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.