Brent Kaderli has a wheelchair-accessible van waiting in the driveway, a hospital bed in a spare bedroom and an electric lift that’s left unused. If the 30-year-old quadriplegic had his way, he’d be living here, in his father’s house, with help from aides. Instead, he is in an institution, hoping each day for a place that feels more like a home.
Fifteen years after a landmark Supreme Court ruling that the disabled should be given the choice to live outside nursing homes, mental hospitals and other institutions, its legacies are dueling. Progress has been made in every state to keep more aged and disabled people in their homes and communities, but only half of Medicaid spending goes to such care, with the services routinely denied by a system that favors institutions even though they’re typically more expensive to taxpayers.
Kaderli said Medicaid approved him for only three hours of at-home daily care, but he’d need at least six to get by while his father is at work. So he lives in a nursing home in Pasadena, Texas.
“It sucks and it’s sad and it’s depressing,” said Kaderli, who was paralyzed in a 2006 car crash and had his legs amputated after the wreck. “I wish I was somewhere else every day.”
In the June 22, 1999, decision in Olmstead v. L.C., the justices ruled that unnecessarily segregating people with disabilities in institutions amounts to discrimination under the Americans with Disabilities Act if they can be cared for in more home-like settings. Advocates for the mentally ill, older people and the physically disabled regularly cite the ruling, but it has limitations. It says individuals should be “reasonably accommodated,” specifically noting “the resources available to the state,” caveats that have made it difficult to assess compliance and that have fueled widely different outcomes around the country.
Nationally, the share of Medicaid long-term care spending that went to home and community services was 28 percent at the time of the ruling, according to a Department of Health and Human Services report. By 2012, the latest year for which data were tallied, the figure had risen to 50 percent, according to the Centers for Medicare and Medicaid Services. Every state has increased its allocation to non-institutional services, but the allocations range from 78.3 percent of Medicaid spending in Oregon down to 27.4 percent in Mississippi and New Jersey.
The ruling offers no guidance on the allotment of funds. Many advocates argue that states could allow all individuals to be treated at home or in community-based settings such as group homes. The industry says there will always be some people who require or prefer institutional care.
“States determine where they are going to put their resources, and in some states and some communities they continue to make the decision to support a higher number of individuals in facilities,” said Sharon Lewis, a special adviser on disabilities to Health Secretary Sylvia Mathews Burwell. “We at the federal level can encourage and incentivize and support, but ultimately Medicaid expenditure decisions are a state decision.”
Institutional care remains the default in Medicaid, and getting beyond it is cumbersome. Waivers must be obtained for alternative care, such as in-home services, and some states have lengthy waitlists. Nationally, more than half a million people were on waiting lists in 2010 for Medicaid-provided home and community care waivers, according to a report from the Kaiser Family Foundation, a nonprofit that analyzes health policy issues.
“The way people are treated in modern society, in our society, to me is still shocking,” said Sue Jamieson of the Atlanta Legal Aid Society, the lead attorney on behalf of the two plaintiffs in the 1999 case, who sued then-commissioner of the Georgia Department of Human Resources Tommy Olmstead. “We still treat people in so many ways as less than human.”
Medicaid is the leading payer of long-term care, spending $140 billion on it in 2012. To make non-institutional services a right across states rather than an option for eligible Medicaid recipients, legislators would have to approve a change in federal law.
Sylvia Waring, 45, of Philadelphia, entered a nursing home in 2011. She has multiple sclerosis and uses a wheelchair, and her care costs Medicaid $355 daily. She is suing for services in her own apartment, where lawyer Stephen Gold believes costs would be cut by half or more.
“It doesn’t make much sense to me: They’re always talking about money, money, money,” said Waring, a former cafeteria worker. “It feels like I’m being prosecuted because I was sick. I just need a little bit of help.”
Medicaid paid an average of $225 per person per day in 2012 for those receiving institutional care, according to CMS figures. Among those receiving waivers for home and community care, the average cost was $125 daily. Home care is generally cheaper because most people don’t require round-the-clock care, but some worry that making more non-institutional services available will prompt a flood of people to seek them and increase costs.
“Everyone knows the state will save a fortune by providing home and community services,” said Gold, who has represented individuals around the country trying to get out of nursing homes. “The problem is a political one. By and large, this is a business, and disabled people are cash cows.”
After her release from a psychiatric hospital, Olmstead plaintiff Lois Curtis slowly gained back her ability to complete basic tasks — cooking, picking out clothes, shopping. Today, Jamieson said, her former client lives in her own apartment and goes to a studio each day to work on her art. She even made a trip to the Oval Office and presented one of her paintings to President Barack Obama.
The other plaintiff, Elaine Wilson, died in 2005. She said being released from a mental hospital was like being free again.
“I felt like I was in a box that I would never get out of,” she said in 1999. “I feel like a real person again.”