If you surveyed people with significant disabilities about their greatest fears, I'd wager that the top vote-getters would be going into a nursing home and dying, in that order. Those certainly are my greatest fears. I've seen too many people with disabilities like me--people who need help getting out bed and getting dressed every day--end up needlessly in nursing homes. To us, the most important issue in health-care reform is long-term care.

Suppose you had no control over your most basic life decisions. Someone else would determine when and even if you got out of bed, when you went back to bed, what and when and if you would eat, with whom you would associate. That's life in a nursing home.

It is this systematic denial of rights, even without the endemic abuse and neglect, that makes living in these institutions dismal. Nursing homes corral large numbers of people with long-term physical or medical needs into a manageable corner. There's no room in these corners for free spirits--people unwilling to do what they're told, when they're told. Freedom is too much of a threat to efficiency and profit margins.

Though nursing homes are more expensive than in-home attendant services, nursing homes are still a dominant force in the lives of the disabled. Federal policy is contorted by disability bigotry and rigged to maintain the coffers of the multi-billion-dollar nursing-home industry.

Medicaid requires all states to cover the long-term care needs of all recipients in nursing homes. States have the option to spend Medicaid money on home attendants. But in the many states that do not exercise this option, people who need even basic physical assistance for a few hours a day must surrender themselves to a nursing home.

States are allowed, and in some cases even required, to limit spending on in-home attendant services, but they cannot cap nursing-home payments. In essence, the federal government issues nursing homes a blank check, and the bill comes to about $30 billion a year.

Why haven't cheaper in-home attendant services overtaken the more expensive institutionalization? Nursing homes are a big business, and people with disabilities are among the commodities that provide the cash flow. Monitoring home care for abuse of clients or fraud may be difficult, but nursing homes are subject to the same sorts of problems. And the most likely recipients of home care will be more able to protect their own interests.