Visionary Voices Interview
David Ferleger
January 17, 2013
Chapter One: Background and Early Career
07:59:19:13
Q. My name is Lisa Sonneborn. I’m interviewing David Ferleger at his offices in Jenkintown,
Pennsylvania. Also present is our videographer, Oscar Molina and, David, do we have your
permission to begin the interview?
A. Any time you like I’m here.
Q. Thanks. Okay. Uh, we’ll start with a simple question. When and where were you born?
A. Philadelphia, May 10, 1948.
Q. And can you tell me what interested you in the practice of law?
A. Sure. Uh, I started a five year medical program that Penn State and Jefferson Medical
College had.
Uh, decided not to be a doctor and majored in sociology at the University of Pennsylvania and,
uh, looking around to see what to do next I realized that, uh, the research I might do as a
sociologist would end up being used by lawyers, uh, because if you look at a newspaper
everyday a huge percentage of the, what goes on in the world has some connection to the law
and it was in the middle of, uh, various civil rights movements happening in 1969 so I went to
law school.
08:01:47:09
Q. What, um, made you interested in issues related to disability?
A. Uh, there’s two things, I think, prompted my interest. One is as the child of Holocaust
survivors I am more sensitive, perhaps, to what happens when people are treated as less than
people, as less than first class citizens and during law school I was fortunate to study what
happens to people institutionalized and spent the last year of law school spending a lot of time,
every day on a research project, uh, at the Haverford State Hospital, uh, which lead to my first
Lawyer View article, my paper for that course and lead to my creating a mental patient’s civil
liberties project, we called it, at that hospital after I graduated. But the other answer, the
second answer maybe, uh, sort of more true, is that the, uh, I’ll call it the confluence of my
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background as a child of survivors and the civil rights movement and what I studied in school
also fits with the fact, which I didn’t really realize until after I got involved in this area, that the
Nazis used every method later used to murder the European Jewish population first on people
with disabilities, whether it poison gas or other kinds of techniques.
08:03:32:23
Q. When you were done in law school you created one of the first or maybe the first institution
based law firm. Um, I’m wondering if you could tell me a little bit about that.
A. Sure. Uh, I graduated from law school. And I’m fairly sure I didn’t go to my law school
graduation since I’d already opened an office in Center City Philadelphia. I created, with two
foundation grants, the Mental Patient’s Civil Liberties Project and, uh, for my small two room
office barrowed a typewriter from an ex-mental patient and bought a door that I put up on two
saw horses for my desk and obtained permission from the head of the Haverford State Hospital
to open an office, uh, and created the first in-hospital program in the country for the rights of
people with, uh, mental illness. And that, uh, program with those two foundation grants
totaling $10 thousand for that first year is what I began my law career with.
08:04:50:05
Q. And what sort of institutional issues were you, were you seeing at Haverford, were you
encountering and advocating on behalf of?
A. Of the, we who did this was me and I had about a dozen law students from various law
schools who were working with me as advocates and Temple University School of Social Work
provided me with, I guess one could say, two social work students interest-, interested in the
organizing track so they worked with me to help organize the first in-hospital self-advocacy
group, uh, so that, to determine the priorities of the legal work we were doing I had a group of
people who were patients at the hospital to help, uh, me, me, to meet with me and to help
decide what lawsuits we would file, file. And the, uh, so thinking about a term that probably
was created later, uh, deviants in a juxtaposition which is a term that Wolf Wolfensberg-, Wolf
Wolfensberger used. Uh, our office was placed not in a high profile, high status location but by
the loading dock down the hall from the morgue. So, uh, the image of, sort of , trash and
loading and death was just sort of juxtaposed with protection of peoples’ rights. So we had a
great office until the hospital decided to kick us out.
Q. Was it unusual that they gave you permission to be there in the first place?
A. Well, it was unusual, this was the only time in the country this had been done and we
worked on both individual cases, individual advocacy for patients and also on some class action
litigation which we filed. Uh, at the time many of the subjects that are now, uh, covered by
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entire books, one could only write and I did write only a couple pages about them because
there was no law in this field. The law that had been developed up until this point was nearly
entirely about commitment rights, how you get into the hospital. There was almost nothing
about what happens to your rights once you were in the hospital.
08:07:28:11
Q. And what did the patients, um, the residents rather, um, what did they outline as their
priorities? You said you were working, um, with them as well as on behalf of them.
A. The lawsuits we filed, uh, first were one about the rights of children. The hospital had a unit
for children and at that time in Pennsylvania, uh, parents, and around the country, parents
could sign kids into mental hospitals with no, uh, protection at all for the child and by kids I
mean people up to 18 years old. Uh, so that was the first case we filed to ask for some kind of
due process or procedural protections for children in the mental health commitment process.
Uh, there was no review by a judge or by any disinterested party in those kind of commitments
and in that case the court appointed me Guardian Ad Litem of all, I forget, six or eight thousand
children in all Pennsylvania mental hospitals for the purpose of this lawsuit. And the other case
we filed, uh, it was heard by Clifford Scott Green, a Federal District Judge in Philadelphia, it was
about forced labor in mental institutions, uh, called peonage, uh, I mentioned the judges name
partly because he was a great judge and also because an issue that he decided was that
peonage violated peoples’ rights under the 13th Amendment’s ban on slavery. And Judge Green
was a black judge, uh, so this was and I think probably still is the only case that decided that the
13th Amendment slavery ban applies inside mental institutions. At the time we filled the case
there were several thousand patients in hospitals who were working without pay and without
any real value to them in Pennsylvania hospitals. The day the court order went into effect the
number dropped to 600 because, uh, the law under the decision we received forbid labor
unless it was paid, voluntary and therapeutic and the State realized they couldn’t meet that
standard for thousands of people. So, for example, the elevator operator at Philadelphia State
Hospital, uh, was a patient, unpaid, and that person could no longer be kept as an elevator
operator unless those three conditions were met.
Chapter Two: Pennhurst Conditions and Litigation
08:11:05:02
Q. David, I wanted to ask you about the first time you visited Pennhurst and maybe some of the
similarities or differences you saw between Haverford and Pennhurst.
