providers. According to Ms. Divine-Hawkins, social policies of the 1990s are oriented more toward children and the family. Childcare is a central component of employee benefits in many companies. Head Start created new partnerships between Federal, State, and local govern- ments. The continuity between early childhood educa- tion programs and elementary school has enhanced and eased the transition between early childhood and kindergarten. However, these social factors create a complex situation and thus a need to look at childcare issues more holistically. Ms. Hawkins-Divine related that NAEYC’ sresearch examines how the supply of and demand for childcare work together. Itis the first research that (1) studies the range of options for different families in different types of situations, (2) explores characteristics of individual families, (3) develops a comprehensive database with individual data tailored to individual circumstances, and (4) examines socioeconometrics. NAEYC also emphasizes the importance of partnerships in address- ing childcare issues. Sandra L. Hofferth, Ph.D. Sentor Research Associate Human Resource Policy Center The Urban Institute Dr. Hofferth was the principal investigator of the Na- tional Childcare Survey, which explored supplemental care for children (center care, family daycare, in-home care, care by a relative, or no supplemental care). The components of the survey included the number of households with children under certain ages, number of children enrolled in daycare, a parent survey, and a provider survey. The survey revealed a high percentage of supplemental care and a major shift in the providers of supplemental care: more and more children who receive care out of the home are enrolled at centers as opposed to receiving care at homes of relatives. The survey examimed primary care for the youngest pre- school child by income, for emploved mothers. Enroll- ment in center-based programs has increased particu- larly among lowest income families whose children are placed in subsidized programs and who receive direct financial assistance, ete. The working poor and low- to middle-income families, by contrast, are participating at a lower rate in center-based programs. Dr. Hofferth said it is noteworthy that the cost of care has not increased significantly relative to the cost of living. But, she affirmed, as the high-income families get tax credits and low-income families get assistance, the middle class gets squeezed out. Dr. Hofferth’s research shows that parents learn about childcare arrangements for the voungest child through relatives, friends, and neighbors (informal net- works) and from referrals. The mostimportant factors for measuring daycare are quality (above all else), reliability, teacher training, and student-totteacher ratios. The sur- vevfound that parents were generally satisfied with davcare arrangements. One-fourth of the parentssurveyed wanted to change arrangements. Of those, one-half wanted to switch to childcare centers. Childcare centers are the preferred alternative. Interviews with surveyors showed that some centers were regulated, and others were not. Nonregulated centers outnumbered regulated centers. Nonregulated centers differed from regulated ones in Report of the Surgeon General's Conference 135 that thev were smaller. had shorter operating hours, charged less, and were not run bv professionals. The major findings were that, during the preschool vears, more and more children are in childcare centers and some, especially the poor, may be suffering. Elizabeth Farquhar, Ph.D. Program Analyst Department of Education Dr. Farquhar talked briefly about the Department of Education’s role in creating policies and studies concerning early childhood education, childcare, and familv education. The Department of Education supports Chapter I creation of Even Start for adults in need of literacy skills. Preparing Young Children for Success is a Department of Education program that prepares children for schools. The Department also sponsors the Profile of Childcare Settings Study. The Department also collaborates efforts with the Department of the Health and Human Services. Since the 1980s, the Department has worked with the States, who became active in developing preschool programs. “Collaboration,” Dr. Farquhar stated, “is very effective in these studies.” Elfen Eliason Kisker, Ph.D. Senior Researcher Mathematica Policy Research, Inc. Dr. Kisker, who directed the Profile of Childcare Settings Study, described her extensive research on the supply of childcare for preschool and school-age children and on childcare utilization by low-income mothers in terms of two aspects: availability and quality. Dr. Kisker cliscussed availability in terms of formal early education and care at centers and at regulated family davcare programs. She found that the number of programs has wipled and enrollments have quadrupled since the 1970s. She con- firms that utilization rates are high and that most vacan- cies are concentrated in fewer than one-half of davcare facilities. However, more information is needed from parents to determine if shortages exist in specific areas for certain types of children. Dr. Kisker noted that not all programs provide all services. Asa starting point, one can look at admissions policies and determine whether the 136 Parents Speak Out for America’s Children facility accepts infants, children who need fulltime ser- vices, and handicapped and/or sick children. In terms of quality, Dr. Kisker noted, daycare centers can take many forms. “A daycare center that is considered quality,” said Dr. Kisker, “promotes child development. ... You can’t assess childhood develop- ment by individual child, but there are certain indica- tors of quality.” These indicators include (1) average group size, by various ages (look at the various laws pertinent to the regulations); (2) average child-staff ratios, by various ages; (3) teacher qualifications, by tvpe of degree; (4) teacher turnover (profit versus nonprofit), and (5) parental fees (not changed since 1970s if adjusted for inflation). The Childcare Settings study led to new childcare policies. The 1990 baseline data were used to assess what has happened since the early education initiatives were developed, and programs have since been implemented. To illustrate Dr. Kisker’s statement, Ms. Divine-Hawkins shared that 32 projects in 32 States have evaluated the transition of Head Start graduates over the next three grades, assessed their progress, and determined under what conditions thev progress. Panel 5B HEALTHY START, HEAD START, EVEN START, AND WIC: INTEGRATING HEALTH, EDUCATION, AND SOCIAL SERVICE PROGRAMS Wade Horn, Commissioner of the Administration for Children, Youth and Families, served as moderator for this session on collaboration among various health and social service agencies. A. Kenton Williams, Ed.D Associate Commissioner Head Start Bureau “Head Startis alive and kicking because it works.” So Dr. Williams, the newly appointed Associate Commissioner for the Head Start Bureau, opened his discussion of the Head Start program. Head Start is a comprehensive child development program that works with the whole child to promote self-esteem, education and literacy, and health through four channels: education, health services (including medical, dental, psychological, and nutrition), social services, and parent involvement. President Bush has recommended that Head Start be allocated $600 million for the coming fiscal vear. Head Start is proud of its cooperative relationships with other programs and agencies, including the Health Care Financing Administration, the Public Health Service, and the Department of Education. Dr. Williams said that he is happy to be working with such a successful program and named the follow- ing priorities for Head Start in the coming vear * To better serve pregnant women and to provide optimal prenatal care to keep mothers healthy and to help them bear healthy children, * To maintain continuing relationships with pri- mary care physicians. * To improve clients’ access to secondary care. * To provide referrals to appropriate psvchological counseling, substance abuse treatment, etc. * To reduce the number of low-birthweight babies and to reduce the infant mortality rate. * To improve clients’ understanding of wellness and increase personal responsibility for health, including cessation of cigarette smoking, alcohol or substance abuse, etc. Donna F. LaVallee, M.S. Nutrition Coordinator New Visions for Newport County Dividing her work week between WIC and Head Start in her jJobas nutrition coordinator for this program in Newport County, Rhode Island, Ms. LaVallee had many insights about how to integrate efforts between these programs. Because WIC and Head Start serve the same popu- lation, both programs and their clients benefit when they work together. Ms. LaVallee offered many simple sugges- tions to help foster collaboration between local WIC and Head Start offices, such as open houses, cross-referrals, membership on each other's policy committees, guest speaker exchanges, and assistance in program evaluation. Because WIC and Head Start have so much in common, they can share many things, including resources, cospon- sored clinics and health fairs, joint newsletters, allin-one application forms, community needs assessment data, and more. Ms, LaVallee urged program staff to “commu- nicate, cooperate, and coordinate.” Thurma McCann, M.D., M.P.H. Acting Director, Office of Healthy Start Health Resources and Services Administration Dr. McCann described the Healthy Start program, which is based on recommendations from the President's Commission on Infant Mortality. Now in its early stages. Healthy Start is being implemented in 15 communities with the aim of reducing infant mortality in those communities by 50 percent. Program applicants were required to meet five basic criteria to have their proposals considered: (1) innovation in delivery svstems (e.g., user friendli- ness, etc.), (2) community commitment to Healthy Start’s goals, (3) the ability to offer increased access to health care to reduce low birth weight and other causes of infant mortality, (4) integration of medical and social services, and (5) multiagency participation. Asa whole, the Healthy Start program is unique in that it allocates unprecedented resources to prenatal and perinatal care, mandates community choice and flex- ibility, and empowers communities to build the kinds of programs that will work best for them. Although Healthy Start funding Jasts for only 5 years, Dr. McCann stressed thata community that has “bought into” the program can find a way to keep it in place even after Federal funding is withdrawn. Healthy Start encourages community involvement and has won support from various churches, civic groups, tribal councils, schools, and business organizations. Such agencies as the Public Health Service, the Health Care Financing Administration, the Department of Education, and the Department of Health and Human Services are also active partners in the natonal progran, Report of the Surgeon General's Conference 137 Patricia A. McKee Chief, Grants Administration Branch Office of Elementary and Secondary Education US. Department of Education Nowin its third year, the Even Start program is proud of its cooperative relationships with other agencies and within the communities it serves. Ms. McKee presented a brief overview of what Even Start is doing in this area. When Even Start was mandated by Congress 3 years ago, part of that mandate required that Even Start work with other agencies to achieve their common goals. The 76 programs established to date contain a total of 869 collaborative arrangements for primary (or “core”) ser- vices and 1,600 collaborative arrangements for support services. More than 67 percent of all Even Start programs work with their local Head Start programs. Howard T. Miller Coordinator Even Start Family Literacy Program Prince George's County Public Schools Mr. Miller opened his presentation witha briefoverview of the statistics on illiteracy in America and whatit costs. More than 40 percent ofall military service enlistees are functionally illiterate. More than two-thirds of all U.S. colleges must offer remedial English classes. More than one-half of all prison inmates are functionally illiterate. He stated that these and other data show that the deleterious effects of illiteracy lead to financial losses, crime, violence, poverty, and depression. Even Start's approach in Prince George's County is based on two important assumptions: (1) parents’ level of educa- tional achievement affects their children’s success in school and (2) a