HRSA/MCHB Efforts in Developing Systems of Care that Support Youth in Transition

For the first time in the country, there is a generation of youth with special health care needs, chronic health conditions and disabilities who have survived beyond their diagnoses/prognoses. The challenge of their transitioning to adulthood was recognized as early as 1989 when Surgeon General Koop held a meeting with family members and health professionals to focus on the health needs of youth as they transition from high school to higher education and/or work, and from home to community. The former model for adult-centered care became quickly outdated as the emerging adults began to demand full participation in managing their own health care. Health professionals were reticent to transfer care to unknown adult practitioners, parents were terrified to let go of being spokespersons for health care, and adolescents found themselves wanting independence, but without the skills and information to move forward.

A major goal of the MCHB Division of Services for Children with Special Health Needs (DSCSHCN) 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.

With the emergence of the Healthy and Ready to Work Initiative of the Maternal and Child Health Bureau in 1996, the concept of health and transition became a prominent movement. The move to make health a part of transition planning for youth with special health needs and disabilities became a national concept.

HRTW Projects Phase I and II - In 1996, nine demonstration grant projects were funded under the Health Resources and Services Administration (HRSA) Special Programs of Regional and National Significance (SPRANS). In 2001, HRTW Phase II Projects (5) have been funded as model state demonstration programs. HRTW Projects

State Title V CSHCN programs are charged with providing rehabilitative services to children and youth under age 16 who are receiving Supplemental Security Income (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.