A. Sure. I’ll be happy to talk about that. Uh. Well, at Haverford State Hospital I remember
pretty vividly imagining that perhaps this could be a good institution. Haverford was perhaps
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the newest institution for people with mental health issues in the state, uh, mostly one story
buildings, beautiful hills and paths and, uh, on large tall building with, with more security but I
thought this could be a great place if they provided proper treatment. Since then, of course,
the State has closed Haverford, uh, and reduced tremendously the use of mental health
institutions. Pennhurst is a different story. Uh, Pennhurst, uh, the buildings were very old
already, uh, back to the very early 1900s and the newest building was just as oppressive as the
old buildings. Uh, but what, what I remember most is, uh, noise and people who live there, uh,
sitting, mostly laying on floors, uh, a lot of the rocking, so called stereotypical behavior, which
I’ll say something about in a moment and, uh, a very, a very sad lack of interaction between
staff and clients. I mean, one didn’t get a sense that the staff were there to serve the clients
and it sounds bizarre to say that, uh, but unlike, let’s say, a medical setting where nurses are
there interacting with patients, coming in checking on patients, uh, the staff were more there
as keepers rather than helpers. And it didn’t seem strange exactly because it’s just the way it
was, uh, so a lot of noise and because bathrooms were setup with no stalls, no dividers
between toilets, uh, often sort of excrement on toilets or on the floor, puddles all over the
bathrooms so there was also a smell that accompanied visiting Pennhurst units. So we had
noise, smell and people who were really being house rather than receiving treatment. The, the
rocking back and forth sort of typifies life in that kind of institution. That kind of rocking back
and forth, uh, one of our experts, Phil Ruse, uh, explained, maybe it was Gunner Dybwad, I
think it was Phil Ruse, is what you see actually today in an airport where a flight is delayed and
people start fidgeting with things, uh, rocking back and forth, you know, just moving back and
forth because it gets so boring with no activity that your body needs to do something. So that’s
one thing that you could see, something that was present that you couldn’t see, uh, is why it
was that very few people were talking, a few people meaning the clients. And, uh, one reason
is if you talk and nobody answers you pretty quickly stop talking. Linda Glenn, one of our
experts and a friend, former Head of Retardation, the term at the time in Massachusetts, she
pointed out to me in another institution that a client who was walking back and forth in a large
crib cage, I’m gonna call it, that that client would soon stop walking because if she couldn’t get
anywhere at some point she would just stop bothering to try. Uh, it was perhaps at
Willowbrook or another place that it was pointed out that, uh, people in institutions who are
young stop crying because the crying doesn’t get them anything, it doesn’t get them the
attention that it normally would. So Pennhurst was, was a shock, I think, to anybody who
visited for the first time.
08:17:19:01
Q. Did you think more money would help solve some of the issues that you saw at Pennhurst?
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A. I didn’t think more money could solve the problems that one saw at Pennhurst. The
Assistant Superintendent at the time had written a book called “Dehumanization and the
Institutional Career”, I think was the title, uh, and the, the challenge of Pennhurst could not
have been solved with simply more money. First, one would have to redo and recreate the
entire place, uh, and they did that partly with the newest building, which I mentioned, the, uh,
New Horizons building was the name but what they did was create a large structure in which
people were equally ignored and equally not attended too.
08:18:12:16
Q. You had mentioned while you were at Haverford State Hospital you saw people, um, forced
into labor, unpaid labor. Did you see anything similar at Pennhurst?
A. I don’t remember seeing it although the history of Pennhurst included, like all institutions in
the state, that case I mentioned about slavery, peonage, covered every institution in
Pennsylvania it wasn’t just Haverford State Hospital but Pennhurst’s history is that as a rural
institution patients were used for labor. Uh, the farms for example raised the food for clients
living at Pennhurst, historically.
08:18:56:16
Q. Apart from some of the other abuses and neglect that you noted we’ve often heard stories
about medical testing, sterilization, etcetera, um, is that something that you also knew to be
true at Pennhurst?
A. Uh, I hesitated because a particular case and I can’t remember if he was at Pennhurst or not
and Celia Feinstein was involved in, in this, in this case so I’m not gonna try to mention the
clients name but there was a client during the, I’ll call it Pennhurst era who had a, an unusual
behavior, maybe to get attention, maybe it was a medical problem, I don’t know, of being able
to extrude his rectum voluntarily, a very strange kind of behavior that could be medically
dangerous and he was being experimented on with electric shock to try to stop this behavior.
I’m sure Celia remembers a lot more of the detail than, then I do and I became involved in that
case.
08:20:26:03
Q. In the early ‘70s the federal government, um, I guess under CRIPA (Civil Rights for
Institutionalized Persons Act) was also investigating Pennhurst, um, can you tell me a little bit,
if you know, um, what they found and what they did with those findings?
A. Well, I filed the lawsuit, uh, Halderman vs. Pennhurst, May 30th, I believe it was, 1974 and
pretty soon after that the US Government intervened in the case to join the case, uh, and put
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their work and their talent and their, uh, their wisdom sort of next to ours and we litigated the
case together. Soon after the US Government joined the case, uh, the Pennsylvania Association
for Retarded Citizens, the old terminology, joined the case as well. Uh, the US Government did
a tremendous amount work once they were involved in the case. They brought in a FBI agent
to do photography, they paid for thousands of dollars of depositions of staff at the institution,
they had, you know, some of their best lawyers involved and it was one of the most, one of the
earliest cases that the Justice Department was involved in.
08:21:51:18
Q. Actually, I remember when we had spoken earlier you did mention the particular reaction
the FBI photographer had to one of his visits to Pennhurst. I wonder if you could recount that
for us.
A. Sure. Uh, I wish I could speak to it, it would be interesting to have a history of the reactions
of many to their first visits to Pennhurst so I’ll tell you about two. Uh, the FBI agent assigned to
come and photograph Pennhurst, uh, was a fairly young guy, carried a gun, had a camera and
after his visit during which he said very little but took a lot of amazing photographs, he told me
that he had a child with disabilities and that after seeing Pennhurst he knew he would never
allow his child to be in any institution. The lawyer representing the State of Pennsylvania, uh,
Norman Watkins, he visited Pennhurst, of course, as part of his trial preparation and, uh, he
threw up from what he saw. Uh, and later in his final statement to the court at the end of the
trial I believe he began by saying to Judge Broderick we are not here to defend Pennhurst, so I
think he was very affected by what he saw.
08:23:56:11
08:24:11:25
Q. David, can you tell me about, um, Winnie and Terri Halderman? Who they were and, and
how it is that Terri came to live at Pennhurst?
A. Uh, sure. Uh, at the time parents could place people into institutions without any real
process and, uh, Winnie Halderman, like many parents, fairly typical, uh, could no longer take
care of her daughter at home and had her admitted to Pennhurst. Now, uh, that process for
many parents was very difficult and I know from the literature but from what I saw how and
from testimony that we had at the trial that, for parents, it was often the most difficult day of
their lives the way they described it. It was very heart breaking for people who’d worked so
hard to care for a child with disabilities at home to put them in a place, sometimes far away,
and it was true for Winnie Halderman and her daughter. Uh, her daughter’s experience, which
is what Winnie Halderman came to me with, was awful at Pennhurst. Uh, how did I come to
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know them? This is a very important part of the story and although I wrote about it in an article
(indiscernible) very sort of unknown and really significant, I think, in the whole development of
this lawsuit and other lawsuits. Uh, Winnie Halderman called me one day on the phone and
told me that she had a daughter at Pennhurst and wanted me to file a lawsuit against
Pennhurst. Why, how did she come to call me? Uh, Robert [Spilavitz], the Assistant
Superintendent at Pennhurst, she had first gone to him to say help, my daughter has broken
bones, unexplained injuries, uh, is really, uh, in harm’s way, what shall I do. Can you help? And
he told her call David Ferleger and sue me, uh, which she did. Uh, and a good piece of the
initial paper filed in court, I can like visualize it as I talk to you, is a list that went on for several
pages of all the injuries that Terri Lee Halderman had suffered, broken bones, bruises, uh, other
sorts of injuries. One example is that she was found one morning, it was probably in the
morning, bleeding from the mouth and the staff person at Pennhurst, uh, looked in her mouth
without getting any medical or nurse consultation, decided something that the staff person saw
was a tooth and started pulling on the supposed tooth but it was actually her bone in jaw that
was being tugged on and that fits that, like uh, unawareness or lack of attention to the pain of
the person in front of you fits with the fact that at Pennhurst the dentist did not use pain killing
medicine for tooth extractions. Uh, and I’ve had, thankfully it’s a while ago but not so much a
while ago, I’ve had an insurance adjuster tell me in the case involving someone with
developmental disabilities that people don’t suffer as much as the rest of us if they’re disabled.
