Chapter 4: 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 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.

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

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 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 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.