Visionary Voices
Interview with Judy Gran
February 17, 2012
Chapter One: Early Career
07:54:54:03 – 07:55:28:03
Lisa: Ok, we’ll begin our interview. My name is Lisa Sonneborn and I’m interviewing Judy Gran
at Temple University on February 22, 2012. Also present is our videographer, Aggie Ibrahimi
Bazaz and Judy do we have your permission to begin our interview?
Judy: Yes.
Lisa: Thank you. Welcome. Judy I wanted to ask you when and where you were born?
Judy: I was born in Roanoke, Virginia in, on May 19, 1943.
Lisa: Thank you. And what is your profession?
Judy: I’m a lawyer.
07:55:29:06 – 07:56:26:25
Lisa: Before you began working in your profession had you ever met a person with a disability?
Judy: I had met um actually quite a few people with disabilities in Egypt, where I lived for five
years before I started law school and I actually visited several programs for people with
disabilities while I lived there. I visited shelter workshops and residential arrangements and so
forth and there were a lot people with disabilities just living with their families. And actually
people with disabilities are somewhat more valued in societies like Egypt then they were at the
time in Western industrial societies.
07:56:27:07 – 07:57:49:18
Lisa: And how was that evident Judy?
Judy: Well for example in the villages in the countryside when a person with very significant
disabilities is born he’s often given the name Barack which means blessed, blessing and it is
considered a blessing from God to have a child with significant disabilities. And more
pragmatically, I guess, because a lot of people, there was a very high incidence of blindness in
Egypt at the time because of a parasite that infects people in the water, when they work in the
water and because people were spending a lot of time growing cotton, which required them to
1
wade in the water, a lot of people developed blindness as result of this parasite and so many
very eminent people who were leaders in the society were blind and that was really not in
some ways considered a disability but just a condition.
07:57:50:27 – 07:54:15:06
Lisa: So, Judy, why did you choose a career in law?
Judy: Well the most immediate cause was that I was working on a Doctorate in Political Science
and I did my research in Egypt under conditions that were very difficult because there was a
war going on at the time and there were no diplomatic relations between Egypt and the United
States and there was not technology available to copy documents, let alone computers to keep
records on so it was very difficult and I had a lot of hand written notes and records that I’d
collected and as we were coming home from Egypt we stopped in England and all of my notes
were stolen so I had to make other plans. And I decided that this was a sign that I was meant to
go to law school because that was something I had really wanted to do back when I decided to
go to graduate school instead. So I did and it turned out to be a very good choice.
07:59:16:07 – 07:59:32:03
Lisa: What kind of law did you to practice when you made the decision to go to law school?
Judy: Civil rights in some form. I was pretty sure about that and those were the course I took in
law school to the extent that I could.
07:59:34:02 – 08:00:11:07
Lisa: You spent, I believe, 25 years as a Staff Attorney for the Public Interest Law Center, well 25
years, your career at the Public Interest Law Center spanned 25 years some as a Staff Attorney,
some as the Director for their Disabilities Project
Judy: Yes, 25 years as an attorney and I also spent a couple of years working there before I
finished law school, before I was admitted to the Bar, including a year as an intern at the
Temple Institute on Disabilities.
08:00:13:18 – 08:04:59:00
Lisa: And what was it about the Public Interest Law Center that attracted you?
Judy: Well another fortuitous circumstance, before we moved to Philadelphia I was planning to
go to law school at Temple, my husband was coming here to take a teaching job at Temple and
some people we knew in Austin, Texas, where we were living at the time, told me that I really
2
must get in touch with Tom Gilhool who was a great Civil Rights lawyer, one of the leaders in
the field and so as it turned out Tom gave some talks at the law school, which I attended and
then I responded to a job announcement when I was at the end of my first year in law school
and started working at the Law Center and I was completely blown away by the work that, that
Tom and his colleague, Frank Laski, who was Director of the Disabilities Project at the time, Tom
was chief council of the Law Center, but the work that they were doing on behalf of people with
disabilities was just tremendously exciting and ground breaking and immensely substantive. I
think what really distinguished their work from the work of many other public interest
organizations at the time was that it really focused on getting real material changes in social
structures, governmental structures, service delivery systems, things that really, really
benefited people and responded to what people wanted, they weren’t just procedural changes
as in so many of the cases that I had read in law school. And they were working on the, what
was called the Part Two Implementation Case. This was a second phase of the original PARC
versus Commonwealth, Right to Education Case and it was brought on behalf of children with
the most significant disabilities in Philadelphia, in the School District of Philadelphia and it was
brought as an implementation proceeding within the PARC Case. And it resulted in another
agreement to create a different type of educational program for those students. They had
been receiving very, very meaningless, age inappropriate instruction in very segregated classes
and in many cases in Philadelphia, in separate schools for kids with profound disabilities so this,
that proceeding really brought about a major change in the way services were provided to
those students. It was incredibly exciting and I attended the trial, which lasted about a week,
after which the case settled and the leading experts in the field all testified and Judge Becker
presided over the case, Judge Edward Becker whom I’m sure you’ve heard about and his role in
many of the cases on behalf of people with disabilities and Judge Becker knew more than most
special education teachers about special education and he was very engaged. It was a very
exciting trial and had a great result. And at the same time Tom and Frank were working on the
Pennhurst litigation, which the orders had come down, as you know, in 1977 and ’78 and then
there was a proceeding in the court of appeals and by the time I joined the Law Center it was in
the Supreme Court for the first time. The Supreme Court had granted cert and Tom and Frank
were working on the brief in the Supreme Court after which it was argued. So it was just a
tremendously exciting time and I was completely hooked on this work.
