Core Outcomes: Key Measures of Performance

Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.

While rapid advances in medical science have enabled nearly all children born with special needs to reach adulthood, youth with special health care needs are much less likely than their non-disabled peers to finish high school, pursue post-secondary education, get jobs, or live independently. Few coordinated services have been available to assist them in their transitions from school to work, home to independent living, and child and family-focused care to adult-oriented care. Transition planning must begin early in order to move children and families along in a developmental fashion. One of the greatest challenges in planning is how to make a successful transition from the pediatric to adult health care system for youth with special health care needs. Health care professionals, on both the pediatric and adult sides, may lack the training, support, and opportunities they need to promote the development of youth with special health care needs as partners in health care decision-making and policy formulation. Some adult health care providers may not be prepared to treat patients with complex medical conditions that begin in childhood. The challenge remains to improve the system that serves youth with special health care needs while simultaneously preparing youth and their families with the knowledge and skills necessary to promote self-determination, wellness, and successful navigation of the adult service system.

This outcome was evaluated for CSHCN 12–17 years of age using several questions: whether doctors had discussed the shift to adult providers, whether doctors had discussed the child’s changing needs as he or she approached adulthood, whether anyone had discussed insurance coverage in adulthood, and whether the child was usually or always encouraged to take responsibility for his or her health. This outcome was achieved for 41.2 percent of adolescents.

Adolescents whose conditions affected their activities usually, always, or a great deal were considerably less likely to achieve this objective than those whose daily activities were never affected (30 percent versus 52 percent). Children living in poverty were only half as likely as high-income children to receive adequate transition services (24 percent versus 54 percent).

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