child raised in a literate home will naturally learn to read, just as he will learn to talk and to feed himself, through learning “reading behaviors.” The second assumption is called “emergent literacy.” Mr. Miller stressed the importance of educators’ getting to know the families of the children they teach, to form a cooperative partnership between the school and the parent. Parents who are enrolled in the Even Start program along with their children are able to go to class when itis convenient for them, and transportation is provided. Parents learn new skillsin preparing for the 138 Parents Speak Out for America's Children “If we can help the parent become literate, these families can succeed.” GED, and they also learn parenting skills that help them teach their children. General health and nutrition services also play an important part in helping families tolearn and grow together; recognizing this importance, Even Start coordinates closely with Head Start, WIC, the Cooperative Extension, and schools. “If we can help the parent become literate,” Mr. Miller said, “these ” families can succeed ~1 Jajdey) Closing Remarks Chapter 7 Closing Remarks Antonia C. Novello, M.D., M.P.H. Surgeon General Ihave only afew comments. I think that today you have seen that when people get together, things work. But I can also tell you I am proud of your three capable representatives who communicated your wisdom about what this country needs and what this administration can do to solve our problems. This was unrehearsed; it was collectively put together; and I think it probably represents us better than anyone talking from their own pain. This is what makes this Conference unique. Moreover, it’s even more difficult for me to speak after having heard people like this. [also can tell vou that. when this Conference is done and when we all go our separate ways back to the States and communities, my impression will be that we have come together for only one purpose, and that’s the purpose of taking care of children and families. The President said his vision is that, in the vear 2000, this country and these children are going to move forward, The children of today will be the explorers, writers, teachers, doctors, and inventors of tomorrow. President Bush said that, in America, families come first, and that’s what makes this conference unique. You are here from 50 States and from Territories as far awav as Guam. Youare here from Puerto Rico, and you are here from everywhere. Contrary to what the only reporter that has come aboard asked yesterday, vou are not all Republicans. In this Conference, I have taken great pain to make sure that we are not labeled bv ethnicity, language, or gender. We are here with only one mission, no matter where we come from and who we are. That mission is to care for the children and families of this county. You have articulated what you need, and I have never heard it so well expressed. This Conference is focused on our children, and we're working toward the benefits of every child. I have been much more im- pressed than ever by people who perhaps never knew 140 Parents Speak Out for America's Children they could speak for others and be taken seriously. We said this is about respect, respect across the board. I think in these 3 days, we have shared the commonality that. even if vou don’t speak the same language, it doesn't mean that you are not intelligent. Most impor- tantly, we recognize that “poor” is a transient state of mind: today, it is vou; tomorrow, it can be me. So let’s not only be culturally sensitive, let's also be culturally responsive. I think this Conference has concentrated on that. Whatever personal circumstances we brought here and I can assure vou that some of your faces said, “Show me,” and some of your faces said, “One more conference; don’t bother me with trivia”—I can assure you that by having come here for whatever was the message vou thought you wanted to bring, you have advanced the field of every child, and vou will perhaps be as responsible for having made one more child part of these United States by just having been here. For that you should be complimented. We came here to deal with awareness, transition, and participation. After having listened to the parents, vou realize that parents do all three at once, and some- times one parent does it all. [hope now that vou realize parents are crucial for whatever we're going to doin this counuy for the families. If you don’t believe me, then [want to know where vou've been for the last 3 days. When I charged you on Monday, I told vou I was going to ask the best of vou. But I warn you, I'm going to ask even more of vou, even when vou think you're going to go home and forget about this Conference. I can tell you that we've heard the parents and the groups. I’ve felt the pain, and I've talked to you. I've talked to every one of you individually or collectively. When we leave this place, we will have everything that’s been said included in a proceedings compendium. We will complete the docu- ment as quickly as possible, but remember we must go through the General Services Administration and Gen- eral Accounting Office to have it printed. We’re going to make sure that this goes to every Governor, every one of you, and every legislator who asks for it; right now the Hill is also clamoring for it. So this is going to be a public document for all of those who need it. wealthy CHikiwen “Heady to Team But the document will be just a document if vou do not work with us to make it a realitv. You were able to see that our officials are committed. but don’t ever put the rights and the benefits of your family only on some other people’s shoulders. You have to share the responsibility; otherwise, it will not become a reality. The reforms of this county will come forward through the families; the parents spoke today, and thev no longer want to be silent partners. They want to be activists and advocates, and to do that vou also have to speak for yourself. Otherwise, we're not going to get anywhere. I also heard that parents, especially fathers, have to be part of everything that we do. | think, as I've said before, we have to find wavs by which we bring fathers into the family, not wavs by which we keep them away. I know that parents have to be respected as experts, and it is imperative that we do that. Another big area is the need for flexible hours, and in immunization, we have discovered that repeat- edly. Hours from 8:30 [a.m.] to 5:00 [p.m.] is a beauti- ful protocol, but 67 percent of the parents work ina job they cannot afford to leave for 1 hour and vaccinate a kid, and 21 percent of this country’s families are headed byasingle parent. Open the clinic when the parents can come, if vou really are serious about immunizing. For once, “Put vour money where vour mouth is.” We must make sure that we write in the language that people understand. Yesterdav, I was in a transplan- tation meeting, and they told me I need bilingual permits to donate my organs, And they say minorities do not donate. Would vou donate vour organs by signing a document given to vou by a person who is not cultur- ally sensitive, in a language that vou do not understand? If vou sign. I have a bridge I want to talk to vou about. This Department is making sure that evervthing is put in the language that people will understand. Most importantly, some of our groups have no more than an Sth grade education. So again vou said it, “Put it in words that people understand.” In medicine, we re alwavs talking about EKG [electrocardiogram ] and EEG [electroencephalogram].and [asked a doctor, “Whatis an EGG?” He didn't know, so I told him, “an egg.” It's also important to remember that the country is full of children having children. We have to worry about them, too. Thev do not love their children less because they are children themselves. Thev are going to need understanding, and they are going to need us to help them, too. Selfesteem was another issue raised here. Self- esteem is no longer just for the child. Italso has to come from the parents, and that is something that we cannot buy. Medicare, Medicaid, nor Social Security can buy it. That has to come from within. Butwe cannot only think of sel-esteem for the children. We have to give it for the parents. Occasionally, take your time to tell us when we do good, and, occasionally, just forget that we did bad. 1 think positive is part of where we have to go, One woman said we have to help people to help themselves. rather than offer programs that foster de- pendency. Lagree. I have the feeling that that should be away we should move toward our goal. We might use different words. We might sav “advocacy” or “empower- ment.” Either wav, we need a little more positivism in getting together. Report of the Surgeon General's Conterence 144 “ .. this Conference has done<6ne thing beautifully: It has vi the parents. realize tha silent.” The title of the Conference has been “Healthy Children Ready to Learn: The Critical Role of Parents.” I do believe—and I hope you do, too—that this Conference has done one thing beautifully: It has vindicated the parents. It has helped people realize that they can no longer be silent. No single program in this country should be done in the absence of the parents’ participation; otherwise, it will be one more useless piece of paper. I said in my opening remarks that this Conference was the result of 18 months of planning. I believe that is totally obsolete at the end of these 3 days. This is just the beginning, not the end of 18 months. I have seen all my Assistant Secretaries involved in this with me, and we’re going to make sure that whatever we plan will be with families, parents, and children in mind. For that reason, this is a success story. I know I told you not to ever get discouraged with the Federal Government. It’s a powerful one, and you have to learn how to use it as a tool. Today you had everyone at the top discussing how they see it. As I told you, perception versus reality is the problem here. You might perceive one thing, and the reality might not be so bad, but I think it worked on both sides of the table. You have heard from all of us—from the Secretary of Health and Human Services, the Secretary of 142 Parents Speak Out for America's Children Agriculture, the Secretary of Education, six Assistant Secretaries, and the President of the United States. But most importantly, we heard from you. That’s what makes this Conference unique. I think we should never underestimate the power of a coalition. Alone, we are not going to do anything, including the President himself. We all have to be able to tell the Government we’re here. We're part of the solution. Please, let’s not be part of the problem. I want all of us to get together, regardless of what we felt when we came here, because united we can doa lot of work. I know that you probably have thought, “She’s going to repeat herself again.” No one alone can work. We have to unite. But I also told you to use anger if necessary. I can tell you that I feel good that you did, because when you used anger, you were collectively expressing something that I hope the Conference hasalleviated. Perhaps now you at least know a place where you can find a solution for your problem. I know that I have told you that we have to be creative. Part of this world is discourage- ment, but I’m not going to let anyone use it to take care of you or me. Discouragement is a state of mind. I ask you to join me to share the responsibility for making your family and your children well. Share with us at the local and at the State and at the National levels and in the public and the private sectors. It’s no longer one person’s responsibility. There is too much at stake! So look at everything that works, and look at everything you think needs to be replaced. Then call and cajole and make sure that you get involved. I know that we are “conferenced out,” but I know also that we are accelerated to the “max.” You have to use that momentum when you get back to work and to your communities and say, “You know when the Surgeon General, the Secretaries, and the President speak, they are committed to make the family top priority.” Let’s get real. Let’s get real! I can tell you that when the experts go home, they are not going to be devoid of work because I am not going to be devoid of work. I have your telephone numbers, your fax numbers, and even your grandfather’s numbers. So, rest assured that this is not just the ending of 3 days, but it’s the begin- ning of a coalition of parents taken seriously, trying to determine, through their collective actions, what this government can do for you. I’m with you. Are you with