08:04:59:24 – 08:05:35:29
Lisa: I’m sure you were. It seems almost a revolutionary time in many ways. Very exciting.
Judy: It was. It was. I can’t exaggerate how revolutionary it was. I mean remember that
Pennsylvania really had no community service system at all for people with disabilities until the
3
early ‘70s and it was only gradually developing throughout the ‘70s and it really serve people
with the most significant disabilities until the implementation phase of Pennhurst.
Chapter Two: Pennhurst Litigation
08:05:36:10 – 08:07:43:11
Lisa: I want to ask you about that because I know the Pennhurst Case was very long, was very
lengthy and very complicated and I think it would certainly help folks listening to our
conversation to have a little bit of background about that. One of the things I wanted to ask
you about is that even before the Pennhurst litigation something around $20 million had been
appropriated by the Senate to start moving people from Pennhurst into the community but
that never really happened, it never really took hold. Do you have any idea as to why that
might have been?
Judy: No I really don’t. That was before my time, actually, but it, a lot of the people who were
moved from Pennhurst in the early days were moved to other institutions and that’s another
part of the implementation story but they were moved to Embreeville, a lot of people where
moved to Embreeville, many people were moved to Pine Hill which was essentially a nursing
facility for people with complex medical needs and so forth, a lot of people were moved to
Elwyn and the service system had not developed to the point where it could support people
with more complex needs so people with mild disabilities could go to the community, people
with more complex needs had to go to other institutions. Actually the first community living
arrangement in Philadelphia for a person with significant disabilities was created for Walter
Fialkowski the son of Leona Fialkowski, one of the petitioners in the Part Two enforcement
proceeding and that wasn’t until the late ‘70s.
08:07:48:09 – 08:08:33:08
Lisa: Thank you. So when you joined PILCOP as a Staff Attorney, as you had said PILCOP had
been representing the, some of the plaintiffs of the Pennsylvania Arc and the Pennhurst.
Judy: Yes.
Lisa: Litigation for maybe 10 year, nearly 10 years or so.
Judy: Right. Right. Yes, the Arc and a number of individuals intervened in the case in 1975 and
converted it from a fix up case into a case about community placement and it was very
significant because it was the first case of its kind that was really brought to, to bring people
into the community as opposed to improving conditions at the institution.
4
08:08:33:16 – 08:16:44:24
Lisa: I wonder, also, Judy if you could give us maybe a very brief overview of the case
Judy: Yes, well yes. It was an unusually complex case procedurally as well as substantively but it
was filed by the original plaintiffs, Terri Lee Halderman et al. in 1974 and they sought damages
and improvement in conditions in the institution. The Arc of Pennsylvania intervened in 1975
with its own complaint which called for placement in the community and the development of
community services. The United States also intervened in the case about the same time
seeking to enforce Federal Law, specifically Section 504 of the Rehabilitation Act which had just
recently been enacted. And it went to trial in 1977, was at trial for about six weeks, I think, and
the Judge issued his decision the day before Christmas Eve in 1977 finding liability under, on
many different grounds. First of all the Constitution, the Due Process clause and the Equal
Protection clause, Section 504 of the Rehabilitation Act, which called, required services in the
most integrated setting and State Law, the Pennsylvania Mental Health and Mental Retardation
Act of 1966, which also had a community inclusion provision. So the Commonwealth and the
Counties appealed and the Court of Appeals decided to uphold the original orders but on a
different ground. Sometime in the process of the litigation the case is going to trial and going
up on appeal Congress had passed the Developmental Disabilities Bill of Rights and Assistance
Act which of course supports the Institute on Disabilities, the protection and advocacy systems
and so forth and it contained a least restricted environment provision. So the Court of Appeals
decided that by accepting Federal Funds under this statute the Commonwealth had agreed to
support people in the most integrated setting so they upheld the original orders under that
statute. That was then appealed to the U.S. Supreme Court, the Commonwealth petitioned for
certiorari on the ground that there was no right of action, a person with disabilities could not
bring an action under this statute for violation of its provisions and that was a very important
issue in the Federal Courts and the Supreme Court reversed the Court of Appeals and held that
there was no right to bring an action under the DD Act, that only, only the administration could
enforce it by withholding funds presumably and that holding actually had implications for a
whole lot of different Federal statues and the ripple effect is still going on today with decisions,
refinements of that standard coming down from the Supreme Court on a fairly regular basis. So
it went back to the Court of Appeals and the Court of Appeals had all these other grounds that
the Supreme, that the Distract Court had ruled on and they decided to uphold the original
orders under State Law, the MH/MR Act, and the Commonwealth appealed again and I was
working as an intern at that time, at the Law Center with Tom, and I remembered how stunned
he was when the Supreme Court granted certiorari for the second time because we completely
expected the original orders to be upheld, everyone did and Tom actually had written a press
release and he had arranged to hold a press conference in Washington on a Monday morning
5
when the Supreme Court was expected to announce the cases in which it had granted or
