Planning for the Transition to Adulthood for Youth with Chronic Health and Developmental Needs

Roberta S. Rehm, PhD, RN, FAAN

When children with special health care needs and disabilities are young, they are usually cared for by parents and receive health and education services while living with their families. Most often parents, usually mothers, provide day-to-day care, coordination of assessments, consults, therapies, and advocacy in order to obtain needed professional services. As children become teens and young adults, however, there are systemic differences in insurance access, and health and education systems. Moreover, if young people will continue to require assistance across their lifespans, they and their families must learn to navigate adult oriented systems. It is critical that health, insurance, and education professionals understand the needs of families and their priorities in order to provide essential services and assist families with planning during this transition to adult services.

In the U.S. over 11 million children 0-17 years of age have special health care needs, meaning they have or are at risk for conditions that cause them to require health care at a greater rate than other children of their age. About 23% of these children with special needs, 2.1 million children under age 18, also have developmental and functional limitations and are likely to need assistance in adulthood. Only about 30% of youth with both health concerns and emotional, behavioral, or developmental limitations receive services to help them transition to adulthood in areas of health care, work, and independence.

In an NIH funded study of planning for the transition to adulthood by families raising children age 14-26 years, with both health conditions requiring daily care and developmental disabilities we interviewed parents, youth when they were verbal, special education teachers, and primary health care providers. Observations were also conducted in the family home and at Individual Education Program meetings at school.

Both parents and youth believed that the meaning of adulthood in the face of complex challenges was achievement of optimal independence, leading to a long-term high quality of life. They recognized that this would be contingent on obtaining adequate supports in areas that were appropriate for individual youth. Parents were universally committed to long-term involvement with their children, though specific plans for that involvement varied across families. Some youth continued to have emerging needs in adolescence, particularly in areas of behavioral health and long-term complications of chronic health conditions. Parents did not want school-based therapies and services to be cut back or withdrawn too soon if they felt further achievement was possible, which was sometimes an area of conflict with school districts. Planning became more specific at older ages. Support for planning from educators and health care providers was inconsistent and uncoordinated. Parents often did not feel fully informed about available resources.

Parents identified their top priorities as: (a) protecting the youth’s health, including maintaining support for current needs, and prevention of complications or deterioration over time; (b) assuring safety and security in adulthood, including assuring adequate financial support, safe and comfortable housing, either in the family home or in other supportive settings, legal protections, personal safety, and freedom from financial or sexual exploitation; (c) enrollment of youth in safe, supportive, meaningful and stimulating educational, employment, or activity programs after high school; and (d) finding safe, welcoming, and appropriate social opportunities. The overarching theme of priorities was the need to create a safe environment for young people in which they could enjoy a long-term high quality of life as adults.

Planning to accomplish this goal of a long-term high quality of life must be holistic and anticipate the life course, broadening the current priorities of medical and education systems, which focus on narrower areas of transitioning to adult services. Families, health care providers, planning specialists, and educators should work very closely together to assist youth and their parents to understand existing chronic conditions, and resources available to meet short term and long-term needs.

Funding for this study was provided by the National Institute of Child Health and Human Development and the National Institute of Nursing Research: HD 049433.