Chapter 4: Significant Legal Cases

02:18:41:15 - 02:21:04:21 Lisa: Thank you. I wanted to ask you about one of your most significant cases. Um, I think, prepared collaboration with The Public Interest Law Center, um, Carolyn Clark.

Ilene: Actually, that case was with Steve Gold not with The Public Interest Law Center.

Lisa: Oh, my apologies.

Ilene: It's ok.

Lisa: Thank you for correcting me.

Ilene: Carolyn was placed in Laurelton which was then called, um, I think a facility, something, Laurelton facility for the feeble minded or had some odd name back then and she lived there from 13 to 18 and at 18 she said, well, I would like to leave now. I'm an adult now. I want to leave. I'd like a hearing. I'd like to go and they ignored that and then she turned 21 and had a similar experience and when we met her, she had been there 37 years and during that entire period had been asking to leave. Um, there was really never a reason for Carolyn to be institutionalized and so when we brought that case, you know sometimes they say the facts are very strong, well the facts were very strong in that case and the court found that her due process rights had been violated, uh, by being institutionalized for 37 years both without a hearing and that her substantive rights had been violated. What happened was, that case got a lot of publicity, in fact it was on Nightline and the department responded once they settled the case which took quite a while. Um, first they fought it by saying, alright maybe we should relook at whether this is a good idea or not. Maybe we should relook at whether we have a lot of people in the institutions who really shouldn't be there and they began, uh, really looking to move people out and I think we saw a shift in their attitude somewhat, not profoundly but somewhat of a shift in their attitude after the Carolyn Clark case. They, by the way, paid her a very significant money judgment as well and, and there was also significant money judgments paid for people who live at, uh, Philadelphia State Hospital. Sometimes I think closures happen after money judgments. I've often thought that after they get sued a few times and they lose some money then they think about maybe they don't want to really be in this business and then you see a closure.

02:21:06:16 - 02:22:22:07 Lisa: Ilene, I'm curious as to what Carolyn's life was like when she moved out at 50.

02:22:23:15 - 02:24:30:19 Lisa: Can you tell us about Daniel B?

Ilene: Woodhaven really couldn't have been considered a private institution back then. It was sort of this, um, mix of private, public. It was operated by Temple University. When the state institutions would have meetings of their superintendents, the superintendent of Woodhaven would be there so while it was technically private it was treated as public but all that is not relevant to what happened. A lawsuit was brought by two attorneys, um, about five years previous to me becoming involved and they entered into a settlement and the agreement was that a large number of people would be given the option to leave and, uh, there were some constraints in the settlement about what would happen if there wasn't money available, what have you. Um, just short of five years. The settlement was up in five years and just short of that I get this phone call. Literally the phone rings, I pick it up and it's a woman. She lives there and she's very upset and I said, what's the matter and she said, well I was supposed to get out and I didn't get out so I start looking into it and find this settlement and, uh, I call Steve Gold to, I did a lot of cases with back then and we reopened the case and we said, well wait a minute, these people were supposed to get out and they never did. And what happened was, um, the department entered into a settlement but then as funds became available over the years other things became priorities but the mistake they made was, was they never went back to the court, never told the court. We decided to put the money elsewhere so when we went back before Judge Shapiro and she found out that not only had no one ever told her that the funds were used for other things but that no one had gotten out of there. Some people had gotten out in the beginning but then for a long stretch, there were 80 people who didn't get out. Uh, she was irate to say the least so we ended up getting, uh, a settlement in which, uh, 80 people. Actually, I don't remember frankly if it was a settlement or a court order. I apologize for that but 80 people were then discharged under the Danny B, uh, agreement including the woman who called me.

02:24:32:05 - 02:24:44:18 Lisa: Do you know how that woman got your number?

Ilene: No, I don't really remember. We used to do, you know, I used to go out to the institutions quite a bit, Um, to interview people, to see people and so I just don't know how she got my number. I used to hand out cards all the time.

02:24:44:18 - 02:25:56:22 Lisa: What a call. Um, one of the cases that was very significant for you, um, eventually would have national impact, um, and I think you said, correct me if I'm wrong. Um, was really interesting because it yielded some conclusive legal theory was Helen L vs Didario

Ilene: I think Helen L vs Didario was probably the most significant, uh, legal case that I was involved in. Uh, I brought it along with Steve Gold and Robin Resnick. Uh, Robins still is an attorney with The, uh, Disability Rights Network and the three of us, uh, brought in action, uh, it was claiming that under The ADA, it was a violation of The ADA to unnecessarily institutionalize people. Interestingly, a similar case had been brought under The ADA, the statute that preceded The, uh, ADA which was section 504 of The Rehabilitation Act and that case had lost but we made this very technical distinction between The ADA and 504 and we lost and we filed an appeal to The Third Circuit and miraculously, they accepted our argument and...

02:25:56:22 - 02:27:19:00 Lisa: What was the distinction?

