Transitioning to Adult Services

Adolescence is a time of many changes, many questions about the future and for some much uncertainty. A typical teenager will transition from high school to college or employment, living at home to living independently, and from pediatric health care to adult health care. This process can be a very bumpy road for some teenagers with disabilities and chronic conditions. How can you help?

Health care professionals play an important role in assisting youth and their families with the transition to work, the transition to independent living and the transition to adult health care services. The process begins early in childhood by a focus on health promotion and the prevention of secondary disabilities. Health promotion includes encouraging self-care, independence, social skills and community involvement. A critical concept is self-determination - providing the necessary supports so that individuals can take charge of their health care and other aspects of their lives. More information on self-determination is available at http://www.selfdeterminationohsu.org.  Another activity of the Center for Self Determination at OHSU is the Everyone Can Work website (http://www.everyonecanwork.org).  This provides a web-based mentoring service for youth and young adults and also provides information on the Workforce Investment Act (WIA, 1998).  The goal of the WIA is to locate one place ("one-stop" programs) where any person can obtain job training or employment services.

Schools, the Department of Vocational Rehabilitation (DVA) and Developmental Disability services are key partners with families and health care providers in transition planning. School staff must include a child’s transition needs on the Individual Education Plan (IEP) by age 14 years and begin providing services by age 16 years. Children who are receiving Social Security benefits are referred by SSA to the DVA at age 16 years. A child must need support to prepare for employment to be eligible for services from DVA. Staff from Developmental Disability services will assist some adolescents and their families to identify appropriate supports for the transition from adolescent to adult services.

A great deal of resource material is available for health professionals and families. Much of the information presented here is taken from, “Transitioning Children and Youth to Adulthood,” in the Every Child Deserves a Medical Home training program developed by the AAP, the U.S. Maternal and Child Health Bureau (MCHB), Family Voices, Shriners Hospitals and the National Association of Children’s Hospitals and Related Institutions. The training manual for this program is available at http://www.medicalhomeinfo.org

General information on adolescent health promotion

• Bright Futures, http://www.brightfutures.org
• Guidelines for Adolescent Prevention (GAPS),
  http://www.ama-assn.org/ama/pub/category/1980.html

Checklists on transition issues for use in health promotion

• Adolescent Autonomy Checklists, Youth in Transition Project, University of Washington, (1984-87), http://depts.washington.edu/healthtr
• Life Maps, from Youth Transitions, Kentucky Cabinet for Health Services, Commission for Children with Special Health Care Needs, http://chs.state.ky.us/commissionkids/transition.htm#Life
• Competencies for Young People Transitioning to Post-Secondary School and/or Work, Kentucky TEACH project

Strategies to promote a successful adolescent transition

• Ages 11-21, the CHOICES Transition Project, Betty Presler, CHOICES Coordinator, November, 2000 (the entire document is available in the Appendix of the “Every Child Deserves a Medical Home” manual)

Internet sites for teens with disabilities

• http://disabilityresources.org/KIDS.html, the DRM Web Watcher provides connections to a variety of websites for kids and adolescents including condition specific web sites
• http://www.ablelink.org/public/default.htm, Ability OnLine
• http://www.fvkasa.org, Kids as Self Advocates (part of Family Voices)
• http://www.disabilitycentral.com/activteen, @ctivTeen provides a chat room, game room, and Ezine newsletter written by and for teens
• http://www.wowusa.com, Winners on Wheels, for children and teens who use wheelchairs
• http://www.ldonline.org, web site on learning disabilities that includes chat rooms for students, teachers and parents
• http://www.washington.edu/doit/, web site of a program to support high school students with disabilities who have an interest in science, engineering and math
• http://www.members.tripod.com/-sbteens, for teenagers with spina bifida

Information on transition planning

• The Adolescent Health Transition Project, University of Washington, Seattle, http://depts.washington.edu/healthtr, practical tips for health professionals, parents and teens, checklists and links to other resources
• Transition Planning for Adolescents with Special Health Care Needs and Disabilities: Information for Families and Teens, http://www.communityinclusion.org/transition/familyguide.html
• Transition and Internet resources, http://www.familyvillage.wisc.edu/sp/TRANS.HTML

Information on health care financing

• Information from the Healthy and Ready to Work program of the MCHB, Youth with Disabilities in Transition, http://www.hrtw.org/tools/index.html
• Information on SSI work incentives and “Ticket to Work” program, www.ssa.gov (click on Office of Disability, then Publications, then Work Incentives), and http://www.hcfa.gov/medicaid/twwiia/twwiiahp.htm
• What parents of transition age special education students should know about SSI, http://www.communityinclusion.org/publications/indexb.html

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