Testimony of Robert Bernstein Before the United States Senate Committee on Health, Education, Labor and Pensions
Bazelon Center executive director Robert Bernstein presented the following testimony at the commitee's hearing on June 22, 2010. In a more extensive statement, he described specific failures - and some successes - in the nation's efforts to vindicate the Olmstead rights of people with disabilities.
Mr. Chairman and Members of the Committee, I am pleased to testify before you today about the Americans with Disabilities Act (ADA), legislation that is crucially important to people who have mental illnesses. My name is Robert Bernstein and I am the president and director of the Bazelon Center for Mental Health Law, which has advocated for the rights and social inclusion of people with mental disabilities for almost four decades. I began my work as a psychologist in public mental health, where I learned first-hand how law and policy define—or foreclose— opportunities for people with mental illness, particularly those who must rely on public systems.
From the ADA’s inception, the Bazelon Center has worked to make sure that its protections include people with mental disabilities, and we continue to advocate in the courts, with legislative bodies, and with federal and local agencies to ensure that it has its intended impact. No group of disabled Americans has been subjected to more harmful and enduring discrimination than people with serious mental illness. Hundreds of thousands of these Americans were once physically segregated behind the locked doors of huge abusive state hospitals, based on fear, disdain or the perception that there were no viable alternatives. In many ways, that history remains alive― in nursing homes, board-and-care facilities and jails across the nation.
The ADA represents a very ordinary vision, but one that dramatically departs from this history: A vision that people with serious mental illness have homes they can call their own and participate in society as neighbors, friends and co-workers, and that they are judged as individuals, untarnished by shaming stereotypes. Of course, a bold act of Congress—even when bolstered by the Supreme Court’s landmark Olmstead decision—does not instantly reverse discrimination that is embedded in society and reflected in its institutions. But on this 20th anniversary of the ADA’s enactment, I am happy to report that we have at last begun to think about mental disability and the role of public systems in very different ways. Nationally, we see examples of programs demonstrating that people with serious mental illness can recover, live in their own homes outside of psychiatric ghettos and not be regarded as “ex-mental patients.” Scattered-site supportive housing is a powerful model. Through local programs providing flexible, individualized services and supports to people in their own homes, individuals who were once consigned to isolated custodial settings nowfulfill the vision of the ADA. Generally, this is achieved at costs that are lower than, or at most equal to, institutional care. These individuals not only realize their personal dreams but, by example, demonstrate that the ambitious goals of the ADA are achievable, even among a group as derided as people with serious mental illness.
Our challenge today is not so much know-how as it is deconstructing the systemic barriers and vested interests that sustain segregation and low expectations. Large state hospitals may be relics of the past, but many people with serious mental illness remain on the margins of society because supportive housing and other good programs are in short supply. Often, access to these programs is targeted to groups that have been visibly failed by human service systems—people with frequent hospitalizations, or those who are homeless or incarcerated, for instance. However, many more people with serious mental illness languish in archaic facilities, such as nursing homes, group homes and the infamous “adult homes” in New York City that a federal court recently declared in violation the ADA.
Such facilities may be physically located in communities, but they are not at all what one would consider homes. The residents remain isolated from community life and they have no privacy, no meaningful personal choice, and no hope for something better. Their rights under the ADA notwithstanding, individuals living in these settings are often mischaracterized by public systems as “successfully placed” because they are no longer in hospitals. And in the absence of litigation, they are no one’s priority. For this reason, the Bazelon Center is working closely with the U.S. Department of Justice toward vigorous enforcement of Olmstead and to ensure that its benefits extend to all people with serious mental illness, including those who remain hidden on the sidelines. We are also working closely with the Centers for Medicare and Medicaid Services to extend to people with serious mental illness initiatives, such as Money Follows the Person, that have promoted Olmstead outcomes for other disability groups. We are grateful for support from SAMHSA that allows us to provide technical assistance to states around Olmstead implementation. And one potential source of funding for the services we seek is the SAMHSA Mental Health Block Grant, which needs to be restructured to be more targeted and to focus more directly on the ADA as a priority.
Last year, on the 10th anniversary of the Supreme Court’s decision, the Bazelon Center issued a call to action titled Still Waiting ―The Unfulfilled Promise of Olmstead, in which we decried the slow progress toward integration and listed many opportunities for federal, state and local action. Fulfillment of this promise is important to all of us not only because it will represent a more just society, but also because America will fully benefit from the now unrealized contributions of people with mental illnesses.
Thank you for this opportunity to testify. I look forward to your questions.
View video of the hearing on the HELP Committee site.