A Senate health committee issued a disturbing report nearly three years ago: In sharp contravention to the Americans with Disabilities Act and a landmark 1999 Supreme Court ruling, many states were warehousing patients with serious but manageable illnesses such as diabetes, blindness and mental illness in nursing homes.
Frequently, this was being done against the patients’ will.
Instead of spending available federal and state Medicaid funds on community-based or home care to handle these patents, a majority of states were using the more expedient and less costly option of sending them to nursing homes, many of which had empty beds and were eager for the business.
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The Senate Health, Education, Labor and Pensions Committee revealed in the July 2013 report that roughly 250,000 working-age people were needlessly placed in often isolated nursing homes. Between 2000 and 2007, nursing home use actually increased among adults age 31 to 65 in 48 states, according to the report.
“This is amazing given that study after study has shown that home and community-based care is not only what people want, but is more cost-effective,” then-Sen. Tom Harkin (D-IA), the chief author of the 1990 Americans with Disabilities Act, said in releasing the report.
The Supreme Court held in the 1999 Olmstead case that the ability to live in the community is a protected civil right under the 1990 Americans with Disabilities Act. “Yet my report reveals that 14 years later, many states are still not making a commitment to provide all individuals with disabilities the choice to live in their own homes and communities,” Harkins added.
Fast forward to today, and things haven’t changed all that much.
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On Monday the Department of Justice issued a scathing analysis of South Dakota’s health care system. The government found that thousands of patients were being held unnecessarily in group homes and nursing facilities.
“Regardless of their age, people with disabilities deserve privacy, autonomy and dignity in their everyday lives,” Principal Deputy Assistant Attorney General Vanita Gupta, head of the Justice Department’s Civil Rights Division, said in a statement. “Our findings reveal how South Dakota’s current system of long-term care violates federal law and fails to give people with disabilities the choice to live in their own homes and their own communities.”
South Dakota Gov. Dennis Daugaard told The New York Times that his state has made progress but that the task is challenging, especially in a sparsely populated state in which many elderly and disabled people are widely dispersed in rural areas that lack community-based or in-home health care.
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But the Justice Department says that South Dakota officials have fallen well short of what they could do to ameliorate a problem they have known about for years. The state’s budget provides some insight into officials’ priorities in treating the physically and mentally disabled: In 2013, South Dakota spent $133 million on nursing homes but only $27 million on in-home or community-based care, according to state figures cited in the Times.
To its credit, the Obama administration has opened more than 50 civil rights investigations into cases of patients being forced into nursing homes and so far has reached settlements with eight states. The Justice Department says those efforts have led to more than 53,000 disabled people either leaving nursing homes or avoiding them altogether.
The U.S. nursing home industry currently has more than 1.7 million beds and provides essential, round-the-clock care for many elderly or chronically ill patients suffering from Alzheimer’s disease, serious heart and respiratory illnesses and other ailments and injuries. Yet for many others who suffer from chronic illness and disabilities, placement in a nursing home is neither necessary nor appropriate. When low-income patients seek help in obtaining long-term care, some states push them toward nursing homes.
The Times analysis offered several poignant glimpses into the plight of disabled Americans who were forced to move to nursing homes. One 45-year-old South Dakotan with diabetes told a Justice Department investigator that he badly wanted to be home with his wife and daughter, but was confined to a nursing home because he needed assistance getting around his house with one leg.
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And a 73-year-old man in a wheel chair told investigators that he was in a nursing home against his will. “Some of these places are warehouses,” he told an investigator.
