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