. "Appendix I Health Care Transition of Adolescents and Young Adults with Disabilities and Special Health Care Needs: New Perspectives--John Reiss and Robert Gibson." Workshop on Disability in America: A New Look - Summary and Background Papers. Washington, DC: The National Academies Press, 2006.
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Workshop on Disability in america A new look: Summary and background papers
transition to adulthood represents a critical turning point in the life course, suboptimal transition experiences may affect the ability of people with childhood onset chronic conditions to participate in society and live fulfilling lives as adults (Halfon and Hochstein, 2002).
The last decade and a half has seen an ever-expanding number of policy and consensus statements, practice guidelines, position papers, conference reports, calls to action, editorials, program descriptions, and small research studies that address various aspects of health care transitions for young people (Reiss and Gibson, 2002). In 2002, the American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians-American Society of Internal Medicine (ACP-ASIM) released a consensus statement (American Academy of Pediatrics et al., 2002) that sets out six steps to ensure that all young people with special health care needs are provided with the support that they need to transition to adult-oriented medical care. (See Box I-1 below). To implement these and other similar recommendations will require changes in professional education, clinical practice, organizational procedures and structures, public policies, and research priorities (Scal, 2002; Blum, 2002; Reiss and Gibson, 2002; Reiss et al., 2005; Lotstein et al., 2005).
For the purposes of this paper, health care transfer refers to the point in time when an individual changes from one primary or specialty care provider to another. This paper focuses on one important example, the transfer from pediatric to adult care. Health care transition refers to a planned process that for youth includes the preparation for transfer from pediatric to adult-oriented health care, the transfer itself, and the establishment of the young adult in the adult health care system. Child-centered care and pediatric care refer to primary and specialty health care that is provided to individuals under the age of 18 years by pediatricians, family physicians, pediatric nurse practitioners, and other child health care professionals. Such care is characterized by attention to processes of physical, mental, and emotional development that continue from infancy through adolescence and includes involvement by parents, who oversee and provide much care to children in the home. During this period, parents have the legal responsibility for decisions about a child’s care, although young people generally become more involved in decision making as they mature. Adult-oriented health care refers to health care that is provided to individuals over the age of 18 and that places greater emphasis on personal responsibility and patient autonomy.
HEALTH CARE TRANSITION VIEWED AS A DEVELOPMENTAL PROCESS
As noted by Rosen (2004), health care transition occurs “contemporaneously with the dramatic physical, cognitive, psychological and social