Mouth asks,

What drives you to do what you do?

The movement to close institutions, to assert the rights of people with disabilities to live in their homes and communities, has been the most successful civil rights movement in our country. This is the cutting edge of civil rights work.







an interview with Judy Gran
by Josie Byzek
photo by Chris Dellmuth

This interview first appeared in Mouth magazine in May 1998

Judith Gran is a staff attorney with the Public Interest Law Center of Philadelphia (PILCOP). She says, "I always wanted to practice civil rights law." Returning to law school when she was in her thirties, after having her kids, she was a student intern at PILCOP where she worked with Tom Gilhool and Frank Laski. After her graduation in 1984, she joined that firm. Her clients have included People First of Tennessee, for whom she won two cases. Those cases resulted in the coming closing of all of that state's MR/DD institutions.

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We hear you once put on a masquerade.




I impersonated a visitor.

Before we filed the case called People First of Tennessee v. Arlington, I went into that institution, pretending to be a visiting family member.
The institution staff recognized all the People First members, and they wouldn't let them come to the institution or talk to anybody. They were even returning mail sent from People First to the members who were inside the institution.
One Sunday afternoon during visiting hours I just walked in and hung out, acting as though I was just visiting family. Nobody paid that much attention to me. I went all over the institution, to all the different living units, and I met people. That's how I met one of the named plaintiffs there, during that visit.

Are Self Advocates important in the closing of institutions?

[Self Advocates is one term that people with disabilities who are freedom fighters use to describe themselves. The national coalition of activists with developmental disabilities is known as Self Advocates Becoming Empowered, SABE.]

They are critical to it.

The self-advocacy movement is the most committed group of people to the freedom of institutional residents. They bring a passion and energy and level of dedication and commitment that no one else can.
People First of Tennessee v. Arlington was the first case brought by a self advocacy group &emdash; people with disabilities &emdash; with members living in the institution. It was completely directed by People First of Tennessee. It was their vision that drove the lawsuit and animated it from the beginning.
After that case was more or less resolved, we filed another suit against the Clover Bottom Developmental Center. The result of that was a statewide settlement agreement, a consent decree in which the State, People First, and the Department of Justice agreed that everyone who was recommended for community 'placement' would move to the community. Tennessee is currently budgeting to close all its institutions. They closed the Winston Developmental Center in March.
When People First filed the case against Arlington, Tennessee was something like 48th in the nation in spending on community services for people with disabilities in the Mental Retardation/Developmental Disabilities service system. Now I believe it's second in the nation in growth of community spending.

But the Department of Justice played a role...

People First filed its case first, but the DOJ's case went to trial first because it took a long time to persuade the court to certify the class [for a class action].

When the Department of Justice filed its case against Arlington, they filed it as a fix-up case, about improving services at the institution as opposed to getting people out. That has been an issue with DOJ from the beginning, from when they first started doing CRIPA (Civil Rights of Institutionalized Persons) cases.
The DOJ case did a very thorough job of trying their case. There are good lawyers at the DOJ, very skilled lawyers. And they had good experts who presented compelling testimony which had a powerful impact on the Court.
But it was all in the context of fixing up the institution, making it a better place to live. The case was not as helpful it could have been to People First of Tennessee. We did not believe that the institution could be fixed.
And apparently it can't. The court orders, the consent decree in which the state promised to fix up the institution, have been in effect since September 1994, and they've been continuously and severely out of compliance with that decree from the start.
I think all the parties have seen that it's not realistic to expect this place to ever deliver quality services. But it took a long time to demonstrate that because DOJ didn't present its own case that way.

Why did the DOJ butt in?

A federal statute, CRIPA (the Civil Rights of Institutionalized Persons Act), gives the DOJ legal authority to sue state institutions and prisons for violations of constitutional rights of the persons who live in those places.

