A major goal of the HRSA’s MCHB Division of Services for Children with Special Health Care Needs (DSCSHN) is to assure that all youth with special health care needs receive the services necessary to transition to all aspects of adulthood, including adult health care, employment and independence.

Due to new technology, improved health care and many other factors over the past two decades, CSHCN (Children with Special Health Care Needs) have been living longer. More than 90 percent of all children who develop a disabling condition in childhood now survive into adulthood. As one would expect, CYSHCN often become adults with chronic health conditions and disabling impairments. The Social Security Administration’s (SSA’s) Supplemental Security Income (SSI) program experienced tremendous growth of children with disabilities under the age of 18, swelling to around 1 million in 1996. Changes to the law enacted during 1996 have reduced that number somewhat by removing about 100,000 children with less disabling conditions from the SSI roles. All those remaining on SSI, however, and those first qualifying at age 18 or later as adults with disabilities, face a potential lifetime of poverty. CYSHCN are less likely than their non-disabled peers to graduate from high school, attend college, work in competitive employment or live independently. Families and young adults indicate that there are inadequate programs and resources to help these youth make the transitions necessary to become independent, self-supporting adults. Many middle-aged adults who grew up with chronic health conditions are still treated by pediatricians, often resulting in the neglect of adult health issues, such as reproductive health, aging, effects on employment, etc.

Attitudes towards people receiving public benefits as opposed to working have changed dramatically since the early 1990s. The Americans with Disabilities Act has focused attention on people with disabilities having the right to employment for which they are qualified. Welfare reform under the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 requires people to seek employment rather than remain on public benefits for extended periods of time. In addition to legislation addressing employment for people with disabilities, a Presidential Task Force on Employment of Adults with Disabilities was created and charged with bringing the unemployment rate for people with disabilities into line with the overall national unemployment rate. (In spite of the lowest overall national unemployment rate in about 30 years, fewer than 30 percent of people with disabilities ages 16 to 65 are employed.)

Demonstration grant projects previously and currently funded under HRSA’s Special Programs of Regional and National Significance, have preliminary findings that: many adolescent CSHCN have no experience managing their own health care, making medical appointments or even discussing the specifics of their medical conditions; many want education and employment opportunities, but feel the adults around them either have extremely low expectations of their abilities and future prospects or present barriers to attaining a degree of independence that would be considered matter of fact for a young adult without special health care needs; in some cases families are unaware of the existence of programs and resources that could help; pediatric and adult health care professionals often do not communicate, much less collaborate, to achieve a successful transition of care from one to the other as CYSHCN mature; and typically the health care system does not interact with the education, rehabilitation or insurance systems in planning or facilitating transition.

State Title V CSHCN programs are charged with providing rehabilitative services to children and youth under age 16 who are receiving SSI benefits, when those services are not paid for by Medicaid. Most states, however, have not addressed the needs of youth as they transition to adulthood. For this reason, DSCSHN has funded the development and demonstration of model state programs focused on these issues of children and youth.