Chapter 3: Pennhurst Implementation

8:18:03:28 - 08:23:05:06

Lisa: So you were talking, Judy, about implementation and Tom Gilhool asked you to take the lead on compliance and implementation for PILCOP, I believe.

Judy: Beginning in about 1986 after the first couple of years of implementation after the settlement agreement.

Lisa: And can you tell us a little bit about what was involved in that work?

Judy: Well at the county level there were still a lot of problems in compliance with the Court's orders. I mention the fact that when people move from Pennhurst before the Court's orders came down they generally moved to other institutions or a lot of them did and in Delaware County and Philadelphia in particular a lot of people had, who had lived at Pennhurst after 1984 when the case was originally filed had been placed in other institutions and it was a little bit complicated because the class as originally certified was certified to include people who had lived at Pennhurst after, I think it was 1977 then when the case was settled, when the consent decree was negotiated the parties agreed to extend class membership back to 1984 when the case was originally filed which was very logical.

In return the people who had become members of the class because they were at risk of admission to Pennhurst, because they were on the waiting list for Pennhurst, no longer were members of the class unless they had already been members of the class receiving services in which case they were grandfathered in. So there were a large number of people at Embreeville, at Pine Hill, at Elwyn, other institutions who were titled to community placement so we filed motions for contempt against Delaware County and Montgomery County and those, the court held a hearing on those two motions and eventually the Court of Appeals ruled that, that the counties and the Commonwealth were not in compliance with the settlement agreement and so the people who remained, who had been placed in the other institutions did move to the community and there were some other issues such as case management, case loads and so forth that had to be corrected and were corrected.

And then in 1987 the Arc filed a motion for contempt against Philadelphia and the Commonwealth in response to the monitoring reports of the last wave of class members to move to the community from Philadelphia, in Philadelphia and the reports showed such problematic conditions in the community that we felt we really had to, had to address them. As you know Pennhurst closed in October 1987 and Philadelphia was the last County to bring all of its people back from Pennhurst. And Philadelphia was, you know, historically Philadelphia had sent people away mostly to institutions outside the city, had never really served people with significant disabilities in the community until Pennhurst implementation and that involved a very radical change in service delivery. And so Philadelphia struggled understandably. At the same time Philadelphia did become, as a result of Pennhurst implementation the first major metropolitan area in the country to serve all people with intellectual disabilities in the community no matter what their disabilities, no matter how complex their needs, that's an achievement which is not very well known. I wish it were better known and celebrated because it's a very, a very impressive fact.

8:23:06:00 - 08:26:44:13

Lisa: I wonder, Judy, I'd love to ask you about some of the problems that Philadelphia faced.

Judy: Right.

Lisa: I think it would be interesting to hear what some of the problems were and how Philadelphia resolved them. So I guess I'm thinking specifically about the conditions in the community that were reported to be problematic and then, again, how they might have been resolved.

Judy: Well in Philadelphia many of the service providers were large agencies, based serviced units who ran a lot of services other than intellectual disability services and unlike the situation in some of the counties where the service providers often came from the grass root were relatively small, very focused and accountable to, relatively speaking, accountable to families and accountable to county government. That really wasn't the case in Philadelphia it was much more difficult to get accountability. Also I think many of the people who were running the system, who should have been providing support and technical assistance and direction to the service delivery system were not able to because they didn't have the depth of knowledge, they didn't really come from backgrounds within the field, that's not true of everyone of course there're many people who, who did and remain in the system today but that was something that I think the system struggled with. And if you look at how the service system was organized in Philadelphia, the Case Managers, for example, who were supposed to monitor services and get correction of deficiencies were buried so many layers down in city government that they really didn't have the power or authority to take action and I think many of them were very frustrated by that fact. And being Philadelphia it was always possible for politicians who had relationships with the agencies providing services to intervene and to stop corrective action when it should have been taken and I think there were some very good people working in the system, people like Steve Eidelman and Richard Searls, who I believe had their hands tied and were not able to do what they felt was professionally the right thing to do. And of course it was a big system, there had to be a lot of different people providing oversight and it was just, I think, a big, a big challenge. And it wasn't really until Estelle Richman became Deputy Commissioner of Mental Health and Mental Retardation that the system was able to improve.

8:26:51:07 - 08:27:22:17

Lisa: we were talking about the system struggling.

Judy: Yes.

Lisa: With folks moving from Pennhurst to the community but it wasn't just the system, some parents were also very much opposed to having their child or other people's children move from Pennhurst or any institution into the community. I know some of them even organized and formed groups like the Pennsylvania League of Concerned Families.

Judy: Yes.

Lisa: So I'm wondering, in your experience do you have sense of why parents were so opposed to that move?

8:27:23:09 - 08:31::36:23

Judy: Well the, I think the governing hypothesis is that the parents who opposed community placement typically were older parents who had been told when their son or daughter was born that the best place for him was at the institution and they believed that and they followed the professional advice that they were given at the time and it's very hard to believe, to come to believe that you made a mistake and people tend to be invested in the decisions that they've made. I've observed over time in the course of litigation not only in Pennsylvania but in a number of other states very, very similar phenomena. I think it tends to be the upper middle class, white, relatively well educated parents who support the institution the most and often it's the minority parents and the parents who are less affluent who are more open to community placement and I think, I've noticed too that many of the parents who support the institution tried very hard to get the best medical treatment for their son or daughter, they searched high and low for a cure, they took their sons and daughters to Johns Hopkins and all over the country looking for a way to cure him and in one era they might have tried patterning, in other eras they might have tried applied behavioral analysis but that's kind of a common theme is the search for a cure and then they found there was no cure and they, at point they place their son or daughter in an institution believing that, that their child's condition was essentially hopeless and nothing could be done and it was best to provide a safe place for the rest of its life. And the attachment to bricks and mortar among these families is very profound. In another case in another state, the case of the Arlington Developmental Center in Tennessee, when the state decided to close the institution they planned to actually raze the buildings to the ground because they were in very bad shape and sell the land to private developers. And many of the parents actually wanted their sons and daughters to go on living on the grounds of the institution or as near to it as possible. There was something about, you know, the physical reality of the institution, the place, that was very important to them. So somehow this stands for safety and security but as I said I think, I found that less affluent parents and particularly parents who were African American or Latino are much more open to community placement and have that already, kind of, have that sense of common community and so it's a lot easier.

08:31:37:27 - 08:34:12:10

Lisa: And certainly around the time, around this time media was often representing the transition of folks from Pennhurst into the community as taking resources away from other folks out in the community.

Judy: Yes.

Lisa: I'm sure many parents thought that as well. And did you think that was a fair assessment of the use of resources?

Judy: Well no, really not because the State could have made a commitment to developing the community, closing the institutions, the fact is that the institutions take up so many resources just operating the buildings, operating the grounds is a huge drain on resources and so I think that it was more of a political tactic on a part of the State to blame the court, to blame the plaintiffs and Pennhurst for taking resources away from the community when the fact was that the parents of people with significant disabilities living at home really had no alternative before Pennhurst implementation. There were no community services for people with significant disabilities and actually the Pennhurst orders had the effect of developing the system for everybody. And when we actually looked at the numbers, Tom Gilhool was very, always had very great ideas for how to show really what is happening in terms of where the resources are going, where the money is going and we looked at all the people who had been place in the community, in Philadelphia, in the surrounding counties and saw that really for every person who had come out of Pennhurst there was at least one other person with significant disabilities who had moved to the community from home. And many Pennhurst class members were sharing their homes with non-class members so it, the system really was growing and serving everyone. Not serving all the people on waiting lists, obviously, but able to serve people with complex needs it had never served before.