The Nursing Home Nightmare: An Issue that Touches Us All
How would you feel if, as a result of a sudden disability or old age, you had to place a loved one in a nursing home?
Chances are, you would do everything you could to prevent it; lend them money, take time off from work to care for them or invite them to move in with you. The impending retirement of millions of Baby Boomers has forced many Americans to reckon with this difficult issue.
But seniors are not the only ones living in these institutions. Many young and middle-aged people with physical and mental disabilities are also forced to live in nursing homes because of limited financial resources and even more limited community-based options.
For the fortunate few with the means to provide for their housing, transportation, and personal care regardless of their employment status, institutionalization is beyond contemplation. But for more and more Americans it is a nightmarish inevitability.
A Case Study: Laguna Honda Hospital, San Francisco
San Francisco's Laguna Honda Hospital is, perhaps, the best example of the abuses that have come to typify nursing home care. Forty-six percent (46%) of its residents are under the age of sixty. In 1999 when the city passed a bond measure to modernize Laguna Honda, the largest nursing home in the nation with over 1200 beds, there was a hue and cry of opposition in the aging and disability communities.
Advocates noted that the institution was a model of human abuses and mismanagement common to nursing homes in California and elsewhere. Indeed, the abuses at Laguna Honda were so severe that state and federal authorities threatened to stop funding it, hence the need for local bond revenue.
While the ballot language supporting the bond stated that "[t]housands of San Francisco families have depended on Laguna Honda Hospital to provide compassionate medical care for elderly or disabled family members," the care at Laguna Honda has been anything but compassionate.
In a scathing, 138 page report issued subsequent to an investigation undertaken with the U.S. Department of Justice, The Health Care Financing Administration described the hospital as a hell-on-earth for its residents that failed to meet its obligations to patients in almost every area of responsibility.
Violations included:
News reports revealed that residents at Laguna Honda were neglected in other ways as well. Many were found languishing in their own feces or urine for hours at a time. Others contracted extensive and/or infected bedsores as a result of staff failure to rotate them at regular intervals. One resident, Michael Kwok, noted that "I stayed there 16 months and there wasn't rehabilitation - No one asked me what I wanted. I was thinking of suicide." Kwok, it should be noted, eventually convinced hospital staff he should be allowed to move out and has lived in an apartment for over a decade since his release.
The regularity of nursing home horror stories in 1999 prompted local Assemblyman Kevin Shelley to author legislation (Assembly Bill 1160) to strengthen nursing home oversight.
According to Disability Rights Education and Defense Fund (DREDF) none of the modernization funded by the $300 million general obligation bond addressed these medical and civil rights concerns. DREDF and groups like Independent Living Resource Center of San Francisco (ILRCSF) noted that even with funding at $10,000 per bed per month, many of the residents at Laguna Honda would remain "warehoused", continuing to live in substandard conditions and fearing for their safety.
If Laguna Honda can thrive and expand in the Bay Area, the heart of the Independent Living Movement and the most disability-conscious region in America, this kind of nursing home environment can certainly exist in your community as well.
Unnecessary Segregation of the Elderly and Disabled: At Odds with the Law
Conditions in nursing homes like those at Laguna Honda, not only threaten the safety, sanity and well being of residents, they are also illegal.
In the 1999 case of Olmstead v. State of Georgia, the Supreme Court held that under the Americans with Disabilities Act of 1990 (ADA), residents of nursing homes are entitled to care in the "most integrated setting" available. The High Court rejected arguments by the State of Georgia that it had no choice but to keep two cognitively impaired twins locked in a state facility because it didn?Äôt have the money to fund community based care. Justice Ginsberg wrote, "unnecessary institutional segregation constitutes discrimination per se, which cannot be justified by a lack of funding."
Yet, in the two years since the Olmstead decision, state and federal governments have done little to redirect funding to community services or transition those who don't belong in nursing homes to less restrictive community-based alternatives.
