Issue Brief February 2015 Could a California-Specific Website Ease Transition to Adult Care? by Edward Schor, MD, Lucile Packard Foundation for Children’s Health and Gabby Mujal Introduction shifts from their parents to themselves. In addition, adult medical specialists may not be Moving from pediatric to adult health care familiar with chronic conditions of pediatric during adolescence is ordinarily a simple and onset and may be reluctant to accept successful process. For young people with responsibility for the care of youth with special special health care needs, however, transitioning health care needs. to the adult care system can be complicated. It requires complex coordination by health care Transitioning from pediatric to adult health care teams working to maintain delivery of high thus involves changes that are emotional, quality, comprehensive, patient-centered care. contextual and skill-based, and require much Much has been written about the difficulties of planning and preparation. In general, planning care transition, and a range of resources have and support for care transition for children and been developed. In many states, health agencies youth with special health care needs in the have developed websites to facilitate planning United States is inadequate. Where transition is and provide support for adolescents with special unsuccessful, care can needs and their families during the transition. Thirty-nine states have be disrupted and This paper highlights some of the more useful a sponsored website children’s health can sites. dedicated to care suffer. In some cases transition for youth the consequences are with special health Background extreme. However, care needs. California Most children, especially those with chronic or when transition is is one of the 11 states complex health problems, have established successful, health and yet to create a site for long-term relationships with pediatric health functioning can be its residents. care providers. For children with severe maintained and even conditions, these relationships often are very improved. Successful transition requires close and very important to the child, family and planning and collaboration among the patient, providers. Further, the developmental context of his/her family and their current and future health child health care makes pediatrics qualitatively care providers, as well as community service different from the typical organization of adult providers and agencies. Public policies and health care. Children require the involvement of support for care transition are important to a diverse team of service providers, and as they facilitate planning and implementation. mature responsibility for their care frequently Could a California-Specific Website Ease Transition to Adult Care? Lucile Packard Foundation for Children’s Health An estimated 4.5 million or 18.4 percent of US and records. 3,4,5 A recent survey of families of youth ages 12 to 18 have a special health care children served by the California Children’s need, a rate double that of young children ages 0 Services program (CCS) found that among to 5. 1 The National Survey of Children with children age 14 and older, 71 percent reported Special Health Care Needs included a four-item that they would find more information on index to measure the quality of transition transition helpful. In particular, they would services for youth with special health care needs value a complete resource list including the (YSHCN). Only 40 percent of YSHCN reported various agencies and programs available to having had the services deemed necessary to assist with transition. In those circumstances make a successful transition to adult care; in where CCS helped to find adult health care California only 37 percent report success, providers for the adolescent, they were placing it 45th among states. successful in finding one 80 percent of the time. 6 Even when efforts are made to facilitate transition, obstacles remain: a lack of available These myriad difficulties highlight the need for family physicians or general internal medicine youth and families to have readily available physicians and adult medical specialists willing resources to help them anticipate and plan for to accept YSCHN as patients; fragmentation of health care transition, taking into account topics primary and specialty adult care services; lack such as enhancing self-management, health care of knowledge about or linkages to community planning, communicating with health care resources that support older adolescents/young providers, insurance coverage and benefits, adults; absence of insurance reimbursement for financing health care, continuing education, transition services; and insufficient time and health care access, legal issues and advocacy skills for staff to plan and provide transition strategies. Those wishing to assist families with services. About one-fifth of pediatricians transition, including health care providers, surveyed reported that patients had insufficient advocates, social workers and care coordinators, knowledge about their health condition and/or also need information and guidance. skills to self-advocate at physician visits, making transition more complicated. 2 Families with special needs children face a 3 number of additional barriers to successful Lindley, Lisa and Barbara Mark. Children with special health care needs: Impact of health care expenditures on family transition. These include financing health care financial burden. 