The subject of this panel is the 1999 Olmstead Supreme Court decision that declared “unnecessary institutionalization is discrimination” under the Americans with Disabilities Act and that directed states to provide services in the “least restrictive environment”
Because disability emancipation has not received as much attention as other liberation movements I will take a few moments to offer a broad overview as to some historical, theoretical and practical aspects involved in the struggle for community-based in-home supports.
Hand in hand with the implementation of the Olmstead decision I believe that we must simultaneously reject Corporate “Care” and replace it with a profound and liberating model of in home services, not a nursing- homes on-wheels model of services.
The primary goal of the disability movement has been to confront the disablist society in whatever form oppression manifests. The societal practice of institutionalization that segregates disabled persons in liberty-restricting, often de-humanizing and abusive institutions – primarily at this point in history in for-profit nursing home corporations – is one such oppression.
The right to make basic decisions about where and how to live as well as the right to be free from bodily restraints has been recognized as core principles of liberty. States, however, with the power of the purse have historically segregated and institutionalized disabled individuals, extinguishing their fundamental liberties and warehousing them in deplorable public and private facilities.
Not coincidently, the rise of the institution accompanied the rise of capitalism in Western societies. As work became more rationalized, requiring precise mechanical movements of the body repeated in quicker succession, impaired persons – deaf, blind, developmentally disabled, mentally impaired, those with mobility difficulties and others – were seen as less “fit” to do the tasks required of factory workers. They were increasingly excluded from paid employment on the grounds that they were unable to keep pace with the “disciplinary” power of the new mechanized, factory-based production system. So it was that the operation of the labor market in the 19th century effectively depressed disabled people of all kinds to the bottom of the market. As industrial capitalism demanded a standard worker body which would conform to the needs of production, disabled persons came to be regarded as a social problem and the justification emerged for segregating individuals with impairments out of mainstream life and into a variety of institutions including workhouses, asylums, prisons, colonies and special schools .
The widespread theory of eugenics geared towards what scholar Lenny
Davis calls “enforcing normalcy” by eliminating “defectives” provided further momentum for segregating disabled persons. According to Davis the term “normal” as “constructing, conforming to, not deviating from, the common type or standard, regular, usual” only enters the English language around 1840.
It is worth taking note that both progressives such as Emma Goldman and conservatives such as John D. Rockefeller and Alexander Graham Bell were all for ridding the world of “cripples,” epileptics, deaf and other impaired persons.
Early 20th century official US reports referred to disabled individuals as “defects …[that] wounds our citizenry a thousand times more than any plague,” as “by-products of unfinished humanity,” and as “a blight on mankind” whose mingling with society was “a most baneful evil.” Some laws demanded forced isolation from “normal” society. A 1911 Chicago ordinance, for instance, warned “No person who is diseased, maimed, mutilated, or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, shall therein or thereon expose himself to public view.”
Although institutionalization reached its peak in the 20th Century, the model persists to this day and continues to restrict disabled persons democratic participation in society.
Due to pressures from disability activists in the late 1970s the government directed funding to establish Independent Living Centers. Part of the liberation task involved freeing disabled persons not only from confined institutional living but also from dominating social workers and other professionals carrying out policies that disable rather than enable, and from unpaid personal assistance. The disability movement understood that paying one’s personal assistant rather than relying on family, friends or charity meant the autonomy to organize one’s life: to arrange one’s day, seek employment, attend functions, keep schedules.
So setting policies in place that provide funding for disabled persons to live in the community has a significant component: funding programs that allow disabled persons to hire a personal assistant.
Despite some public policy gains such as the Olmstead decision, unfavorable structural and institutional dynamics remain a barrier to user-led and controlled services.
Capitalist commodity relations, for instance, produced the nursing home industrial complex – today a $70 billion industry. Institutionalization as national policy, evolved in part from the realization that financing guaranteed an ongoing source of entrepreneurial revenue. Two thirds of nursing homes are for profit businesses. Medicaid funds 60%, Medicare 15%, and private insurance 25%
When a single impaired body generates $30,000-$82,000 in annual revenues, Wall Street brokers count that body as an asset which contributes to a nursing home chain’s net worth. Though transfer to nursing homes and similar institutions is almost always involuntary, and though abuse and violation of rights within such facilities is a national scandal, it is a blunt economic fact that, from the point of view of the capitalist “care” industry, disabled people are worth more to the Gross Domestic Product when occupying institutional “beds” than they are in their own homes.
