TRANSITIONS AND ACCESS TO HEALTH CARE
TRANSITION OF CARE TO ADULT SERVICES
Improved medical care and increasing numbers of adults with childhood-onset disability have led to much interest and concern about the transitioning of care of young adults from a family-centered pediatric approach to a self-directed adult care model (2). Evidence suggests that the related health care delivery has not been able to keep pace with their multidimensional needs (25). For over two decades, various professional groups and initiatives have called for improvements in the process in their disciplines and internationally (361). Adults with childhood-onset disability continue to face adverse health outcomes that not only compromise their own life course transitions, but also increase the burden on the health care systems. A consensus policy statement, adopted by the American Academy of Pediatrics, American Academy of Family Physicians, and the American College of Physicians— American Society of Internal Medicine, states that the transition of care should "maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continues uninterrupted as the individual moves from adolescence to adulthood." (362) Barriers to transitions include lack of adult provider training about health issues and disability, focus on medical issues without regard for the broader developmental aspects of transition into adulthood, poor communication between pediatric and adult providers, and the patienf s need for self-direction while navigating the adult system (363,364). There have also been suggestions for specific elements to support a transition, such as preparation, flexible timing, care coordination, transition clinic visits, a network of interested adult care providers, and institutional and health care systems support and resources; however, this remains theoretic and programs vary across regions and countries (365,366,367). Transition programs strive for supportive environments built around the individual with a childhood-onset disability and his or her family, and recognize the need for a life-span approach (32). Barriers to programs include lack of insurance, lack of funding or dedicated time for professionals, patients' uncertainty about need for follow-up, and patients' choice (368). Resource centers with tools and tips are being developed for the transition process, focusing on young people with disability, their families, their health care team, and other service providers; these are easily accessed electronically (healthytransitionsny.org and gottran sition.org) (32). At present, the science is at an early stage of development, and no evaluation plans to determine successes are available (363,366,369). Children and adolescents with early-onset and chronic health care needs usually receive an organized level of care, and maintaining coordination of often complex care is an important part of quality health care over a lifetime.
There have been reports of successful transition of service models. Successes related to planned and evaluated transitions (370), personal health records management (370,371), and provision of education on health and needs (372). There remain questions regarding shared responsibilities for the transition (373-375), need for protocols (376), and timing for planning and implementation. Pediatric physiatrists can often provide the stability for this transition. Table 21.3 identifies challenges for transitioning health care from pediatric to adult systems of care (377).