Transition to Adulthood Plans Studies (TAPS and TAPS II)

Sixty one teens and young adults and their parents are participating in the Transition to Adulthood Plans Study (TAPS). All of the youth have both a physical health condition that requires ongoing treatment or monitoring, and they are developmentally disabled. Planning for the transition to adulthood is critical for the youth to assure that they will continue to receive needed services and supports as they reach adulthood and age out of child-centered programs.

The goal of this ethnographic study is to learn how families work on plans for transition with community resources like schools and the health care system, so the study includes parents, youth, and the youth’s special education teacher and primary health care provider (HCP).

Data for the study is collected in interviews and observations that take place in the family’s home, the youth’s school, and the HCPs office or clinic. Observations have also taken place in settings that serve youth and families such as parent educations programs, dances for youth, and planning sessions by community professionals.

Findings from the study include identifying priorities of parents and youth, which included assuring safety and health in adulthood, finding meaningful and satisfying work or activities after high school, and ensuring an active and supportive social life for youth. The TAPS team has also identified parents’ advocacy strategies at school, the impact of transition on families, and factors that affect the transition between pediatric and adult systems of health care.

Because of the wide range of abilities and needs of individuals with disabilities, it is important for each youth to be the focus of personalized planning for transition to assure that they reach their own goals, including the types and levels of support that facilitate optimal independence and appropriate support services.

The TAPS team has partnered with the community parent support group, Support for Families of Children with Disabilities (SFCD), to use their study results to develop a comprehensive intervention to facilitate transition. The intervention includes extensive individualized assessment, information and skills training, person centered planning, and referrals to appropriate services.

The TAPS team and SFCD are now pilot testing this intervention (TAPS II) with 30 youth and their parents.