I had a deposition this year involving the death of a man at a group home in Kentucky, the other
lawyers asked one of the family members, a brother, did Roland feel pain, was he able to feel
pain. This, Roland was a 21 year old guy with Autism who was not verbal and even today, 2012,
2013, there are people who doubt that people can feel pain when they have significant
disabilities. Uh, so Terri Lee Halderman was in terrible shape and soon after Terri Lee
Halderman’s mom came to me other parents came to me, a parent association leader, Allen
(Indiscernible), came to me and several other people joined the case.
A. Uh, there was a 32 day trial in the Pennhurst case, altogether 32 days, and during the trial
the parents of every one of the named Plaintiffs testified, of course, uh, and I met with each
parent, uh, sometimes a single mom, sometimes a husband and wife, before their testimony
and every parent, when we talked about, uh, closing Pennhurst, replacing it with Community
Services, every parent when I met with them said that if we had adequate Community Services
they would want their child out of Pennhurst then, _____would then be able to close because it
would not be necessary. And every parent of a Plaintiff, including Winnie Halderman, testified
that way in court. So Winnie Halderman told the court like every other parent did that
Pennhurst could close because it wouldn’t be needed if their kid got Community Services, which
they would want for their kid. Uh, perhaps she didn’t think she would win the case, I don’t
know, uh, but after the decision, after the development of a lot of activity against the ruling by
a pro-institutional parent group, originally a parent and staff organization, Winnie Halderman
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said, some place or other I’m not quite sure where she first said it, that she didn’t want
Pennhurst to be closed.
08:32:07:02
Q. She actually did an interview - Winnie gave an interview to the Philadelphia Inquirer and said
that if Terri was sent home she would kill her so obviously her feelings were running high. Do
you have any idea why she would have done that? What did she think would be so terrible
about home for her daughter?
A. I don’t know. She never told me.
08:32:29:11
Q. Ok. Um, you did mention that there were both pro closure and against closure parent
groups at Pennhurst. Um, I wondered if you could tell us, if you remember, a little bit about
some of the parents involved and, um, why there was such, why there were such differing
opinions?
08:34:25:02
A. Every parent, of course, had hope for Pennhurst and hope for their children at Pennhurst.
Uh, nobody consciously put someone into the institution thinking that they would be harmed
or abused or mistreated. So for many parents there was a disillusionment, if that’s the right
word, when they saw what happened. Terri Lee Halderman suffered tremendously, her mother
was shocked and upset. Uh, Allen Taub probably the turning point for him was the day he came
to visit his daughter, Linda, uh, who was mobile, she could walk, she could move around, uh,
and he found her tied into a wheelchair sort of thing and the staff person said we put her there
so we’d know where she was, we could keep track of her. And that very much shocked and
upset him. Uh, Terri Lee Halderman could talk, could say some words before she went to
Pennhurst and after some time there she stopped talking, uh, so there was not the progress
parents expected but there was regression instead. So parents were disillusioned by what they
saw and there were parents who, maybe having heard stories or out of their own fears or guilt,
just didn’t visit their children at the institution. And I have, you know, heard from families, I’ve,
indirectly, about just not going to places like Pennhurst to visit a family member. Uh, at
another institution that I monitored as a Special Master for a federal judge a sister of a guy who
lived there said she would have dinner once a week with her bother, but she would drive up,
the staff would bring the brother out, they’d go to dinner and she’d drop him off at the door
and she never went into the institution and she was a lawyer representing a parent group that
was defending that institution, uh, and she cried when she told this story to the federal judge.
So the dynamics psychologically, I’m not a psychologist, are, you know, very complex and
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difficult, uh, because of the guilt, because of the harm that people suffered and because of the
interaction of all that with the lack of services in the community for people. Pennhurst had a
waiting list, people couldn’t just drive up and have somebody admitted so it was like a prize to
be admitted to Pennhurst if you got to the top of that waiting list. So there were parents who
formed this Parent’s Association to try to help improve things at the institution and eventually
decided to join this lawsuit that I filed. And then there was a Parent and Staff Association, uh,
headed by Polly (Spare) and that group of staff and parents very much defended the institution
but I think everyone was sincere in what they believed but there are some people who perhaps
felt that things could get improved more easily and more quickly than other people who had
given up.
08:38:13:15
Q. Thank you, David. Um, I wanted to, um, talk a little bit about the trial. Um, you did mention
this before but just one more time, can you tell me when the trial began and how long it lasted?
08:39:00:11
A. The trial lasted 32 trial days, uh, spaced over a number of months depending on the court’s
schedule and, uh, I don’t remember how many dozens of witnesses were presented by both
sides but it was a very, very full record including paper, including photographs, including
experts, parents, clients, uh, we really provided a pretty complete picture of life at Pennhurst.
Q. Can you tell me a little bit about who was in the courtroom? It would be interesting, um, to
hear your memories of, of what the courtroom was like, um, what the atmosphere was like, the
people who were present, etc.
08:40:09:08
A. Um, the courtroom was crowded, crowded with parents and family of residents, uh, also in
the front row behind the defendants lawyers were state and county officials, at the top of the,
uh, official hierarchy and on the plaintiff side we often had some of our experts or other people
who supported the plaintiffs sitting right behind the lawyer’s tables. The case involved not just
the State of Pennsylvania which owned and run, ran Pennhurst but, uh, the five counties
contiguous to Pennhurst because we had sued both the counties and the state. The counties
being responsible for helping put people into the institution and needing to be responsible to
help move people out. Uh, so the courtroom also had, uh, some courtroom artists cause no
video was allowed in the courtroom so some of the photographs in my conference, not
photographs, some of the drawings in my conference room are from the artist who drew for
the TV stations. And, uh, it was a pretty active courtroom, people going back and forth,
witnesses coming in and out, uh, the lawyers had small rooms outside the courtroom to confer
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with people and to keep a lot of records and, uh, the judge kept very good control of the
courtroom. But it was, it was our home for many, many days.
08:41:55:00
Q. You mentioned the judge and of course you’re, you’re talking about Judge Raymond
Broderick. Um, I wondered if you could tell me a little bit about him and perhaps what about
the case spoke to him, do you think?
