Legal Victories, Economic Defeats

Disabled Americans’right to live and work outside of institutions has been bolstered by laws and court rulings for two decades. Now it faces an implacable foe: the economy.

By Clea Benson, CQ Weekly, September 27, 2010

One evening in July, President Obama invited disability rights advocates and government officials to the South Lawn of the White House to celebrate the 20th anniversary of the Americans with Disabilities Act, which promised a sweeping expansion of civil rights protections to the nation’s physically and mentally impaired. As the sun set, the group sat sedately as Obama talked about how far the disability movement had come since the law was enacted. He also pledged that his administration would step up efforts to enforce the statute and create new opportunities for people with mental and physical challenges to live and work in their communities.

"Equal opportunity to live full and independent lives the way we choose," he said. "Not dependence but independence. That’s what the ADA was all about."

Many advocates said later how disappointed they were that the president didn’t promise more. And by last week, their anger had bubbled over. Several hundred people with disabilities from across the country converged on Washington for three days of protest and civil disobedience, hoping to deliver to both Obama
and Congress their message that government policies are still unfairly — and sometimes illegally — consigning too many of those with disabilities to live in nursing homes and institutions instead of in mainstream housing. About 300, many on motorized wheelchairs, traveled up Pennsylvania Avenue and blockaded 15th Street on the morning of Sept. 20, and some were arrested when they handcuffed themselves to the White House gates. A similar scene played out the next day at the Department of Housing and Urban Development headquarters. And on Wednesday a bullhornwielding group sought unsuccessfully to confront House Speaker Nancy Pelosi at an awards luncheon at the foot of Capitol Hill. Two decades after the ADA became law, and a decade after its sweep was bolstered by a landmark Supreme Court decision, the federal government’s policies on the disabled are at a crucial turning point.

"There are two big areas where we’re still falling short," said Andrew J. Imparato, president of the American Association of People with Disabilities, which advocates for all the estimated 50 million people with some form of disability that affords them protection under the law. "One is letting people live in integrated settings within the community. The other is employment, and they’re related. There aren’t that many people who go to work and live in a nursing home."

A decades-long social movement has upended the once-common view that people who cannot care for themselves because of their physical or mental impairments must live in large facilities with almost no control over their daily activities and little chance of getting an education and a job. The ADA and the Supreme Court’s ruling in a case called Olmstead v. L.C., which declared that people with disabilities generally have a right to live where they choose, rather than in institutions, created a new legal framework premised on the idea that people with disabilities ought be allowed to lead full and independent lives. Fundamentally, that means they have the right to live in their own houses or in small-group homes, even if they require assistance to do so.

But while many people with disabilities have moved out of institutions in the years since the court decision, advocates say the pace has been far too slow, primarily because federal law encourages, but doesn’t require, states to pay for in-home care through their Medicaid programs. Even previous gains are now in jeopardy, they say, as states facing fiscal crises slash independent-living programs to balance their budgets, with sometimes devastating consequences for the disabled. They say the need for federal action is urgent as people who had been living independently are in danger of being sent back to nursing homes.

"Virtually every one of our members reports that things are getting worse, and most of it’s due to the economy," said Kelly Buckland, executive director of the National Council on Independent Living, a group whose members include nonprofit organizations that assist people with disabilities.

States administer most of the programs that support people who need assistance with daily life. Medicaid, the medical insurance program for the poor that is financed jointly by states and the federal government, covers most of the cost. Federal rules, written decades ago, require states to cover nursing home and institutional care or risk losing the federal share of their Medicaid money. But states don’t have to use long-term care dollars to provide home-care attendants or other independent-living supports.

As a result, almost 400,000 people nationwide are on waiting lists for community services covered by Medicaid, a number that has almost doubled since 2002. For many, those services could mean the difference between living in a large group setting or in their own apartments.