me? I want to bring six people to the podium because without them I don’t think we could have done this. They are the three parents’ representatives and the three parents’ alternates. I think we should give an applause to our panel. We had six parents, three to come forward and three to be available in case they fainted. Obviously, we didn’t need the other three, but they were there and ready to go. So, I would like to do something. There’s not much I can do for you all, but I can certainly give what I call the Surgeon General’s Certificate of Appreciation, and believe me, T do not give that too freely. But, when people give of them- selves, as they did to represent you, I think a Certificate of Appreciation from me isjust the first step. I think that you should be able to thank these six people who represented you so well. Because without them, and you, this Conference would have never happened. So how about if we applaud for all of us. Ellie Valdez- Honeyman, Larry Bell—I am eating squash all my life— Sandy Slavet, Rosa Palacious, and Jesus Sada. Sherlita [Reeves] had to go and pick up her little child, so we'll keep Sherlita’s and mail it to her. We might be “conferenced out,” but! think we are motivated to go out there and do a lot for what we have tried to accomplish. Most important, is that, collec- tively, we will be able to do it. This document will not stay on anybody’s shelves; I guarantee you that. So today’s the beginning, but I need you. Remember, united we will succeed. Separated, we will not get anywhere. Today's the first day. Thank you for coming, and God bless you. Report of the Surgeon General's Conference 143 V xipueddy Conference Participants Sy es ao Mrs lest eh me BI) (Lee ce The Surgeon General's Conference xtealthy CHidartn The Critical Role of Parents Washington, DC February 9-12, 1992 'To protect their privacy, addresses of the State Parent Delegates have been omitted. However, the parents had the opportunity to exchange addresses and phone numbers at the Conference. *Attended the Native American Parent Work Group. ?Attended the Migrant Parent Work Group. Alabama Susan Colburn Montgomery Letitia Hendricks Montgomery Susan Watt Childersburg Alaska Esther Johnson’ Augoou Danielle Madigan Elmendorf Sue Wilken Fairbanks American Samoa Karen Ho Ching Pago Pago Iutita Savali Pago Pago Faafetai Seumany Pago Pago Lui Tuitele Pago Pago Arizona Pamela Jones Phoenix Ernesto Meza Phoenix Pamela Morrison Phoenix Jerry Pearson Phoenix A-2 Parents Speak Out for America's Children Arkansas Pamela Ashcraft Little Rock Mary Blanchard Blytheville Deborah Frazier Little Rock Barbara Gilkey Little Rock Angela Lee Little Rock Nancy Lovette Blevins Hazel Murray Pocahontas Mary Ann Pickard Searcy Sherlita Reeves Paragould Linda Spence Blytheville Dinah Wells Manila California Anna Cortez Norwalk Ann Kinkor Rancho Palos Verdes Colorado Diane Reeves Denver Ellie Valdez-Honeyman Arvado Connecticut Judy O’Leary Trumbull Delaware Laurence Bell Laurel Laura Ivansons Newark District of Columbia Goldie Anthony-Henry Washington Dona Brawner Washington Brenda Calloway Washington Joan Christopher Washington Rosalind Coleman Washington Connie Dudley Washington Cristina Espinel Washington Lisa Holland Washington Susie King Washington Tawana Kinney Washington Maria Meehan Washington Kurt Stand Washington Lorraine Street Washington Florida Kenneth Chambers Tallahassee Romero Cisneros? Wauchula Shirley Herbert Kendall Lauderdale Lakes Georgia Pappas Jarpon Spring Wendell Rollason® Immokalee Jesus Sada‘ Ruskin Lisa Spikes Tallahassee Annette Townsend Tallahassee Felix Valle’ Immokalee Connie Wells* Wauchula Verdule Youyoute’® Zolfo Springs Georgia Anne Butts Atlanta Tina Doucett Columbus Louise Harris Clarkesville Porter Harris Clarkesville Gen Hunter Atlanta Glenda Welch Gainesville Sarita Welch Clayton Guam Mae Ada Agana Margaret Artero Agana State Parent Delegates as Hawaii Susan Rocco Aiea Lanette Teixeira Honolulu Helen Usuvale Honolulu Idaho Marcia Hallett Boise Carolyn Kopke Boise illinois Marion Cooper Chicago Pat Doherty-Wildner Chicago Rosemarie Frey Wheaton Mitzi Montgomery Sauk Village Catherine Raack Wheaton Debra Zurkamer Springfield Indiana Carol Burkes Martinsville Mary Snyder Martinsville lowa Gloria Klinefelter Dubuque Jean Linder Johnston Report of the Surgeon General's Conference A-3 State Parent Delegates a Kansas Judy Moler Topeka Josie Torrez Topeka Kentucky Rhonda Henning Louisville Gleason Wheatley Frankfort Louisiana Joan Caloway Shreveport Tammy Rodgers Baton Rouge Leah Schwartzman Baton Rouge Charles Tyler New Orleans Maine Annette Cohen-Hyman Kennebunkport Jenifer Van Deusen Augusta Mariana Islands Victoria Mendiola Tinian Severina Ogo Rotas Rosa Palacious-Power Saipan Rita Sablan Saipan Catalino Sanchez Saipan Elizabeth Torres-Untalan Saipan Maryland Kathy Cooper Bel Air Mona Freedman Baltimore Shawn Fritz Frederick Barbara Mallonee Annapolis Gordon Mallonee Annapolis Valarie Phillips Baltimore Massachusetts Deirdre Almeida Amherst Rosalie Edes Concord Sandy Slavet Randolph Michigan Charlotte Boatmon Quincy Myra Charleston Detroit . L. Bryn Fortune Farmington Hills Celia Garza Detroit Luz Teresa Hernandez Detroit Minnesota David Becker St. Paul Roxanna Lee Foster St. Paul A-4 Parents Speak Out for America's Children Mississippi Patty Appleton Jackson Gwendolyn Fortson Jackson Robert Fortson Jackson Patricia Hych Tupelo Missouri Alan Killingsworth Springfield Stephanie Mason St. Louis Deborah McDannold Columbia Caro] Mertensmeyer Columbia Ellen Moses Creve Coeur Donna Snead Kansas City Montana Lea Bear Cub Brockton Elien Bourgeau Missoula Marilyn Fernelius Missoula Julie Flynn’? Wolf Point Doreen J. Fowler Wolf Point Karen Moses Helena Sue Phelan Helena Nebraska Susan Christensen Omaha Cyndia Eckhardt Lincoln Nevada Patti Miller Reno Robert Miller Las Vegas New Hampshire Carol Barleon Bow Brenda Copp Manchester New Jersey Joan Applebaum West Trenton James Brown East Orange Camelia Leach Newark Rhonda Nichols Newark Ciro Scalera Newark New Mexico Kathryn Brown’ Taos Pueblo Shirley Chaves Espanola Yvonne Gomez’ Taos Pueblo Patricia Solomon-Thomas Lagona New York Marvina Heywood Utica Bob Shannon Buffalo North Carolina Gail Dunton Arden Gwendolyn Parker Chinquapin Meg Sawicki Charlotte North Dakota Mary Ann Anderson Bismarck Nanci Cooley Grand Forks Ohio Sandy Barber Wauseon Judy Minatodani Solon Peter Somani Columbus April Thoms Reynoldsburg Oklahoma Pamela Hunt’ Skiatook Marcia Lemons Oklahoma City Mary Littles Midwest City Linda Terrell Oklahoma City Susan Webb Norman James Wilson Cushing State Parent Delegates ee Oregon Paula Bender-Baird Enterprise Jean Josephson Portland Katherine Weit Portland Pennsylvania Kisha Henley-Davis Harrisburg Loaiza Manzo Harrisburg Frank Meredick Plymouth Ralph Warner East Greenville Mary Wood Hadley Puerto Rico Sonia Benitez Catano Maria Burgos Canovanas Abigail Munoz Alverio Caguas Rafael Sanabria Santurce Alma Socorro De Leon Caguas Rhode Island Linda Dee Bryan Providence William Bryan West Greenwich Cindy Flores Coventry Patrice Richardson Barrington Janet Samos Warwick Report of the Surgeon General's Conference A-5 State Parent Delegates ee South Carolina Betty Baker Davidson Columbia Debra Derr Columbia South Dakota Julie Darger Pierre Glenda VanderPol Academy Tennessee Michael Allen Monterey Sherry Allen Monterey Linda Lemons Memphis Phyllis Medlin Cookville Texas Holly Craig Grand Prairie Darlene Dubicki Austin Norma Heredia Arlington Priscilla King Georgetown Leslie Lanham Austin Candy Sheehan Coppell Maria Vargas El Paso Utah Brent Briggs Sandy Becky Hatfield West Jordan Vermont Cathy Crow South Burlington Susan Rump Thetford Center Clark Sutton Middlebury Megan Sutton Middlebury Karen Witkin Essex Junction Virgin Islands Mark Benoit St. Croix Verona Charlemagne St. Thomas Joyce Lebron St. Thomas Patricia Nobbie St. Croix Catherine Rogers St. Croix MaryAnn Weston-Livisay St. Thomas Virginia Loretta Byrd Richmond Peggy Singleton Oakton Cherie Takemoto Alexandria Marilyn West Richmond A-6 Parents Speak Out for America's Children Washington Radl Arambul* Oralia Garza Wapato Kathy Johnson Zillah Felix Montes® Sunnyside West Virginia Lorna Adkins South Charleston Bob Craig Farmington Kathy McCullough Charleston Barbara Merrill Charleston Jane Vance South Charleston Wisconsin Ody Fish Hartland Patty Peterson Cashton Patty Skenandore De Pere Wyoming Desiree Lopez Rawlins Carole Palmer Cheyenne Carolyn Abdullah Center to Prevent Handgun Violence Washington, DC Steve Abrams U.S. Department of Agriculture Food and Consumer Services Washington, DC Shellie Abramson U.S. Public Health Service Washington, DC Irene Adderley Washington, DC Public Schools Washington, DC Jeanette E. Akhter, M.D. National Perinatal Association Bowie, MD Katrina Alaman-Murray National Association of Social Workers Washington, DC Lamar Alexander Secretary of Education Washington, DC Robert E. Alexander U.S. Department of Education Office of Migrant Education Washington, DC Barbara Aliza Association of Maternal and Child Health Programs Washington, DC Dorothy J. Allbritten National Association of Children’s Hospitals and Related Institutions Alexandria, VA General Participants Myron Allukian, Jr., D.D.S., M.P.H. Boston Department of Health and Hospitals Boston, MA Mary Louise Alving, M.Ed. Citizens Education Center Seattle, WA Rita L. Amadeo, M.D. Easter Seals Gwaynabo, PR Maureen Ambrose Pennsylvania Department of Education Harrisburg, PA Robert W. Amler, M.D., M.S. U.S. Public Health Service Atlanta, GA Kim J. Amos National Center for Clinical Infants Program Arlington, VA Polly Arango Algodones Associates Algodones, NM Ann Armstrong-Dailey Children’s Hospice International Alexandria, VA Susan Austin National Association of Federal Education Program Administrators Philadelphia, PA Corinne Axelrod U.S. Public Health Service Rockville, MD Laura Diaz Baker Puerto Rico Federal Affairs Administration Washington, DC Wendy Baldwin, Ph.D. National Institutes of Health Bethesda, MD Linda V. Barnett U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA Rosemary Ramirez Barbour U.S. Department of Education Washington, DC Sandy Bastone U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA Pat Bayer American School Food Service Association Alexandria, VA Mae Beck Black Coalition of Concerned Citizens for Child Care Dallas, TX Juliane Becket University of Iowa Cedar Rapids, IA Julie Beckett Federation for Children with Special Needs Boston, MA Arlene Bennett National Association for the Advancement of Colored People Legal Defense and Educational Fund, Inc. Philadelphia, PA Report of the Surgeon General's Conference A-7 General Participants ee Virginia Berg U.S. Department of Education Office of Migrant Education Washington, DC Catherine Bertini Assistant Secretary for Food and Consumer Services U.S. Department of Agriculture Washington, DC Lea D. Beshir District of Columbia Commission of Public Health Washington, DC Susan Binder, M.D. Centers for Disease Control Atlanta, GA Patrice Birman U.S. General Accounting Office Washington, DC Kathleen Kirk Bishop, D.S.W. Vermont Department of Social Work Burlington, VT Lorine P. Bizzell U.S. Department of Agriculture Food and Nutrition Service Atlanta, GA Tara Blackcoon Wisconsin Winnebago Health Authority Mauston, WI Vicki Blackcoon Wisconsin Winnebago Health Authority Mauston, WI Randall Blackdeer Wisconsin Winnebago Health Authority Mauston, WI Heather Block U.S. Department of Agriculture Child Nutrition Service Alexandria, VA Joy E. Blount Georgia Department of Education Atlanta, GA Donna Blum National Institutes of Health Bethesda, MD Stephanie Bordenick National Institutes of Health Rockville, MD Mary Ellen Bradshaw, M.D. Bureau of School Health Service Washington, DC Charlotte Brantley Texas Department of Human Services Austin, TX George Brenneman U.S. Public Health Service Rockville, MD Patrick Bresette Center for Public Policy Priorities Austin, TX Adrienne Brigmon Head Start Bureau Washington, DC Robin Brocato, M.HLS. Head Start Bureau Washington, DC Leigh Brown Oklahoma State Department of Health Oklahoma City, OK A-8 Parents Speak Out for America's Children Linda Brown Health Care Financing Administration Washington, DC Scott Brown U.S. Department of Education Office of Special Education Programs Washington, DC Marsha E. Butler, D.D.S., M.P.H. Colgate-Palmolive Company New York, NY John A. Butterfield President’s Council on Physical Fitness and Sports Washington, DC Ann G. Cagigas, R.N., IBCLC Guaynabo, PR Suzanne Camp Greater Southeast Healthcare System Washington, DC Mary M. Campbell American Psychological Association Washington, DC Rose Cardinal Asthma and Allergy Foundation