Ilene: When you look at the language of 504 and the language of The ADA, they were not identical and we made the argument that, that difference in language of the two statutes. The regulations in one case, uh, meant the court could interpret it differently and the court did interpret it differently and that was the first court in the country to hold that it was a violation of The ADA to, uh, unnecessarily institutionalize people. Then we're sitting there, uh, we're, nobody could have been more shocked than I think the three of us when that decision came down and we're like really celebrating, it was at night, the decision, had just gotten the decision, we're all excited and, um, a reporter calls and I'll never forget this, Steve Gold picks up the phone and they say, oh, so is this a significant case and he says, not at all. Just about one person. Of course we didn't want the case to be appealed to The Supreme Court. Uh, we felt if it were appealed, if the first case were appealed that would not bode well and in fact we did that case plus another case before the third case, Olmstead was appealed to The Supreme Court. Uh, the idea being we had established some body of loss and that when Olmstead went up there were already two decisions supporting The ADA Integration Mandate so, um, that was Helen L.

02:27:48:10 - 02:29:48:26 The fundamental question has always been, is it legal or prohibited or permissible, I should say for the state to put people with disabilities in segregated institutions just because they have disabilities? To basically incarcerate people if you want to think of it that way. That may be harsh but that's sort of how we thought of it. Um, and that was an issue, uh, both in mental health law and some of the early cases dealt with that and then ultimately became a central issue for people with developmental disabilities and it was a very hard legal theory to hobble together. We kept trying different approaches as I said, prior to Helen L, uh, the Carol Clark case was an example where, uh, the court did hold. That her incarceration was illegal but the facts were so specific. A woman who had been held for 37 years who consistently asked for a hearing and never got one. It was not something that you could generalize to everybody. Um, the difference was Helen L, uh, it didn't turn on asking to leave, it didn't turn on violating someone's due process and not giving them a hearing. It basically held that if by virtue of a disability, you are segregating somebody. That's a violation of the ADA or to put it in another way. You can't condition the receipt of services on requiring someone to subject themselves, um, to being institutionalized. So that case became really, uh, in two ways the backbone both of the legal development from thereafter around institutional litigation but also really affected the way the administration, both state and federal do business because they became, uh, committed to implementing Olmstead. So you would have Olmstead plans. One of the things The Supreme Court said was that if you had a plan that could be used as a defense to Olmstead litigation so every state had a plan and had to be a plan that was actually happening. You had to actually be doing something, you couldn't just put it on paper. Interestingly, Pennsylvania today still does not have a plan.

02:29:49:10 - 02:30:55:19 Lisa: Why doesn't Pennsylvania have a plan?

Ilene: That's an interesting question. We brought a case very recently. It's the Benjamin case and which was recently settled and as a result people will be getting out of the state, state centers. Right near the end of the Benjamin case, they hobbled together something which they called a plan and submitting it to the court. It had never gone public. No one had seen it. No one had reviewed it. No one knew about it but it was submitted to the court so I guess technically there is a plan and it wasn't being implemented so the court never bought that. But If you think of Pennsylvania today, there is no plan in place where, other than because of the Benjamin litigation there now is a process in place because they're going to have to give people the opportunity to leave because of Benjamin but prior to the Benjamin litigation there was no plan in place where the state basically said, look, we are going to have to reduce the population or our institutions over a period of time and here's how we're going to do it. That was just something the state never did.

02:30:56:03 - 02:31:37:21 Lisa: So in the absence of the plan, are people more vulnerable?

Ilene: Because of the plan?

Lisa: In the absence of a plan.

Ilene: Sure. Well, they're not, they're not leaving. I'll say that. They're going to stay where they are absent of a plan. And, and, and you should contrast this with the mental health system where there has been a very active, affirmative, uh, effort, to, to reduce the size of the institutional population and to move people into the community. Uh, just got this one cracked. It's not to say no one ever left and that no institution ever closed without litigation but there wasn't the commitment that you, to constantly move forward in terms of phasing out, uh, an outdated mode of service provision which are the institutions.

02:31:38:25 - 02:32:59:06 Lisa: One of the things that, um, really fascinates me but, about DLP and its relationship with The P&A. I may have that again a little bit, uh, back to front but in addition to using litigation to achieve change, you really did a lot of advocacy, um, with and on behalf of people with disabilities and families and I wondered, um, if it was that direct involvement with families that maybe directed some of the litigations that you pursued.

Ilene: Oh, absolutely, I, I always felt you don't bring a lawsuit unless you have the support of the community and so, uh, not only is advocacy an important tool of reaching, to reach the goals, uh, it's also, I think necessary before you do litigation. Litigation should be viewed as sort of one spoke on the wheel. Uh, there's many other spokes on terms of how you do system change and if you rely totally on litigation and you don't have the community support. You will, will not succeed, in my opinion. Um, there needs to be organizing, there needs to be media, there needs to be, um, parents who speak to public officials, there needs to be many, many pieces of advocacy and I think in many ways those pieces are more important than litigation. What litigation does though is sometimes bring those folks to the table or, or sort of forces the system to acknowledge or address an issue.