A. I love talking about Judge Broderick, uh, as you know. Raymond J. Broderick had been a
Lieutenant Governor in Pennsylvania under Governor Shafer, both Republicans, both
conservative and Judge Broderick was a conservative judge. He cared, as a Lieutenant
Governor, about people with disabilities, he helped people get into the institution, he helped
get people admitted when he was a politician to Pennhurst because there were no alternatives
and he, I, probably felt proud of that at some level. He also, while he was Lieutenant Governor,
had the insight, which many people even now might not have, that instead of a State
Department of, uh, Retardation or Deputy Secretary which we had for so called mental
retardation, that it was really an educational issue and he tried to push advocates in the
government to cover developmental disability services under the Department of Education not
under the Department associated with disabilities. So, we didn’t know this at the time we
filled, uh, but he was very concerned about the people we would be talking about during the
trial. He was also one of a three judge panel in the case involving the rights of children that I
had filed back, uh, months before and in that case he later, uh, dissented from a ruling in favor
of the children because he felt, he said in his dissenting opinion, uh, later praised by the US
Supreme Court, he felt that parents normally wanted what’s best for their children and that
one should respect the rights of parents to make decisions about the, uh, mental health or
disability care of their children. So he really came into the case as a conservative, not a civil
rights activist, not a, somebody who, uh, was critical of parental decision making about care of
their children and he changed during the trial. Uh, it was fascinating to see the change. Earlier
in the trial, in an early point he questioned our main thrust which was we could replace
Pennhurst with community services and he asked out loud during the trial, maybe we need at
least one facility, one institution for this part of the state. And then he heard more and more
testimony, more and more experts and then in the middle of the trial he said well, maybe we
need, only need one institution for the entire state. Uh, and toward the end of the trial he
finally said, from the bench, uh, maybe it’s time to sound the death knell for institutions for the
mentally retarded. Uh, at that point we knew we’d won the case. Uh, and in a similar kind of
evolution, when we put into the FBI agent’s photographs he ordered that little white stickers be
put on the face of every one of the residents, uh, for their dignity and out of respect for them.
And during the trial we didn’t use the names of residents, again out of a privacy concern. Later
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on, after we’d won the case, and there were various appeals and other proceedings, at some
point he said that nobody needs to be ashamed or embarrassed about having developmental
disabilities, although he used the term retardation at the time, so that we would begin using
peoples’ names. So he changed and he explained, uh, to me and, I think, other people, uh, long
after the trial, something that affected his thinking, uh, which is that when one of the experts, a
man from England Dr. Derrick (Lancaster-Gay), testified, uh, there was a break, Dr. (LancasterGay) had to go to the bathroom, the judge offered him to come back through the judges private
door to use the judges bathroom, uh, and during their little trip together, back to the judges
office, Judge Broderick said to Dr. (Lancaster-Gay), do you really mean that nobody needs to be
in an institution and the expert said to the judge, maybe there is somebody but the only way
we would ever know is by trying it out and letting the live outside the institution. And, uh, and
that was very memorable to the judge. I also know from, you know like, conversations after the
trial, I also know from conversations after the trial, with the judge, he cared for his mother at
home even when his mother was severely compromised in her old age, uh, and he rejected the
idea of a nursing home for his own ma and he also often told the lawyers in the case that he
had a neighbor who had a child with developmental disabilities who was not let out of the
house and the family was so embarrassed that they kept this family member sort of our of
public view and the judge really was affected and very sad by, by that. So he came with some,
uh, some good baggage I would say, ready to hear the story we were telling.
08:49:05:14
A: I’ll tell you a nonverbal story we told to Judge Broderick, tell you very briefly. People at
Pennhurst were often held in restraints, mechanical restraints, uh, leather cuffs holding their
hands together, sort of like putting your hands in like a, uh, thing to keep you from being cold
but it was made out of leather and your hands were tied into it, people were tied down to beds,
people were tied to chairs, it was a whole litany of mechanical restraints people were tied into.
And Pennhurst kept records, there were restraint forms filled out for every one of those
instances, hundreds and hundreds and hundreds. Uh, I had them all because they were
produced for the trial so during the entire trial I kept in front of our plaintiffs table eight boxes
all labeled restraint forms, uh, eight banker document boxes, two rows of four one on top of
the other and they were empty. I mean, I had decided I wasn’t going to bring to court, back and
forth, all these thousands of sheets of paper but I kept them there as a reminder to the judge
about what the experience was of people who lived at Pennhurst. So it was my visual aid for
the trial.
08:50:41:06
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Q: So I’m quite sure that the State knew certain things such as the fact that Pennhurst was
unsafe, um, that it was ultimately more costly to house people in institutions perhaps than in
the community. Um, why do you think it fought so hard to, to keep Pennhurst open?
A: I think, as has happened in other cases around the country, that the State’s position was
more about the law and trying to achieve recognition of some state sovereignty type principal
like Governor Wallace in the South decades before standing in the door of, uh, the college
keeping out a black student. So it was more about state sovereignty than about the conditions
of the institution, I think that’s one important motivation that the State had and they kept
arguing that for years after Judge Broderick’s ruling. And the other is more, call it, acceptable
reason, at least to me, which is that to make the change needed the, uh, experts who worked
for the State needed a court order, they needed to be able to use the Judge as the bad guy and
say we now need more money, more services, more opportunities to move people to the
community.
08:52:16:18
Q. Did the concern of unions and the idea of, of loss and transfer of jobs from institutions in the
community also play a role, do you think, in the State’s sort of, um, need to keep the
institutions open?
A. Yeah. The unions were and probably still are pretty powerful, uh, Pennsylvania and other
states have dealt with that issue in terms of what kind of a auspices were created for
community developments often reserving some jobs for union employees. Uh, but I think
keeping employees, uh, sort of there and happy were, was one of the factors. I don’t think it
was that large a factor though.
08:53:05:25
Q. Um, the evidence and testimony that the State’s used, did they share their records and their,
um, reports willing with you and your, your partners?
A. Well, there’s some records that the law requires be exchanged as part of trial preparation.
Uh, there were a couple things that came up that turned out to be pretty important in the
presentation of our case. In one instance I learned from an employee that records were being
destroyed at Pennhurst that were relevant to the case and I ended up, in order to get a signed
affidavit to present to the judge, meeting this employee out the expressway at some parking lot
somewhere or other between Philadelphia and Pennhurst, uh, because we needed to get an
order, which we did, that no records shall be destroyed at the institution. Uh, and that was
pretty upsetting to learn that that could even happen
08:54:30:04
12
The plaintiffs, our side presented many experts. It came time for the State, which we knew had
hired a team of three experts to present their expert report and testimony. Uh, in a big surprise
we were told in court that they were not going to present those experts. We asked for their
report and the State said there was one copy, it was locked in a safe in the Attorney General’s
office and they wouldn’t produce it. Now we felt we had a right under the rules to see that
report even if the experts wouldn’t testify and Judge Broderick, a very wise judge, uh, he said
okay, State, you can keep the report quiet and locked up but you have the plaintiffs call as
witnesses your experts, uh, so we did. And those experts, uh, I forget if we had one or all three
testify or one for the three, uh, Valadia Walker, who’d been at Temple University, was one of
the experts. Uh, the three experts hired by the State to defend Pennhurst concluded after their
study that Pennhurst should be closed, that there was no legitimate use for the institution and
that it should be replace. Uh, and now we knew why the State wanted their report kept secret
but I think that had a big effect on the judge, obviously.
