Chapter 3: Work Involving State Centers

Lisa: Thank you. Ilene, in some of your early work you had worked around issues of mental health, um, but certainly, um, your work , um, around The Philadelphia State Hospital also known as Byberry kind of brought together both the developmental disabilities world and the mental health world to some extent. Um, I know that Byberry was closed or at least the state announced that it would close Byberry in 1987. The actual closure and the movement of residents from Byberry into the community was much longer and much more complicated. I wonder if you could tell us a little bit about that.

Ilene: I think when the governor announced the closure of Byberry, I think his intention was to close Byberry and merge, uh, it with another facility. I don't think the idea of moving the residents or certainly all the residents of Byberry into the community was on their radar screen. Uh, what happened is, basically two things happened, um, Steve Gold and I filed a lawsuit, um, on behalf of the residents of Byberry, claiming that they had a right to live in the community. At the same time a coalition formed, I think it was called the Coalition for Responsible Closing of Byberry State Hospital which really had some terrific people, uh, who committed themselves to several years of work and did all the advocacy, the public relations, the political and media work around the closure so the lawsuit was just a small piece of that. You had this, this coalition which really did, uh, the core work around the closure.

02:02:22:10 - 02:04:14:03 Lisa: How important was the public relations and media work to this case?

Ilene: It was very important because, uh, there was some very, well, the, the heart of the worst part of it, is that early on, um, I think things went to quickly and were not done carefully enough and three people died very early on in the, uh, process of moving people to the community, um, obviously that was a public relations nightmare for the governor but also from an advocacy perspective. We were concerned that, that was going to result in everybody staying in institutions to protect them, their safety. So that was one piece but throughout the entire process, uh, media was, was a big part of the closure. People were concerned about what were going, was going to happen to people. Even today, people say to me, um, Philadelphia State Hospital or Byberry closed and all those people ended up in the street. None of those people ended up in the street. Every single one of those people had a plan of where they were going and if they ended up in the street and there were very, very, very few of them. It was because that's where they chose to go and even then there was continued outreach to them on the street continually asking them to come live someplace else. So every single person was tracked. There was a program for every single person, um, while there was an increase in homelessness due to whole lots of reason including federal, decrease in federal funding for housing, um, it was not the closure of Byberry which caused people to be out on the streets.

Lisa: Um, please correct me if I am wrong but it seems like the reason people were tracked and receiving services is because of the advocacy that you brought because initially I think 90 people were moved from Byberry to the community and were kind of lost in the system.

Ilene: Correct and one of the things that we required as part of the lawsuit was that they'd be found and that in fact happened as part of the settlement.

02:04:16:11 - 02:04:59:23 Lisa: Thank you. Um, why is it that, um, DLP and the P&A didn't have a role in the closure of Pennhurst?

Ilene: We certainly weren't doing this kind of work back then. Uh, my only work in Pennhurst was that I represented some individual clients who had some issue, interestingly in front of the Pennhurst master with whom I shared office space but, um, we never discussed those cases, of course.

02:05:01:00 - 02:06:34:06 Lisa: Well, though you, the Pennhurst predated your work, um, you certainly did play a significant role in the closure of other institutions. I'm thinking, particularly of Western Center and Embreeville.

Ilene: Well, really there... I've never really sat down and made a list but there really have been quite a few, Embreeville, Western Center, Southhampton. Uh, one of the biggest cases we did, did not result in a closure which was around Laurelton which is the Carolyn Clark case. Individual client but that has in turn resulted in a lot of, uh, people getting into the community.

Lisa: Ilene, just before I ask you about those cases and I do cause there very fascinating and complicated, I'm curious about your own experiences with institutions. If you had personally visited any of these centers and if so, what you remember, what your impressions were?

Ilene: Uh, I, the first, when I first started practicing back when I was with legal services, I used to spend probably two days a week just hanging out at the state institutions because that's how I found clients. Here I worked for legal services and I was told your job is to represent people with mental illness. Well, how do you do that? So I used to just hang out in the canteen and meet people and spend a lot of time at the institutions. So, actually I did spend back in those days a lot more time, uh, I mean obviously I went out every time I had a client, I went out to interview them but I used to just sort of hang out there because that's how I found out what it was like and what was going on. Um, after that, um, my occasions to visit institutions many times over the years was usually for a specific purpose, either a monitoring or to meet with somebody.

02:06:34:17 - 02:07:35:16 Lisa: And so, what were they like. What was going on?