denied certiorari and we, Tom had written a 20 page press release and kept working on it and
kept working on it and as he was still working on it the news came down that the court had
decided to hear the case again which was very, very amazing. So it was briefed and argued and
then the Court decided to hear reargument. Apparently, I gather that the Court must’ve not
been able to decide the case the first time around and the issue there was whether a Federal
Court has the authority under the 11th Amendment, very arcane piece constitutional
jurisprudence, to order State officials to comply with State law. And eventually after the case
was reargued the Court reversed again and decided that a Federal Court does not have that
authority, it can only order State officials to comply with Federal Law. And that holding too has
had many implications for Federal jurisprudence in a lot of other areas. So the case went back
to the Court of Appeals again and this was in, the Supreme Court ruled for the second time in
February 1984 and it went back and the Court, the Court of Appeals by now had to decide the
Constitutional issues and in the meantime a case called Youngberg versus Romeo involving an
individual Pennhurst resident had been decided so that there was some good case law on the
Constitutional standard under the due process clause. So I think everyone on the plaintiff’s side
was pretty hopeful that the court would rule in our favor on the Constitutional questions and in
the meantime the parties finally decided to settle the case in a lengthy mediation before Court
of Appeals, a Court of Appeals judge, Max Rosin and that was successful and the result was the
final settlement agreement which was approved by the court on April 5, 1985.
8:16:47:17 – 08:17:51:21
Lisa: It was a very complicated history.
Judy: Yes. And as Michael Lottman, who was one of the, who was the Hearing Master in
Pennhurst, liked to say now the real work begins. When you get an order you get a consent
decree and you have to implement it. And fortunately a lot of implementation had already
gone on because the Courts orders were never stayed, that’s a good thing about bringing a case
in Federal Court unless the Court decides to stay its orders they remain in effect. And, and that
was a really important part, I think, of the momentum of the case was that the courts orders
were being implemented, Temple was doing the longitudinal study showing that people were
better off in the community, it was working, people were flourishing and I think that all helped
everyone towards settlement.
Chapter Three – Pennhurst Implementation
8:18:03:28 – 08:23:05:06
6
Lisa: So you were talking, Judy, about implementation and Tom Gilhool asked you to take the
lead on compliance and implementation for PILCOP, I believe.
Judy: Beginning in about 1986 after the first couple of years of implementation after the
settlement agreement.
Lisa: And can you tell us a little bit about what was involved in that work?
Judy: Well at the county level there were still a lot of problems in compliance with the Court’s
orders. I mention the fact that when people move from Pennhurst before the Court’s orders
came down they generally moved to other institutions or a lot of them did and in Delaware
County and Philadelphia in particular a lot of people had, who had lived at Pennhurst after 1984
when the case was originally filed had been placed in other institutions and it was a little bit
complicated because the class as originally certified was certified to include people who had
lived at Pennhurst after, I think it was 1977 then when the case was settled, when the consent
decree was negotiated the parties agreed to extend class membership back to 1984 when the
case was originally filed which was very logical. In return the people who had become
members of the class because they were at risk of admission to Pennhurst, because they were
on the waiting list for Pennhurst, no longer were members of the class unless they had already
been members of the class receiving services in which case they were grandfathered in. So
there were a large number of people at Embreeville, at Pine Hill, at Elwyn, other institutions
who were titled to community placement so we filed motions for contempt against Delaware
County and Montgomery County and those, the court held a hearing on those two motions and
eventually the Court of Appeals ruled that, that the counties and the Commonwealth were not
in compliance with the settlement agreement and so the people who remained, who had been
placed in the other institutions did move to the community and there were some other issues
such as case management, case loads and so forth that had to be corrected and were
corrected. And then in 1987 the Arc filed a motion for contempt against Philadelphia and the
Commonwealth in response to the monitoring reports of the last wave of class members to
move to the community from Philadelphia, in Philadelphia and the reports showed such
problematic conditions in the community that we felt we really had to, had to address them.
As you know Pennhurst closed in October 1987 and Philadelphia was the last County to bring all
of its people back form Pennhurst. And Philadelphia was, you know, historically Philadelphia
had sent people away mostly to institutions outside the city, had never really served people
with significant disabilities in the community until Pennhurst implementation and that involved
a very radical change in service delivery. And so Philadelphia struggled understandably. At the
same time Philadelphia did become, as a result of Pennhurst implementation the first major
metropolitan area in the country to serve all people with intellectual disabilities in the
7
community no matter what their disabilities, no matter how complex their needs, that’s an
achievement which is not very well known. I wish it were better known and celebrated because
it’s a very, a very impressive fact.
8:23:06:00 - 08:26:44:13
Lisa: I wonder, Judy, I’d love to ask you about some of the problems that Philadelphia faced.