Um, Judge Broderick ruled on the case …
08:56:36:16
Q. he also required that each resident have an individual habilitation plan, um, and I’m curious
about that, if that had never been done before and what he was looking for with that kind of
plan in an effort to support people in the community?
A. Pennhurst was litigated around the same time as the Willowbrook case in New York and the
Willowbrook orders, uh, like orders in, uh, Alabama, in the case called Wyatt, uh, in Alabama
had a lot of conditions around, uh, what went on in the facility. For example there were, in the
Wyatt Standards, rules about how many square feet you needed per resident, what the water
temperature should be coming out of a spigot and the novelty, I’ll call it, that’s too mundane a
word, the novelty of Judge Broderick’s order was that for the first time in the country he held
that folks have a constitutional right to live in the community and to not be confined in an
institution. There was no Americans with Disabilities Act, there was no, uh, Olmstead decision
from the Supreme Court, he based that on the constitution. So in order to create the kind of
movement and, and quality service required by his opinion there was a need, of course, to look
at everyone individually and to figure out what they needed and what kind of vision one might
have of a life of folks in the community. Uh, Judge Broderick loved to say that his basic
decisions there had never been and were never to be overturned by any higher court. With all
the appeals we had to the Court of Appeals, back again to the Supreme Court, back again, back
to the Supreme Court, uh, no court ever questioned or overruled his basic decision about the
constitutional rights of the residents.
08:58:55:03
13
Q. You just mentioned the fact that the case went back and forth in the Supreme Court, I know
that’s very complicated and lengthy process but what should we know about that. Why was it
going back and forth so much?
A. I’m happy to tell you – not very interesting story but I’ll tell you.
Q. That’s okay.
A. Uh, the, Judge Broderick made his constitutional decision, we also claim that there was a
state law of right to, uh, the kind of services we wanted. The Court of Appeals made a decision
about the state law rights, said that should’ve been reached also or instead of, uh, the case
went to the US Supreme Court, uh, which ruled that, uh, a federal court can’t enforce state law
rights in a federal case against the state, overturned 200 years of American in a five to four
decision, that was the second decision of the Supreme Court. The earlier decision was about a
federal law, the Developmentally Disabled Assistance and Bill of Rights Act and in that very, uh,
unusual decision the US Supreme Court held, with Chief Justice Rehnquist writing, that even
though there was a law, federal law, called Developmentally Disabled Assistance and Bill of
Rights Act and even though there was a section of the law called Bill of Rights and even though
there was a section of that section that talked about the rights of people with disabilities that
that law could not be enforced and that it did not create any rights. In the Lawyer View article I
wrote about that decision I had one of those old sentence diagrams that you do in like grade
school analyzing the structure of the sentences that Chief Justice Rehnquist was interpreting.
So, eventually, uh, and this is really the important piece, eventually we got back, again, to the
Court of Appeals, after losing twice in the Supreme Court, after three arguments in the
Supreme Court, we’re back in the Court of Appeals and the Court of Appeals probably is tired of
hearing this case over and over, as we were getting, the Court of Appeals appointed one, uh,
member of the court, a retired member, an inactive judge as I recall, Judge Max Rosenn, to try
to, uh, mediate and come up with a settlement of the Pennhurst case.
09:01:57:25
The Court of Appeals appointed Judge Max Rosenn of Scranton to be a mediator, to try to help
the parties settle the case with no further, uh, appeals. Max Rosenn had been Secretary of the
Department of Public Welfare in Pennsylvania so he knew what he was doing, he knew what we
were doing and with help, uh, we worked out a settlement of Pennhurst that called for the
closure of the institution and its replacement with community services.
A. As I remember it, it was before the case went to the Supreme Court for the first time, now
after Judge Broderick’s decision until the final settlement it took many years, maybe seven
years at least, we decided to give the State and opportunity to end the case and close the
institution as we wished and to somehow figure out what kind of deal we could reach that
14
would protect the people at the institution, help them leave and fulfill the needs that both sides
had cause we knew the higher state officials wanted an expansion of Community Services. Uh,
so we met with Jennifer Howse, then Deputy Secretary for the department, and she was willing
to close Pennhurst but wouldn’t say so publically, she was not willing to agree to that out loud
or on paper. She said it in the elevator, uh, as we went up to have these discussions, uh, she
was willing to say she would reduce the institution to perhaps a hundred residents, uh, from
many hundreds of residents, uh, and we, the lawyers in the case, myself, um, Tom Gilhool,
Frank Laski, uh, you know other lawyers, uh, we were stubborn. I mean we wanted the
principle that the institution should close, we wanted to uphold Judge Broderick’s expansive
ruling and we refused her, her offer. It was, looking back, a pretty good deal she was offering
because no state would keep the institution, any institution open for such a small number of
people. So that decision, as I look back on it, was one which, to be fair to the truth, resulted in
hundreds of people remaining at Pennhurst for years longer than they probably otherwise
would have.
09:05:03:04
Q. Teach you anything about compromise, do you feel?
A. Well in retrospect, you know, we probably should have taken that deal, uh, because it
would’ve helped people to fulfill their lives much more quickly than ended up being the case.
Chapter Three: Pennhurst Implementation
09:06:03:17
Q. Why was the Special Master’s Office necessary?
A. I’ll tell you that and I’ll tell you about the fines too.
Q. Okay.
A. Uh. The systemic change that the Judge’s order require, uh, was very complex. It involve
corralling the counties, the state, officials from both and the, uh, funding and legislative support
that was needed both locally in counties and in the state and it involve, uh, making sure that a
very complicated order the judge had issued was obeyed and the judge decided that in order to
do that you needed the help of an expert in the field who could be his eyes and ears and also
enforce what needed to be enforced. So an Office of the Special Master was created, Carla
Morgan spent years doing that work in a very professional way, bringing in some great staff to
do that. At some point the State decided we don’t want to cooperate anymore and the way
they did this ended up earning them a contempt citation from the judge because the Secretary
of Public Welfare did not make the decision on her own. What ended up happening is that the
15
legislature passed a law saying not money from the department shall be used for Special
Master.
09:08:07:23
The difficulty was that the Secretary of Public Welfare, in testifying to the legislature, said I
can’t stop paying the judge’s Special Master but you can if you want to make a law forbidding
me and that she would like that law to happen. So the judge found the Secretary of Public
Welfare in contempt of court for her encouraging actually defiance of his orders and the State
paid $10 thousand a day, delivering a check every day for $10 thousand to the federal
courthouse until it had built up to a million dollars which happens to be the budget per year of
the Master’s office. And at that point the contempt ruling, which had been upheld by the Court
of Appeals, was about to be heard by the US Supreme Court and then Judge Broderick, a very
clever judge, he said well now that I have a million dollars in the bank I can free you from
contempt, thereby making it impossible for the Supreme Court to hear the case and funding the
Master’s office.