Ilene: Um, I don't think we saw, I saw, uh, the conditions ever as bad as they were at Pennhurst but we saw some very, very bad things. I mean, there was always the terrible smells, uh, a level, a volume of noise that was just intolerable. Like you just couldn't think because it was always so noisy and it was always so hot. I would become tired as soon as I walked in the door. There was this, this sort of feeling of the heat, the noise, the smells and it just, you sort of, your system was just shut down and of course I witnessed some very negative things that just, is what you see when you, when you, when you, uh, visit these places. Uh, and interestingly, it was almost like we weren't there. I mean, when we first would get there, they would make a big fuss over the fact that we were there and then after an half hour an hour they'd forget that they were, we were there and life would just go on as it was and we would witness the kinds of things that you really just don't want people to be subjected to. Um...

02:07:38:01 - 02:08:49:13 Lisa: Thank you. Um, The Embreeville Center, um, maybe to start with, had been under investigation by The Department of Justice since the late 60's, no, sorry, late 80's, '86.

Ilene: Well, we really need to predate that a little with Western Center.The community was extremely, um, advocacy community, parents of consumers were very concerned about Western Center and what was going on there and there was a lot of talk about maybe we should bring a lawsuit around Western Center and then one day a boy was, a 14 year old boy was killed through prone restraint and it was like within 24 hours after talking about this for about a year, within 24 hours the community had decided that's it. We want a lawsuit.

Lisa: Exactly what you mean by prone restraint.

Ilene: They held him on the ground, um, and restrained him by sitting on him basically and stopped him from breathing and he died. Prone restraint is the most dangerous, uh, type of restraint because there is this huge risk of dying from suffocation. Uh, and it should be illegal everywhere.

02:08:49:15 - 02:10:04:28 Lisa: And was it a common practice at Western?

Ilene: I don't know how common it was, uh, the other thing that happened at Western is that the department had sent someone in undercover and so we had volumes of documents of what was going on there. It was not a good place. So The Western Center litigation was, was completed and part of the settlement of Western Center was this notion that Embreeville would also close. Um, and I don't remember if that was enforceable piece was it was definitely discussed with the department and the idea was that both centers would close and of course that didn't happen and so when it didn't happen, we then looked to Embreeville. Meanwhile The Justice Department had brought a conditions case at Embreeville and we intervened to say, no, we don't want Embreeville fixed up. We want Embreeville closed and interestingly and this really is quite different than The Justice Department was back in those days. They came to agree with us. Now The Justice Department frequently goes in and talks about implementing, uh, The ADA and closing institutions. Back then, they only did conditions cases but in that case they were open to the idea that, uh, community alternatives was, where, was a legitimate remedy for an institution that had some very, very serious problems.

02:10:05:19 - 02:13:17:01 Lisa: Before we spoke, you said that those cases were sort of perfectly litigated and yet they didn't result in a closure. Why, why not?

Ilene: I'm not sure I understand. They...

Lisa: Maybe I have that wrong.

Ilene: Ok. Well, neither case, uh, both cases were ultimately settled and if that's what you're asking me?

Lisa: Maybe, yes.

Ilene: Both cases were settled as was Pennhurst.

Lisa: But, um, they both were settled, um, the, the Embreeville settlement in some ways was a very good, uh, settlement for how to close an institution. Um, each individual was planned for. A person had a plan developed for each individual. Each individual was, developed a program to meet his or her needs. Unlike Pennhurst where there were special protections set up for the individuals, the idea in Embreeville is that whoever left there would ultimately come part of the system as it existed but before the case would settle, would close, an expert would look at how they were doing so, uh, over the period of the implementation settlement the residents were given community options, uh, it was done in a really positive way. They, a lot of involvement with the individuals, their families, the family group in fact came to form and support the litigation. They were also party to and they supported, ultimately the closure, um, and, uh, developed in fact, a monitoring system which is still in a place today and then the ma, the master that we had all agreed on, or I don't know if master is the right word. The monitor, I suppose is the right word, uh, would then go out and look at everybody or do a, uh, at least enough of a survey to get a sense of how people were doing and he found that things were not as they should be. And the two issues that keep, kept reoccurring and really still reoccur today is medical and psychiatric care. Noticed there was a whole lot of problems around those two areas. Um, in some ways, there the most measureable areas and so if you have problems there you're going to be able to see them and so they had to then reform, uh, what they were doing around the class members to come at the clients with the report of the, uh, monitor and I believe that was the creation of the HICU. I believe, they were created, uh, out of the Embreeville case to help the providers provide better medical and psychiatric supports. Things would happen like, someone would go to a psychiatrist but they wouldn't, their records wouldn't be there for them or they were prescribed medication and nobody was coordinating the different medications they were on. There were just a myriad of problems around those, in those two areas, um, and they then, uh, formed the HICU. Things improved, the monitor did a second review and he found them in compliance the second time and then the case ended.