Judy: Right.
Lisa: I think it would be interesting to hear what some of the problems were and how
Philadelphia resolved them. So I guess I’m thinking specifically about the conditions in the
community that were reported to be problematic and then, again, how they might have been
resolved.
Judy: Well in Philadelphia many of the service providers were large agencies, based serviced
units who ran a lot of services other than intellectual disability services and unlike the situation
in some of the counties where the service providers often came from the grass root were
relatively small, very focused and accountable to, relatively speaking, accountable to families
and accountable to county government. That really wasn’t the case in Philadelphia it was much
more difficult to get accountability. Also I think many of the people who were running the
system, who should have been providing support and technical assistance and direction to the
service delivery system were not able to because they didn’t have the depth of knowledge, they
didn’t really come from backgrounds within the field, that’s not true of everyone of course
there’re many people who, who did and remain in the system today but that was something
that I think the system struggled with. And if you look at how the service system was organized
in Philadelphia, the Case Managers, for example, who were supposed to monitor services and
get correction of deficiencies were buried so many layers down in city government that they
really didn’t have the power or authority to take action and I think many of them were very
frustrated by that fact. And being Philadelphia it was always possible for politicians who had
relationships with the agencies providing services to intervene and to stop corrective action
when it should have been taken and I think there were some very good people working in the
system, people like Steve Eidelman and Richard Searls, who I believe had their hands tied and
were not able to do what they felt was professionally the right thing to do. And of course it was
a big system, there had to be a lot of different people providing oversight and it was just, I
think, a big, a big challenge. And it wasn’t really until Estelle Richman became Deputy
Commissioner of Mental Health and Mental Retardation that the system was able to improve.
8:26:51:07 – 08:27:22:17
8
Lisa: we were talking about the system struggling.
Judy: Yes.
Lisa: With folks moving from Pennhurst to the community but it wasn’t just the system, some
parents were also very much opposed to having their child or other people’s children move
from Pennhurst or any institution into the community. I know some of them even organized
and formed groups like the Pennsylvania League of Concerned Families.
Judy: Yes.
Lisa: So I’m wondering, in your experience do you have sense of why parents were so opposed
to that move?
8:27:23:09 – 08:31::36:23
Judy: Well the, I think the governing hypothesis is that the parents who opposed community
placement typically were older parents who had been told when their son or daughter was
born that the best place for him was at the institution and they believed that and they followed
the professional advice that they were given at the time and it’s very hard to believe, to come
to believe that you made a mistake and people tend to be invested in the decisions that they’ve
made. I’ve observed over time in the course of litigation not only in Pennsylvania but in a
number of other states very, very similar phenomena. I think it tends to be the upper middle
class, white, relatively well educated parents who support the institution the most and often
it’s the minority parents and the parents who are less affluent who are more open to
community placement and I think, I’ve noticed too that many of the parents who support the
institution tried very hard to get the best medical treatment for their son or daughter, they
searched high and low for a cure, they took their sons and daughters to Johns Hopkins and all
over the country looking for a way to cure him and in one era they might have tried patterning,
in other eras they might have tried applied behavioral analysis but that’s kind of a common
theme is the search for a cure and then they found there was no cure and they, at point they
place their son or daughter in an institution believing that, that their child’s condition was
essentially hopeless and nothing could be done and it was best to provide a safe place for the
rest of its life. And the attachment to bricks and mortar among these families is very profound.
In another case in another state, the case of the Arlington Developmental Center in Tennessee,
when the state decided to close the institution they planned to actually raze the buildings to
the ground because they were in very bad shape and sell the land to private developers. And
many of the parents actually wanted their sons and daughters to go on living on the grounds of
the institution or as near to it as possible. There was something about, you know, the physical
reality of the institution, the place, that was very important to them. So somehow this stands
9
for safety and security but as I said I think, I found that less affluent parents and particularly
parents who were African American or Latino are much more open to community placement
and have that already, kind of, have that sense of common community and so it’s a lot easier.
08:31:37:27 – 08:34:12:10
Lisa: And certainly around the time, around this time media was often representing the
transition of folks from Pennhurst into the community as taking resources away from other
folks out in the community.
Judy: Yes.
Lisa: I’m sure many parents thought that as well. And did you think that was a fair assessment
of the use of resources?
Judy: Well no, really not because the State could have made a commitment to developing the
community, closing the institutions, the fact is that the institutions take up so many resources
just operating the buildings, operating the grounds is a huge drain on resources and so I think
that it was more of a political tactic on a part of the State to blame the court, to blame the
plaintiffs and Pennhurst for taking resources away from the community when the fact was that
the parents of people with significant disabilities living at home really had no alternative before
Pennhurst implementation. There were no community services for people with significant
disabilities and actually the Pennhurst orders had the effect of developing the system for
everybody. And when we actually looked at the numbers, Tom Gilhool was very, always had
very great ideas for how to show really what is happening in terms of where the resources are
going, where the money is going and we looked at all the people who had been place in the
community, in Philadelphia, in the surrounding counties and saw that really for every person
who had come out of Pennhurst there was at least one other person with significant disabilities
who had moved to the community from home. And many Pennhurst class members were
sharing their homes with non-class members so it, the system really was growing and serving
everyone. Not serving all the people on waiting lists, obviously, but able to serve people with
complex needs it had never served before.