"This is a huge problem, the decades-old issue of making nursing facilities and institutions the mandatory default, and home and community services an option that can be eliminated at will," said Mike Oxford, executive director of the Topeka Independent Living Resource Center in Kansas, and one of the organizers of last week’s protests in Washington.

Losing independent-living services may also cost some people with disabilities hard-to-obtain jobs. Only one in five people with severe disabilities is in the workforce, and now the unemployment rate among that group has risen to 15.6 percent.

It may seem simple enough to change Medicaid rules, but the issue is bound up in a complex debate over costs, which pits stakeholders such as nursing home operators and unions representing care workers against people with disabilities. Advocates say providing community support isn’t only the right thing to do, it’s also cheaper than paying for around-the-clock care in an institution. But the Congressional Budget Office says otherwise. Citing cost concerns, lawmakers and the Obama administration decided against taking on the issue as part of the health care overhaul, although in the end the law enacted this spring included some incentives for states to enhance their community services and created a voluntary long-term care insurance program that would pay for community-living support for policyholders.

Some people with a stake in the debate are also pushing back against those who want to dismantle a system built up over decades.

"We do need to be careful,” said Janice Zalen, senior director of special programs at the American Health Care Association, an industry group for nursing home operators. "The fact that people like home and community-based care doesn’t necessarily mean that the other kind of care isn’t also good when it’s needed." But disability rights activists say keeping people institutionalized against their will is an issue of fundamental rights.

"It’s sad to me," said Imparato of the Association of People with Disabilities. "Ten years after Olmstead, we haven’t succeeded in getting people to understand there are civil rights issues involved."

Slow Progress

Advocates for institutional care point out that some people with disabilities are better off, or prefer, living in skilled nursing facilities and institutions, either because they feel more secure in such settings or because they require intensive assistance. But it wasn’t always clear that people with disabilities could choose
where they wanted to live at all. The independent-living movement began to gain momentum a few decades ago with enactment of federal anti-discrimination laws. But it wasn’t explicit until passage of the ADA, which banned discrimination in public programs, that people with disabilities had a right to opt to live in their own homes even when the government was paying for their care.

Justice Department regulations implementing the ADA say states must administer public programs "in the most integrated setting possible." And the Olmstead decision went a step further and established that segregating people with disabilities in institutions could be a form of discrimination. In that case, two mentally disabled women, Lois Curtis and Elaine Wilson, sued Georgia in the mid-1990s to win release from a state hospital where they had been confined for years. Both had been deemed able to live outside the hospital but had been denied release because the state didn’t want to pay for the support services they needed. In 1999, the Supreme Court ruled in the women’s favor, 6-3, declaring that states had to have a reasonable plan for placing people with disabilities in less restrictive settings.

As a result of the ruling, many people have moved out of institutions, but many remain, often against their wishes. About 1.5 million people are currently in nursing homes. An additional 37,000 are in state institutions for people with mental illness and developmental disabilities.

A year ago, in fiscal 2009, 55 percent of all federal Medicaid long-term care money went to institutional care, with the rest going to community-living programs. Five years before, in fiscal 2004, that figure was 63 percent. Still, the results vary widely from state to state; 24 of them still spend at least three-quarters of their federal Medicaid long-term care dollars on institutions. Only 11 states have closed down all of the large institutions they operate for housing people with developmental disabilities, moving the former residents to smaller group homes or their own apartments. Although the trend has been toward shifting people out of institutions and into community care, proponents of "rebalancing" federal dollars say they fear the pressure on state budgets is about to turn the tide in the other direction.

According to the Center on Budget and Policy Priorities, an influential liberal-leaning think tank, 29 states and the District of Columbia already have cut independent-living services for their low-income elderly and disabled residents or passed on some of those costs to those people. Even states that had been among the first to develop supportive services, such as California and Oregon, are now rationing community care.

"States are limiting the number of hours of assistance that people can get, and it’s not enough to provide what they need, so their health status is declining and they’re having to enter into nursing homes," Buckland said.