Washington, DC Mary Brecht Carpenter, R.N., M.P.H. National Commission to Prevent Infant Mortality Washington, DC Lorraine Carrimon Wisconsin Winnebago Health Authority Mauston, WI Sylvia Carter Head Start Bureau College Park, MD Sandra Carton Head Start Bureau Washington, DC DonnaRae Castillo National Research Service Award Training Program Rockville, MD Jennifer M. Cernoch, Ph.D. Santa Rosa Children’s Hospital San Antonio, TX Gwen D. Chance Texas Head Start Collaboration Austin, TX Barbara E. Chandler, M.O.T., O.T.R. American Occupational Therapy Association Rockville, MD Bruce R. Chelikowsky Indian Health Service Rockville, MD Ann Chen Nurses Association of the College of Obstetricians and Gynecologists Washington, DC Deborah Clark National Immunization Campaign Washington, DC Valencia Clarke Association for the Care of Children’s Health Bethesda, MD Deborah Clendaniel, M.S. Delaware Maternal and Child Health Services Dover, DE Helen T. Closson Elliot Health System Manchester, NH Beverly Coleman-Miller, M.D. The BCM Group, Inc. Washington, DC Robert J. Collins Indian Health Service Rockville, MD Donna L. Conforti U.S. Department of Education Washington, DC Mary Ann Cooney Manchester Health Department Manchester, NH Lori Cooper Healthy Mothers, Healthy Babies Washington, DC Genevive W. Cornelius U.S. Department of Education Office of Elementary and Secondary Education Washington, DC Anna Critz U.S. Department of Education Washington, DC Nancy Cude Arlington Early Intervention Coordinating Council Arlington, VA Ronald Daly U.S. Department of Agriculture Extension Service Washington, DC General Participants Ss Diane D’Angelo RMC Research Corporation Portsmouth, NH Suzanne Danielson Department of Health and Hospitals Baton Rouge, LA Margaret (Peg) M. Davis Governor’s Planning Office Harrisburg, PA Robert E. Dawson U.S. Public Health Service Rockville, MD Alberta Day Wisconsin Winnebago Health Authority Mauston, WI Mary Dale DeBore Bethesda, MD Chris DeGraw, M.D., M.P.H. U.S. Department of Health and Human Services Office of the Assistant Secretary of Health Washington, DC Debra Deigado School Based Adolescent Health Care Program Washington, DC Diana Denboba U.S. Public Health Service Rockville, MD Sara Reed DePersio Oklahoma Department of Health Oklahoma City, OK Julie DeSeyn The Home and School Institute Washington, DC Report of the Surgeon General's Conference A-9 General Participants Po Dee Dickelman Child Protection Program Falls Church, VA Patricia Divine-Hawkins Head Start Bureau Washington, DC Clare M. Domenici U.S. Department of Health and Human Services Washington, DC Dana M. Dorf U.S. Department of Agriculture Food and Nutrition Service Boston, MA Laura Drake Barbara Bush Foundation for Family Literacy New York, NY M. Ann Drum, D.D.S., M.P.H. Office of the Surgeon General Washington, DC Mary Jean Duckett Health Care Financing Administration Baltimore, MD B. Richmond Dudley, Jr. General Services Administration Washington, DC John C. Duffy U.S. Public Health Service Rockville, MD Janet Dumont U.S. Public Health Service Rockville, MD Dennis Dunn Growing Child Lafayette, IN Leslie Dunne Healthy Mothers, Healthy Babies Washington, DC Eden Fisher Durbin Y.M.C.A. of the U.S.A. Washington, DC Melanie Earl Santa Rosa Children’s Hospital San Antonio, TX Larry Edelman The Kennedy Institute Baltimore, MD Maurice J. Elias, Ph.D. Rutgers University New Brunswick, NJ Gail Johnston Ellis Epilepsy Foundation of America Landover, MD Ann Ellwood Minnesota Early Learning Design Minneapolis, MN Martha Emerling Schwartz Foundation Mt. Laurel, NJ LaRue Emmell Montgomery County Health Department Norristown, PA Lou Enoff Social Security Administration Baltimore, MD Willie L. Epps, Ph.D. St. Clair County Head Start Program East St. Louis, IL A-10 Parents Speak Out for America's Children Bob Erbetta U.S. Naval Reserve—Campaign Drug Free America Marblehead, MA Alyson Escobar U.S. Department of Agriculture Hyattsville, MD Juanita C. Evans, M.S.W. U.S. Public Health Service Rockville, MD Nancy Evans Manchester School District Manchester, NH Elizabeth Farquhar, Ph.D. U.S. Department of Education Office of the Undersecretary Washington, DC Herta B. Feely National SAFE KIDS Campaign Washington, DC Janice Feld Legislative Affairs Specialist Alexandria, VA Karen S. Fennell American College of Nurse- Midwives Washington, DC Sister Isolina Ferré Easter Seals Ponce, PR M. J. Fingland Office of the Surgeon General Washington, DC Marilyn J. Flood Child Care Action Campaign New York, NY Tony Fowler U.S. Department of Education Washington, DC Amy Fox American Academy of Pediatric Dentistry Chicago, IL Harriette Fox Fox Health Policy Consultants, Inc. Washington, DC Clara L. French U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA Amy Friedlander U.S. General Accounting Office Washington, DC Robert G. Froehlke, M.D. Office of the Surgeon General Washington, DC Robin S. Funston U.S. Department of Health and Human Services Office of the Secretary Washington, DC Margaret Garikes Office of the Surgeon General Washington, DC Constance Garner, R.N.C., M.S.N., Ed.5. U.S. Department of Education Office of Special Education Programs Washington, DC Preston J. Garrison United Way of America Alexandria, VA Karen T. Garthright U.S. Department of Health and Human Services Food and Drug Administration Rockville, MD Kay Ghahremani U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA Frankie Gibson Head Start Bureau Washington, DC Barbara Gleason America 2000 Washington, DC Mike Golden Maryland Department of Health and Mental Hygiene Baltimore, MD Gloria Gonzalez Office of the Surgeon General Washington, DC Nilda M. Gonzalez Puerto Rico Easter Seals San Juan, PR Bill Gould National Network of Self Help Clearinghouses Los Angeles, CA Linda Graham Children’s Rehabilitation Service Montgomery, AL Holly Grason Association of Maternal and Child Health Programs Washington, DC General Participants ee Pamela Greenberg National Association of Pediatric Nurses and Practitioners Washington, DC Joan Greene National Association of Pediatric Nurses and Practitioners Arnold, MD Sarah M. Greene Administration for Children, Youth and Families Alexandria, VA Aido G. Gregory Puerto Rico Department of Health Puerto Rico Sue Greig, M.S., R.D. American School Food Service Association Manhattan, KS Jerry Griepentrog Carson City, NV Mark Grimes American Academy of Pediatrics Elk Grove Village, IL Lucy Gritzmacher Candlelighters Childhood Cancer Foundation Washington, DC Virgil Gulker Love, Inc. Holland, MI Lynn F. Gurkin Department of Environment, Health, and Natural Resources Raleigh, NC William H.J. Haffner, M.D. Indian Health Service Bethesda, MD Report of the Surgeon General's Conference A-11 General Participants Bi Cynthia Haileselassie U.S. Department of Health and Human Services Washington, DC Barbara Hallman U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA Janice Hamilton JMH Communications New York, NY Anne L. Hansen Michigan Department of Education Lansing, MI Connie Hansen Council of Community Services of Roanoke Roanoke, VA Kirsten Hansen, M.Ed. Georgetown University Child Development Center Washington, DC Robert G. Harmon, M.D., M.P.H. Health Resources and Services Administration Rockville, MD Jackie Harrison, R.N. Children’s Hospital New Orleans, LA Max Harrison American School Food Service Association Alexandria, VA Edith Harvey U.S. Department of Education Office of Migrant Education Washington, DC William Haskins National Urban League New York, NY Laura Havens March of Dimes Washington, DC Ethel Hawkins District of Columbia General Hospital Washington, DC Barbara Heiser, R.N., B.S.N., IBCLC La Leche League International Franklin Park, IL Michael H. Henrichs, Ph.D. Kids Adjusting Through Support, Inc. Rochester, NY O. Marie Henry, R.N., DNSC, FAAN Office of the Surgeon General Washington, DC Victoria Hertel American School Health Association Littleton, CO Catherine A. Hess, MSW American Public Health Association Washington, DC Laurie Hicherson U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA Grant Higginson, M.D., M.P.H. Office of Health Services Portland, OR A-12 Parents Speak Out for America's Children Donna Hines U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA Sandra L. Hofferth, Ph.D. The Urban Institute Washington, DC Patrick F. Hogan U.S. Department of Education Office of Migrant Education Washington, DC Joan Holloway Division of Special Populations Program Development Rockville, MD Silvia Holschneider National Health Education Consortium Washington, DC Jerry K. Hood U.S. Public Health Service Rockville, MD Beverly J. Hoover American Red Cross Washington, DC Wade F. Horn, Ph.D. Administration for Children, Youth and Families Washington, DC Karen Horne South Carolina Governor’s Office Columbia, SC Alice M. Horowitz National Institutes of Health Bethesda, MD Vernon N. Houk, M.D. Centers for Disease Control Atlanta, GA Frances Howard National Library of Medicine Rockville, MD Judy Hudgins Virginia Department of Education Richmond, VA Louise Hunt, R.N., B.S.N. U.S. Public Health Service Rockville, MD Vince L. Hutchins U.S. Public Health Service Rockville, MD Michael T. Hynan, Ph.D. University of Wisconsin- Milwaukee Milwaukee, WI Darla Ideus Center on Budget and Policy Priority Washington, DC Roger Iron Cloud Head Start Bureau Washington, DC Angeles Lopez Isales Departamento de Education de Puerto Rico Hato Rey, PR Brenda James-Pitt Montgomery County Health Department Norristown, PA Mary A. Jansen, Ph.D. U.S. Department of Health and Human Services Alcohol, Drug Abuse and Mental Health Administration Rockville, MD David Johnsen Case Western Reserve University Cleveland, OH Beverly H. Johnson Association for the Care of Children’s Health Bethesda, MD Dr. Jerry M. Johnson U.S. Coast Guard Washington, DC Richard H. Johnson, ACSW Head Start Bureau Washington, DC Susan Johnson Texas - Office of the Governor Austin, TX Dennis Jolley Office of the Surgeon General Washington, DC Bertha Jones U.S. Department of Housing and Urban Development Washington, DC Cami Jones Texas Education Agency Austin, TX Deborah Jones New Jersey State WIC Program Trenton, NJ Linda Jupin U.S. Department of Agriculture Food and Nutrition Service Washington, DC Marta Kealey U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA General Participants ee Woodie Kessel U.S. Public Health Service Washington, DC Arlene Kiely Association for the Care of Children’s Health Bethesda, MD Stephen King Agency for Health Care Policy and Research Rockville, MD Randy Kingsley U.S. Department of Education Washington, DC Regina L. Kinnard . U.S. Department of Education Washington, DC Ellen Eliason Kisker, Ph.D. Mathematica Policy Research, Inc. Princeton, NJ Nancy Kleckner Growing Child, Growing Parent Lafayette, IN Jean Klinge U.S. Department of Education . Washington, DC Jane Kratovil Council of Chief State School Officers Washington, DC Stephen H. Kreimer National School Health Education Coalition Washington, DC Mary A. Krickus American School Food Service Association Alexandria, VA Report of the Surgeon General's Conference A-13 General Participants ee Heidi Kurtz American Federation of Teachers Washington, DC Hanns Kuttner Office of Policy Development The White House Washington, DC Leslie Lanham Children’s Defense Fund—Texas Austin, TX Cheryl LaPointe U.S. Public Health Service Rockville, MD Georgianna Larson Pathfinder Resources, Inc. St. Paul, MN Kristen Larson U.S. Department of Health and Human Services Washington, DC Dora L. Lasanta Departamento de Education de Puerto Rico Bayamou, PR Bill Latimer North Carolina Governor’s Office Washington, DC Charles LaValiee Western Pennsylvania Caring Foundation, Inc. Pittsburgh, PA Donna F. LaVallee New Visions for Newport County Newport, RI Jean E. Lazar U.S. Public Health Service Rockville, MD Rice C. Leach, M.D. Office of the Surgeon General Rockville, MD Brenda Leath National Health/Education Consortium Washington, DC Meg Leavy University of Maryland College Park, MD Alice Lenihan, R.D. North Carolina State Department of Environment, Health and Natural Resources Raleigh, NC Donna Leno Indian Health Service Rockville, MD Susan Lenox Goldman State of New Jersey Trenton, NJ Ann W. Lewin The National Learning Center Washington, DC Helen D. Lilly, Ph.D. U.S. Department of Agriculture Food and Nutrition Serivce Alexandria, VA Lauren Long Columbia, MD Thomas J. Long, Ph.D. Long and Associates Bethesda, MD John T. MacDonald, Ph.D. U.S. Department of Education Assistant Secretary of Education for Elementary and Secondary Education Washington, DC A-14 Parents Speak Out for America's Children Thomas C. MacMichael Comprehensive Health Investment Project (CHIP) Replication - Total Action Against Poverty (TAP) Roanoke, VA Edward Madigan Secretary of Agriculture Washington, DC Patricia Mail U.S. Public Health Service Rockville, MD Lani Smith Majer Anne Arundel County Health Department Annapolis, MD Pamela Mangu Georgetown University Washington, DC Howard Manly Deputy Commissioner of Public Health Washington, DC James Manning U.S. Department of Education Washington, DC Carolyn Marsh Arkansas Children’s Hospital Little Rock, AR Judy Martin East Kentucky Child Care Coalition Annville, KY José Martinez Puerto Rico Department of Health Puerto Rico Julian Martinez U.S. Department of Education Washington DC James O. Mason, M.D. Assistant Secretary for Health U.S. Department of Health and Human Services Washington, DC Jimmy Mason Office of the Surgeon General Washington, DC Debbie Massey U.S. Department of Agriculture Food and Nutrition Service McLean, VA Bijoy Mathew Association of Maternal and Child Health Programs Washington, DC Lisa Matras Office of the Surgeon General Washington, DC William P. Matson Commonwealth of the Northern Mariana Islands Public School System Saipan, MP Thurma McCann, M.D., M.P.H. Office of Healthy Start Rockville, MD Mark C. McClary National Association of WIC Directors Washington, DC Phyllis McClure National Association for the Advancement of Colored People Legal Defense and Educational Fund, Inc. Washington, DC Beverly McConnell Michigan Department of Public Health Detroit, MI Pat McCulla Children’s Hospice International Alexandria, VA Sandra J. McElhaney, M.A. National Mental Health Association Alexandria, VA Dr. Alice McGill U.S. Navy Personal Excellence Partnership Program Washington, DC Mary McGonigel Association for the Care of Children’s Health Bethesda, MD Dennis D. Mcllhenny Charles Webb Easter Seals Center Parent Association Mt. Pleasant, SC Patricia A. McKee, ED U.S. Department of Education Office of Elementary and Secondary Education Washington, DC Connie McLendon Texas Association for the Gifted and Talented Round Rock, TX Elizabeth McManis Barbara Bush Foundation for Family Literacy Washington, DC Michelle H. Metts Cabinet for Human Resources Frankfort, KY General Participants ee Angela D. Mickalide National SAFE KIDS Campaign Washington, DC Elizabeth Milder-Beh Pennsylvania Governor’s Office Harrisburg, PA Christine Miller U.S. Department of Education Washington, DC Howard T. Miller Glenn Dale Early Childhood Center Glendale, MD Robert C. Miller Todd County Schools Mission, SD June Million National Association of Elementary School Principals Alexandria, VA Claudette Mitchell, M.B.A. U.S. Public Health Service Rockville, MD Winnie Mitchell Office of the Surgeon General Washington, DC Evelyn Moch D.O.T. Day Care, Inc. Washington, DC William Modzeleski U.S. Department of Education Washington, DC Eileen L. Moe, CSW-ACP Texas Health Department Austin, TX Linda G. Morra U.S. General Accounting Office Washington, DC Report of the Surgeon General's Conference A-15 General Participants ee Claudia Morris Healthy Mothers, Healthy Babies Washington, DC José Munoz National Coalition of Hispanic Health and Human Services Organizations Washington, DC Martha Naismith Johnson & Johnson HMI Washington, DC Carol Nasworthy Texas Work and Family Clearinghouse Austin, TX Pam Navarro National Institutes of Health Germantown, MD Richard P. Nelson, M.D. Child Health Specialty Clinics Iowa City, IA Liz Newhouse Texas Respite Resource Network San Antonio, TX Mary Nichols Sigma Theta Tau Clifton, VA Erik Nielsen American Occupational Therapy Association Rockville, MD Lulu Mae Nix, Ed.D. National Institute for Integrated Family Services Camden, NJ Julie M. Novak Alabama Department of Public Health Montgomery, AL Jackie Noyes American Academy of Pediatrics Washington, DC Christine Nye Health Care Financing Administration Baltimore, MD Diane O’Conor Governor’s Office for Children, Youth, and Families Baltimore, MD Godfrey P. Oakley, Jr., M.D. Centers for Disease Control Atlanta, GA William Oliver PRIDE Parent Training Marietta, GA Sally Olsen Santa Rosa Children’s Hospital San Antonio, TX Walter A. Orenstein, M.D. Centers for Disease Control Atlanta, GA Belinda Ortega Ysleta Del Sur Pueblo El Paso, TX JoAnne Owens-Nauslar Nebraska Department of Education Lincoln, NE Miriam Padilla, M.D. Rockville, MD Deborah Parham Special Initiative, Policy and Evaluation Branch Rockville, MD A-16 Parents Speak Out for America's Children Barbara Park American Dental Association Chicago, IL Steven Parker, M.D. Boston City Hospital Boston, MA Sandra Parks-Trusz, Ph.D. Epilepsy Foundation of America Landover, MD John Patrick Passino U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA Lori Pastro U.S. Department of Health and Human Services Washington, DC Anne L. Pavlich, R.N. U.S, Consumer Product Safety Commission Bethesda, MD Robyn J. Payne Girl Scouts of the U.S.A. New York, NY Gloria Pereira Frederick County Head Start Frederick, MD Steve Permison, M.D. Indian Health Service Washington, DC Hilma M. Persson Woodbridge, VA Alwin K. Peterson Michigan Department of Public Health Lansing, MI Sharon L. Philip Alexandria City Health Department Alexandria, VA Patricia Phipps Institute for Child Care Professionals Houston, TX Patricia Place Natural Academy of Sciences Washington, DC Deborah Fells Pleasants Washington DC Public Schools Washington, DC Julia Plotnick, R.N.C., M.P.H. U.S. Public Health Service Rockville, MD Michele A. Plutro, Ed.D. Head Start Bureau Washington, DC Betty S. Poehlman National School Boards Association Alexandria, VA Susan Poisson, M.A. Reginald S. Lourie Center for Infants and Young Children of Maryland and Virginia Rockville, MD Florene Stewart Poyadue Parents Helping Parents San Jose, CA E, Ann Prendergast U.S. Public Health Service Rockville, MD Theressa Price, R.N. Jackson-Hinds Comprehensive Health Center Jackson, MS Daniel Puntillo, Jr. Middle Earth Somerville, NJ Kathryn F. Purnell South Carolina Department of Health and Environmental Control Columbia, SC James F. Quilty, Jr., M.D. Ohio Department of Health Columbus, OH Craig T. Ramey, Ph.D. University of Alabama- Birmingham Birmingham, AL Arnold D. Ramirez Phoenix Human Services Head Start Phoenix, AZ Maria Rapuano Alliance To End Childhood Lead Poisoning Washington, DC Karl A. Reis U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA Letitia Rennings, M.S. U.S. Department of Education Washington, DC Judith Ressallat National Association of School Nurses, Inc. Washington, DC Christopher Rigaux National Center for Education in Maternal and Child Health Washington, DC General Participants __ Suzanne Ripley National Information Center for Children and Youth with Disabilities McLean, VA Lourdes A. Rivera Children’s Defense Fund Washington, DC Latricia Robertson U.S. Public Health Service Rockville, MD Diana Robinson Center for Successful Child Development Chicago, IL Cindy Rojas Rodriguez Southwest Educational Development Laboratory Austin, TX Mark L. Rosenberg, M.D., M.P.P. Centers for Disease Control Atlanta, GA Judith Rosenburg, LCSW Support Group Training Project Berkeley, CA John P. Rossetti U.S. Public Health Service Rockville, MD Paula Russell Texas Health Department Austin, TX Jesus Saavedra, M.D. U.S. Public Health Service Washington, DC Patricia A. Salomon, M.D., C.M.O. U.S. Department of Health and Human Services Rockville, MD Report of the Surgeon General's Conference A-17 General Participants ee Helen Scheirbeck Head Start Bureau Washington, DC Diane Schilder U.S. General Accounting Office Washington, DC Elizabeth Schmidt Office of the Surgeon General Washington, DC George A. Schmidt, Ph.D. Florida State Interagency Office of Disability Prevention Tallahassee, FL William Sciarillo Maryland State Health Department Baltimore, MD Mary A. Scoblic, R.N., M.N. Michigan Department of Public Health Lansing, MI Elaine L. Scott Capitol Children’s Museum Washington, DC Maureen Seller National Center for Education in Maternal and Child Health Washington, DC Fadrienne Sessions Jackson Hines Comprehensive Health Center Jackson, MS Paula M. Sheahan National Center for Education in Maternal and Child Health Washington, DC Steven P. Shelov, M.D. Albert Einstein College of Medicine Bronx, NY Joy Shelton Delta College University Center, MI Bill Shepardson Council of Chief State School Officers Washington, DC Phyllis J. Siderits Institute for Child Health Policy Gainesville, FL Tom Slatton, Ph.D. Texas Department of Human Resources Amarillo, TX Elizabeth Sloan Elliot Health Systems/Elliot Hospital Manchester, NH Allen N. Smith Head Start Bureau Washington, DC Becky J. Smith, Ph.D. Association for the Advancement of Health Education Reston, VA Marnie Smith Peyser Associates Washington, DC Joanne Smogor Manchester School District Manchester, NH John A. Snowden Capitol Children’s Museum Washington, DC A-18 Parents Speak Out for America’s Children Carolyn Snyder U.S. Department of Education Washington, DC Sherrie Socha Governor’s Development Disability Council Omaha, NE Denise Sofka U.S. Public Health Service Rockville, MD Marian Sokol, Ph.D The Children’s Hospital Ambulatory Care Center San Antonio, TX Benita Somerfield Barbara Bush Foundation for Family Literacy New York, NY Lydia Soto-Torres, M.D., M.P.H. Office of the Surgeon General Washington, DC Georgeline Sparks Indian Health Service Rockville, MD Lynn Spector U.S. Public Health Service Rockville, MD Leslie Stablein Arlington County Department of Human Services Arlington, VA Irene Steibing Maryland Department of Human Resources Baltimore, MD Walter Steidle, Ph.D. U.S. Department of Education Washington, DC John Steindorf Wisconsin Winnebago Health Authority Mauston, WI Delores Stewart U.S. Department of Agriculture Food and Nutrition Service Trenton, NJ Dianne Stewart Center for Public Policy Priorities Austin, TX Joyce P. Stines Appalachian State University Boone, NC Rosalie Streett Parent Action Baltimore, MD Ann P. Streissguth, Ph.D. University of Washington School of Medicine Seattle, WA Nancy Striffler Georgetown University Child Development Center Washington, DC Phyllis Stubbs U.S. Public Health Service Rockville, MD Candace Sullivan National Association of State Boards of Education Alexandria, VA Louis Sullivan, M.D. Secretary of Health and Human Services Washington, DC Sherlie Svestka U.S. General Accounting Office Washington, DC Lisa M. Tate American Academy of Pediatrics Washington, DC Stephen B. Thacker, M.D., M.Sc. Centers for Disease Control Atlanta, GA Carolyn Thiel U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA Josie Thomas Association for the Care of Children’s Health Bethesda, MD Lucy A. Thompson District of Columbia General Hospital Washington, DC Claudia Thorne Greater Southeast Healthcare System Washington, DC Janet Tognetti U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA Geraldine Tompkins WIC State Agency Washington, DC Debra Jean Torrez Ysleta Del Sur Pueblo El Paso, TX Carol Treen Manchester School District Manchester, NH Lori Tremmel American Public Heaith Association Washington, DC General Participants es Elizabeth Tuckermanty U.S. Department of Agriculture Nutrition Extension Service Washington, DC Leticia Ubinas, M.D. U.S. Public Health Service Alexandria, VA Jenifer Van Deusen Maine Department of Education Augusta, ME Nancy Van Doren The Travelers Companies Foundation Hartford, CT Kaye Vander Ven "U.S. Public Health Service Alexandria, VA Karen VanLandeghem National School Health Education Coalition Washington, DC Peter K. Vaslow Institute for the Enhancement of Family Development Bethesda, MD Dr. Draga Vesselinovitch University of Chicago Chicago, IL Virginia View National Center for Clinical Infants Program Arlington, VA Amin Wahab Community Development Institute Lakewood, CO Report of the Surgeon General's Conference A-19 General Participants ee Elayne Walker National Association of Community Health Centers Washington, DC Mary C. Wallace U.S. Department of Health and Human Services Food and Drug Administration Rockville, MD Janet Wallinder Multnomah County Health Department Portland, OR Megan Walline Department of Justice Washington, DC Sharon Walsh Burke, VA Gailya P. Walter Centers for Disease Control Washington, DC Millie Waterman National Parent-Teacher Association Mentor, OH Mary Jo Waters Love, Inc. Holland, MI C. J. Wellington, M.D. Children with Special Health Care Needs Washington, DC Valerie Ahn Welsh U.S. Public Health Service Washington, DC Jerry West National Center for Educational Statistics Washington, DC Beth Wetherbee Delaware Division of Public Health Dover, DE Debra Whitford U.S. Department of Agriculture Food and Nutrition Service Alexandria, VA Clarissa Whittenberg National Institutes of Health Washington, DC Steve