The canary in the mine

Many Americans are concerned about their access to health care in the future, especially their ability to pay for needed services. However, a person with a disabling condition requiring ongoing clinical vigilance, supportive care, and other assistive services or technologies faces special difficulties: that person is the "canary in the mine," warning others about fundamental problems within our health care system. Persons with disabilities who have health insurance are often unable to get items and services not covered by their plans. They experience more problems than others with follow-up care, availability of specialists, getting to doctors, and obtaining help during off hours. These problems suggest that people with disabilities fall into the "quality chasm," the metaphor used by the Institute of Medicine to describe the gap between ideal care and current reality. The Crossing the Quality Chasm report suggests 6 aims for fundamental reform, exhorting the health care system to become safe, effective, patient-centered, timely, efficient, and equitable. Each of these aims holds special resonance for persons with disabilities. Despite the compelling need to overhaul the health care system, the American public as yet seems little inclined to fundamental change. Perhaps the impetus must come from subgroups within the population who are particularly at risk from the current system, such as persons with disabilities. As solutions are crafted, people with disabilities, their families, and communities should help design and direct fundamental changes to the health care system.