02:13:19:00 - 02:14:19:25 Lisa: Ilene, you were just talking about some of the, um, the smoothness of the transition, um, from Embreeville, um, had to do with some of the involvement with parents, um, who were involved in the monitoring and supporting the process which was not necessarily the case, I believe in Western Center.

Ilene: Western Center, uh, there was a, uh, uh, very high level of opposition by a small number of parents. Um, they sued to stop the closure. Uh, I believe the last lawsuit just settled relatively, just resolved relatively recently. Um, in fact I don't even know the status of it but they sued, uh, the department. We were not in the second lawsuit. The first lawsuit sued, I believe 17 parties. We were in that lawsuit. Um, the, the closure was not done as well as it should have been by the department. Uh, for varieties of reasons. Um, in the end, they, the last group of people had to come out under police escort. Um, it should have and could have been done differently. Um

02:14:20:05 - 02:15:32:13 Lisa: What did they do that was wrong?

Ilene: Well, one of the things I think they did was they, they didn't move out anybody where there was parental resistance, knowing that they were going to close the place and everybody was going to leave. You don't leave, you don't let the people where there's resistance sort of concentrate 'til the end. It would have been much better if they had sort of taken people out in a more diverse way so that some, um, why were able to do Embreeville in such a different way, uh, part of that is to the credit of Ed Tiryak, who was the attorney who represented the parents and said to the parents, what I've said to many parents over the years. You can put all your energy into fighting this and you won't win or you can put all your energy into getting the best things you can get for your sons and daughters and you will win and I think he told, you will win, you will get for them what they need and I think he told them that and they made a decision, rather than fight it, to put their energy into getting the best results for their sons and daughters and that's what happened in Embreeville that was very different than Western Center. So they fought it bitterly, the parents fought it and again it was a very small minority of parents fought it bitterly, uh, to the end. Way past the end, for years and years afterwards it was still in litigation.

02:15:33:10 - 02:17:17:13 Lisa: Could you understand, Ilene, at all, where parents were coming from? They were fearful..

Ilene: Absolutely, I've always understood. If I had, had a child in the 50's and, uh, I was told that they couldn't go to school and there was absolutely no services or supports for them and the only way I was going to get anything for them was to place them in an institution and that was the advice that my doctor gave me and that was the advice that everyone around me gave me. Who knows what decision I would have made or any of us would have made and it's hard to criticize anybody for making the decision that they truly believed was the best thing for their son or daughter at the time. Um, our technologies changed over, fortunately and we, uh, in the 70's and the 80's became more able to provide supports in the community and in fact discovered that there were better ways of serving people but when you make that kind of choice for your son or daughter early in their life, it's not an easy thing to undo. Um, and there's also a certain level of comfort if your son or daughter is in a bricks and mortar facility. You believe that facility is likely to always exist, uh, where is if they're in the community, you don't know whether the provider will exist. You don't know, uh, what the monitoring will be so there's a natural fear and I totally sympathize with those, with parents because I can't guarantee them their sons and daughters safety in the community any more than I can in the facilities. And it's a very hard decision and you come to, you come to, you come to terms with facing a son or a daughter in an institution and I don't think you really want to revisit that 20 years later and that's really what these parents were asked to do. Most of them and really the overwhelming majority either had no problem with it or were positive about it but there was a very vocal minority who were very, very opposed, strongly opposed.

02:17:18:11 - 02:18:35:14 Lisa: Why did the state resist reforms that really are a moral imperative?

Ilene: Well, there's only so much you can do, your, you, you have the constraints of a large facility with unionized staff. I mean, there's only so much you can do to make an institution be different than it is. Um, I think you have to be fair and say that the institutions today are a whole lot better, whole lot better than they were back in the Pennhurst days. You don't see that kind, that level of, of, horrific, uh, treatment. That doesn't mean it's a good thing and it doesn't mean that's where you would want to live or I would want to live or we would want to see people live but it's certainly not the way it was back then.