Chapter Four: Community Collaborative
08:34:16:10 – 08:38:14:23
Lisa: I believe it was in 1991 that the Community Collaborative was formed under the direction
of folks like Nancy Thaler.
Judy: Yes.
10
Lisa: And Estelle Richman. And I believe the Community Collaborative sought to address some
concerns about implementation and compliance and strategize for ways to do both those
things. I’m wondering if you could tell us a little bit about the Collaborative and whether or not
you thought it was successful in its goals?
Judy: Well the Community Collaborative actually was a part of the Pennhurst orders. There
actually was an order of the court setting it up, so to speak, but this, it came about after we had
filed the motion for contempt against Philadelphia. And the problem, we felt the problem was
that we could get a set of findings of contempt, we could get some new orders but what really
had to happen was much more profound, the system really had to change in Philadelphia and
the people running the system had to embrace that change and the system, as I’ve said the
systemic problems were so profound in Philadelphia that it really required more than just a
new set of orders that would be very difficult to comply with given the state of the system at
that point. So we spent a lot of time negotiating with the city of Philadelphia to try to bring
about some change and finally, I think it was Nancy Thaler who actually had the idea of doing a
comprehensive planning effort and she and I talked about it a lot and I think we were of one
mind that it had to involve everybody, families, advocates, class members, providers, everyone
in the system and it had to be really a community wide effort that would involve the whole
community and result in, in, I think Nancy’s formulation was we won’t talk about what was
wrong with the past we’ll focus on building a better system in the future and one that is really
based on a set of values that we can all embrace. And so the court agreed with us that we
could go forward with this effort and it took place over a fairly long period of time, about a year
or perhaps more, and it began with, we brought in a facilitator, David Powell from Kansas, who
had, whom Tom and Frank Laski and I had worked with in the Homeward Bound litigation in
Oklahoma. Dave was the court monitor in that case and we had seen his ability to facilitate
strategic planning that was a little different from what we normally think of as strategic
planning because it was based on values and the goal was to translate those values into
operational realities in a service system. And Nancy Thaler was very on board with that
concept as well so that was how we began, with identifying the common values.
08:388:24:03 – 08:41:57:09
Lisa: And Judy you’d said that you had all worked together to identify the common values. How
did you implement those values?
Judy: Well of course that was the challenge. Some of the values, it was very interesting because
when we went through the exercises to identify the common values we came up with things
like friendships and family and people coming out of Pennhurst typically didn’t have a lot of
contact with their family, some did but many did not, friendships, that was a whole new
11
concept. The idea that that was really important for people with disabilities, that it was really
important to facilitate friendships, make it possible for people with significant disabilities to
have friends that was a whole new idea. Nobody had ever thought about that before it was,
the thinking was all about how can we get a better residential arrangement, how can we get
health care to people, how can we deal with transportation, how can we get them to sheltered
workshops during the day. So that was really, really required some radical thinking on peoples
part but the plan was that we were going to come up with a strategic plan to change the system
so that it was consistent with the values. And after the initial session, after the initial facilitated
sessions we formed a number of different planning groups that worked on pieces of the plan
and they came up with very, very good strategies, I think, for implementing all the pieces we
had identified. Unfortunately when the system, when the Commonwealth and the county
really, when push came to shove and they had to produce an implementation plan based on
the work of these work groups they came up with something that in our view was very, very
watered down and did not, did not embody the work that people had done. And I want to
emphasize that the work groups were composed of people from the system, service providers,
families, advocates, people with disabilities, they were really very comprehensive, they were
really a great combination of stakeholders and people from the grassroots so their work was
really very, very good and maybe someday we should try to resurrect the product of those
groups. But what the system proposed was not what we had envisioned at all so we had to go
back to court and inform the judge that we were going forward with the motion for contempt
and we had a hearing in 1993 which lead to a new set of orders in March 1994.
08:42:01:00 – 08:43:03:14
Lisa: Do you think that if nothing else the values set forth by the Community Collaborative have
had a lasting effect on the system?
08:42:20:21
Judy: Oh yes. I think they really, I think the transformative effect was really very deep. I think
we can still see the effects today. I think the system really redefined itself in terms of its
purpose in what it was all about that, that the purpose of supporting people with disabilities in
the community service system is not just a home and a place to be during the day and health
care and a way to get back and forth. It’s a life, it’s a life like any of us would have.
08:43:32:00 – 08:43:31:11
Lisa: That’s right I had read something is some of the Community Collaborative documents that
said the real barometer of the Collaborative’s success would be whether or not people were
happier with their lives.
12
Judy: Yes. Yes. Yes. Right. Exactly. I don’t know that anyone is really done systematic research
on whether that has happened. It’s a good question.
08:43:32:00 – 08:45:28:19
Lisa: One of the areas that self-advocates, through the work in the Collaborative, had identified
as being so important to them was around employment.