The value of CRIPA cases is that DOJ has vast resources which private plaintiffs usually don't have. I read the legislative history of CRIPA, and Congress was concerned that private plaintiffs would not have the resources to bring these cases and that the cases wouldn't be brought unless DOJ was there to bring them.
However, CRIPA works very inconsistently.
If you ask anyone from the Department of Justice whose interests are they representing, they'd say they're representing the interests of the United States. So the Department represents itself and not people with disabilities. The DOJ has no obligation to listen to people with disabilities about what they really want.
This has been a big issue for all of us because people with disabilities have consistently said, 'We don't want to be institutionalized.' And DOJ has said, 'Well, that's okay, but the law only gives us the authority to fix up institutions.'
I've been going into institutions that have been "fixed up" by court orders. They are even more bizarre, trying to present an image of homeliness; wallpaper pasted to concrete block walls, TVs everywhere, weight rooms, and toys. But the quality of life hasn't changed. People still have no choice in how they live, there are no relationships with other people. Nothing has changed. Money is being poured in to fix up these places, and they're still lousy. It's convinced me that the institutions can't be changed.
The most horrible experience of my life was when I visited Hissom in Oklahoma, and went into a ward of young kids. They gathered, clustered around us, and grabbed our hands. They wanted to play and talk with us. It was devastating. When people are older, they don't come up to you any more to try to talk. But you feel their sadness. It's devastating, the wasted lives that people are forced to live.

Can't we just sue for our liberty under the U.S. Constitution?

In theory, yes.

People with disabilities who live in an institution or nursing home can file a lawsuit of their own alleging violations of their rights under the Constitution and laws of the United States, or state law, for that matter.
The Constitution, as interpreted by the courts, guarantees people in institutions the right to adequate food, shelter, medical care, safety, freedom from harm, freedom from restraint and the right to adequate services to prevent harm.

The 14th Amendment, the due process clause of the U.S. Constitution, says that no one will be deprived of life, liberty or property without due process of law. The courts have interpreted that to apply to people living in state institutions. They started with the fact that everybody has an interest in liberty.

People don't lose their right to liberty just because they're in an institution.

Are we any closer to the day when people with disabilities can have an expectation of living in freedom?

The momentum is growing. We're getting closer.

The courts have been persuaded by the evidence. In the Pennhurst case in Pennsylvania, the courts ordered that the institution be closed. Then the Court of Appeals said there might be some people who would need the institution, that the decisions would have to be made on an individual basis. So they ordered that everybody be evaluated individually. It turned out that everyone was eligible for a move to the community.
Then there was the case against the Mansfield Training School in Connecticut. That case was settled after about a week of trial. Mansfield closed in 1990.
Then in Oklahoma, I tried the case called Homeward Bound v. Hissom Memorial Center, in which the judge ordered the Center closed. Then I tried the case called Jackson v. Fort Stanton Hospital and Training School in New Mexico. The courts ordered that everyone who was recommended for community placement should go to the community. Two institutions in the state of New Mexico were defendants in that case, and both were later ordered closed.
Then we filed the cases against Tennessee, and we're also involved in a case against the Southbury Training School in Connecticut. That case is probably going to trial in a few months.

What are the obstacles to closing institutions?

The obstacles are primarily the state employees, the pro-institution parents, and the general conservatism of state legislatures.

How do we get around them?

Sue them.

This is a complicated issue in state government, and it is hard to overcome political obstacles without litigation.
State officials may agree that people would be better off in the community and they look at these institutions, which are very expensive. Institutions have lots of problems, there's always a risk of scandal erupting, and state officials might feel they're better off without the institutions. But there are forces that coalesce to keep them open, and advocate to pour money into them. That's why, often, litigation is necessary even if nearly everybody agrees that people would be better off in the community.
If this were the private sector, people wouldn't continue to invest in a failed model. They wouldn't continue to make the Edsel. But because it's the public sector, and it's state government, they do.

Right now there are no more state [MR/DD] institutions in New Hampshire, Vermont, Rhode Island, Maine, Alaska, New Mexico. This year, Hawaii and West Virginia are becoming institution-free. Michigan, which is a very large state, is getting close to closing its institutions. Minnesota also has relatively few people institutionalized.

The momentum is growing. We're getting closer. Unfortunately, more litigation will be necessary. But we will succeed. I believe we will see the closing of all state institutions in our lifetime.

Judy worked with People First of Tennessee to win the closing of every state "developmental" institution. Read about that in People First's own words.



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Steve Gold is another attorney who pioneered in suing to set our people free. Read what he SAYS.