WASHINGTON — When patients in
South Dakota seek help for serious but manageable disabilities such as
severe diabetes, blindness or mental illness, the answer is often the
same: With few alternatives available, they end up in nursing homes or
long-term care facilities, whether they need such care or not.
In
a scathing rebuke of the state’s health care system, the Justice
Department said on Monday that thousands of patients were being held
unnecessarily in sterile, highly restrictive group homes. That is
discrimination, it said, making South Dakota the latest target of a
federal effort to protect the civil rights of people with disabilities
and mental illnesses, outlined in a Supreme Court decision 17 years ago.
The
Obama administration has opened more than 50 such investigations and
reached settlements with eight states. One investigation, into Florida’s
treatment of children with disabilities, ended in a lawsuit over
policies that placed those children in nursing homes. With its report
Monday, the Justice Department signaled that it might also sue South
Dakota.
While
the administration has received widespread attention for investigating
police abuses and supporting the rights of gay and transgender people,
the Justice Department has also steadily made these cases part of its
civil rights agenda. The government says that those efforts have allowed
more than 53,000 Americans with disabilities to leave institutions or
avoid them altogether. It is a small number compared with the 250,000
working-age people
who are estimated to be needlessly living in nursing homes, but advocates say the federal campaign has had significant effects.
“There
has been as much of a revolution in enforcing disability rights since
2009 as there has been for any other group in the county,” said Talley
Wells, a disability lawyer with the Atlanta Legal Aid Society.
There
are more than 1.7 million nursing beds in the United States, and many
Americans require round-the-clock care and the protection of a nursing
home. But for untold numbers of others — with mental illnesses,
developmental disabilities or chronic diseases — the confines of a
nursing home can be unnecessarily isolating. Yet when patients seek help
paying for long-term care, states often steer them toward nursing
homes, even though it may not be needed.
One
45-year-old South Dakota man with diabetes told Justice Department
investigators that he wished he could be at home with his wife and
daughter, but was in a nursing home because he needed help moving around
his house on one leg.
A
73-year-old man in a wheelchair told investigators that he was in a
nursing home against his will. “Some of these places are warehouses,” he
said, according to the report.
With
help, the Justice Department said, such people could live at home, hold
jobs and lead productive lives. Instead, they are confined and
segregated from society. Many cannot leave the grounds of their
institutions without supervision or perform tasks such as shopping for
groceries or cooking meals. One resident told investigators that when
friends visited to take him for a car ride, “they have to sign me out,
like a kid.”
“These are real
issues that more and more people are going to be confronting with our
graying population,” said Vanita Gupta, the Justice Department’s top
civil rights lawyer.
The Justice Department’s efforts are rooted in a 1999 Supreme Court decision,
Olmstead v. L.C.
The court ruled that, unless a nursing home is medically necessary,
people have a right under the Americans With Disabilities Act to receive
care without being segregated from society. Advocates for the disabled
have compared that ruling to Brown v. Board of Education, which declared
racial segregation in schools unconstitutional. As was the case after
that decision, however, change was not immediate.
President
George W. Bush issued an executive order in 2001 telling the federal
government to work with states to meet the Supreme Court’s decree.
During his administration, the Justice Department opened several cases
over the living conditions in public nursing homes.
Under
President Obama, the department changed its strategy. Rather than
focusing on living conditions, the authorities asked whether residents
should be confined in the first place.
Since then, officials have created a new body of civil rights law. Rhode Island
agreed to end
a decades-old system that had kept people with developmental
disabilities segregated in adult day programs and to help them find
jobs, rather than confining them to low-paying workshops. Oregon
did the same
last year. The Justice Department has filed documents on behalf of
children with mental illnesses in West Virginia and people with
developmental disabilities in Indiana.
States
have been trying for years to increase in-home care, which is often
cheaper than putting someone in a nursing home. “What we’re seeing now
is the feds’ involvement, and the courts’,” said Debra Miller, director
of health policy for the Council of State Governments. “States are all
looking to move in this direction. It’s just a question of how fast you
can go.”
Dennis Daugaard,
South Dakota’s governor, said that his state had made progress but that,
with such a sparse population, it faced problems not shared by more
urban areas.
“Ideally, we
want elderly residents and people with disabilities to be able to stay
in their communities and receive the services they need without going to
a nursing home,” Mr. Daugaard said in a statement. “That can be a
challenge for a state like ours, which is made up of rural communities.”
The
Justice Department, however, said South Dakota was not trying hard
enough to address a problem it has known about for years. In 2013, it
spent $133 million in Medicaid money on nursing homes and $27 million on
in-home care, the department said.
In-home
health aides can be less expensive than nursing homes because they do
not provide unnecessary services. States, though, face a chicken-or-egg
conundrum. Does money go to nursing homes because beds are often more
readily available than in-home services? Or are there fewer in-home
services because less Medicaid money is spent on them? And nursing homes
have little financial incentive to encourage patients to seek in-home
care, Ms. Miller said.
Mr.
Wells, the Atlanta lawyer, said the legal fight was both shaping public
opinion and reflecting it. A few years ago, when the Justice Department
began aggressively taking on state governments, “you could just feel
this movement,” he said. He added that patients deserved options that
allowed them to remain part of society.
“It’s
what all of us would want for our family members,” he said. “When we
need that level of service, do we want that in our homes or do we want
that in an institution?”
Full Article & Source:
South Dakota Wrongly Puts Thousands in Nursing Homes, Government Says