Judy: Yes. Yes.
Lisa: And I wanted to ask you what employment looked like for people at the time the
Collaborative was formed and has any, again, that value of employment and the need for real
jobs has that been a value that’s translated today for folks with disabilities?
Judy: Well at the time of the Collaborative the service system in Philadelphia was, I would
characterize it, as very backward, very traditional, there were very large sheltered workshops
and most of the agencies that provided some supported employment were also running large
workshops. It’s very difficult to do both and agencies that tried to support people in real jobs
were having a very difficult time. I mean the system was really setup to support large sheltered
workshops and I think that’s still the case today. I think it’s been very, very hard to get that,
that systems change in Philadelphia. I think thou that the County Office, the office of
Intellectual Disability Services is very committed to employment, has some very significant
employment initiatives and is really doing everything it can to try to lead the system in the right
direction.
08:45:44:21 – 08:47:14:23
Lisa: Judy you had mentioned that one of the unique aspects of the Collaborative were the
people that are brought in the room. And I wondered if you could tell us a little bit about who
came to the table and what it was like for them to actually sit down and try to work towards
these systemic solutions together?
Judy: Well we chose a group of about 50 people, a mix of people who played various roles in
the service system including class members, families, service providers, people from the
Philadelphia office, people from the Commonwealth, direct support professionals who
supported the people with disabilities, advocates of course and it was one of the really great
things about the process was that it taught us or enabled us to rediscover how much we had in
common and that we really were focused on the same values, the same goals, although we
played different roles in the system. And many of us had not, had not come together except as
13
opponents on opposite sides of the table for many years so that was a very, very good part of
the process.
08:47:17:26 – 08:54:06:12
Lisa: Thank you. Judy, you said that despite the Collaborative’s best efforts implementation
was a little difficult and you did have to go back to court?
Judy: Yes.
Lisa: And I know that Judge (Broderick) had issued some very strong orders regarding
compliance.
Judy: Yes.
Lisa: And I wondered if you could tell us a little bit about those and the impact on the city?
Judy: Well he had issued a set of about 13 different orders to the system to come into
compliance with the systemic problems that had surfaced such as the lack of a proper system
for investigating incidents of abuse, problems with the delivery of health care, there were just a
lot of systematic problems that he ordered corrected. But what was really brilliant about the
order was that he included sanctions in the order of $5,000, I think it was $5,000, per person
per day for each day that they were in noncompliance with a particular provision in the order.
So they had more of an incentive to comply and what happened early on in the process and the
Judge had also appointed a Special Master to oversee implementation and that was a very
successful part of the process. But the first thing that happened after the implementation
phase of those orders began, there was an order to assure that every class member’s
individualize habilitation plan was completed, approved by the County and delivered to the
class member’s home within 30 days of the IHP meeting. That may sound like a very simple
thing, it may sound like something that is very easy to do but the problems in the system were
so profound that the system could not do that. And the problem was that because people
didn’t have access to up to date IHPs the whole concept of an IHP, which was really pivotal in
Judge Broderick’s original orders back in 1978, it really lost its centrality to the system and
people had to figure out how to make do without an IHP. So that was really critical in, kind of,
bringing the system back to what the original concept had been, that everyone would have an
individual plan based on his needs that would be implemented. So it was a small thing,
seemingly, but it was very foundational. And the Special Master looked at the dates and which
IHPs were developed and when they were actually delivered and we all spent some time
looking at the tracking documents that showed where the IHP was in the process and there
were many, many steps in the process and the long and short of it was the Special Master
14
would have assessed about $13 million in fines just for out of date IHPs. He decided to or the
Judge decided to suspend the fines temporarily to give the system a chance to solve the
problem but with that $13 million hanging over their head they did solve the problem and the
problem was solved, again, thanks to the efforts of Estelle Richman who, who was Deputy
Secretary of the, as it was then called, Office of Mental Health/Mental Retardation in
Philadelphia assigned Susan Pingree and Larry Pace to run a new section of their office for class
members and eventually that lead to a different case management system for class members
and it served a model of how to manage and administer services a bit better. So that was very
effective and over time the orders were implemented with the assistance of the Special Master
and Tony Records, the Special Master, did a wonderful job of focusing all the players on
implementation of particular pieces. He took a systematic approach, what was the highest
priority issue? Well abuse and neglect investigation were a very high priority issue cause a lot
of evidence about that problem had come forth in the contempt hearing and the Special
Master brought in experts who were able to assist the County office to create an investigation
unit. The same approach was followed in health care, medical records, a number of other
issues that had, had surfaced as very systemic issues. And ultimately although the court would
have not had authority to order a quality assurance system, that wasn’t in the original orders, it
wasn’t in the new set of orders, ultimately at the end of process the parties all agreed on the
creation of a new quality assurance system and the Special Master was able to recommend to
the court that it relinquish active jurisdiction at that point and so that was completed in 1998.
And although the court still retains jurisdiction to enforce the permanent court orders it has not
had to actively be involved since that time.