Wickizer, R.Ph. Office of the Surgeon General Washington, DC Lori Wicks Fox Health Policy Consultants, Inc. Washington, DC Sally Wilberding National Institute for Dental Research Bethesda, MD Barbara A. Willer, Ph.D. National Association for the Education of Young Children Washington, DC A. Kenton Williams, Ed.D. Head Start Bureau Washington, DC J. Terry Williams, R.D., M.P.H. Wyoming Department of Health Cheyenne, WY Kim Williams Arkansas Children’s Hospital Little Rock, AR Barbara Wells Willis U.S. Department of Agriculture Washington, DC A-20 Parents Speak Out for America’s Children Lorna Wilson, R.N., M.S.P.H. Missouri Department of Health Jefferson City, MO Modena E.H. Wilson, M.P.H., M.D. Johns Hopkins University Baltimore, MD Shirley I. Wilson Commission on Public Health Silver Spring, MD Susan Winingar U.S. Department of Education Washington, DC Mildred M. Winter, M.Ed. Parents as Teachers National Center St. Louis, MO Bonnie Wise United Planning Organization Washington, DC Frances O. Witt Maryland State Department of Education Baltimore, MD Kelly Woods JMH Communications New York, NY Beverly Wright U.S. Public Health Service Rockville, MD Sharon E. Yandian Head Start Bureau Washington, DC Dorothy M. Yonemitsu San Diego Imperial Developmental Services, Inc. and the Union of Pan Asian Communities San Diego, CA Lenore Zedosky West Virginia Department of Education Charleston, WV Edward Zigler, Ph.D. Yale University New Haven, CT General Participants a Report of the Surgeon General's Conference A-21 gq xipueddy Advisory Group Advisory Group The Surgeon General's Conference xtealthy CHildvtn The Critical Role of Parents Washington, DC February 9-12, 1992 B-2 Parents Speak Out for America's Children William R. Archer III, M.D. Deputy Assistant Secretary for Population Affairs U.S. Department of Health and Human Services Hubert H. Humphrey Building Room 736E 200 Independence Avenue, SW Washington, DC 20201 Jane Baird Deputy Assistant Secretary for Planning and Evaluation U.S. Department of Health and Human Services Hubert H. Humphrey Building Room 410E 200 Independence Avenue, SW Washington, DC 20201 Daniel Bonner Deputy Assistant Secretary for Elementary and Secondary Education U.S. Department of Education Room 2181, FOB 6, Mailstop 6100 400 Maryland Avenue, SW Washington, DC 20202 Richard Chambers Director, Intergovernmental Affairs Office Health Care Financing Administration U.S. Department of Health and Human Services Hubert H. Humphrey Building Room 410B 200 Independence Avenue, SW Washington, DC 20201 Chris DeGraw, M.D., M.P.H. Coordinator for the Children and Schools Program Office of Disease Prevention and Health Promotion U.S. Public Health Service U.S. Department of Health and Human Services Switzer Building, Room 2132 330 C Street, SW Washington, DC 20201 Marilyn H. Gaston, M.D. Director, Bureau of Health Care Delivery and Assistance U.S. Public Health Service U.S. Department of Health and Human Services Parklawn Building, Room 7-05 5600 Fishers Lane Rockville, MD 20857 Alan Hinman, M.D., M.P.H. Director, Center for Prevention Services Centers for Disease Control U.S. Public Health Service U.S. Department of Health and Human Services 1600 Clifton Road, Mail Stop E07 Atlanta, GA 30333 Wade Horn, Ph.D. Commissioner, Administration for Children, Youth and Families Administration for Children and Families U.S. Department of Health and Human Services Switzer Building, Room 2026 330 C Street, SW Washington, DC 20201 Vince L. Hutchins, Ph.D. Acting Director, Maternal and Child Health Bureau Health Resources and Services Administration U.S. Public Health Service U.S. Department of Health and Human Services Parklawn Building, Room 9-03 5600 Fishers Lane Rockville, MD 20857 Elaine Johnson, Ph.D. Director, Office for Substance Abuse Prevention Alcohol, Drug Abuse and Mental Health Administration Rockwall II, Room 9D-10 5600 Fishers Lane Rockville, MD 20857 Paul Johnson, Ph.D. Office of Health Planning and Evaluation Office of the Assistant Secretary for Health U.S. Public Health Service U.S. Department of Health and Human Services Hubert H. Humphrey Building Room 740G 200 Independence Avenue, SW Washington, DC 20201 Hanns Kuttner Associate Director for Health and Social Services Policy Old Executive Office Building, Room 219 Washington, DC 20500 John T. MacDonald, Ph.D. Assistant Secretary for Elementary and Secondary Education U.S. Department of Education 400 Maryland Avenue, SW Room 2189 Washington, DC 20202 Rae Nelson Deputy Associate Director for Education and Drug Policy Old Executive Office Building, Room 218 Washington, DC 20500 Jeffrey Rosenburg Special Assistant to the Commissioner Administration on Children, Youth, and Families Administration for Children and Families Hubert H. Humphrey Building 200 Independence Avenue, SW Washington, DC 20201 David Rostetter Coordinator, School Readiness Initiative Office of the Assistant Secretary for Planning and Evaluation U.S. Department of Health and Human Services Hubert H. Humphrey Building Room 415F 200 Independence Avenue, SW Washington, DC 20201 Stephen J. Sepe, Ph.D., M.P.H. National Vaccine Program Coordinator Division of Immunization National Center for Prevention Services Centers for Disease Control U.S. Department of Health and Human Services 1600 Clifton Road, Mail Stop E-07 Atlanta, GA 30333 Carolyn Snyder Confidential Assistant to the Assistant Secretary for Elementary and Secondary Education U.S. Department of Education Room 2181, FOB 6, Mailstop 6100 400 Maryland Avenue, SW Washington, DC 20202 Report of the Surgeon General's Conference B-3 W. Craig Vanderwagen, M.D. Acting Associate Director, Office of Health Programs Indian Health Service U.S. Public Health Service U.S. Department of Health and Human Services Parklawn Building, Room 6A-55 5600 Fishers Lane Rockville, MD 20857 Ronald J. Vogel Director, Supplemental Food Programs Food and Nutrition Service U.S. Department of Agriculture 3101 Park Center Drive, Room 1017 Alexandria, VA 22302 Gailya Walters Program Officer Office on Smoking and Health U.S. Department of Health and Human Services Switzer Building, Room 1229 330 C Street, SW Washington, DC 20201 Valerie Ahn Welsh Office of Health Planning and Evaluation U.S. Department of Health and Human Services Hubert H. Humphrey Building Room 740G 200 Independence Avenue, SW Washington, DC 20201 Paul Wise, M.D., M.P.H. Maternal and Child Care Health Expert Joint Program in Neonatality 221 Longwood Avenue, 5th Floor Boston, MA 02115 Sumner Yaffe, M.D. Director, Center for Research for Mothers and Children National Institute for Child Health and Human Development National Institutes of Health U.S. Public Health Service U.S. Department of Health and Human Services Executive Plaza North, Room 643 9000 Rockville Pike Bethesda, MD 20892 B-4 Parents Speak Out for America’s Children Office of the Surgeon General US. Public Health Service U.S. Department of Health and Human Services Hubert H. Humphrey Building 200 Independence Avenue, SW Washington, DC 20201 M. Ann Drum, D.D.S., M.P.H. Special Assistant for Program Activities M.J. Fingland Director of Public Affairs Margaret Garikes Executive Assistant Louise Hunt, R.N., B.S.N. Assistant to the Chief of Staff Rice C. Leach, M.D. Chief of Staff Lisa Matras Special Assistant Winnie Mitchell Policy Coordinator for AIDS and Underage Drinking Elizabeth Schmidt Director of Communications Lydia Soto-Torres, M.D., M.P.H. Policy Coordinator for Women’s Health Planning Committee Appendix C : Planning Committee The Surgeon General's Conference MeAlthy Cris viN The Critical Role of Parents Washington, DC February 9-12, 1992 Robin Brocato, M.H.S. Health Specialist Head Start Bureau U.S. Department of Health and Human Services P.O. Box 1182 Washington, DC 20513 Chris DeGraw, M.D., M.P.H. Coordinator of Children and Schools Program Office of Disease Prevention and Health Promotion Office of the Assistant Secretary of Health U.S. Department of Health and Human Services 2132 Switzer Building 330 C Street, SW Washington, DC 20201 C-2 Parents Speak Out for America's Children Diana Denboba Public Health Analyst Habilitative Services Branch Maternal and Child Health Bureau U.S. Public Health Service U.S. Department of Health and Human Services Parklawn Building, Room 18A-18 5600 Fishers Lane Rockville, MD 20857 M. Ann Drum, D.D.S., M.P.H. Special Assistant for Program Activities Office of the Surgeon General U.S. Public Health Service U.S. Department of Health and Human Services Hubert H. Humphrey Building Room 718E 200 Independence Avenue, SW Washington, DC 20201 Robert G. Froehlke, M.D. Special Assistant to the Surgeon General Office of the Surgeon General U.S. Public Health Service U.S. Department of Health and Human Services Hubert H. Humphrey Building Room 718E 200 Independence Avenue, SW Washington, DC 20201 Louise Hunt, R.N., B.S.N. Assistant to the Chief of Staff Office of the Surgeon General U.S. Public Health Service U.S. Department of Health and Human Services Parklawn Building, Room 18-67 5600 Fishers Lane Rockville, MD 20857 Linda Jupin Food Program Specialist Food and Nutrition Service U.S. Department of Agriculture 3101 Park Center Drive, Room 540 Alexandria, VA 22302 Marta Kealy Food Program Specialist Food and Nutrition Service U.S. Department of Agriculture 3101 Park Center Drive, Room 540 Alexandria, VA 22302 Miriam A. Kelly, Ph.D. Project Officer Center for Medical Effectiveness Research Agency for Health Care Policy and Research U.S. Public Health Service U.S. Department of Health and Human Services 6001 Montrose Road, Suite 704 Rockville, MD 20852 Dushanka V. Kleinman, D.D.S., M.Sc.D. Deputy Director National Institute of Dental Research National Institutes of Health U.S. Public Health Service U.S. Department of Health and Human Services Building 31, Room 2C39 9000 Rockville Pike Bethesda, MD 20892 Jean Klinge Special Assistant to the Director of Compensatory Education Programs U.S. Department of Education 400 Maryland Avenue, SW, Room 2043 Washington, DC 20202 Rice C. Leach, M.D. Chief of Staff Office of the Surgeon General U.S. Public Health Service U.S. Department of Health and Human Services Parklawn Building, Room 18-67 5600 Fishers Lane Rockville, MD 20857 Patricia Mail Public Health Analyst Faculty Development Program National Institute on Alcohol Abuse and Alcoholism U.S. Public Health Service U.S. Department of Health and Human Services Parklawn Building, Room 14C-20 5600 Fishers Lane Rockville, MD 20857 Pamela B. Mangu, M.A. Early Childhood Specialist National Center for Education and Maternal and Child Health Georgetown University 38th and R Streets, NW Washington, DC 20057 Lisa Matras Special Assistant Office of Surgeon General U.S. Department of Health and Human Services Hubert H. Humphrey Building Room 718E 200 Independence Ave., SW Washington, DC 20201 Julia Plotnick, R.N.C., M.P.H. Chief Nurse U.S. Public Health Service Maternal and Child Health Bureau U.S. Department of Health and Human Services Parklawn Building, Room 18A-19 5600 Fishers Lane Rockville, MD 20857 Carolyn Snyder Confidential Assistant to the Assistant Secretary for Elementary and Secondary Education U.S. Department of Education 400 Maryland Avenue, SW FOB 6, Room 2189 Washington, DC 20202 Josie Thomas Family Networking Coordinator Association for the Care of Children’s Health 7910 Woodmont Avenue, Suite 300 Bethesda, MD 20814 Valerie Ahn Welsh Senior Program Analyst Office of Health Planning and Evaluation U.S. Public Health Service U.S. Department of Health and Human Services Hubert H. Humphrey Building Room 740G 200 Independence Avenue, SW Washington, DC 20201 Report of the Surgeon General's Conference Cc-3 Agenda at a Glance Monday, February 10 (continued) 2:00 - 6:00 Registration (Registration 8:00 - 5:30 each 3:00 - 4:00 State Parent Delegate Regional Meetings 5:00 - 7:00 Surgeon General's 9:30 - 10:40 Concurrent Panel Sessions Panel 2A—Healthy Children Ready to Learn: What Are the Roles of Parents, Educators, Health Professionals, and the Community? Panel 2B—Special Issues that Impact Children and Families: Substance Abuse, HIV, and day of the Reception Honoring America's Violence Conference) Families 10:45 - 1:15 10:45 - 12:00 Parent Concurrent Panel Sessions Work Panel 1A—Early Childhood Issues Monday, February 10 Groups oan School Readiness. and Hea Panel 18—Helping Families Get Services: Some New Approaches Lunch During 8:00 - 9:00 Opening Ceremonies Work Group Joint Service Color Guard and Singers West 12:00 - 1:15 Luncheon Speaker Dr. WilieEpps Invocation Reverend Jeffrey Jerimah Pastor of Fourth Presbyterian Church Bethesda, Maryland Welcome Dr. Louis W. Sullivan Secretary of Health and Human Services 1:20 - 1:50 Security Check for President's