09:09:27:08
Q. Even before the Pennhurst litigation Pennsylvania was exploring, albeit in a very limited way,
models of community living. What did the Temple studies, the Special Master’s studies,
etcetera show about how people were fairing in the community after leaving Pennhurst?
09:10:23:13
A. During the trial we emphasized to the judge that for every person in Pennhurst there was
somebody outside of Pennhurst with the same needs, uh, who was being served just fine in the
community. Uh, and, uh, there were, was a lot of work done by Temple University, uh, and
others in this field to show that that kind of, uh, those kind of facts were not unusual, it was a
common and very easily shown. Uh, later the federal government funded, uh, the Pennhurst
Longitudinal study of the implementation of the judge’s orders and Temple University and the
Human Services Research Institute cooperated in that effort with HSRI doing more of the
political side, I’ll call it, policy side and Temple looking at individual people as they were leaving
and how they fared. Uh, so that enabled us to have data, not just theoretical, not just if I’d
been in an institution what would my life have been like or if I had left the institution then, you
know, what would, changes would have happened. So the most salient facts for me are
number one, that folks who left the institution often after many years, some very elderly
people had been at Pennhurst, did terrific in the community and that they’re, uh, level of
functioning, quality of their lives, uh, increased, uh, dramatically. And that was important
because for many people, Terri Lee Halderman for example, uh, she went backward at
Pennhurst and we could show, and the folks who know how to do this kind of research could
16
show, that instead of regression and/or stasis that had gone on for years that people who left
the institution where capable of learning, were capable of moving and advancing in their lives
so that was real important because an argument for institutions is often that people can’t do
any better than they were at the institution. The other thing that was real important is the
reaction of families, uh, because families that had been opposed to placement into the
community and had been measured, you know, to the hilt by Temple as being oppose, opposed
that once the lives of their family members in the community, uh, virtually universally those
families changed their mid and were happy with what happened. Uh, Judge Broderick
addressed that issue in an interesting way. There was another Special Master, uh, that the
judge appointed, uh, Michael Lottman, a great lawyer in this field. And the judge appointed
him to address objections to placement by residents or family members and he held hearings,
uh, if necessary and meetings with families, Pennhurst, the counties to address families worries
about a particular placement and except, I think, for one case which went up on appeal he was
able to resolve all those issues. Uh, because what he did was get people together, the family
said I’m worried the stove could be dangerous for my son and he figured out a way to make the
stove a safe place or I’m worried the driveway of this house goes right into a busy street so
maybe Michael helped the parties and the county to figure out a different house or some
protection around traffic safety. So it showed that there could be a resolution of families
worries, uh, that would lead to an easier placement.
09:15:04:05
Q. When did the Pennhurst lawsuit finally settle?
A. Uh, 1985, I think.
Q. I believe around the same time, maybe even the same day you could probably tell me, um,
there was also a settlement announced in another case the one of Nicholas Romeo, um, and
attached to that case was the Supreme Court’s, the US Supreme Court’s first and only definition
of the rights of people with intellectual disabilities. Um, it affirmed, as you know, that people in
institutions have the right to safety, to freedom from restraints and, um, training if a lack of
training was perceived as harmful. Um, do you think that the success of this case would have
been possible without the success of the Pennhurst litigation?
A. Well, that’s an interesting question. It’s a good summary of the Romeo case by the way. Uh,
do I think the success of Romeo would have been possible without the Pennhurst? I’m happy
to think about that and talk about it. In, in my opinion the (Youngberg) vs. Romeo case and the
Halderman vs. Pennhurst case have very little to do with one another, uh, that might surprise
some people. The Romeo case involved one plaintiff and it was damages only and the question
was what kind of damages can one obtain for the kind of abuse someone suffered at the
17
institution. We had asked Judge Broderick for damages in our class action and he decided not
to deal with that and to deny damages for the whole class. In the Romeo case during the
Supreme Court argument, uh, my friend and a great lawyer, Ed Tiriack, in answer to a question
from one of the justices said that, uh, Nick Romeo would never be able to leave the institution.
Now, that was a mistake in my view in Ed’s, uh, strategy in his oral argument but that was later
quoted, referenced by the Supreme Court in their opinion. So that case involving one person
and damages and had no relation to, uh, community placement issues so I th-, I think that Nick
Romeo would have won his case with or without the Pennhurst litigation and I think we would
have won the Pennhurst litigation with or without that Supreme Court decision or that case.
09:18:09:22
Q. In ’84, I believe, (Hastings Dice), a Pennhurst aide who had been arrested in ’82 on charges of
assault became the first mental institution employee to receive a prison sentence, you know
the case I’m sure. Um, why weren’t there others? You, you’ve talked about so much of the
abuse that happened at Pennhurst, why were more staff not held criminally accountable for the
abuses at Pennhurst?
A. It takes a district attorney to bring charges, criminal charges and I think, I can’t speak for
what charging decisions were made by various prosecutors, but I think that, uh, the needs of
people with intellectual disabilities and protection of them from abuse at that point in our
history was not seen as priority by the criminal justice system. Uh, it’s a pity that was the case,
it’s a pity it still is the case. Uh, I represent now a family of a 21 year old who died in prone
restraint, being held down by police and group home staff and, uh, I’m surprised that even
though the medical examiner found that he died as a result of being held in prone restraint, not
being able to breath, that there aren’t criminal charges brought there. This is contemporary,
this happened just a couple years ago so I can’t explain why prosecutors don’t treat these cases
like they do other kinds of criminal activity.
09:20:04:21
Q. Um, the transfer of residents from Pennhurst to the community, um, perhaps happened
more quickly than the system we ready to absorb, um, it seems as though the city of
Philadelphia particularly felt itself under enormous pressure, um, to preform but there were
plenty of times when the city was held in contempt of court which suggests that they weren’t,
perhaps, preforming to the judge’s satisfaction. Um, in 1983 Broderick had said that the State
failed to setup a system that adequately represented people with mental retardation, the
terminology of the day, um, and he asked for the State to submit certified advocate program in
five days for example. Um, do you think, I guess, in all of this the court’s demands in terms of
18
transition from res-, from Pennhurst into the community were realistic in terms of what the
system actually could offer?
A. The system at the time was not, uh, I’ll call it uniform in its willingness or ability to do what
had to be done. Uh, Chester County did an amazing job, quick job, very committed and an
organized job to move people to the community. They’re at the most positive end of the five
counties. Uh, Philadelphia, which did have the most people to bring back from Pennhurst, did
the worst job. So we did end up having to go to court especially against Philadelphia and at the
time I believe that Philadelphia was not as committed to moving in an organized way, uh, to
comply with the order for whatever reason. It was a large task that had to be done and I think
the people running Philadelphia’s program at the time, uh, were just not up to the job and they
weren’t organized enough to, to do the job. Eventually Philadelphia did create a special unit to
work on Pennhurst implementation, they brought in, uh, an experienced person from Florida,
who’d done this in Florida, help people move to the community and Philadelphia ended up
successful in their efforts. I’m glad to say that the people who were running the system in
Philadelphia learned from all that and, you know, I think they, to the extent they’re still working
in the system I have no criticism of them, you know, personally because they learned from the
experience and they have a lot more, uh, knowledge now about what had to be done. But until
Philadelphia was pressured by the court to organize itself Philadelphia, I think, was very slow to
comply.
