Simultaneously, a new model of family-centered care and youth centric services emerged based on the belief that youth and families can change the way health care is provided. This model allows the youth to become not only a full partner in the health team, but the leader of the health team. The new generation of youth with special health care needs that have benefited from this model are more proactive, self-reliant, and self-determined. They have survived and thrived their diagnosis and prognosis and have a sense of urgency unlike past generations. They believe they have a future to look forward to and they want bureaucratic barriers eliminated.

It has often been recognized that one of the barriers for health transition is the lack of awareness of what services are available and knowledge of who provides them. Several agencies on the federal level serve this population of “emerging adults,” yet there has not been a concerted focus on coordination of these services. However, all believe that coordination would narrow or reduce service gaps and reduce duplication of effort.

NOTE: Most Federally supported interagency models tend to have short lives. Some better known models include: The Federal Interagency Coordinating Council (FICC) serves children between the ages of 0 to three, and is a sustaining group due to its legislative mandate. The Presidential Task Force for the Employment of Adults with Disabilities’ (PTFEAD) Youth Task Force began a dialogue among selected representatives of federal agencies but was disbanded in 2002. The Healthy & Ready to Work Interagency Workgroup spearheaded by HRSA/MCHB and SSA was launched from the Federal SSI/CSHCN Workgroup in 1996, but disbanded in 1999 due lack of a federal mandate. It is anticipated that the Office on Disability will create a federal sustaining interagency council, a hybrid of the Department of Labor’s former Youth with Disabilities Task Force and the HRTW Interagency Workgroup, where health will be the lead and the focus.