Stuck at the Nursing Home Door
Part I
In November [1999—Ed.], voters in the liberal city of San Francisco approved a $299 million bond issue to rebuild one of the largest publicly run nursing homes in the nation. “Proposition A,” to rebuild the 130-year-old, seismically unsafe Laguna Honda, passed by well over the two-thirds margin needed. It was one of the most expensive bond issues ever approved by the city’s voters.
Laguna Honda is the largest nursing home in California. It’s also the employer of a thousand members of the Service Employees International Union (SEIU) Local 250.
The campaign to rebuild Laguna Honda began two years ago. Backers of Proposition A spent about $700,000 to influence voters to pass the measure, says the San Francisco Examiner, and of that amount, $93,000 came from labor unions.
The political action committee of San Francisco’s FDR Democratic Club of seniors and people with disabilities had come out against rebuilding Laguna Honda. The Independent Living Resource Center of San Francisco, the city’s independent living center, argued for a commitment of “resources to community living options.”
The bond issue exposed a chasm between the goals of the independent living movement and the goals of a union which has only recently gotten involved in in-home services.
Disability activists felt betrayed by the union’s drive to rebuild Laguna Honda. The union had “crossed the picket line,” as one put it. They charge the SEIU, which represents workers in both private and public nursing homes, with “remaining entrenched in institutional-care models of service delivery”; they say the union has a vested interest in protecting union jobs in the institutions.
According to an article in the San Francisco Chronicle, Laguna Honda “is not just a source of jobs to the union. The publicly run center is a model for how unions think workers in this industry ought to be compensated for the unpleasant, often back-breaking chores they perform.”1
The SEIU represents nursing home and “home healthcare” workers in various settings, both in California and across the nation. Recognizing that low worker wages and lack of healthcare benefits play a major role in both the scarcity of attendants and high turnover in this line of work, the SEIU, the World Institute on Disability and California’s independent living centers united in 1992 to force the state to upgrade its In-Home Supportive Services (IHSS), a program based on what the state called the “independent provider” model. The “independent providers” are the attendants themselves; they’re considered self-employed and work directly for the disabled person who hires them. Their pay, which is approved by the disabled person they work for, comes from a combination of federal, state, and county funds, and is usually no more than the $5.75 per hour minimum wage. The important thing about California’s independent provider legislation, say activists, is that it lets people with disabilities select, direct, and terminate their own attendants.
In the mid-1990s, San Francisco, San Mateo, Alameda, Contra Costa, Los Angeles, and Santa Clara counties opted to set up public authorities to serve as the designated “employer of record” for these independent attendants, for collective bargaining purposes. (Sacramento is currently in the process of setting up a public authority as well.) The SEIU became the union for these workers.
Workers at Laguna Honda—“orderlies,” the Chronicle calls them—reportedly make $14 to $15 an hour, “and enjoy a full complement of benefits.”
“Turnover at Laguna Honda is negligible, compared with rates of 100 percent in some private nursing homes,” reported the Chronicle.2
Laguna Honda’s high wages are unusual. Average pay for a nursing home worker is $7 an hour, and few would argue that nursing home aides don’t need better pay. The issue is one of pay parity: that $7/hour average is $1.25 more per hour than IHSS workers receive; $14 an hour is well over double what most inhome workers make.
Seniors and people with disabilities in California today find it almost impossible to find or keep attendants. When nursing home aides can systematically get higher wages than in-home workers, it doesn’t require much analysis to realize that workers will go for the job that pays better. The bulk of both nursing home aides and IHSS workers come from the ranks of high school dropouts, immigrants, single mothers, and waitresses. Many are working two jobs to make ends meet.
Over the last three years, only one county has significantly raised pay for IHSS workers: San Francisco. Last year SEIU Local 250 and disability activists joined forces to demand a fair wage, and last July Mayor Willie Brown signed a $9/hour wage agreement with sixty-five hundred San Francisco in-home workers, with full medical benefits. But the vast majority of the one hundred and eighty thousand workers across the state—serving approximately two hundred thousand people with disabilities—still earn the minimum wage of $5.75 per hour. They get no benefits, no vacation, and no sick pay. In an interview last summer on Los Angeles’ KPFK radio, Democratic Assembly member Gilbert Cedillo, the former general manager of SEIU Local 660, praised the strategic success of unions in getting more money for nursing homes, but failed to mention that IHSS workers had gotten the shaft in the governor’s budget.
Local 660 represents more than forty-two thousand Los Angeles County workers, ranging from librarians to healthcare workers to janitors. Yet Cedillo, a member of the Budget Committee and the Appropriations Committee, didn’t even mention in-home workers.
