Abstract

Equality of health care for people with disabilities remains an elusive goal, despite the evidence documenting health care disparities in this population. The Affordable Care Act in the US includes several provisions that seek to improve care delivery among the disabled, but they are largely designed to support those aging with disabilities. In the UK, the recent Parliamentary and Health Services Ombudsman's report, 'Six Lives,' reviews serious shortcoming in health and social services for the learning disabled. There are few models that emphasize a longitudinal approach to healthcare for children and young adults with disabilities that can bridge transitions across their lifespan and coordinate care between providers, patients and their families.

We present an analysis of barriers in care coordination and transition for children and young adults with disabilities in both the US and UK. We review the impact of child- and adult-oriented medical education on direct patient care and how current models can be adapted to overcome these barriers. A family-centered medical home model would be an ideal construct as part of a holistic care framework that addresses the medical, social and environmental determinants of health. Community engagement may provide the impetus for overcoming barriers such as lack of cohesiveness in planning. Communication between health care providers, social workers and even school counsellors may make the difference not only in improving health outcomes but also in promoting a child’s independence commensurate with his or her abilities. Expanding upon the basic conceptual frameworks of patient centered care, bridges to health, and care management to smooth out the uneven transitions in care between childhood and adulthood is the first step in reducing disparities in this population. Future research needs to consider the impact of community-oriented care management on reducing these disparities.

Slides