2011. services as their children age out of eligibility, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2872488/ 4 Center for Advancing Health. Young people with chronic fewer providers accepting Medicaid illness face uncertainty when transitioning from pediatric to reimbursement, and problems sharing adult care. News Medical. August 2014. http://www.news- medical.net/news/20140822/Young-people-with-chronic- information due to the privacy of medical care illnesses-face-uncertainty-when-transitioning-from-pediatric-to- adult-care.aspx 5 Carey, Mary. CBO Projects Lower Medicare and Medicaid 1 McManus et al. Current Status of Transition Preparation Costs. Kaiser Health News. August 2014. Among Youth with Special Needs in the United States. May 17, http://capsules.kaiserhealthnews.org/index.php/2014/08/cbo- 2013. http://pediatrics.aappublications.org/ projects-lower-medicare-and-medicaid-costs/ 2 6 AAP News. Survey: Transition services lacking for teens with CCS Family Survey for the Title V Needs Assessment: special needs. 2009. http://aapnews.aappublications.org/ Preliminary Results. December 16, 2014. 2 Could a California-Specific Website Ease Transition to Adult Care? Lucile Packard Foundation for Children’s Health Discussion and Recommendations websites of five states (Indiana, Kentucky, Maryland, Michigan and Pennsylvania) are Fortunately, a great deal of information is particularly good examples in terms of both available, but little of it has been vetted by content and ease of navigation. All of them knowledgeable people, and in many cases include (1) planning guides, (2) information on resources are not organized or consolidated. health care coverage, (3) resources for children One reliable national resource is the and adolescents, (4) resources for families, and organization Got Transition. Got Transition’s 7 (5) lists of local and national organizations that online index lists health care transition can be useful in planning and implementing resources, which are organized and separated by transition. Their web addresses are listed in topic. Categories include a summary of six core Table 2. elements: transition policy; transition tracking and monitoring; transition readiness; transition Recommendation planning; transfer of care; and transfer Using these state websites as models, leadership completion. of California’s health care programs serving The circumstances in which transitions occur children and youth with special needs should vary substantially by locale. Public policies and collaborate to create a state-specific website as a programs—including insurance programs, transition resource for patients, families, access to health care specialists, family support providers and those serving them. and educational resources—differ greatly among states, so state-specific information is of great value and importance to patients, families and providers. Fortunately, 39 states have a sponsored website dedicated to care transition for youth with special health care needs. California is one of the Public policies and 11 states yet to create a programs differ greatly site for its residents. A among states, so state- detailed review of the specific information is existing 39 state websites of great value and importance to identified 10 components patients, families and or types of content that providers. occurred frequently. Table 1 lists those topics that were found useful to those concerned about transition. These topics provide an outline of the potential content that might be incorporated into a California-specific website. In addition, the 7 The National Alliance to Advance Adolescent Health. Got Transition. 2014. http://www.gottransition.org/ 3 Could a California-Specific Website Ease Transition to Adult Care? Table 1: Ten Common Transition Website Topics Topic Purpose Advocacy, public policy, Support families in anticipating issues and planning transition; educate legal assistance policymakers, service providers, and families on best practices; create options and opportunities for transitioning youth within their communities. Counseling services Provide or identify resources to address a wide variety of issues faced by transitioning youth including bullying, mental health and behavioral health services, therapies (e.g., physical, occupational, speech, hearing, and vision), physical and vocational rehabilitation. Data Increase awareness about the needs for service for youth and families during transition. Education Provide access to educational programs including remediation, certification programs, vocational training, college, and adult education. Provide information about financial aid and government/private programs in the state that offer aid and scholarships. Help youth achieve success by empowering students, families; foster effective learning and protect educational rights and opportunities. Federal, state and local Identify supports offered by governments to help youth achieve government programs and independence and employment and to assist families in continuing to national networks care for their adult child (e.g. Supplemental Security Income and Social Security Disability Insurance). Facilitate access to state and regional coalitions and grant resources, and provide assistance with the legal system. Finance Provide information about eligibility and availability of financial resources for insurance, health care bills, medical equipment, in-home care and other health and social service coverage and expenditures, including respite care, housing, etc. Materials to