Feature

For 36 years, the Judge David L. Bazelon Center for Mental Health Law in Washington, D.C., has provided legal support for people with mental illness and retardation, especially those who are poor or on the margins of society.

In fact, many know the center as a main force behind deinstitutionalization of people with mental illness, making it a subject of controversy. Named for the late chief judge of the U.S. Court of Appeals for the District of Columbia Circuit and a principal founder of American mental health law, the center also pushes for legislation sensitive to the needs of people with serious mental illness and mental retardation, such as the Americans with Disabilities Act (ADA); provides co-counsel and technical support in selected lawsuits; and advocates for public policy reform, says center executive director Robert Bernstein, PhD. A clinical psychologist who directed the Neighborhood Service Organization-Older Adult Services program in Detroit for 19 years before becoming the center's director, Bernstein got involved in advocacy early on when he saw the dark side of institutionalization, he says. Under his leadership, the center also has branched out into community education work and has continued to push an advocacy agenda through litigation, federal and state policy reforms and community education.

In an interview with the Monitor, Bernstein discusses where the center has been and where he wants it to go at a time when President Bush's New Freedom Commission on Mental Health has described our public mental health system as "in shambles."

Q. Why was the Bazelon Center created?

Bernstein: The Bazelon Center was born out of the civil rights movement. We were the brainchild of some very progressive, forward-thinking attorneys who recognized that the same kind of challenges being identified with regard to African Americans, for example, also applied to people who were being segregated in a different way-within psychiatric hospitals.

Q. What is the Bazelon Center's role vis-á-vis deinstitutionalization?

Bernstein: The Bazelon Center is sometimes "blamed" for deinstitutionalization based on its early work. In fact, a slogan used against us by people antagonistic to our civil rights work was that deinstitutionalization caused people to "die with their rights on." In other words, people accused us of freeing people from hospital confinement who would then die homeless on the streets.

However, deinstitutionalization was never supposed to be a synonym for neglect. It was supposed to be about creating a new system of services and supports that would allow people with mental illness and mental retardation to thrive in their communities outside of hospital settings during all of the times when they did not need hospital services.

Q. What went wrong?

Bernstein: A lot of implementation efforts at the time were characterized by a "let's-figure-it-out-as-we-go-along" approach. While practitioners linked this spirit from the start to strong advocacy for people with mental retardation and developmental disabilities, it was quite a different story for people with mental illness. Professionals targeted parents as being at fault, and society regarded people with mental illness as dangerous or even "bad." While some enlightened mental health professionals advocated for this population, many others viewed desinstitionalization as an unwelcome disruption in service models for which they'd been trained, and they sometimes did what they could to preserve the status quo. So while resources and innovation flowed to one population, it has been much slower going for the other.

Q. What is the current state of the public mental health system?

Bernstein: We've gone from disinvesting in people by keeping them in psychiatric back wards to disinvesting in people through a flawed community mental health system. The caseloads are astronomically high, people routinely fall out of the system, and over the years the number of people with mental illnesses who are put in jails and prisons has skyrocketed.

Q. What is psychology's role in all of this?

Bernstein: If we brought our skills to bear in the way we know we can, we could make a tremendous difference for these individuals and for society. But in our silence, we've become part of the problem.

Q. What would be a better solution, in your view?

Bernstein: We know how to help people; we're just not doing it. There are models we used 25 years ago that we know are successful. One example, assertive community treatment, entails a mobile interdisciplinary treatment team-perhaps a psychologist, a psychiatrist, a social worker, a case manager and a nurse-that establishes close, consistent relationships with the individual, providing him with a high level and scope of services and supports if needed and backing away when he is doing better. The team is very prepared to get in cars and visit the person in his home, in the workplace, to go shopping with the person, to really help him navigate the world. It works. It's intuitively obvious that it would work, yet these kinds of programs are still a rarity.

Q. How does money factor into the problems we are currently seeing?

Bernstein: A lot. We are paying as a society for neglectful practices. We're paying in emergency room visits, in unnecessary hospitalizations and in criminal justice contexts. The money isn't being directed toward early effective services that are proven, like the one I just described.

Q. How has the social and political climate changed since the center was launched, and how is it affecting the picture for people with mental illness?

Bernstein: We certainly have better rhetoric. We can articulate a grander vision for people with mental disabilities. Our standards have changed, too. According to the New Freedom Commission, what was considered a success 30 years ago-admitting people to hospitals only when they were seen as a danger to themselves or others, then placing them on medications and sending them to a group home-is not considered a success today. A person who spends all day smoking in front of a television set in a group home is every bit as segregated as he was behind locked hospital doors. What we're aiming at now is recovery, which for many individuals means employment, owning their own possessions and participating in the community.

Given these ideals, we still don't have a mechanism in place to ensure that the resources that would allow that vision to become a reality actually go to the right places.

Q.Do you ever feel that this problem is simply too complex or too driven by political whim to really tackle adequately?

Bernstein: There are some complex problems, like cancer or HIV, that we don't yet know how to fix. The good news is, we do know how to fix this! It's a matter of committing money and political will to it. That doesn't mean it's not an enormous challenge. When you're dealing with something as amorphous as discrimination, it's going to be a challenge.

Q.How can psychologists get involved?

Bernstein: Psychologists can partner with us on many levels: through research that demonstrates the harmful effects of discrimination and also the true capacities of people with mental disabilities; by assisting as experts in impact litigation or policy advocacy; by organizational participation on friend-of-the-court briefs; and, of course, by direct support of mental health advocacy.

Further Reading

For more information on the full range of Bazelon Center efforts, including opportunities to participate in activities and internships, visit http://www.bazelon.org.

Tori DeAngelis is a writer in Syracuse, N.Y.