It is also a national scandal that the horrific conditions in nursing homes have been public knowledge for some time. The saga of private nursing home “care” in the U.S. was carefully documented as early as 1980 by B.C. Vladeck. The commercialized nursing home industry of more than 17,000 facilities back then had deteriorated to the point where it represented a grave threat to the health and well being of its “patients.” Vladeck blamed the government for this state of affairs asserting that it poorly monitored the industry but he also blamed the “financial chicanery” of nursing home operators “whom it seemed were willing to inflict gross indignities on home residents in order to maximize profits.”
So even though the infamous state-run institutions such as Willowbrook in New York have been shut down as a result of exposure in the 60s, little has changed over the past years in terms of respect and dignity under the roofs of private industry-run long term care institutions. There have been a slew of reports documenting nursing home neglect and abuse. A recent congressional report details thousands of incidents and a range of abuses, including instances of nursing home residents being punched, kicked or choked by staff members. Some residents also complained of workers groping and sexually assaulting them. Other abuses include untreated bedsores, inadequate medical care, malnutrition, dehydration and inadequate sanitation and hygiene – all of which can cause death.
One headline from Oct. 13, 2002 from the St. Louis Post Dispatch reads “Thousands are Being Killed in Nursing Homes Each Year.” The mainstream press is far behind the disability movement!
Many disability rights activists certainly have had first-hand experience with the abuse in these euphemistically named” homes” and many do not think that nursing homes can be reformed or that they can ever be a model for good public policy.
There are a host of reasons. Nursing homes are part of an industry that reaps their blood profits from warehousing people who have little or no alternative to institutionalization. Secondly, neither seniors nor younger disabled persons have said that they *want* to live in nursing homes, rather, that is the model thrown at them by the well-endowed nursing home lobby and the Washington politicos in bed with them — and a society which largely accepts this arrangement. But the impetuous among disabled and increasingly elderly persons who bear the brunt of our awful system is towards in home supportive services. Who controls the services, what those services are and how they are rendered are major issues in disabled people’s struggle for self-determination and social membership.
So how might we view a different model of services – one that does not put profits before people – one we might call an emancipation model?
Workers and disabled persons have a common interest in seeing that in-home services replace the bias towards institutionalization. The vast majority of nursing home corporations operate for profit. The profit motive takes dollars away from both quality services and worker take-home pay. To maximize their profits – according to US News some as high as a 20-30% margin of profit — nursing home corporations cut corners in quality of care and keep worker pay low to show their owners and investors as high a return as possible on their money.
Removal of the profit motive is seen by both the National Senior Citizens Law Center and the California Advocates for Nursing Home Reform as an important route to quality care. However, we must also recognize that the same concerns exist when corporations take over the provision of in home services. These corporations charge some states as much as $16.50 an hour and pay the worker little more than minimum wage while corporate managers and owners reap 6-digit salaries and bonuses and disabled persons have little to no say as to what, when, or how services are rendered. This is a corporate agenda, one that exploits both labor and disabled peoples’ bodies for the benefit of the few owners at the top.
In addition, workers themselves become disabled. Many will require long term services as they age. How many nursing home workers would really like to *live* in the institutions they now work for? Or for that matter is there anyone in this room who would like to live in a nursing home? That is a rhetorical question!
A rejection by both disability groups and workers of the corporate “care” paradigm means a rejection of the logic that human labor and disabled people’s bodies must be reduced to commodities for sale – in order that someone can make a buck.
A non-commercial model of in home services could offer a counter paradigm to disablement as a market commodity because there is no profit involved between the worker and the disabled individual. Take away the 20-30% nursing home profit margins and put those dollars to worker pay and more hours of service.
The $30,000 – $82,000 a year spent to unnecessarily institutionalize must be made available for the individual to opt to use that money for services at home.
Our challenge is to use Olmstead and other means to end the national policy bias towards institutions and create more jobs in the community that have the potential to liberate all persons rather than warehouse and reduce them to raw material for the investors and owners of nursing home or home care corporations .
Changing national long-term care policy to an in-home services model that is based on a contract/partnership between government, personal assistants, and disabled or elderly people has the potential to place democratic participation and human rights above profit. Commercial or entrepreneurial interests that depend upon market structures are antithetical to building social relations based on equality. It seems to me that democratic participation requires community stewardship in recognition of our mutual interdependence. We really don’t want a nursing-homes-on-wheels model of services.
Marta Russell can be reached at [email protected] http://www.disweb.org
— Marta Russell Los Angeles, CA http://www.disweb.org