9 th Annual Maternal and Child Health Epidemiology Conference Tempe, Arizona December 11, 2003

1. Transitions to Adult Health Care for Children/Youth with Special Health Care Needs: Family Perspectives 9th Annual Maternal and Child Health Epidemiology Conference Tempe, Arizona December 11, 2003 Nora Wells (nwells@fcsn.org)

2. What are key issues from the perspective of youth and families? • Early visioning of the future • Access to quality, knowledgeable adult providers • Adequate, accessible health care financing • Accessible community based services, work, recreation • Tailored transition plans • Participation in all aspects of planning, evaluation, program and policy

13. What’s holding us back? Lack of: • Family and youth awareness • Provider awareness • Knowledge of how to begin • Info specific to varied special needs • Use of available data • Partnership

14. Partnering with youth and families • Youth and families are essential partners at every level of data collection: • designing • carrying out • interpreting • using data to promote change

15. Questions to ask • What data are we now collecting? • What does this data tell us? • What are we doing/can we do with the data we collect? • What other data do we need to collect? • How will this data help us improve services for cyshcn?

16. What data do we have/need? • transition awareness in early years • transition needs of youth with varied special needs • preventive care/behavioral risk factors for cyshcn • youth coverage, satisfaction • provider roles • integration, work, recreation How can we use this data to promote change?

17. Useful Family Voices Resources • Links to Family Voices projects, materials and activities: www.familyvoices.org • Family contacts in each state: www.familyvoices.org • Kids as Self Advocates: www.fvkasa.org • Materials on Transition: www.brightfuturesforfamilies.org/pdf/Transitions.pdf • www.brightfuturesforfamilies.org/pdf/Summer%20_3_2003.pdf

18. Useful Web Resources • Healthy and Ready to Work website – understanding systems, access to quality care, increase involvement of youth, prepare providers, tools and resources:Data to Know (www.hrtw.org) • The Society for Adolescent Medicine: (www.adolescenthealth.org) • Info on quality health care (www.qualityhealthcare.org); (www.ahrq.gov)

19. Helpful Reports and Sources of Info • A Portrait of Adolescents in America, 2001 – FACCT/RWJ (www.facct.org/facct/doclibFiles/documentFile_522.pdf ) • President’s New Freedom Initiative on Mental Health, 2003: (www.mentalhealthcommission.gov/reports/Finalreport/toc_exec.html) • “Why Young Adults Become Uninsured and How New Policies Can Help: May 2003; Commonwealth Fund (www.cmwf.org/programs/insurance/collins_riteofpassage_ib_649.pdf) • “Is the Health Care System Working for Adolescents? Perspectives from Providers” October 2003; MCH Policy Research Center: (202) 223-1500 • Data Resource Center interactive website: National Survey for Children with Special Needs scheduled for winter 2004

20. Using Data for Action • To understand problems • To develop clear strategies to address these problems • To educate the public, health plans, policy makers, legislators • To promote changes that will improve services