Keynote Address 2:00 - 2:30 Keynote Address George H. Bush President of the United States of America Charge to Participants Dr. Antonia C. Novello Surgeon General | I 2:30 Break 4:00 - 5:00 Workshops 1-14 | 2:30 - 5:30 Exhibits Open 9:00 - 9:30 Break Everyone State Parent Delegates General Participants D-2 Parents Speak Out for America's Children Tuesday, February 11 Wednesday, February 12. -— 8:30 - 9:00 Keynote Speech Edward Madigan Secretary of Agriculture 8:30 - 9:00 Keynote Speech Lamar Alexander Secretary of Education 9:00 - 9:15 Break Parent Work Groups Work Group 9:15 - 12:15| | 9:3 Lunch During y un 9:00 - 9:10 Speech Roger B. Porter Assistant to the President for Economic and Domestic Policy 9:10 - 10:30 Findings of Parent Work Groups 10:30 - 11:45 Responder Panel 11:45 - 12:15 Meeting Summary Dr. Antonia C. Novello Surgeon General 12:30 - 3:30 Parent Work Groups 12:30- 2:00 Lunch 2:00 - 3:30. S : Concurrent Panel Sessions Panel 5A—Child Care: Two Perspectives - oo oo Panel 5B—Healthy Start, Head Start, Even Start and WIC: Integrating Health Education and Social Service Programs 3:30 Break 3:30 - 5:30 Exhibits Open 4:00 - 5:00 Workshops 15-28 Drug-Free Children: Parents Speak Out! Monday, February 10 @ Tuesday, February 11 4:00 - 5:00 We invite the parents to attend an open forum to share your views on a variety of topics related to raising drug- free children. A panel of representatives from the Department of Education and the Deparument of Health and Human Services will be present to hear your comments and answer questions about topics such as: / What do children from birth to age seven need to know about drug prevention? / How does drug use affect the lives of young children? ¥ How can parents prepare children to lead drug-free lives? ¥ How can schools and communities help? & What preschool and early elementary programs include drug prevention? / How important are drug education curricula for preschool and early elementary school children? Report of the Surgeon General's Conference D-3 4 xipusddy Facilitators and Recorders aH hec hele) The Surgeon General's Conference tealthy CHiddve The Critical Role of Parents Washington, DC February 9-12, 1992 E-2 Parents Speak Out for America's Children Robert E. Alexander Migrant Education U.S. Department of Education 400 Maryland Avenue, SW FOB 6, Room 2025 Washington, DC 20202 Robert W. Amler, M.D., M.S. Agency for Toxic Substances and Disease Registry Centers for Disease Control U.S. Public Health Service U.S. Department of Health and Human Services 1600 Clifton Road, NE Mailstop E31 Atlanta, GA 30333 Sandy Bastone Office of Analysis and Education Food and Nutrition Service U.S. Department of Agriculture 3101 Park Center Drive, Room 214 Alexandria, VA 22302 Virginia Berg Migrant Education U.S. Department of Education 400 Maryland Avenue, SW FOB 6, Room 2025 Washington, DC 20202 Sylvia Carter Head Start, Region 3, Resource Center University of Maryland University College University Boulevard at Aldephi Road College Park, MD 20742 Larry Edelman Project Coordinator, The Kennedy Institute Project Copernicus Department of Family Support Services 2911 E. Biddle Street Baltimore, MD 21213 Sam Finz Walcoff & Associates 635 Slaters Lane, Suite 400 Alexandria, VA 22314 Kay Ghahremani Supplemental Food Programs Division Food and Nutrition Service U.S. Department of Agriculture 3101 Park Center Drive, Room 530 Alexandria, VA 22302 Frankie Gibson Head Start Bureau P.O. Box 1182 Washington, DC 20013 Donna Hines Supplemental Food Programs Division Food and Nutrition Service U.S. Department of Agriculture 3101 Park Center Drive, Room 540 Alexandria, VA 22302 Roger Iron Cloud Head Start Bureau P.O. Box 1182 Washington, DC 20013 Arlene Kiely Association for the Care of Children’s Health National Center for Family-Centered Care 7910 Woodmont Avenue, Suite 300 Bethesda, MD 20814 Jean Klinge U.S. Department of Education FOB 6, Room 2043 400 Maryland Avenue, SW Washington, DC 20202 Donna Leno Indian Health Service Health Education Section Parklawn Building, Room 6A-20 Rockville, MD 20857 Andrea Wargo, Ph.D. USS. Public Health Service Hubert H. Humphrey Building Room 727E 200 Independence Avenue, SW Washington, DC 20201 Recorders Juliane Becket University of Iowa 4555 Westchester Drive, NE Cedar Rapids, IA 52402 Heather Block Child Nutrition Service U.S. Department of Agriculture 3101 Park Center Drive, Room 1007 Food Program Specialist Alexandria, VA 22302 Adrienne Brigmon Head Start Bureau P.O. Box 1182 Washington, DC 20013 Sandra Carton Head Start Bureau P.O. Box 1182 Washington, DC 20013 Donna Rae Castillo National Resources and Services Administration Training Program Division of Education, Evaluation, and Demonstration U.S. Public Health Service U.S. Department of Health and Human Services Parklawn Building, Room 18A-10 Rockville, MD 20857 Tony Fowler U.S. Department of Education FOB 6, Room 2155 Washington, DC 20202 Linda Jupin Supplemental Food Programs Division Food and Nutrition Service U.S. Department of Agriculture 3101] Park Center Drive, Room 540 Alexandria, VA 22302 Report of the Surgeon General's Conference E-3 Marta Kealey Supplemental Food Programs Division Food and Nutrition Service U.S. Department of Agriculture 3101 Park Center Drive, Room 540 Alexandria, VA 22302 Randy Kingsley U.S. Department of Education 400 Maryland Avenue, SW FOB 6, Room 2030 Washington, DC 20202 Patricia D. Mail National Institute on Alcohol Abuse and Alcoholism Faculty Development Program Parklawn Building, Room 14C-20 5600 Fishers Lane Rockville, MD 20857 Mary McGonigel Associate Director, Association for the Care of Children’s Health National Center for Family-Centered Care 7910 Woodmont Avenue, Suite 300 Bethesda, MD 20814 Latricia Robertson U.S. Public Health Service U.S. Department of Health and Human Services Parklawn Building, Room 18A-55 5600 Fishers Lane Rockville, MD 20857 Helen Scheirbeck Head Start Bureau P.O. Box 1182 Washington, DC 20013 Susan Wininger U.S. Department of Education 400 Maryland Avenue, SW FOB 6, Room 2033 Washington, DC 20202 Sharon E. Yandian Head Start Bureau P.O. Box 1182 Washington, DC 20013 E-4 Parents Speak Out for America's Children ps = Worksho pendix F Workshops The Surgeon General’s Conference The Critical Role of Parents Washington, DC February 9-12, 1992 F-2 Parents Speak Out for America's Children Workshop 1 Eight Fatal Parent Paradigms and What You Can Do About Them Bill Oliver Executive Director PRIDE Parent Training Drugs are not new. However, parents’ perspectives now about drugs are new. This workshop explored eight parental viewpoints that lead to adolescent involvement with the drug culture and described a model that can be used to shift these viewpoints. Workshop 2 Caring for Your Infant and Young Child, AAP Publication Steven P. Shelov, M.D. Professor and Vice Chairman Albert Einstein College of Medicine Montefiore Medical Center With the AAP’s childcare book as an example, this workshop demonstrated to parents how to use the childcare information found in a parent guide to pro- mote the health and well-being of their children. Workshop 3 Department of Education Resource Room The Education Resource Room allowed Conference participants to obtain more information on relevant programs administered by the U.S. Department of Education. Printed materials were available, and prv- gram officers were on hand to explain how each pr gram works, how to apply for funding, and other imper- tant information: Workshop 4 Migrant Education: Integration of Services Patrick F. Hogan Education Program Specialist Office of Migrant Education U.S. Department of Education This workshop shared information about the Office of Migrant Education’s coordination efforts among vari- ous programs and with other identified agencies that offer services to the Migrant population. Workshop 5 An Introduction to the Head Start-Public School Transition Demonstration: The Importance of Parents Michele Ann Plutro, Ed.D. Education Specialist Head Start Bureau The workshop briefly outlined the Head Start transition demonstration and the key components required for its implementation in 1992, 1993, and 1994. The involve- ment of parents and families within the transition project was discussed. Workshop 6 Head Start Initiatives for Parents: The National Parent and Chiid Centers’ Program and the Comprehensive Child Development Program Richard H. Johnson Chief, Social Services, Parent Involvement, Parent- Child Centers’ Branch Head Start Bureau Allen N. Smith Special Assistant, Associate Commissioner Head Start Bureau This workshop presented two national special demon- stration programs that are administered by the Head Start Bureau and focused on providing services to income-eligible families with children younger than Head Start age. Both programs emphasize approaches and strategies that support the role of parents. Workshop 7 Preventing Injuries to Children: What, Why, and How Modena E. H. Wilson, M.D., M.P.H. Associate Professor of Pediatrics Johns Hopkins University In this workshop, the most important causes of injury in early childhood were outlined. High risk groups were identified, and developmental issues were discussed. Prevention strategies and their implementation were presented. Supporting materials were provided. Workshop 8 Public Health Issues in Child Daycare Stephen B. Thacker, M.D., M.Sc. Director Epidemiology Program Office Centers for Disease Control This workshop focused on the public health issues related to children in daycare. Issues included the prevention of infectious diseases and injuries, the po- tential benefits of child daycare (especially with regard to child development), issues regarding children with special needs, and occupational health issues. Report of the Surgeon General's Conference F-3 Workshop 9 Violence in Childhood: Where Does It Come From and What Can We Do About It? Mark L. Rosenberg, M.D., M.P.P. Director, Division of Injury Control National Center for Environmental Health and Injury Control Centers for Disease Control This workshop examined the problem of violence in America and focused on (1) the magnitude of the prob- lem, (2) the impact of violence on children, (3) the pub- lic health approach to violence prevention, and (4) potential interventions and strategies for prevention. Workshop 10 Immunization Coalitions: Mobilizing Communities to Increase Access to Care Deborah Clark National Field Director National Immunization Campaign _ This workshop related the experiences of the National Immunization Campaign that united the efforts of more than 25 national organizations and 75 community-based coalitions to demonstrate ways that diverse coalitions can broaden public access immunization and other primary care services. Workshop 11 Parent Action: Finally! An Organization for ALL Parents Rosalie Streett, M.S. Executive Director Parent Action This workshop focused on why Parent Action, the only national membership organization for all parents, was established, what its goals are, what it does, and how F-4 Parents Speak Out for America's Children parents can get involved. Discussions centered on family: issues and ways to help parents empower themselves to support our country’s goal of strong, nurturing families, Workshop 12 Enhancing Readiness to Learn: Mental Health and Social Competence in Early Childhood Sandra J. McElhaney, M.A. Director of Prevention National Mental Health Association Maurice J. Elias, Ph.D. Associate Professor of Psychology Rutgers University The National Mental Health Association has long recognized the role of social competence in enhancing children’s readiness to learn and to prepare for their roles as productive citizens. This workshop reviewed National Mental Health Association effortsin thisareaand outlined the best practices in early childhood programs. Workshop 13 New Information for Parents about Nutrition for Young Children Helen D. Lilly, Ph.D. Food and Nutrition Service U.S. Department of Agriculture This workshop addressed what parents need to know about good mealtime experiences for the toddler and how to implement the new U.S. Dietary Guidelines in the diets of children older than two. Workshop 14 Health Care for Children Living in Poverty Charles P. LaVallee Executive Director Western Pennsylvania Caring Foundation, Inc. Caring Program for Children The Caring Program for Children provides free pri- mary health care coverage to children who live in poverty but are ineligible for Medicaid. The workshop examined the impact of this innovative public-private partnership, which is now operational in 15 States. The Caring Program’s new initiative, care coordination for children with special health care needs, was also pre- sented. Plans