Muzzled in a Nursing Home, the Spirit Is Extinguished : Health reform: For many people with disabilities, the inclusion of home-based care is what matters most.
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.
Health-care reform provides an unprecedented opportunity to shed the inhumane and expensive institutional bias of the present Medicaid system. But only two of the many reform plans--President Clinton’s and the single-payer plan supported by more than 100 members of Congress--challenge the nursing-home industry in any way by even mentioning home-based care.
States should be required, not just allowed, to spend some of the money now paid to nursing homes on providing in-home care. The plans put forth by Rep. Jim Cooper (D-Tenn.) and Sen. John Chafee (R-R.I.) do not consider the issue. Clinton’s plan and the single-payer system, in which the government pays for health care directly, would provide the first-ever national program for home care. Still, neither plan comes close to setting a standard of excellence.
Clinton calls for $65 billion--from an as-yet-unspecified source--in funding for long-term care over five years. But states would still not be required to participate, and nursing-home care would still be mandated. The Clinton plan would also have a spending cap for in-home care, but not for nursing homes.
The single-payer plan is much simpler than Clinton’s, and much more vague. It would mandate that states provide as much long-term in-home assistance as necessary, to anyone who needs it, as long as it doesn’t cost more than 65% of the cost for the same care in a nursing home. Otherwise, back to the nursing home.
The bold promise of health-care reform rings hollow without comprehensive, truly equitable long-term care. Our present system is inefficient, misguided and cruel. It condemns people with disabilities to life in a nursing-home prison.
