Chapter 2: Guiding Philosophies and Career in State Government

05:43:06:27 - 05:45:42:11 Lisa: You continued to be promoted in your field. You know, you said that you were around long enough.

Nancy: Right.

Lisa: I think that's probably not entirely true.

Nancy: Well to some extent it's true, but because the field, the system was growing so rapidly, whoever there was first and ran the first group home was gonna be the person who was in charge of five group homes when the agency got bigger. And so, obviously had to have come competency and be reliable and all those things. Um, but, we worked for eight years. Four in the institutions, and four in the group homes, so it was eight years before I started on that path. And then once the group home experience came to an end, it was time for us to create a life with Aaron. And back then, being a house parent was very, very intense. You were on 24 hours a day/7days a week. There were no wage and hour laws. The husband, by the way, got paid half time, because he was expected to have a job outside the house. There were staff and we could have weekends off once a month but it was a very, very intense experience and so when we left after four years that's when I then got on the path of supervisor of a handful of group homes, director of division, and I continued to work KenCrest for another eight years. And when I left in '87, by then it was a very large agency. We had group homes in all the counties southeast region and state of Delaware, a bunch of sheltered workshops, the agency had an early intervention program. But that pretty much paralleled I think a lot of the nonprofit agencies in the field at that time, particularly the southeastern part of Pennsylvania because, unlike the rest of Pennsylvania, the closure of Pennhurst both spurned growth, but also expanded competencies. In the early days of community services everybody thought the folks with the most, the mildest disabilities would be in the community and everybody else would stay in the institution, so what Pennhurst taught everybody was that's not true, everybody can live in the community. So the providers in Philadelphia grew both in competency as well as size over those years. I didn't appreciate that until I went to state government in '87 and I could see that in other parts of the state, people were still saying there were people who couldn't live in the community when that pretty much stopped in the southeastern part of Pennsylvania.

05:45:43:01 - 05:46:35:24 Lisa: Nancy, as you were taking on more of a supervisor role did you continue to see your role as being perhaps an individual advocate, or did you see it more, as being more political in the sense of shaping policy?

Nancy: Oh, all of those. Advocacy and policy. I was always an organizer and some kind of leader so if there were groups of staff in the agency, and often times my husband back then would be in some lead organizing role. So when I became the administrator at KenCrest I was active in the state provider association and did that to affect policy. The interaction with state government allowed you to learn, but also to influence policy that was being made.

05:46:37:13 - 05:48:29:14 Lisa: There were all kinds, of new ideologies impacting the way services and supports were being given to people with disabilities in the '70s and into the '80s and I'm wondering if there were any particular ideologies that influenced you personally or professionally.

Nancy: One big, giant ideology. Anybody who has worked in Pennsylvania in the '70s and early '80s knows that Pennsylvania really promoted normalization, and in the early days in the '70s I think this has a lot to do the fact that Mel Knowlton was brought here from ENCORE, Nebraska, which is where Wolf Wolfensberger was working and so Mel introduced everybody to the book Normalization, brought trainers in and I have often lovingly referred to it as 'our brainwashing'. And when I read the book Normalization, having been in the field for a couple of years and instinctively not liking what I was seeing in these institutions, Wolfensberger's book just validated my thinking. I just had the sense of, aha, we're right about this. People need to have typical lives, they need typical experiences, and if they do that they're going to grow and develop far more typically than in these artificial, deprived environments. And, and because Normalization was zeitgeist in Pennsylvania. It was - everything was infiltrated with it. Everybody was trained in it. It was a common language, it was a common belief. Everybody had a common vision, a common set of values, a common language. It was very powerful, I think, in making Pennsylvania one of the leaders in the country.

05:48:36:07 - 05:50:14:06 Lisa: You said that that ideology really radicalized you in terms of people's rights, did your son's life, did Aaron's life change as a result of your own radicalization?

Nancy: Well, I mean you know the beautiful thing about Normalization is it's just the life like everybody else has it's just about what we all know. It's a matter of making sure that the people with disabilities have what everybody else has and one is not very radical at all. And for somebody who came into the field with no knowledge and no background only with my own life experiences and common sense, it was the only thing that made sense. And so Aaron was raised like a typical kid from the beginning. There was nothing artificial when he was with us, certainly he went back to the facility and that was pretty artificial but when he was with us, he played with the kids in the apartment building, and it had bicycles and our expectations were pretty high for his behavior and assuming responsibly for himself and so I don't think his life was changed by the book. Aaron's life would have been like that because it was the only way we would have known to raise him, its just, I think that the ideology and Wolfensberger's concepts helped us undo damage that had been done historically and rectify it.