for national replication were highlighted. Workshop 15 Our Children Are Dying—What Are You Gonna Do? Beverly Coleman-Miller, M.D. President The BCM Group, Inc. This interactive workshop offered parents and others ways to control an apparently uncontrollable prob- lem—violence and its impact on our children. Specific, proven initiatives were presented, along with the newest ideas from the leaders in the field. The roles of the community and the schools were discussed. Workshop 16 Improving Access to Care: Peer Support Groups for Low-Income Pregnant Women and New Parents Judith Rosenberg, L.C.S.W. Director Support Group Training Project Both service providers and policymakers now acknowl- edge the need to address nonmedical social and psycho- logical barriers that block access to care and preclude improvement in the health of low-income populations and promotion of positive health practices. The Sup- port Group Training Project organizes and facilitates peer support groups that are an effective way of deliver- ing health education to low-income and minority preg- nant women and new mothers. Workshop 17 Poverty, Illness, and Child Development: A Pediatrician’s Perspective Steven Parker, M.D. Director, Developmental Assessment Clinic Boston City Hospital This workshop focused on the double jeopardy of children growing up in poverty: (1) the increased risks for exposure to medical illnesses, substance abuse, and family disorganization and (2) the deleterious effects of these risks on children’s ability to learn. Strategies about how to meet these children’s needs were dis- cussed. Workshop 18 U.S. Department of Education Resource Room The Education Resource Room was available for Con- ference participants to obtain more information on relevant programs that are administered by the Depart- ment of Education. Printed materials were available, and program officers were on hand to explain howeach program works, how to apply for funding, and other important information. Report of the Surgeon General's Conference F-5 Workshop 19 Parent/School Partnerships: A Chapter I Strategy for Improving Student Achievement Diane D’Angelo Research Associate RMC Research Corporation Chapter I programs have long advocated the involve- ment of parents in their children’s education. This workshop provided participants with an overview of Chapter I programs, requirements for parent involve- ment, strategies to involve parents, and suggestions for home-based activities parents can use to support their children’s education. Workshop 20 “As |Am”: An Early Childhood Mental Health Curriculum Kirsten Hansen, M.Ed. Director, Head Start Mental Health Project Georgetown University Child Development Center Promoting good mental health practices is important for all children. This workshop introduced the con- cepts of mental health, related methods of incorporat- ing the curriculum into daily life, and presented lesson plans. Workshop 21 Preventable Developmental Disabilities Godfrey Oakley, M.D. Division of Birth Defects and Developmental Disabilities Centers for Disease Control This workshop focused on major opportunities to pre- vent poverty-associated disabilities including mental retardation, spina bifida, and fetal alcohol syndrome. F-6 Parents Speak Out for America's Children Workshop 22 Childhood Lead Poisoning Prevention in the 1990s Susan Binder, M.D. Chief, Lead Poisoning Prevention Branch Centers for Disease Control This workshop focused on the Centers for Disease Control statement Preventing Lead Poisoning in Young Children. It presented simple ways to reduce lead exposure, and the shift to primary prevention of lead poisoning was discussed. The workshop also examined the roles of the following groups in preventing lead poisoning: Federal, State, and local agencies; legislative bodies; advocacy groups; private foundations; and indi- viduals. Workshop 23 Bright Smiles, Bright Futures: A Mutticultural Approach to Oral Health Education Alice M. Horowitz, M.A. (Moderator) National Institute of Dental Research National Institutes of Health Marsha E. Butler, D.D.S. Colgate-Palmolive Company Robert S. Gold, Dr.P.H., Ph.D. University of Maryland Janice M. Hamilton, M.S. JMH Communications Through a partnership with national Head Start and the University of Maryland, Colgate has developed a multicultural oral health education curriculum with interactive activities and support materials for pre- school and first grade children. Its specific aims are to (1) improve children’s oral health knowledge. (2) improve children’s attitudes toward preventive oral health care, (3) positively influence children’s oral health behavior, and (4) encourage family involve- ment in children’s oral health. Workshop 24 Parents as Teachers: Ensuring Good Beginnings for Children Mildred M. Winter, M.Ed. Executive Director Parents as Teachers National Center This workshop centered on parents’ role as the first and most influential teachers of their children and on a home-school partnership that supports parents of chil- dren from birth to age three in this role. Results from evaluations of the program’s effectiveness were pre- sented. Adaptations for teen parents, the childcare center, the workplace, and other program settings were described. Workshop 25 Feeding Hungry Children Barbara Hallman Chief, Policy Branch, WIC Division Food and Nutrition Service U.S. Department of Agriculture This workshop provided a description of the range and scope of food assistance programs available to Ameri- cans, with special focus on those serving very young (preschool) children. Workshop 26 Tackling Children’s Health in an Urban Center: One Corporation's Model Initiative Nancy Van Doren President The Travelers Companies Foundation This workshop detailed the involvement of The Travel- ers in community-wide efforts to improve children’s health in Hartford, Connecticut. The model focuses on collaboration and coordination of community resources and services. This model may be replicable in other communities. Workshop 27 National SAFE KIDS Campaign—Preventing the Number One Killer of Kids: Childhood Injury Herta B. Feely, B.A. Executive Director National SAFE KIDS Campaign Childhood injury is the leading threat to the health of America’s children. The National SAFE KIDS Cam- paign illustrates how community-based childhood in- jury prevention activities (in the areas of traffic injury, burns, falls, poisonings, chokings, and drownings) can be effective in reducing this threat. The workshop informed participants about the Campaign’s resources and how to become involved in local SAFE KIDS initia- tives such as Project GET ALARMED, SAFE KIDS BUCKLE UP, and the SAFE KIDS Bicycle Helmet Campaign. Workshop 28 Capacity Building Through Early Intervention Connie Garner, RNC, MSN, Ed.S. Senior Program and Policy Specialist Office of Special Education Programs U.S. Department of Education This workshop examined strategies for capacity-building for families with children with disabilities using the Part H conceptual framework. Links between health and education served as a fundamental building block of this discussion. Report of the Surgeon General's Conference F-7 = Exhibits pendix G ST 20 dnt i 600 Pennsylvania Avenue, SE Suite 100 Washington, DC 20003 The Surgeon General's Conference America 2000 400 Maryland Avenue, SW eALHhY CHide vihy Washington, DC 20202 wy American Academy of Pediatric Dentistry 211 East Chicago Avenue, #1036 Chicago, IL 60611 American Academy of Pediatrics 141 Northwest Point Blvd. P.O. Box 927 Elk Grove Village, IL 60009-0927 American Dental Association 211 E. Chicago Avenue -~- 7 ~- Chicago, IL 60611-2678 American Red Cross The Critical Role of 431] 18th Street Parents Washington, DC 20006 Washingto n, DC American School Food Service Association 1600 Duke Street, 7th Floor February 9-12, 1992 Alexandria, VA 22314 Arkansas Department of Health 4815 West Markham Street Slot 17 Little Rock, AR 72205-3867 Association for the Care of Children’s Health 7910 Woodmont Avenue, Suite 300 Bethesda, MD 20814 Barbara Bush Foundation for Family Literacy c/o Simon Schuster 15 Columbus Circle, 34th Floor New York, NY 10023 Centers for Disease Control 1500 Clifton Road Atlanta, GA 30333 Child Care Action Campaign 330 7th Avenue, 17th Floor New York, NY 10001 G-2 Parents Speak Out for America's Children Children’s Hospice International Maryland Department of Health and Mental Hygiene 901 North Washington Street, #700 201 W. Preston Street Alexandria, VA 22314 Baltimore, MD 21201 Department of Agriculture MELD (formerly Minnesota Early Learning Design) Supplemental Food Programs Division 123 North Third Street Suite 507 3101 Park Center Drive, Room 540 Minneapolis, MN 55401 Alexandria, VA 22302 National Information Center for Children and Youth Elliot Health Systems/Elliot Hospital with Disabilities 80 Tarrytown Road 7926 Jones Branch Drive, Suite 1100 Manchester, NH 03103 McLean, VA 22102 Florida HRS State Health Office National Association of Community Health Centers, Inc. 1317 Winewood Boulevard 1330 New Hampshire Avenue, NW Tallahassee, FL 32399-0700 Washington, DC 20036 Health Care Financing Administration National Association of Elementary School Principals 200 Independence Avenue, SW 1615 Duke Street Washington, DC 20201 Alexandria, VA 22314 JMH Communications National Association of WIC Directors c/o Coigate-Palmolive Company P.O. Box 53405 300 Park Avenue Washington, DC 20009-3405 New York, NY 10011 National Center for Clinical Infants Program Kids Adjusting Through Support, Inc. 2000 14th Street, North 600 East Avenue Suite 380 Rochester, NY 14607 Arlington, VA 22201-2500 STATION OFF THEBRESPITE SANTA CHILDREN'S ath Report of the Surgeon General's Conference G-3 National Center for Education in Maternal & Child Health 38th & R Streets, NW Washington, DC 20057 National Head Start Association 201 N. Union Street, Suite 320 Alexandria, VA 22314 National Health Education Consortium Switzer Building, Room 2014 330 C Street, SW Washington, DC 20201 National Institute for Dental Research 9000 Rockville Pike Building 31, Room 2C35 Bethesda, MD 20892 National Mental Health Association 1021 Prince Street Alexandria, VA 223142971 G-4 Parents Speak Out for America's Children National SAFE KIDS Campaign 111 Michigan Avenue, NW Washington, DC 20010 National Urban League 500 East 62nd Street New York, NY 10021 Pathfinder Resources, Inc. 2324 University Avenue West Suite 105 St. Paul, MN 55114 Reginald S. Lourie Center for Infants and Young Children of Maryland and Virginia 11710 Hunters Lane Rockville, MD 20852 South Carolina Governor’s Office 1205 Pendleton Street Columbia, SC 29201 State of New Jersey CN 364 Trenton, NJ 08625-0364 Texas Office of the Governor Capitol Station P.O. Box 12428 Austin, TX 78711 Texas Respite Resource Network Santa Rosa Children’s Hospital P.O. Box 7330 San Antonio, TX 78207-3198 The Home and School Institute 1201 16th Street, NW Washington, DC 20036 United Way of America 701 N. Fairfax Street Alexandria, VA 22314 University of Vermont Department of Social Work Burlington, VT 05405 U.S. Naval Reserve-Campaign Drug Free America P.O. Box 44 Marblehead, MA 01945 = Entertamment pendix H Entertainment The Surgeon General’s Conference stealthy CHilart e extend our thanks to the individuals and groups who provided entertainment during the Conference sessions and breaks, The performances reminded us, in many cases, of our country’s varied cultural heritage. More importantly, the spark and vitality displayed by the children underscored the importance of the Healthy Children Ready To Learn Initiative and inspired us to work diligently to achieve our goal. Thank you to all who entertained and inspired us. Gedo C Aggy Antonia C. Novello, M.D., M.P.H. Surgeon General Arlington County Head Start Children Singers Arlington Community Action Program Arlington, VA The Critical Role of Parents Cathi Brown, Comedienne Washington, DC Washington, DC February 9-12, 1992 The Chicitas Langley Park/McCormick Elementary School Hyattsville, MD The Fabulous Flying Fingers (chorus) Barnsley Elementary School Rockville, MD Glenallan Chorus Glenallan Elementary School Silver Spring, MD Joint Service Color Guard Washington, DC Kids on the Block Columbia, MD H-2 Parents Speak Out for America's Children Keith Norris, Magician Bowie, MD North Springfield Handbell Ringers North Springfield Elementary School Springfield, VA Rapping Cheerleaders The Amidon School Washington, DC Singers West West Potomac High School Alexandria, VA Town & Country Singers and Ringers The Newport School Kensington, MD Young Traditional Indian Singers and Dancers Indian Health Service Baltimore-Washington Area Report of the Surgeon General's Conference H-3