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  MCHB HRTW Initiative
 
 
HRSA/MCHB Efforts: History with a Future

In 1996, MCHB’s Division of Services for Children with Special Health Needs (DSCSHN) began a new initiative that targeted youth with special health care needs. For many years MCHB was well known and respected for its comprehensive coordinated programs for children. However, lacking was a dedicated effort for those children who grew up, many of whom who had outlived their diagnoses, and needed supports to be adults who could live the lives they choose.

Early work in transition stemmed from Surgeon General Koop’s final conference in 1989 that focused on Transition of Youth with Special Health Care Needs. Shortly afterwards the DSCSHN funded demonstration grants in this area. Some of these met with only modest success, as the climate to prepare children, youth, their families and the systems that served them was not receptive yet. Since the eighties other federal agencies also funded transition demonstration grants (OSERS, RSA), but none had integrated a health component.

During the 1990’s, legislative mandates affecting children with special health care needs (CSHCN) underwent sweeping reform. Much attention focused on providing system support for young children's educational and health needs under a federal initiative called “Healthy and Ready to Learn.” But what happened when these same children became youth with special health care needs (YSCHN)? Were programs and services supporting the other end of the spectrum “Healthy and Ready To Work?”

In response to this dilemma, MCHB/DSCSHN announced the new grant initiative “Healthy and Ready to Work” in December 1996. Nine states (CA, IA, KY, LA, MA, ME, MN, OH and OR) and one national center (FL) were awarded grants in Phase One (1996-2001). Today, in Phase Two (2001-2005) there are six grants located in or have a strong working relationship with their state Title V Programs (AZ, IA, KY, ME, MS, and WI) and one national center (DC, 2002-2006.) (About HRTW Projects)

In this era of “outcome based” programs, one may ask, “What are the outcomes of all these federal programs for health care, education and rehabilitation? Is the future of children, who happen to be disabled, maximized by the current system of federal supports? And how do we monitor and measure the progress of these activities and the successful transition of YSHCN?

Making A Difference: HRTW Projects Phase I Learned………..

  • Many youth with special health care needs (YSHCN) have no experience managing their own health care, making medical appointments or even discussing the specifics of their medical conditions;

  • Many YSHCN 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 normal 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 the children mature;

  • Typically, the health care system does not interact with the education, rehabilitation or insurance systems in planning or facilitating transition.

 

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The HRTW Center is headquartered at the Maine State Title V CSHN Program. Activities are coordinated through the Maine Support Network's Center for Self-Determination, Health and Policy. The Center is funded through a cooperative agreement (U39MC06899-01-00) from the Integrated Services Branch, Division of Services for Children with Special Health Care Needs (DSCSHN) in the Federal Maternal and Child Health Bureau (MCHB), Health Resources and Service Administration (HRSA), Department of Health and Human Services (DHHS).
Lynda Honberg, HRSA/MCHB Project Officer.