05:50:20:03 - 05:51:09:25 Lisa: So Nancy, in the '70s '80s and '90s litigation was used as a tool to change systems in Pennsylvania, certainly, probably around the country. Do you think change would have been possible without the use of litigation?

Nancy: No. The amount of money needed to turn around the system, both improve conditions in the facility and build a community system, was so significant compared to how much was being invested at the time and the ignorance about disability and prejudice was so deep at the time that there, something needed to dislodge that thinking and I think that litigation was the only way to do it.

05:51:10:28 - 05:55:50:14 Lisa: So in 1987 you joined state government?

Nancy: 1987.

Lisa: 87? You were the director of the office of mental retardations bureau of community services?

Nancy: Correct.

Lisa: Yes, and as you were taking on this role, Pennhurst was closing.

Nancy: Pretty much within two to three months of my starting was the last person leaving.

Lisa: Can you tell us a bit about the logistics of closing down a facility like Pennhurst and moving people to the community?

Nancy: It was not done well. There was no, no real planning or conceptualization of what closure meant. It was simply taking people out until the last person left and so I think we learned a lot from that. That the final months of closure for one thing, are dangerous because everybody knows it's going to close and you begin losing staff and professionals. It's very hard to maintain any kind of coherent credible activity because everybody is focused on the fact that it's not going to be there. There is a point in time where you should just take everybody out at once because as it's dwindling dwindling there is a point which it's not a very good operation. We did it too fast, and I speak about the period before I got to state government. When I got there, it was only a couple of months left before the last couple of people left, but in the last maybe 2 years or 3 years the plaintiffs were all along very impatient with the state and for a long period of time the state dragged its feet and did nothing unless there was a court order. There was a period of time where the judge fined the state I think a thousand dollars a day or a huge amount of money and Department of Public Welfare still wouldn't move. I think in the end, the fines were 10 million dollars worth of fines, so there was really resistance for a long time through a good part of the Thornburgh Administration, not all of it but the early years of Thornburgh Administration. And then I believe it was in the Thornburgh Administration, they decided to close it. But then when they did that money wasn't enough, it wasn't coming enough, city counties couldn't get the services running; there were lots and lots of real obstacles but not a strong enough organized effort so it took longer than it should have. Long periods of time with nothing happening and the plaintiff's dissatisfaction just grew and grew and grew and grew. So in those last couple of years, the judge issued a pretty stiff order with the threat of fines and at that point, I had the clearest recollection of that because I was in Administration in the Provider Agency in Pennhurst back then, and Steve Eidelman was in Philadelphia and I believe in the last couple of years under the City's leadership at that point, in maybe '84 '85 '86 they really wanted to do the right thing and do it the right way but I think the judge and the plaintiffs just lost all their patience and couldn't hear one more excuse and so we got a lot of people out very quickly. A lot of agencies put up a lot of group homes in a very short period of time and then after it closed in 88 or 89 the plaintiffs filed another petition about the poor quality of services and they were right. And we were then in the catch up mode, trying to fix things up. As I said, I think I learned a lot from that and I stayed in government for the next 16 years, from '87 forward and we closed a lot of facilities and while there are always problems we did it much better after Pennhurst and to a great extent because of what we learned in the closure of Pennhurst.

05:55:51:16 - 05:58:46:29 Lisa: All of that change was of course, you know on the backs of people with disabilities and the families.

Nancy: Absolutely.

Lisa: Can you describe a little bit about the reaction or residents and families to meeting these timelines that the court imposed or the realities of having to move from Pennhurst to the community without everything being completely figured out?

Nancy: I have to say that a number of the people that KenCrest served and took out of Pennhurst had no family. More people had no family, or had family that were barely involved than actually had active family and so I have no doubt that there were families involved who felt railroaded and not heard and that the system wasn't organized to purposely hear them, something I think we rectified in later years and I think there was a lot of heartache, a lot of worry, and unnecessary harm in some cases as the result of poor planning and the harm comes from just not knowing what you're doing. Nobody had mal intent nobody wanted to do it badly but when you're rapidly finding housing, when you're rapidly hiring staff, when you're rapidly transitioning people, information gets lost, relationships don't get built and when you don't have good information about the people coming from the institution and the staff don't have a relationship with them, don't have time to learn from the staff at the institution; vital information is lost. And so it is failure to do an adequate job that really puts people at harm. So I have no doubt that families were um, felt railroaded and hurt. Conversely even for the people who left during that period of time when I think we did it too quickly, um, there were lots of families who said life's never been better. Um, families were reunited for the first time. A man who left Pennhurst who had a brother who after 40 years, was reconnected with his brother and there were lots of those stories too. Um, because not everybody who moved had a hard time, we didn't make mistakes with everybody. Um, there were lots of successful um, transitions. There were too many unsuccessful transitions.