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PPC and Institute for Educational Leadership Policy Brief

Transition’s Missing Link: Health Care Transition



NCWD/Youth’s Guideposts for Success provide a framework for what all youth, including youth with chronic conditions and disabilities, need to make a successful transition to further education, careers and adulthood. One of the key elements of the Guideposts under Connecting Activities is health care. This Policy Brief draws on a number of recent health care-related reports to identify policy strategies for improving health care transition for youth with chronic conditions and disabilities.

“The two populations at greatest risk of medical neglect are the elderly and children. We will have to fight harder than ever for the funds to care for special needs children and young people. It is unlikely that any administration or any Congress will address this issue on the clear merits of the situation -- in spite of the nation’s affluence and prosperity. But the day will come when the business community will exert much greater pressure than at present for a more realistic method of funding health care. We must be prepared for that day so our special needs children are not shortchanged as the health care delivery system is rebuilt.” - Surgeon General C. Everett Koop, M.D., 1989 Surgeon General’s Conference, Growing Up and Getting Medical Care: Youth with Special Health Care Needs.

In 1989, Surgeon General Koop had the foresight to bring experts together for a discussion and planning session to help youth with chronic conditions and disabilities transition to the adult health care system. Since this landmark effort, the American Academy of Pediatrics, American College of Physicians, and American Academy of Family Physicians developed a joint consensus statement on health care transition in 2002, and the Institute of Medicine’s 2007 Future of Disability in America report made recommendations for health care transition. In spite of these calls to action, little progress has been realized over the past two decades.


The amount of care provided to adults with childhood-onset health conditions by pediatric providers and children’s hospitals is stunning. Adults with childhood-onset conditions disproportionately use inpatient services in children’s hospitals.


Transition age young adults, 18- 21 years, comprise the fastest growing segment, followed by adults over 21 years and a significant percentage who are in their 30s and 40s (Goodman et al., 2011). While pediatric providers and hospitals may have unique expertise to manage childhood-onset conditions, they lack the knowledge, infrastructure, and ability to address compounding adult health issues and coordinate with adult care providers and organizations.


A growing number of families and health care providers continue to call for a system to provide health care transition and quality health care for young people with chronic conditions and disabilities. Until policymakers and health care providers develop and implement this system, the nation’s most vulnerable young adults will continue to be at risk for depending on Medicaid and/or Medicare; they will be at risk for joining the ranks that depend on SSI and food stamps; and most importantly, they will be at risk of avoidable morbidity and mortality. Surgeon General Koop’s warning was not heeded: children and young adults with chronic conditions and disabilities were not prioritized in the 2010 Patient Protection and Affordable Care Act (PPACA). These young people will continue sacrificing their dreams and lives until the health care system is able to meet their needs…

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