09:23:11:15
Q. The cost of supporting Pennhurst class members in the community were relatively high, um,
and there was some, I think, talk, certainly in the media, certainly amongst parents, um that the
cost of supporting Pennhurst members created some inequities for folks who had children at
home and also wanted community supports. Um, was that a fair, um, fair allocation of funds do
you feel?
A. I filed a lawsuit to establish the right of people living in the community to get support and we
lost. Uh, I think we won before Judge Broderick then lost in the Court of Appeals. Uh, the,
that’s sort of one piece of an answer. I, I’m inclined to dispute the issue of whether or not the
cost of caring for people leaving Pennhurst was like unusually high or more than what it should
have been because folks leaving were getting and ordered to get good, quality care. Folks living
in the community were not protected by any court order so the counties could, they couldn’t
do every, anything they wanted but the counties didn’t have an incentive to provide the quality
that was required. For example, folks leaving Pennhurst, in terms of coordination of their care
and assurance of their care, had a protected ratio of 25 clients for every case manager. Folks
living in the community had case managers but each case manager had 125 clients they needed
to serve. Uh, so just in terms of case management Pennhurst residents cost more money but it
19
was because they were getting good case management and the same would apply, I think, to
other aspects of their care. Uh, to be sure though it is the case, still today, and it was the case
that people not protected by the court order were not getting the kind of services and
attention they deserved and it was unfair, it is unfair and unfortunately it’s the product of our
legal system and our social service system that when people become the squeaky wheel and
get the attention of the court, uh, they get more than, than other people. When I, uh, let me, I
want to say something, I don’t know how important this is to what you do but I urge that this
next paragraph be part of whatever you do with me. Uh, when I meet with individual clients
who want services from the system and want to change a system of care for people with
disabilities I talk to the individual person about whether or not they want to file a class action or
bring in other people or do it themselves. And what I tell people is if you do this for yourself
you’re more likely to get something that’ll help you and help you sooner because we’re more
likely to convince the state or the county to do something for you. If we want to change the
system and file it for other people, uh, we can do that but it’s gonna take many more years to
do that and you may not get what you want for many years. So within the structure of our
judicial system, uh, there are some built in incentives and disincentives to get improvements in
the social services world and when you do a class action like Pennhurst you may change it for
many more people but it may take many more years and a lot more complexity and an
individual person will get services sooner probably but not change the system. And then
there’s the third category which is those people who don’t go to court, who are on the waiting
list, who are begging for services, the elderly parents who have 40, 50 year old, uh, clients with
intellectual disability at home, they’ve been struggling to take care of them and they, today,
2013, are still waiting to get what they have a right to.
Chapter Four: Effects of Pennhurst Legislation
Q. David, um, did the Pennhurst litigation effect policies on institutionalization in other states
across the country, do you think?
09:28:38:11
A. The effect it’s had, uh, has been enormous. Number one, early on, shortly after Judge
Broderick’s decision other, uh, advocates filed similar lawsuits around the country and I
remember getting calls from lawyers saying send me your Pennhurst papers so I can copy them
in order to do the same thing in my state. Number two, and more importantly because of
Judge Broderick’s, uh, eloquence and the depth of his understanding of this issue his decision
became well known as the Pennhurst Case, the Pennhurst Decision and even though his basic
rulings were never upheld, uh, on appeal, uh, Pennhurst became the emblem of the right to
community services for people with intellectual disabilities so that, uh, I mean even now
(indiscernible) this is not anything that I personal credit for, but even now if I am somewhere in
20
the country giving a talk or calling an expert witness and I identify myself as the lawyer who
started the Pennhurst cast people in this field see it as a significant case and they, they know it
and they notice it and they remember. Uh, more importantly, I think, even than that is that we
now have, uh, in the Americans with Disabilities Act and the Supreme Court’s interpretation of
that law, we now have a statutory right to community services, uh, under the ADA and the
Olmstead case. A foot note to that though is that the ADA and the Olmstead decision are
limited and they actually allow states to have waiting lists and there are, I’ll call it, exceptions to
the rule under Olmstead that are ones that can stand in way sometimes of people getting what
they need when they need it. So I’ve advocated, uh, a return or a reemphasis of what I call the
constitutional right of community services which Judge Broderick enunciated, uh, that goes
further than the Olmstead rule.
09:32:02:04
Q., I don’t know if you’ll agree with this statement but when you brought the Pennhurst suit in
some ways you had a blank slate. Um, I’m wondering how litigation has changed since you
brought the suit, I guess what I’m really asking is could the suit be brought now?
A. Pennhurst type cases are being brought now, uh, they are being brought against state
institutions for people with intellectual disabilities and they’re being brought against nursing
homes and, and other large congregate care. Uh, they’re being brought mainly now under the
Americans with Disabilities Act and not under the constitution, uh, and I think the attack on
some of the most dismal practices at Pennhurst those attacks, I think, are less because
institutions are a little prettier and a little nicer than they used to be but they are not
necessarily ones that provide good care for, for people so I think there are Pennhurst type cases
already filed and still to be filed.
09:33:20:05
Q. You had mentioned that Judge Broderick’s decision recognized that alternatives to
institutions were a constitutional right, um, and at least that decision was never reversed by the
Supreme Court. Um, yet we still have operational institutions in Pennsylvania, why do you
think that is?
A. Oh that’s a, you know, what they used to call a 64 thousand dollar question. Uh, politics is
one answer, uh, the pressure of the need for employment in rural or other areas where the
institution is a major employer, uh, and I think, uh, an inability or unwillingness of some of the
officials who have a good heart and the best intentions to be able to, sort of, struggle through
the legislative and political, uh, maze in order to get it done. I, I think it’s, it’s very frustrating
for state officials in Pennsylvania and other places to try to get done what they want to get
done policy wise and have it sort of float through the necessary legislative process.
21
09:34:49:02
Q. Okay. Um, you’ve written about the similarities between the desegregation of schools and
the desegregation of people in institutions.