assist with Provide materials to assist in the development of self-management transition services capacity so the adolescent can learn to better promote and maintain his/her health and minimize disability. Enhance understanding of how to use the health care system. Provide specific guidance on how and when to introduce information about transition and related activities. List information on educational and training opportunities, webinars and archived videos for patients, families and providers. Offer examples of various forms, (e.g., family health history summary; referral for consultation and services; collaborative services charting; case management and care coordination; adolescent development chart; medical home fact sheet, appointment scheduling, goal setting, medical passport, etc.). Link to useful publications, research and news articles. Provide glossary of terms that relate to disabilities and transition services. Could a California-Specific Website Ease Transition to Adult Care? Lucile Packard Foundation for Children’s Health Resources for youth Provide a variety of resources to promote community participation and encourage independent living if appropriate: • Planning for the future, self-care management including housing, transportation, money, emergency preparedness, skills, meals, personal and health schedule. • Highlight organizations that offer social and recreational opportunities including entertainment, creativity for adolescents to explore activities in sports and leisure and the arts, community recreational centers, and day programs. • Information about social development (e.g., sexuality, reproductive health, relationships); youth leadership, overall health and wellness. • Access to support services (peer and mentor), support hot-lines, and information on assistive technology, (e.g., devices and services that increase independence at home, school, and work). Resources for families Offer resources for caregivers and foster care families, including lists of health and human service providers, organizations, committees and councils that serve or represent youth with chronic and complex health conditions. Resources for health care Provide resources to help health care providers, including pediatricians, service providers adult physicians, nurses, and care coordinators, to organize and support transitions to adult health care. Table 2: Exemplary State-Specific Transition Websites Organization Website Michigan Department of https://www.michigan.gov/mdch/0,4612,7-132-2942_4911_35698- Community Health: 135030--,00.html Transition to Adulthood Pennsylvania Department http://www.portal.state.pa.us/portal/server.pt/community/special_kids_net of Health: Transition Health work/14205/transition_health_care_checklist/558090 Care Checklist Kentucky Cabinet for http://chfs.ky.gov/ccshcn/ccshcntransition.htm Health and Family Services: Transition Resources Maryland: Transitioning http://mdtransition.org/ Youth Resource Locator—http://specialneeds.dhmh.maryland.gov/ 5 Could a California-Specific Website Ease Transition to Adult Care? Lucile Packard Foundation for Children’s Health Indiana State Department http://www.in.gov/isdh/files/CSHCS_TransitionManual.pdf (PDF) of Health: Transition: Pathways to Your Future Edward Schor, MD, is senior vice president at the Lucile Packard Foundation for Children’s Health. Gabby Mujal completed an internship at the Foundation. Saya Yusa, an intern at the Foundation, assisted with research for this brief. 6 Could a California-Specific Website Ease Transition to Adult Care? Lucile Packard Foundation for Children’s Health References 1. McManus et al. Current Status of Transition Preparation Among Youth with Special Needs in the United States. May 17, 2013. http://pediatrics.aappublications.org/ 2. AAP News. Survey: Transition services lacking for teens with special needs. 2009. http://aapnews.aappublications.org/ 3. Lindley, Lisa and Barbara Mark. Children with special health care needs: Impact of health care expenditures on family financial burden. 2011. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2872488/ 4. Center for Advancing Health. Young people with chronic illnesses face uncertainty when transitioning from pediatric to adult care. News Medical. August 2014. http://www.news- medical.net/news/20140822/Young-people-with-chronic-illnesses-face-uncertainty-when-transitioning- from-pediatric-to-adult-care.aspx 5. Carey, Mary. CBO Projects Lower Medicare and Medicaid Costs. Kaiser Health News. August 2014. http://capsules.kaiserhealthnews.org/index.php/2014/08/cbo-projects-lower-medicare-and-medicaid- costs/ 6. CCS Family Survey for the Title V Needs Assessment: Preliminary Results. December 16, 2014. 7. The National Alliance to Advance Adolescent Health. Got Transition. 2014. http://www.gottransition.org/ ABOUT THE FOUNDATION: The Lucile Packard Foundation for Children’s Health works in alignment with Lucile Packard Children’s Hospital and the child health programs of Stanford University. The mission of the Foundation is to elevate the priority of children’s health care through leadership and direct investment. The Foundation is a public charity, founded in 1997. The Foundation encourages dissemination of its publications. A complete list of publications is available at http://www.lpfch.org/publications CONTACT: The Lucile Packard Foundation for Children’s Health, 400 Hamilton Avenue, Suite 340, Palo Alto, CA 94301 cshcn@lpfch.org (650) 497-8365 7 Could a California-Specific Website Ease Transition to Adult Care?