Chapter 4: Community Collaborative

08:34:16:10 - 08:38:14:23

Lisa: I believe it was in 1991 that the Community Collaborative was formed under the direction of folks like Nancy Thaler.

Judy: Yes.

Lisa: And Estelle Richman. And I believe the Community Collaborative sought to address some concerns about implementation and compliance and strategize for ways to do both those things. I'm wondering if you could tell us a little bit about the Collaborative and whether or not you thought it was successful in its goals?

Judy: Well the Community Collaborative actually was a part of the Pennhurst orders. There actually was an order of the court setting it up, so to speak, but this, it came about after we had filed the motion for contempt against Philadelphia. And the problem, we felt the problem was that we could get a set of findings of contempt, we could get some new orders but what really had to happen was much more profound, the system really had to change in Philadelphia and the people running the system had to embrace that change and the system, as I've said the systemic problems were so profound in Philadelphia that it really required more than just a new set of orders that would be very difficult to comply with given the state of the system at that point. So we spent a lot of time negotiating with the city of Philadelphia to try to bring about some change and finally, I think it was Nancy Thaler who actually had the idea of doing a comprehensive planning effort and she and I talked about it a lot and I think we were of one mind that it had to involve everybody, families, advocates, class members, providers, everyone in the system and it had to be really a community wide effort that would involve the whole community and result in, in, I think Nancy's formulation was we won't talk about what was wrong with the past we'll focus on building a better system in the future and one that is really based on a set of values that we can all embrace. And so the court agreed with us that we could go forward with this effort and it took place over a fairly long period of time, about a year or perhaps more, and it began with, we brought in a facilitator, David Powell from Kansas, who had, whom Tom and Frank Laski and I had worked with in the Homeward Bound litigation in Oklahoma. Dave was the court monitor in that case and we had seen his ability to facilitate strategic planning that was a little different from what we normally think of as strategic planning because it was based on values and the goal was to translate those values into operational realities in a service system. And Nancy Thaler was very on board with that concept as well so that was how we began, with identifying the common values.

08:388:24:03 - 08:41:57:09

Lisa: And Judy you'd said that you had all worked together to identify the common values. How did you implement those values?

Judy: Well of course that was the challenge. Some of the values, it was very interesting because when we went through the exercises to identify the common values we came up with things like friendships and family and people coming out of Pennhurst typically didn't have a lot of contact with their family, some did but many did not, friendships, that was a whole new concept. The idea that that was really important for people with disabilities, that it was really important to facilitate friendships, make it possible for people with significant disabilities to have friends that was a whole new idea. Nobody had ever thought about that before it was, the thinking was all about how can we get a better residential arrangement, how can we get health care to people, how can we deal with transportation, how can we get them to sheltered workshops during the day. So that was really, really required some radical thinking on peoples part but the plan was that we were going to come up with a strategic plan to change the system so that it was consistent with the values. And after the initial session, after the initial facilitated sessions we formed a number of different planning groups that worked on pieces of the plan and they came up with very, very good strategies, I think, for implementing all the pieces we had identified. Unfortunately when the system, when the Commonwealth and the county really, when push came to shove and they had to produce an implementation plan based on the work of these work groups they came up with something that in our view was very, very watered down and did not, did not embody the work that people had done. And I want to emphasize that the work groups were composed of people from the system, service providers, families, advocates, people with disabilities, they were really very comprehensive, they were really a great combination of stakeholders and people from the grassroots so their work was really very, very good and maybe someday we should try to resurrect the product of those groups. But what the system proposed was not what we had envisioned at all so we had to go back to court and inform the judge that we were going forward with the motion for contempt and we had a hearing in 1993 which lead to a new set of orders in March 1994.

08:42:01:00 - 08:43:03:14

Lisa: Do you think that if nothing else the values set forth by the Community Collaborative have had a lasting effect on the system?

08:42:20:21

Judy: Oh yes. I think they really, I think the transformative effect was really very deep. I think we can still see the effects today. I think the system really redefined itself in terms of its purpose in what it was all about that, that the purpose of supporting people with disabilities in the community service system is not just a home and a place to be during the day and health care and a way to get back and forth. It's a life, it's a life like any of us would have.

08:43:32:00 - 08:43:31:11

Lisa: That's right I had read something is some of the Community Collaborative documents that said the real barometer of the Collaborative's success would be whether or not people were happier with their lives.

Judy: Yes. Yes. Yes. Right. Exactly. I don't know that anyone is really done systematic research on whether that has happened. It's a good question.

08:43:32:00 - 08:45:28:19

Lisa: One of the areas that self-advocates, through the work in the Collaborative, had identified as being so important to them was around employment.

Judy: Yes. Yes.

