Improving care outcomes for the disabled: Where policy falls short

It is well established that the disabled are less likely to use preventive care services or to find doctors who understand their disability. The Surgeon General's Call to Action to Improve the Health and Wellness of Persons with Disabilities identifies the need for “health care providers to have the knowledge and tools to screen, diagnose and treat the whole person with a disability with dignity.” As outlined in the IOM's Crossing the Quality Chasm, the goal of reform is to achieve a system that ensures that care is patient-centered and equitable. Goals for care delivery, as proposed by the American Academy of Pediatrics, are similar. But these proposed frameworks and models of care have traditionally fallen short of meeting their goals. For example, despite recommendations that all children have a medical home, studies indicate that only half of children with special health care needs have access to a medical home.

This presentation considers the shortcomings of recently proposed care models and how they can be adapted to improve care for children and young adults with disabilities over their lifespan. We review the impact of child-oriented and adult-oriented medical education on direct patient care. We discuss barriers to transitions in care between the two and introduce the family-centered medical home that emphasizes a longitudinal approach to care not only for individuals with disabilities, but their families. Finally, we position the model as part of a holistic framework that includes care management to address other social and environmental determinants of health.