09:37:07:00
The litigation to end desegregation, uh, in the race area, uh, happened through smaller cases
and looking at smaller pieces of, uh, discrimination and remedying them and using those as
building blocks to the greater, uh, Brown vs. Board of Education level. In the disability area the
early litigation was about how you get into the institution, what protection should there be for
people in the civil commitment process and I did of that litigation, getting a lot of laws declared
unconstitutional in Pennsylvania and then the cases move toward conditions in the institutions,
uh, the peonage case, forced labor, uh, use of restraints, uh, forced drugging of people and
then the litigation started to move toward the question of why is someone in the institution at
all. Uh, so there are and one could write a book about the similarities in the way the litigation
moved. At the same time, uh, it happens that, uh, society and the experts in these two
different fields were changing and moving too. We have the political civil rights movement, uh,
that we had Martin Luther King and his predecessors engaged in and we have advanced
thinkers in the disability field who were doing the same thing. Uh, in the 1972 book published
by the President’s Committee on Mental Retardation, uh, President Kennedy established that,
uh, Gunner Dybwad wrote an essay about the future of institutions and calling for an end to all
institutionalization. That was before I filed Pennhurst and before many professionals were
onboard. In the Pennhurst case the Assistant Superintendent and later the Superintendent
testified, uh, his boss, the Superintendent testified that we didn’t need a Pennhurst. So we
have, uh, in our field that happening and in the education field the educators were learning and
talking about the harm of segregated schools to black children and the need for change. So
that parallel advocacy, not parallel in time but sort of sequential but parallel in terms of the
stigma and the failure to recognize the capacities of people whether black or intellectually
disabled, uh, it sort of happened in similar kinds of ways. I did a presentation with my friend
and expert Ruby Moore at a United Nations conference on normalization, uh, in Iceland, uh, the
poster is behind me from the conference, and what we looked at was evolutions in advocacy
and what we found, without going through all the detail, what we found is from the time the
advanced thinkers conceive of some need for policy and practice development, until the time it
gets implemented in rules and legislation it takes 15 to 20 years. Uh, people who knew about
work and the possibility of employment for people with disabilities, they had those ideas, they
did the first efforts, by the time it gets into legislation it’s 15 to 20 years later. So, you know,
one thing one must learn in this field, in any field is patience.
09:41:11:00
22
Q. I was going to ask you, knowing how hard it is to change systems, how long do you think that
it took to achieve or if we’ve achieved meaningful remedy from the time of the Pennhurst
litigation. You were just talking that sort of evolution from the, the sort forward thinkers in the
movement to actual implementation in the community about 15 or 20 years. Um, would you
say that that was about how long it took in this case for your goals to be achieved? Maybe your
goals haven’t been achieved, the initial goals that you set out to accomplish.
A. Oh, they haven’t all been achieved but there are, you know, there are thousands of people in
the country who are now living in normal homes having pretty normal lives and teaching their
community around them, at the store, at the bus stop, uh, that I’m just as good as you and you
can’t call me a name anymore. We don’t, uh, I think we generally don’t tolerate the kind of
discrimination that we had before and I think the exposure of the world to all sorts of people,
uh, has change. I mean my, my children know people with all kinds of disabilities and don’t
think that they’re any different than anybody else and that’s true for a lot of people.
Q. You said that all of your goals hadn’t been achieved. What do you feel is still left on the
table?
A. Uh, well it’s probably different for different parts of the country. Uh, I mean, I would like
there to be a constitutional right to community services it’s not yet established, uh, because
one shouldn’t have to depend on the legislature to do that and, you know, I’m hoping that we
continue to finds ways to integrate people with disabilities to, to the rest of our society. And
there are, you know, challenges for people with dual diagnosis, mental health and intellectual
disabilities, that I think need to be addressed and we need to learn more about, uh, how to
teach people. Uh, there was research I just heard about on the radio yesterday about, uh, that
shows that some people who were diagnosed as autistic when they were like a, very, very
young researchers came back now, I’m not sure how old they are when they came back, and
they’re no longer autistic. So what happened? Was it a misdiagnosis originally or did they get
exposed to some life experiences that changed them? So we, there is a lot we don’t know and,
you know, 10 years from now I’ll tell you what we should have known today.
09:44:12:18
Q. So you’ve spent much of your career working on behalf of people with disabilities, um, are
we getting any better, do you think, as a society balancing an individual’s right for treatment or
help or support, um, with their self-worth, dignity and independence?
A. I think we’re getting better ‘cause that question wouldn’t have been asked 10 or 15 years
ago. Uh, 10 or 15 years ago or 20 years ago during the Pennhurst trial or soon after we
wouldn’t have been saying, you know, why are we letting people get beaten up and abused or
why are we keeping people, you know, without clothes in a big empty room and today we’re
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talking about what kind of work can we provide to people who are living in a small home, their
own home maybe and, you know, want to work and make money. Uh, a long time ago at the
Fort Worth State School in Texas a staff person was teaching a class in this institution, uh, and
there are two significant things that happened. One is he held up a glass filled with orange
sand and asked the residents what it is, the right answer was orange juice, for him that was the
right answer but these clients were s-, smart enough to know that that was really sand and
similarly he had on the black board picture of, uh, street signs, stop sign, one way street signs
and he was trying to teach people how to cross the street based on a black board. Now, today,
uh, one would be living in a home in the community and there would really be orange juice in
the glass and you’d learn how to cross the street by walking outside and crossing the street. So
those are real changes, uh, in people’s lives, in the way we treat people who have disabilities.
09:46:22:20
Q. Uh, when we started our conversation we talked about Terri Halderman, um, kind of your
introduction to this long, long journey. Um, can you tell me what happened to Terri Halderman
after the Pennhurst litigation?
A. Uh, she moved to Woodhaven, which is another institution, uh, and I wasn’t in touch with
her after that so I’m actually not sure. Nicholas Romeo, who his lawyer told the Supreme Court
would always live in an institution moved to a group home in the community.
09:48:10:18
Q. We’ve spent a lot of time really just focusing on Pennhurst, um but it was one of the biggest
catalyst for change, um, regarding rights of people with disabilities, certainly in Pennsylvania
maybe across the country. Um, you changed the lives of many, we’ve been talking about that
but how did the case change you?
A. Well, I think this case and this litigation in general teaches patience, uh, teaches the difficulty
often in making choices about what makes the most sense especially when one is trying to
make those choices that involve other people’s lives, not my own life. Teaching law students
this field I used to, uh, give them a, like a problem, a case where they’re advocating for people
in an institution in the South, no air conditioning in the summer and they have to choose
because the State offers them $20 or $50 million, do they get the air conditioning and improve
the life in the institution or do they ask the court to use that money to help people move to the
community. And those real world choices are being made every day by people who run
systems to care for people with disabilities and the choices are not always that easy so I think I
probably appreciate more, uh, the difficulty of those choices and the need to have some values
and principles that help one make those choices. Uh, so I think that development, in me, is sort
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of helped along by seeing the consequences of different choices and different lawsuits in
different states.
09:50:14:16
Q. When you reflect on your career and in particular the Pennhurst case, what gives you the
most satisfaction?
A. The most satisfaction, to me, is, uh, seeing people who lived in an institution living and
working, uh, in the community and, and having more productive lives and it didn’t take long to
achieve that. Not long after the Pennhurst case I visited a small home, several guys lived there
who lived at Pennhurst and, you know, having lunch with them, seeing them, you know, pick up
a newspaper and look at it and talk about their lives in the community. I mean, that’s enough
and maybe even, sort of, bigger then that is knowing people today who are an age when they
might have gone to an institution decades ago, uh, who are friends of mine and children of
friends of mine who are doing just fine living at home or living in their own homes. Uh, you
know, there’s, for years and years in most places in the country parents and families have not
considered institution as a (indiscernible), good alternative for what people need today. Uh,
there are people still in institutions, uh, some have called them the desert generation. When
the Israelites left Egypt they spent 40 years in the desert and the people who, uh, entered the
Promised Land, uh, were not the people who left Egypt, they had died already. So there are
some people who are still in the desert generation and I hope we can change that.
Q. Thank you.
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