Lisa: And I wanted to ask you what employment looked like for people at the time the Collaborative was formed and has any, again, that value of employment and the need for real jobs has that been a value that's translated today for folks with disabilities?

Judy: Well at the time of the Collaborative the service system in Philadelphia was, I would characterize it, as very backward, very traditional, there were very large sheltered workshops and most of the agencies that provided some supported employment were also running large workshops. It's very difficult to do both and agencies that tried to support people in real jobs were having a very difficult time. I mean the system was really setup to support large sheltered workshops and I think that's still the case today. I think it's been very, very hard to get that, that systems change in Philadelphia. I think thou that the County Office, the office of Intellectual Disability Services is very committed to employment, has some very significant employment initiatives and is really doing everything it can to try to lead the system in the right direction.

08:45:44:21 - 08:47:14:23

Lisa: Judy you had mentioned that one of the unique aspects of the Collaborative were the people that are brought in the room. And I wondered if you could tell us a little bit about who came to the table and what it was like for them to actually sit down and try to work towards these systemic solutions together?

Judy: Well we chose a group of about 50 people, a mix of people who played various roles in the service system including class members, families, service providers, people from the Philadelphia office, people from the Commonwealth, direct support professionals who supported the people with disabilities, advocates of course and it was one of the really great things about the process was that it taught us or enabled us to rediscover how much we had in common and that we really were focused on the same values, the same goals, although we played different roles in the system. And many of us had not, had not come together except as opponents on opposite sides of the table for many years so that was a very, very good part of the process.

08:47:17:26 - 08:54:06:12

Lisa: Thank you. Judy, you said that despite the Collaborative's best efforts implementation was a little difficult and you did have to go back to court?

Judy: Yes.

Lisa: And I know that Judge (Broderick) had issued some very strong orders regarding compliance.

Judy: Yes.

Lisa: And I wondered if you could tell us a little bit about those and the impact on the city?

Judy: Well he had issued a set of about 13 different orders to the system to come into compliance with the systemic problems that had surfaced such as the lack of a proper system for investigating incidents of abuse, problems with the delivery of health care, there were just a lot of systematic problems that he ordered corrected. But what was really brilliant about the order was that he included sanctions in the order of $5,000, I think it was $5,000, per person per day for each day that they were in noncompliance with a particular provision in the order. So they had more of an incentive to comply and what happened early on in the process and the Judge had also appointed a Special Master to oversee implementation and that was a very successful part of the process. But the first thing that happened after the implementation phase of those orders began, there was an order to assure that every class member's individualize habilitation plan was completed, approved by the County and delivered to the class member's home within 30 days of the IHP meeting. That may sound like a very simple thing, it may sound like something that is very easy to do but the problems in the system were so profound that the system could not do that. And the problem was that because people didn't have access to up to date IHPs the whole concept of an IHP, which was really pivotal in Judge Broderick's original orders back in 1978, it really lost its centrality to the system and people had to figure out how to make do without an IHP. So that was really critical in, kind of, bringing the system back to what the original concept had been, that everyone would have an individual plan based on his needs that would be implemented. So it was a small thing, seemingly, but it was very foundational. And the Special Master looked at the dates and which IHPs were developed and when they were actually delivered and we all spent some time looking at the tracking documents that showed where the IHP was in the process and there were many, many steps in the process and the long and short of it was the Special Master would have assessed about $13 million in fines just for out of date IHPs. He decided to or the Judge decided to suspend the fines temporarily to give the system a chance to solve the problem but with that $13 million hanging over their head they did solve the problem and the problem was solved, again, thanks to the efforts of Estelle Richman who, who was Deputy Secretary of the, as it was then called, Office of Mental Health/Mental Retardation in Philadelphia assigned Susan Pingree and Larry Pace to run a new section of their office for class members and eventually that lead to a different case management system for class members and it served a model of how to manage and administer services a bit better. So that was very effective and over time the orders were implemented with the assistance of the Special Master and Tony Records, the Special Master, did a wonderful job of focusing all the players on implementation of particular pieces. He took a systematic approach, what was the highest priority issue? Well abuse and neglect investigation were a very high priority issue cause a lot of evidence about that problem had come forth in the contempt hearing and the Special Master brought in experts who were able to assist the County office to create an investigation unit. The same approach was followed in health care, medical records, a number of other issues that had, had surfaced as very systemic issues. And ultimately although the court would have not had authority to order a quality assurance system, that wasn't in the original orders, it wasn't in the new set of orders, ultimately at the end of process the parties all agreed on the creation of a new quality assurance system and the Special Master was able to recommend to the court that it relinquish active jurisdiction at that point and so that was completed in 1998. And although the court still retains jurisdiction to enforce the permanent court orders it has not had to actively be involved since that time.