Meanwhile, progress has been so slow in Georgia, where the Olmstead case began, that the Justice Department sued the state this year. Department investigators found that people were still being wrongfully confined to state psychiatric hospitals, including the same place where Wilson and Curtis had once lived.

"Hundreds of individuals who could and should be served in the community remained institutionalized," Assistant Attorney General Thomas E. Perez, the Obama administration’s point person on ADA enforcement, told a congressional panel this summer. "In addition to this unlawful segregation, individuals in the hospitals are exposed to often dangerous conditions."

The Justice Department maintains that those conditions have resulted in needless deaths, including that of a 13-year-old girl who died after being medicated. Georgia officials and the administration are now in settlement talks.

The suit is one of several the Obama administration has brought against states to enforce the standard dictated by the Supreme Court. The Justice Department has also filed briefs in support of lawsuits brought by people in seven states seeking to get out or stay out of institutions.

Advocates are pleased with this record of enforcement and say it goes far beyond what happened during the George W. Bush administration. Its Justice Department, the advocates say, was more focused on whether people were getting good care in institutions than on getting more people moved out of them.

"I think it is going to take a barrage of lawsuits to give the clear signal, and I think the DOJ position is a clarion call for the states to say, ‘Guys, wake up,’ " said Stephen Gold, a Philadelphia lawyer who specializes in enforcement of the ADA and Olmstead.

Seeking Solutions

The question now confronting the administration and Congress is whether to force states to move people out of institutions by enforcing civil rights laws, or whether to change the Medicaid rules that favor nursing home care and undermine states’ willingness to pay for the services people need to live on their own. "There’s no question in my mind that if Congress amended Medicaid to make home-based services an entitlement the same way nursing home services are an entitlement, you wouldn’t need lawsuits," Gold said.

Advocates say Medicaid rules should be changed immediately. To do otherwise, they say, amounts to cruelty and discrimination. There’s plenty of evidence, ranging from lawsuits to opinion polls, suggesting that many people currently in institutions would prefer living someplace else. AARP surveys show that 90 percent of people over 50 say they would rather be in their own houses than in a nursing home as they age.

Institutional facilities require younger, working-age people, who make up about 12 percent of nursing home residents, to accept the decisions of others about every aspect of their daily lives: whom they room with, when and what they eat, what activities they engage in. "It’s about quality of life for somebody," said Lopeti Penima’ani, 47, a wheelchair user from Utah who joined the protests in Washington last week. Penima’ani, who now lives in his own apartment with assistance, said he has lived in nursing homes and considers them "like jail." He told the story of a friend who was able to marry and have children after she left a nursing home and got her own apartment with a home health aide.

Advocates are pushing legislation, which they’ve dubbed the Community Choice Act, that would require states to pay for community-based services with Medicaid dollars if individuals were eligible for them.

Members of Congress have been introducing similar bills for about a decade, usually with bipartisan support, but the idea has gained little traction because it has become mired in a debate over costs. The most recent test, during the two-year-long debate over the health care system overhaul, suggests that lawmakers still aren’t ready to take that step.

Instead, the new law includes expansions of money for optional programs that make it easier for states to increase independent living services and that tie Medicaid dollars to individuals, allowing them to keep their financial support once they leave an institution. The law created a new system of voluntary
long-term care insurance that would cover community living.

But according to Tom Harkin, the Iowa Democrat who chairs the Health, Education, Labor and Pensions Committee and is the chief Senate sponsor of the Community Choice Act, cost concerns have made it impossible to move forward. The principal House sponsor is Illinois Democrat Danny K. Davis. Neither measure has advanced at all in this Congress.

Woodwork Effect

Those costs are a consequence of what’s known in congressional budget circles as the "woodwork effect" — because the number of potential beneficiaries would surge into public view if the policy were changed. The average annual cost of nursing home care is about $67,000 per person, while the average annual cost of providing care services at home is only $17,000 for a person who uses 17 hours a week of low-skilled assistance, a typical amount.

