Mouth
asks,
What drives you to do
what you do?
Judy
SAYS
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.
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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.
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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.
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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.]
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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.
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But the Department of Justice
played a role...
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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.
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Why did the DOJ butt
in?
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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.
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Can't we just sue for our
liberty under the U.S. Constitution?
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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.
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Are we any closer to the day
when people with disabilities can have an expectation of
living in freedom?
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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.
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What are the obstacles to
closing institutions?
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The
obstacles are primarily the state employees, the
pro-institution parents, and the general conservatism of
state legislatures.
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How do we get around
them?
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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.
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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.
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