Chapter Five: Self-Advocacy
08:54:20:17 – 08:56:12:21
Lisa: Judy, during the 1980s self-advocacy as the movement was blossoming really all over but
particularly in Pennsylvania and particularly in Philadelphia, can you tell us a little bit about
PILCOP’s relationship with self-advocates and the growing self-advocacy movement in the city?
Judy: Well I’m very grateful, again, to Tom Gilhool and Frank Laski for their vision. They
understood that self-advocacy was really the wave of the future that people with disabilities
had to be making decisions and planning a central role in the service system. So they both
really encouraged me to, to develop ties with self-advocacy organizations and I did, primarily
with Speaking for Ourselves but then eventually later with other organizations around the
country. And throughout the ‘80s and into the ‘90s, actually, the Law Center represented selfadvocacy organizations as friends of the court, amicus curiae, in the leading Supreme Court
cases on behalf of people with disabilities. And as self-advocates always do they, they let their
15
views be known to the Supreme Court and the briefs embodied the statements of selfadvocates themselves and that was a really wonderful process working with people all over the
country to bring their views before the Supreme Court.
08:56:13:23 – 09:02:01:14
Lisa: I think that’s, sort of, a great way to set us up for some of your work in Tennessee. And
I’m thinking of the case of the United States versus Tennessee where you represented People
First of Tennessee, a self-advocacy group. I think for the first time they were the plaintiffs?
Judy: Yes.
Lisa: I wonder if you could tell us a bit about that?
Well Mark Friedman who, of course, was the Staff Advisor to Speaking for Ourselves, his
counterpart in Tennessee, whom he knew very well, was Staff Advisor to People First of
Tennessee and in 1991 the United States Department of Justice had done and investigation of
an institution near Memphis, Arlington Developmental Center, and found really horrible
conditions there and for whatever reason the established organizations in Tennessee were very
reticent, very reluctant to become involved and take a strong advocacy position about the
conditions there. And People First of Tennessee had a chapter at the institution and they were
very, very concerned. They were concerned for their members, they were concerned for the
other residents and they had discussed the problems at Arlington throughout their
organization, in their local chapters, at their state wide board and they really wanted to, to do
something about this so Mark recommended that they meet with me. And so I got together
with their Staff Advisor and agreed that I would come to Tennessee and visit Arlington and
meet with the People First board and I called another lawyer that I knew who had done similar
work in North Carolina, a lawyer in Nashville who had done some work over the years with
People First and a couple of us went to the institution and toured and then came back and met
with the People First board. And they were very, very clear about what they wanted for
people. They had a very clear vision of people living in their own homes in the community, with
support, with helpers, not having their lives managed by agencies but being able to make
decisions about their own lives for themselves with support. And I had never met with a group
with such a clear, unmuted vision of the future as it could be. So we filed the lawsuit and it was
very difficult. The State of Tennessee was vehemently opposed to it, the parent, the
Parent/Guardian Association was also very opposed to it but it was ultimately very successful.
The Judge certified the class with People First as the class representatives and that was a huge
proceeding. That was really almost the core of the case, getting the court to recognize People
First as the representatives of the people at Arlington. The Parent/Guardian Association
16
submitted something like 500 declarations opposing class certification, the State was very
opposed to it but we were successful and then the court, there had been a parallel case
brought by the United States which focused on improving conditions at the institution. It did
not call for community placement and ultimately an order was enter in that case that, a
consent decree was entered in that case that required downsizing of the institution to about
half its then current size and the Judge ordered, since we had, we had essentially proven that
the orders, the findings in that case should apply to our case as well the Judge entered that
order as an order in our case and made us interveners so that we could enforce the order. We
then went on to get new orders requiring that everyone who was recommended for
community placement by his or her team would move to the community and then we got
another order requiring a community implementation plan. And so those new orders were
entered in the case and the result was that everyone was recommended for community
placement and everyone moved and the institution is now closed.
Chapter Six: Oberti v. Clementon
09:02:04:14 – 09:02:38:08
Lisa: Judy, you’d once said that you believed that we would see the closing of all state
institutions in our lifetime but as you well know since 2011 I believe 14 Pennsylvanians have
been institutionalized given the lack of funding for supports in the community.
Judy: Yes.
Lisa: Do you still feel that we’ll see the closure of institutions in our lifetime?
Judy: Yes I still believe that.
09:02:42:25 – 09:04:38:15
Lisa: Why is it, do you think, in all of you time and work around these issues that these issues
central to the disability community have kind of remained below the radar?
Judy: I don’t know but, excuse me. I think it has a lot to do with the increasing inequality in our
society, the increasing concentration of resources in hands of relatively few people. I think it is
much harder now for families and advocates to, to bring about change in the system. The
system, systems are much stronger now than they were 20 years ago. There is not as much
common ground between families and advocates on the one hand and the people running the
system on the other. It is more costly to challenge a system, it’s infinitely more costly to bring a
lawsuit now then it was 20 years ago and, and people have to work much harder and all of us,
17
you know including families with children with disabilities, are having to work harder at jobs
and have less time. It’s, it’s just a much greater challenge now then it was.