What Government is Doing About Nursing Homes
California has established an interagency task force to address the long term care issue. Dubbed the California Long Term Care Council, it has yet to offer a clear policy to reduce the number of persons currently languishing in nursing homes who don?Äôt belong there. Nor have they addressed the types of violations uncovered at Laguna Honda.
President George W. Bush signed Executive Order No. 13217 in June, which called on states "to place qualified individuals with mental disabilities in community settings, rather than in institutions, whenever treatment professionals determine that such placement is appropriate." But, there has been no significant exodus of residents from nursing homes to date.
The Bush Administration's most significant action toward nursing homes has been to deregulate them. In September 2001, the New York Times noted that the president's current so-called Nursing Home Quality Initiative will reduce the frequency of federal nursing home inspections (currently no less than once every 15 months). Claiming current penalties for violations are "too harsh" and "inflexible", the administration's plan will lessen them. The overwhelming majority of nursing homes, some 17,000, are subject to federal regulation because they receive Medicaid and Medicare dollars. As a result, the loosening of regulations will likely lead to more abuse and do nothing to increase consumer choice in the care they receive.
Community-Based Care: The Money Should Follow the Consumer
California ranks in the bottom 10% of states in terms of its commitment to community based care. More than 35 other states cover "assistive living," paying for individuals to receive services in their own home or in small group settings, while California continues to favor large, costly institutions like Laguna Honda. The state is only just beginning to tackle this issue.
Our state and federal governments must ensure that civil rights of consumers are protected and that violations like those at Laguna Honda are no longer commonplace. Consumers must truly have a voice in the services they receive. It is time that community and home-based care become the rule, not the exception.
All of the services provided in nursing homes are available, to varying degrees in local communities. These include accessible housing and transportation, durable medical equipment and technical support, cognitive training and consumer-controlled service coordination. In smaller and more rural communities where these services may not be readily available, redirecting government funding to communitybased services will create a market for them and improve the overall network for community-based care. Stimulating more comprehensive service provision outside the nursing home in local communities is a key secondary benefit of assisted living and community-based care.
Most importantly, just because certain individuals have impaired functions doesn't mean they should have their lives taken away. One middle class senior, who finally depleted her life savings and ended up in a nursing home due to her reliance on Medicaid, commented that her nursing home felt "more like a hospital than a home."
Alternatives to Nursing Homes: Successful Models Do Exist
There are various models of community based care that are highly effective, each of which is less intrusive and less costly than institutional care. Examples include:
Co-operative housing fosters cross-disability coordination as well. For example, a cognitively impaired resident may provide assistance to one who has a mobility impairment, while that person may help another resident who has difficulty reading as a result of a brain injury.
Like the in-home care model, co-operative living benefits the community by creating markets for the services previously provided in nursing homes, decreasing reliance on large expensive facilities and generating local support for similar solutions.
CONCLUSION
In 1997, California's Little Hoover Commission reported that citizens seeking long-term care face "a bewildering maze of policies, bureaucracies and programs [that] skew decisions toward high-cost, less consumer-desired solutions. The result is consumer confusion, costly choices and premature erosion in the quality of life for many individuals."
With the state's senior population expected to more than double in the next two decades and an ever-increasing number of persons with disabilities, the time has come to take action.
California's public policy of relying on nursing homes as the primary means of long term care is not only a failure, it affirms our government's indifference toward seniors and people with disabilities. It is high time the government show its commitment to these citizens by giving consumers a choice in the care they receive and end the practice of herding them into places like Laguna Honda that were designed to provide minimal care at the lowest possible cost.
Ensuring that community-based services receive adequate funding will require the able-bodied and disabled to join together to fight for this important issue. We all run the risk of ending up in a nursing home unless we work together to change public policy regarding long term care now.
To learn how you can get involved in local efforts to improve funding for community-based services contact your local Independent Living Center or call CFILC at (916) 325- 1690, TDD (916) 325-1695, Fax (916) 325-1699