Chapter 5: Advocating to Close Institutions, Pennhurst Lawsuit

08:49:24:00 - 08:51:32:16

Lisa: So, in 1974 David Ferleger filed suit against the state to close the Pennhurst State School and Hospital and the Department of Justice, the Pennsylvania ARC later became plaintiffs in that case. I know that the state ARC had certainly pursued the right to education in 1972 in a first step towards closing institutions but I know that its membership remained divided around the issue of closing state centers so I'm wondering how ultimately PARC came to become involved in that suit, the suit against Pennhurst; the suit about Pennhurst.

Marsha: If you go back and read through this period of time, yes - there was dissention. I know that our local chapter out here in Pittsburgh was putting substantial pressure on the leadership and the board of the ARC of Pennsylvania to roll up their sleeves and get involved. We had already been able to see in our own community rapidly bringing people home, it was almost an immediate improvement in people's life. Not that it was best practice or what we consider now but suddenly people had a bedroom with only two people living in it, they had personal possessions, they were learning to express their interest in the types of food that they liked, they were allowed to sleep in in the morning if they wished, they were learning job skills. I think that we were able to see already the difference that this could make in people's life and so of course the conditions that were being seen on all of these visits. So yes, some folks at the state level had to be pushed a little. In fact our minutes reflect that at one point our chapter threatened to withhold its dues to the state if the state did not take a more proactive position on this.

08:51:34:05 - 09:01:09:07

Lisa: The closure of Pennhurst was a ten year process. It eventually closed in '87. But in the meantime with Disability Law Project was looking into conditions at Western Center...

Marsha: Mm-hmm.

Lisa: Making unannounced visits...

Marsha: They were actually not looking into it.

Lisa: Please tell me.

Marsha: We were doing, through our local chapter visits, and we knew that following the death of a long time superintendent, Ruth Scott, who was one tough cookie. That's to say Ruth's friends will tell you when the meat was being delivered, if she didn't like the quality of the meat on the truck, she would send it away and say only the best for my folks at Western. She was maternalistic but a very, very involved and this is a woman who would get up and walk the halls at 3am and if she found staffers sleeping she would fire that staff person on the spot. When Ruth retired we noted substantial deterioration in the supports and services. So we began to monitor heavily, unannounced. My colleagues included Joe Angelo, family members, Karen Kelly, who were making unannounced and regular visits. We saw things that we certainly didn't like. I will say, it was not like Polk. That's to say we did not have children and young adults in cages. We did not have bedrooms for forty and fifty people. However, individuals were not getting the support that they would need to become included in their local communities. The pivotal point, so we were making all of these visits, the pivotal point, unbeknownst to us at the time, was that one of our advocates from then ARC Allegheny, Needy Henderson, extraordinary and strong advocate. Secretary John White had come to a function at ACHIEVA, one of our award functions, and Needy who had been with teams of families regularly visiting Western Center asked the secretary at the time - we were a little like "wait, where's the secretary?" We're looking around. She said to him "Secretary White, we're not far away from Western Center. Will you get in the car with me and make an unannounced visit?" It was on a Friday evening. The secretary spent over four hours at Western, came back to his job at the Department of Public Welfare and, unbeknownst to us at the time, went to the state police who assisted the department of Public Welfare in assigning an undercover person to go into Western Center. The person was trained and interviewed as a direct support professional. He was to spend six to eight weeks documenting everything that he saw. Within the first week his co-workers felt, you don't really belong here, who are you? By about ten days, and this is all of course documented, by about ten days because he was to call every evening. He would ... they would transcribe his written reports. He'd run to the men's room and say I just saw an individual from such and such a place, they were, folks were eating watermelon. His piece of watermelon fell on the floor and the staff members made him get down on his chest and wipe it up with his own body. There were just report after report after report that he was documenting. As I said, about ten days he called his supervisory chief and he said "I don't think I can do this anymore. You told me I can't intervene. I'm seeing things that I feel require my intervention." He was encouraged to stick it out. That became for us, of course, powerful information with the Department of Public Welfare to quickly get to a settlement agreement. It was really, you know the folks from our chapter again and from the ARC of Indiana we had some folks from Butler County who then, I actually got together a group of attorneys. We met outside Pittsburgh because we didn't want anyone to see us meeting. It was probably twelve or fourteen of us sat around a table at a tiny restaurant in the dark and we had, of course, not only Ilene Shane and Mark Murphy from the Disability Law Project, but our colleagues at the Public Interest Law Center. We had local folks from neighborhood legal services and we sat for hours and hours that evening figuring out who might have the resources because of course when you're considering litigation like that you have to have very, very good cash flow. You could go for four or five years or, as Pennhurst, ten years without getting any reimbursement for your legal work. We put together a pool of funding and it was really Mark Murphy out here who took the strong, strong leadership role along with, at that time, Frank Laski and later Judy Gran from PILCOP in doing the initial filings and then of course the first hurdle was the certification of class. And as I said we did this differently. I always had very strong feelings for those families who had kept their sons and daughters at home and who were on waiting lists. We of course had seen precedent settlements where the individuals who had lived in institutions were getting everything that they needed in the community and meanwhile our families who had kept our sons and daughters at home were still with very little support and on waiting list for the supports they needed. So early in the formulation of the litigation we involved a family, I'm still close with the family, a mom widowed with not one, not two, but three sons with disabilities; the Luns family. And Eileen, the mom, was courageous enough to go through the process of putting up her family as the example of families in the community who were waiting for supports. So early on this notion that families who were in the community on waiting lists should have some sort of an equal opportunity to have the needs of their sons and daughters met was embedded in the overall strategy. We came out of it with a great team. We were negotiating against Nancy Thaler from the Department of Public Welfare and, in truth, Nancy herself was very supportive of our attempting this one-on-one match and getting through the process. She was of course representing the Department of Public Welfare, but getting through a process that would lead people to better lives.

Marsha: At Western we did have a great deal of opposition. We had a family group led by Dan Terasky who was adamantly opposed. His son had lived there for many, many years and was the chair of the board. I mean these centers actually had boards that met monthly and so there was strong opposition from day one. Even to the court determining what the class would be.