Local 250 says it agrees that “non-institutional care” must be expanded, and it has worked to raise attendants’ pay in San Francisco. Yet its position paper on the rebuilding of Laguna Honda warned that “we should not make the mistake of assuming that the shift away from institutional long-term care settings to community-based care models will satisfy the dramatically increasing demand for long-term care.”
In testimony before the Senate Special Committee on Aging nearly two years ago, the national SEIU, representing nearly a million nursing home workers across the nation, voiced concern about substandard care at nursing homes. “Our members witness first-hand the abuses that hinder their ability to give nursing home residents the care they deserve,” said SEIU International President Andrew Stern. “Nursing homes are cutting back on staff and supplies at the same time that the number of older, sicker patients entering these homes is greater than ever before.”
Senior groups have in recent years become increasingly vocal about deplorable conditions in nursing homes, yet Stern’s singular focus on jobs and staffing seems reactionary. It ignores the central issue: few people ever want to live in a nursing home. Why does the SEIU not go beyond “reform” and push to progressively change the paradigm of long-term care to the “independent provider” model?
If the average cost is $40,000 a year or more to keep someone in a nursing home (or $90,000 in the case of Laguna Honda), then people with disabilities should be allowed to use that money for services at home. With such an amount, workers can certainly get paid a decent wage—with benefits. Such a move would benefit SEIU’s workers far more than increasing wages in institutions.
The majority of nursing home and home care corporations operate for profit. To maximize profit, they 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. Home care corporations charge the state $16.50 an hour and pay the worker little more than minimum wage.
Corporate managers and owners reap six-digit salaries and bonuses, while workers, paid below a living wage, are given more tasks than they can physically, emotionally, or safely handle. This is a corporate agenda, one that exploits both labor and disabled peoples’ bodies for the benefit of the few at the top.
Disability activist Patrick Connally talks about what he calls “the harvesting of people to fill beds…. Pro-institution professionals justify their lockup of people without an involved family, people who need accessibility, people who talk too much, people who are not the beautiful disabled. All can be safely hidden”—and those who hide them can “gain social status.”
Under this “money model of disablement,” the disabled human being is a commodity, around which social policies are created or rejected based on their market value. […]
Standing strong on principle, Local 250 says it doesn’t support for-profit nursing homes. That can be understood in the context of progressive unions’ accurate perception that the profit motive takes dollars away from both quality care and worker take-home pay. But progressives’ understanding seems to stop at the door of state-run institutions, which are viewed as bastions of liberalist social services and often represent the culmination of long union struggles to organize the state workforce.
Supporters of institutions do so because it’s one way to avert a loss of funding that perpetuates the system which both employs and validates them. But fears about job losses have often diverted organized labor from a longer-range understanding of issues. Unions’ preservation of jobs in logging, for instance, have rammed up against the goals of the environmental movement. As with the environmental movement, labor must understand that it too will benefit by making personal assistance services the dominant long-term care model in the nation. Union workers themselves become disabled; many will require long-term care as they age. How many workers would really like to live in the institutions they now work for?
The same negligence, substandard care, physical and emotional abuse, and rape that unions say occur in for-profit nursing homes also occur in state-run institutions. Abuse is epidemic in all institutions; and in agency-run home care as well. At least with the independent-provider model, people can select and direct their attendant themselves—and fire an unsatisfactory or abusive one.
Promoting social justice for workers means joining the struggle for living wages and health care. Promoting social justice for people with disabilities means advancing real choice to live where one wants, rather than condoning the current system which commodifies disablement for profits, perpetuating institutions to warehouse undervalued members of our society. […]
Part II
The […] 1999 Olmstead Supreme Court decision declared that “unnecessary institutionalization is discrimination” under the Americans with Disabilities Act and directed states to provide services in the “least restrictive environment.” […]
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 dehumanizing 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 have 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 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. […]
The widespread theory of eugenics geared towards what scholar Lennard 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 1840.3
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 otherwise impaired persons.4
Early twentieth 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.”5 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.”6
Although institutionalization reached its peak in the twentieth 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, and 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 percent, Medicare 15 percent, and private insurance 25 percent.
When a single impaired body generates $30,000–$82,000 in annual revenues,7 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 US was carefully documented as early as 1980 by B. C. Vladeck. The commercialized nursing home industry of more than seventeen thousand 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 1960s, 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 October 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 that largely accepts this arrangement. But the impetus among disabled and increasingly elderly persons who bear the brunt of our awful system is toward 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 that 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—according to US News some as high as a 20–30 percent margin of profit. […] The profit motive takes dollars away from both quality services and worker take-home pay. […]
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. […]
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 percent 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 toward 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.