Moving ahead with Olmstead: to comply with the Americans with Disabilities Act, states are working hard to find community placements for people with disabilities.

• Author: Donlin, Johanna M.

Elaine Wilson and Lois Curtis wanted their freedom. After living in a state psychiatric hospital for several years, they wanted Georgia to provide their long-term care in the community. They felt isolated and knew they were physically and mentally capable of living in society with certain supports, despite mental retardation and schizophrenia. The state said it couldn't do that. There were no services available, and a tight budget limited Georgia's ability to accommodate their requests.

So, with the Americans with Disabilities Act (ADA) in hand, Elaine and Lois marched all the way to the U.S. Supreme Court to plead their case, Olmstead vs. L.C. (1999), and won. The Court stated that isolation of people with disabilities is a form of discrimination under the ADA. States must provide services in the most integrated setting possible, appropriate to the needs of qualified people with disabilities. The ruling directs states to make "reasonable modifications" in programs and activities. Modifications that would "fundamentally alter" the nature of services, programs or activities are not required.

As a result, the federal government encourages states to plan for reforms not only in the health arena, but also in transportation, housing, education and other social supports that can help people with disabilities live in a community.

An unfunded judicial mandate of this magnitude creates a daunting task for state policymakers. Three years have passed, and states continue to struggle with how to interpret and apply the Olmstead decision.

MEDICAID'S INSTITUTIONAL BIAS

Because Medicaid is the primary funder for long-term care and covers a large number of people with disabilities, many states focused their initial efforts on how Olmstead affects Medicaid budgets. "Medicaid's the appropriate starting point," says Allan Bergman, president and CEO of the Brain Injury Association of America. "There are significant Medicaid dollars currently supporting people with disabilities, and policymakers need to look there first."

In fact, more than 35 percent of all Medicaid spending goes to longterm care services. Institutions get the lion's share--about 71 percent in 2001. Many refer to this lopsided distribution as the "institutional bias." Although every state has a variety of waivers to provide community-based services, the vast majority of funds continue to support nursing homes or other institutional settings.

"Medicaid creates an inherent institutional bias because it provides an entitlement to a skilled nursing facility, while allowing states the option to offer personal care services or home and community-based services through a waiver. Olmstead moves away from that bias and presumes people should be in the community first," Bergman says.

STATES FOCUS ON CHOICE

Under the Court decision, states can no longer provide long-term care only in an institution, if a person's needs can be met in the community, with a few exceptions. Senator Bernest Cain, chair of Oklahoma's Senate Human Resources Committee and co-chair of the new Olmstead committee, sees the need to offer different options. "I've always seen Olmstead as an opportunity to give people choices. Let them make their own decisions about the kind of services they need and want. But, those choices need to be in an educated environment, where people fully understand all their options."

Following a 2001 interim study, Oklahoma passed legislation that created a legislative Olmstead committee. Forty-two states plus the District of Columbia have...