Chapter 3: Community Collaborative
05:58:49:20 - 06:01:52:14 Lisa: I know in an effort to, build a better relationship with the plaintiffs and to address some of the concerns that the plaintiffs had to you and Steve Eidelman, I think when he was then the Deputy of Secretary for Mental Retardation um, initiated the Pennsylvania community collaborative I believe in 1991?
Lisa: Can you tell me a little bit about the purpose of the collaborative?
Nancy: Well it was to try to keep us out of court. Um, the um, there were lots of problems in the Philadelphia program. Lots of quality of care issues, significant ones. And the plaintiffs were in some form of - either we were, I believe we actually were in court because the Pennhurst Consent Decree is always opened. The plaintiffs never have to um, make an argument, it's always open. And so, um, and I think enough of this, including the plaintiffs know that the courtroom's not the most effective way to resolve issues and make good things happen. You can stop bad things, and you can dislodge people from some inertia but to make really wonderful things happen it's really not the best vehicle and so I think we're all motivated to try to do something different and there were conversations that you could say turned into negotiations about um, building trust. The city establishment at the time was coming in, and those of us in state government um. And some families in Philadelphia are arguing that, in fact I think this was a big part of it now that I recall, the family groups in Philadelphia who's children were not in institutions, arguing that all of the attention and all of the resources should not continually be focused on the plaintiff class, that there were many people in Philadelphia that had nothing, who had very little, who were at risk of institutionalization and if you were going to make the system better do it for everybody. And so the basis of the collaborative was commitment to transform the system into a system that was good for everybody with disabilities in the city and would be strengthened for everybody and that we would um, honestly look at deficits at other places and fix things and build things. In the end it wasn't good enough and we were back in court but in the meantime some good things came out of it and I think the spirit of the community collaborative went on the Brighter Futures program in Philadelphia, I think Visions for Quality came out of that collaborative and so some really good stuff came out of it. And I don't know, the collaborative couldn't have gone on forever. Either it produced or it didn't produce. It didn't produce enough to keep us out of court but it did produce something.
06:01:54:05 - 06:02:52:15 Lisa: Can you tell me just a little bit about the structure of the collaborative? Who was represented and how? I know there were certain areas of focus like um public awareness, employment et cetera.
Nancy: Um, I can barely remember. Um, I know that there were work groups on different topics. As you said, employment was one and I do recall employment because we fell into the controversy over whether sheltered workshops could operate or not and that was a distraction for quite awhile. Um, and I think it was training might have been one, they were topic areas that people had interest in that were considered foundational to a system. And recommendations came out of them. Some acted on, some maybe not acted on, I think that what one of the other outcomes of that was a much, much stronger training program in Philadelphia that persists to this day.
06:02:53:15 - 06:06:19:01 Lisa: Nancy you had sort of referenced the fact that after the initial agreement that lead to the community collaborative um, some of some larger issues such as system design, agency roles, resource developments etcetera, the plaintiffs weren't entirely happy with and I guess it seemed that the state and the plaintiffs had sort of reached an impasse and I actually saw a note um, that you wrote to the community collaborative steering committee. Um, in which you said that differences in culture, gender, professional roles made it difficult for members of the collaborative to build trust. Um, and I'm wondering when you get to that point that seems like an impasse, how do you move forward. How do you bring people with all of those differences and different values together?
Nancy: Well if you have all the time in the world it will eventually happen but when you have to produce something quickly um, you may have to do that more quickly than you can resolve the differences or build the understandings, and I think that was the situation. When you get, when you get really far away from the community collaborative in that period of time what you recall is a lot of really good people wanting the right thing to happen um, and the differences were, if not minor, but um shouldn't have been enough to thwart the goal. But I guess the other thing is that some of the changes that had to happen were really significant. For instance, conflict free case management um, and um it couldn't happen through a collaborative it could only happen by, through some effort that forces change. Um, and that's ok. I think, I think, my view of all of those collaborative efforts and the one in Philadelphia was one of many across the Commonwealth, we were very collaborative and its out of the state office um, a lot of great stuff happens, people learn, people develop a sense of commitment and trust and some groups go one and do great things um, and that's true about all of the efforts in Philadelphia. I think Philadelphia built a culture of commitment um, I think the role of self advocates was immensely strengthened the community collaborative because while the process might not have produced what we wanted, the process was a good process and self advocates and families absolutely had voices. I should say, um, like so many things if you sit long enough you'll think of a lot of things came out of it. Well one of them was um, as the state went on to address the waiting list, it was the families on the waiting list in Philadelphia that brought attention to the waiting list issue state wide and that collected families across the common wealth and then when as a state agency we moved to doing a waiting list plan, a lot of the people came out of the community collaborative and the connections that they met and made so I think it was a huge change agent even though by itself it didn't produce what it wanted to produce and I, but I think it gave it strength in the hand of the plaintiffs than when they went to court. Which was good.
About Nancy Thaler
Born: 1949, Kingston, PA
Executive Director, NASDDDS; formerly Director of Quality Improvement, Centers for Medicare and Medicaid Services Disabled and Elderly Health Program Group (2003-2006); past Pennsylvania Deputy Secretary for Mental Retardation (1993-2003)
Community Collaborative, Pennhurst, Self-Advocacy, Everyday Lives, Self-Determination