PROBLEM:  Youth with special health care needs (YSHCN) want a full range of opportunities like everyone else and require a coordinated system of care. Although federal mandates exist and more inclusive opportunities are available, outcomes for YSHCN remain poor.  The 2004 National Organization on Disability/Harris Survey of Americans with Disabilities found that people with disabilities are half as likely to finish high school and be employed and three times more likely to live in poverty than people without disabilities. Employment of people with disabilities has not improved in several decades.  Accessing adult health care is difficult.  The National Survey of CSHCN revealed that only 6.3% of families of YSHCN ages 13-17 perceive that they have received preparation for transition to adulthood.  Lifelong health issues require lifespan skills.  The challenge is to simultaneously improve the system that serves YSHCN and prepare youth and their families with the knowledge and skills necessary to promote self-determination, wellness and successful navigation of adult systems of care.

GOALS & OBJECTIVES:  In concert with the goals of MCHB, the New Freedom Initiative, and the Surgeon General’s Call for Action to Improve the Health and Wellness of Persons with Disabilities (2005), this proposal responds to Priority 1 through establishment, implementation, and interactive evaluation of a comprehensive national center providing leadership, resources, and knowledge to improve health, community participation, productivity and life for youth in transition and achieve MCHB’s 6 National Performance Measures.

The HRTW National Resource Center will strengthen abilities of states, medical homes and national family and youth organizations to: 

GOAL 1:  Support family/professional partnerships and integration of cultural competence at all levels of decision-making in transitioning CYSHCN to adulthood.
GOAL 2:  Assist youth/families to access comprehensive health care and transition planning through medical homes.
GOAL 3:  Promote access to adequate health insurance and other related funding supports during transition. 
GOAL 4:  Screen for special health care needs early and continuously focusing on building skills in health/safety promotion, self-care, prevention of secondary disabilities and responsible use of health care resources. 
GOAL 5:  Organize community services around transition that are easily used by families and youth. 
GOAL 6:  Promote transition of youth to adult health care, work and independence.   For each goal four objectives with related activities address: 1) assistance to State Title V CSHN programs to develop community-based systems of care 2) data analysis, synthesis and publication and materials development and dissemination, including the development and maintenance of the HRTW website and HRTW University; 3) resource sharing in expert workgroups, meetings and conferences; and 4) integration of YSHCN into national public and private initiatives.

METHODOLOGY:  Combining expertise of national HRTW leaders, family/youth leadership organizations, State Title V CYSHCN programs, and the medical home community and in partnership with MCHB National Centers, children’s hospitals and other public and private initiatives, the HRTW National Resource Center’s team will infuse transition philosophy and activities into the community-based service system for CYSHCN and their families.

EVALUATION: A logic model derived from the Model of Evaluation Practice advanced by DePoy & Gilson (2003) will be used to determine the extent to which the Center accomplishes the Goals and Objectives and advances transition in MCHB’s 6 National Performance Measures.