09:04:40:15 – 09:09:35:13
Lisa: Judy, I know that you’ve done, also, extensive work in the area of inclusive education and
although we don’t have time to nearly touch on the breadth of that work that you have been
involved in some significant cases, one I’m think of in particular is Oberti versus Clementon
which I believe was in 1993 and I wondered if you could tell us what was significant about that
litigation?
Judy: Well that case was brought by my colleague Frank Laski and I did some work on it in the
initial phase and it really made major president in this jurisdiction in the third circuit. It was a
case on behalf of a child who was in first grade at the time, Raphael Oberti whose parents
wanted him in his home school district in regular class to the maximum extent possible and the
school system in New Jersey had sent him to a neighboring school district where he was
educated full time in a self-contained class. So after a hearing in the Office of Administrative
Law, which upheld the school district, Frank filed a case in Federal Court and a very wonderful
visionary, Judge Gary, the late Judge Gary, ruled in favor of Raphael after a three day trial and
then it went up to the Court of Appeals and resulted in a very wonderful decision which I still
find new things in it almost every time I read it, it’s very rich and it really laid the ground work
for cases on behalf of children with significant disabilities in this jurisdiction. And using that
case as ammunition we’ve gotten inclusion in regular class for kids with every disability you can
imagine, sever and profound retardation, multiple physical disabilities, mental health
disabilities, autism, the list goes on and those cases have been very successful and resulted in
great improvements in people’s lives. And Raphael’s story was very interesting because after
the court of appeals decision came down he moved to Pennsylvania, his family moved to
Pennsylvania and he continued to be included, because of the original court’s orders,
throughout his schooling he was educated in regular class for most of the school day but when
he reached high school he did not have, he did not have transition services that were really
designed toward the outcome of a real job in the real world and the school system would not
agree to provide a job coach for Raphael so he could learn a real job. So his father decided to
serve as his job coach and helped him get a job at local CVS store and taught him the job, on
the job, did a really great job and by, we had a due process hearing to challenge the lack of
appropriate transition services and by the time of the hearing Raphael was completely
independent on the job. He would go to work independently, he, he was really the best worker
in the shop, I think, and we had an evaluation done at the time of the hearing in which a team
of people from an agency that does this sort of evaluation posed at customers and rated
18
Raphael, compared him to his coworkers on every aspect of the job and they found that he did
more parts of the job, he took fewer breaks, he worked harder than just about anybody in the
place and the school district continued to take the position that he could not work because of
his diagnosis of mental retardation and, and they refused to accept the fact that he was already
working. It was a very strange hearing but Raphael prevailed.
09:09:41:04 – 09:12:23:29
Lisa: And, Judy, you’ve supported people with disabilities and parents through litigation, due
process hearing, many ways and so you’ve had, you know, really a unique sort of exposure to
the parents movement in Pennsylvania. How strong do you feel the parent’s movement is
today?
Judy: Well as I said I think it is much harder now, parents have to be much stronger now to, to
resist the system, to change the system then they have, have ever been and one of the
problems in the system is that it’s, in the parent movement is that it’s somewhat fragmented.
There are, there are still divisions between parents who want inclusion and parents who accept
continued segregation and who accept the view of professionals that this is the best way for
their children to learn. And of course many parents still want a cure. I think we see it most of
all among parents of children with autism who believe that with applied behavior analysis they
can essentially cure their children’s autism. So it’s, it’s hard to say how strong the movement is
today there certainly are, are many parents who are carrying on the struggle, younger parents.
I think the, one of the problems is that parents need to be supported by organizations, they
can’t just act alone they need to be part of a movement and the organizations that lead the
movement such as the Arcs have their own difficulties surviving in the present economic
climate and so I think I, I think the question is really not so much how strong are the parents but
how strong are the organizations and how can we build those organizations so that they are
strong enough to support the parents.
Chapter Seven: Ongoing Advocacy
09:12:30:26 – 09:13:46:20
Lisa: And, Judy, your work has really secured the rights and literally the freedoms of maybe tens
and, tens of thousands of people with disabilities in Pennsylvania and throughout the country.
Enable them to go to school, to work in communities of their choice, these are incredible
accomplishments but do you feel that you’ve accomplished all that you wanted when you
started your career?
19
Judy: Oh no. Oh no there is so much more to be done. In New Jersey where I work now, New
Jersey is one of the most segregated states in the nation both in education and in residential
services. New Jersey’s institutions are still alive and well and have a lot of political support.
New Jersey is about third from the bottom in inclusion of children with disabilities in regular
classes in the school system. And yet New Jersey is one of the most wealthy and well educated
states in the nation so it shows us that we have a long way to go.
09:13:53:00 – 09:14:51:11
Lisa: I wanted to ask you what you’re view is of meaningful inclusion.
Judy: Well inclusion to me means that people with disabilities are in the same places that they
would be if they didn’t have disabilities. For children this means school, for adults it means
work, for everyone it means neighborhoods, community and it means that they have the
support that they need to flourish in those setting, it means that they have friends, that they
have relationships with coworkers, with other children, with people who do not have
disabilities and that they are fully valued as participants in those settings.
Lisa: Thank you.
20