But the CBO, which is the official arbiter of legislation’s estimated cost, believes it would be more expensive to make such a shift to home care mandatory, largely because its analysts expect that more people would demand publicly financed care if they knew they could get it without going into a nursing home. Many people with disabilities rely on unpaid family members to care for them at home, and analysts predict that those people and their families would rather pay someone else using public dollars to provide the care.

Two years ago, the CBO said making the change would cost an extra $90 billion over a decade. That would be just the federal share of costs. Even if the federal government increased the share of long-term care costs that it paid, states would still incur increased costs to cover more people. Outside studies of the effects on enrollment when states increase home-care services have shown only a limited effect. Nonetheless, the question remains unresolved.

Harkin said the CBO isn’t taking into account the contributions to the economy that people with disabilities can make when they are more independent. He cited the example of his nephew Kelly, a paraplegic and Navy veteran who has been able to get a job because he has in-home support services covered by the Department of Veterans Affairs. "OK, they come out of the woodwork,
but then they get a job," Harkin said. "They get a job, they pay taxes." CBO analysts, he said, "don’t take that into account."

At the same time that Harkin and advocates for people with disabilities make that case, though, there are interests pushing back against creating an entitlement for community care. The American Health Care Association, the group representing nursing home companies, hasn’t taken a position against the Community Choice Act, but the organization points out what it views as the downsides.

"We definitely believe that people should have choices, and we are strong supporters of community care, but not necessarily because it’s cost-effective," said Zalen of the American Health Care Association. "We think it might not be."

Nursing home operators have argued that changes to federal policy that cut their share of Medicaid dollars would potentially jeopardize the quality of nursing home care that many Americans still depend on. "In any setting, you need to have the right amount of funding," Zalen said. "We worry because you have people that leave the nursing facility, and that’s fine. But they may need to come back."

Nursing homes aren’t the only ones questioning the trend toward independent living. In some places, parents of adults with developmental disabilities have protested plans to close state institutions and move their residents to group homes or apartments. Those parents have grown comfortable, over decades, with the care their children get in larger settings and are reluctant to try an untested alternative. Unionized employees who work in some of those institutions have also raised questions about whether they will be replaced in group homes with cheaper, untrained labor.

Some advocates for people with disabilities concede that they still need to build support among these constituencies. "In addition to making sure families feel comfortable that community integration is not going to mean less safety, or less care for their loved ones, realistically we have to look at the other side of the jobs equation and make sure the jobs are well-paying, good benefit jobs," said Eric Buehlmann, director of public policy at the National Disability Rights Network.

Raising Awareness

Short of requiring states to pay for community services through Medicaid, some supporters of community living say the incentives to move in that direction in the health care law will have a significant impact.

Starting next year, states that opt to allow Medicaid beneficiaries with disabilities to choose where they live will get a 6 percent increase in federal matching aid, language Harkin inserted into the health care overhaul.

"That is not insignificant," Harkin said, but at the same time he acknowledges that activists need to keep up the pressure for more-extensive measures. "They keep a focus on the injustice and the unfairness of this," he said.

Some within the disability rights movement believe the major obstacle they face is that many, including those who run state governments, don’t see the issue as being about fundamental rights. "We have not been successful at getting the average state legislature and the average state governor to think about services for people with disabilities in civil rights terms," Imparato said. “They think about it in terms of service delivery.”

That may be why some members of the disability activist community are engaging in the time-honored tradition of civil protest. Oxford, the Kansas activist who helped organize last week’s demonstrations, said that if the tactics mirrored those of the 1960s, so would federal policies that make institutional
care the default. "It might have made sense in 1965," he said. "Now, it doesn’t."

Go to Health/LT Svrcs

Go to Home Page

Go to Top of Page