Numerous initiatives by Congress, federal agencies, and mental health advocates have greatly expanded access to community-based treatment for people with serious mental illness in the 11 years since the Supreme Court required such alternatives for qualified people in institutional care. But some observers warn that those efforts are stagnating or even receding.
The Supreme Court's 1999 Olmstead v. L.C. decision declared that "unjustified institutional isolation of persons with disabilities is a form of discrimination" under the Americans With Disabilities Act (ADA) and obligated states to serve those individuals in the most "integrated" setting possible. Since then, mental health advocates have sought to move most people with serious mental illness out of institutional settings and into community treatment where they would have opportunities to work, socialize, and move freely in society.
Those efforts have resulted in community-based treatment and assisted-living programs throughout the country that usually cost states much less than the institutional programs they succeeded, according to Robert Bernstein, president and director of the Bazelon Center for Mental Health Law.
"Through local programs providing flexible, individualized services and supports to people in their own homes, individuals who were once relegated to isolated custodial settings now fulfill the vision of the ADA," Bernstein said at a June Senate oversight hearing on Olmstead progress.
Those "positive outcomes" have come, in part, as a result of lawsuits by patient advocates, such as Bazelon, and the Department of Justice that have sought to force states to offer such community-based care for their institutionalized populations (Psychiatric News, July 2).
Additionally, Congress has increasingly channeled federal health care funding toward community-based care. For example, the share of Medicaid funding for long-term care devoted to community-based services has increased from 27 percent in 1999 to 45 percent in 2009, according to Cindy Mann, deputy director of the Centers for Medicare and Medicaid Services. Likewise, overall federal funding of community-based treatment and supports, such as housing and job placement, has grown from $17 billion in 1999 to $52 billion in 2009.
Although federal officials and advocates celebrated the placement of a growing number of people in community-based treatment settings, continued movement toward such care for most people with serious mental illness is slowing, according to advocates. One indicator of this is the growing number of people on waiting lists for home- and community-based services, which grew from 200,000 in 2002 to 393,000 in 2008 (the most recent year for which data are available), according to Kaiser Commission on Medicaid and the Uninsured.
Advocates for people with mental illness worry that resistance to further progress in moving people to local care settings is strengthening.
"Much more at the forefront of our advocacy in pursuit of community integration for people with serious mental illness is the task of deconstructing the systemic barriers and challenging the vested interests that sustain segregation and low expectations," Bernstein told senators at the hearing.
For example, "We find psychiatric hospitals remain open because they are big employers," Bernstein said about the economic incentive states have for continuing and even adding to state-run institutions.
Likewise, a drop in state financial support in recent years was lamented by Sen. Al Franken (D-Minn.), who criticized the state and local governments in Minnesota for moving patients from small group homes back to private institutional settings as a purported money-saving effort.
"They reduced [staff] hours and reduced care, and they did this to save money," Franken said about the private institutional facilities.
Re-energizing the push for community-based care will take concerted legal and legislative initiatives, said mental health advocates.
The Department of Justice is committed to "helping more people access community-based services" by making Olmstead enforcement a "top priority," said Thomas Perez, assistant attorney general in the Civil Rights Division. In the last 18 months, the Department of Justice has undertaken Olmstead-related legal action in 10 states, while also changing its approach to investigations of institutions. In the past, Justice officials enforcing the Civil Rights of Institutionalized Persons Act merely investigated whether institutions were safe, but now they also ask whether they house patients who "could appropriately receive services in a more integrated setting," Perez told senators.
The other half of the "carrot and stick" approach to encouraging states to move further toward the use of community-based care, said Sen. Tom Harkin (D-Iowa), chair of the Senate committee with jurisdiction over much of the issue, are provisions of the Community First Choice Act (S 683), which were included in the health care overhaul law. Beginning in October 2011, the measure will disburse federal matching funds to states to cover "personal care services" that help people in community-based care live independently.