Visionary Voices Interview Nancy Thaler Chapter 1: Early Career 05:17:21:20 – 05:17:56:27 Lisa: My name is Lisa Sonneborn and I’m pleased to be interviewing Nancy Thaler at Temple University in Philadelphia Pennsylvania on January 19th, 2012. Also present, are videographers Lindsey Martin and Aggie Ebrahimi Bazaz. Nancy, do we have your permission to begin the interview? Nancy: Yes. Lisa: Thank you. And I also wondered if you could tell me where you were born and in what year? Nancy: I was born in 1949 in the town of Kingston, Pennsylvania. 05:17:57:24 – 05:19:03:04 Lisa: Thank you. Nancy, you’ve worked on behalf of people with intellectual and other disabilities for over forty years now? Nancy: Uh-huh. Lisa: Um, but your undergraduate degree was in music. Nancy: Uh-huh. Lisa: So I’m wondering what career you initially envisioned for yourself? Nancy: Um, no career. I was a musician and I loved music and I just pursued studying music, and while I was in college studying music, near the end of the four years, I saw children with disabilities in the town of Scranton, where my husband went to school. We were dating and I would see students who worked at the university who were taking care of kids with disabilities at a facility in Scranton called Keystone City Residences, I think. It was Keystone something. And so I tucked that in the back of my head. Never talked about it, thought about it. And then when I finished school I walked into that place to get a job. 05:19:04:00 – 05:19:52:15 Lisa: Had you had prior experience with disability? Nancy: Nothing. Um, my experience exposure was grade school and high school, each of those schools had a class with six to ten kids with disabilities. I now know pretty mild disabilities. And they were to themselves in high school. It was absolutely, literally, the room in the basement next to the boiler room, 1 without any of the desks or accommodations or any nice things that the rest of the students had. And we never mingled with the kids, so I just saw kids in those two classes and I think instinctively didn’t like it, but didn’t think about it much. 05:19:54:02 – 05:23:09:26 Lisa: When you walked into the institution and asked for work, what did they advise you to do? Nancy: Well it was 1971, and I now know there were a whole bunch of parallel things going on. And what was going on was the settlement discussions and the PARC consent decree so the intermediate units, Pennsylvania intermediate units, apparently were set up by them in preparation for the settlement agreement and so when I went to work in this institution, they said to me, you know, ‘You have a college degree, you shouldn’t be working here. You should be teaching.’ And they sent me off to the intermediate unit to apply for a job, which I did, and I became what was called a permanent substitute teacher. That is I didn’t have a degree in education and so I could serve as a substitute teacher. And they were very eager to sponsor, to pay. They paid your entire way to get a graduate degree in special education, but I didn’t want to be a teacher. I already knew that from being a musician. I didn’t want to be a teacher. But I subbed permanently and went back to the facility, to Keystone, and said, ‘But I still want to work here at nights’. And so I both taught during the day and worked at night. And oddly enough got assigned a lot to the institution to teach because in 1971, kids didn’t go out to school and any of the children that were institutions had the school brought to them so the intermediate unit ran classes in the institution. So I would teach during the day and work with the kids at night. And so I mean, it’s not a mystery to me how – why it was I was drawn to do that. Despite my love and devotion to classical music, there’s a – we’re all complex beings and there are many things going on simultaneously and I have a reformers streak in me. Probably from my family. As with everybody, our roots go back to our family, and my mother and father – children of the depression – really stood with poor people. And the worst thing you could ever do in our household, the worst sin you could commit, was to ever think you were better than somebody else. And I think from that I absorbed some sense of standing with people and defending social justice, although those terms were never used. So in my childhood I had periodically ideas about doing some kind of helping profession and when I saw the kids, I couldn’t –I think in retrospect at a subconscious level what I recognized was, of all the people in the world, these are the folks who are the most rejected, the most denigrated, the most at risk and I was simply at a very deep emotional level, drawn to help. And so went there to help. 05:23:10:12 – 05:25:08:18 Lisa: So would you say that some of your ‘drawn to social justice’ issues were informed by the Civil Rights movement? 2 Nancy: No, it really was the Kennedy administration. I was 12, in 1960 I think, when he ran for office and being a Catholic in a very wasp community, we were very aware that John F. Kennedy was Catholic so there was this awe of this is a good guy. And then I was very drawn to politics and government and so a bunch of us got very involved in the election in the way 12 year olds can in school. Debating and following and etcetera. And so when he was elected I remember coming home from school in the afternoon to listen to his news conferences. And this is the John F. Kennedy of the Peace Corps and a whole new generation and so I have to say his presidency is maybe one of the most pivotal things that happened in my life. Because I listened to what he said and I pulled out of those years the social reform elements, the idea that we’re all citizens of the world and we all are each other’s keeps, etcetera, etcetera. So, so by the time I was a senior in high school and going into college, despite the devotion to music as I said, there was this other social reform, social justice, maybe join the Peace Corps. When I was probably a sophomore I entertained quitting college and joining VISTA. So, you know, all that was going on at the same time. I was living a parallel – two parallel lives within myself I guess. Um, and so just the kids were compelling. Very compelling. 05:25:09:09 – 05:27:22:08 Lisa: Nancy, you were working as a permanent substitute teacher. You referenced this was at a very remarkable time, probably, for Pennsylvania’s education system because of the PARC consent decree and the incredible influx of kids with disabilities into schools. Were the schools prepared to accommodate kids? Nancy: I’m not sure there was an influx. And I don’t know the history completely, but certainly from the little spot in Pennsylvania that I was working from, the kids weren’t going to the public schools, the schools were organizing classes that still – that were segregated and isolated. They were segregated schools or segregated – in the case of kids living in institutions, both the public ones and the private ones, the [ph] came into the schools instead of classes. So I don’t think in the very early years there were a lot of all the kids going. I think that evolved over time as it would. I mean I don’t think the schools were prepared for the influx of thousands and thousands of kids with disabilities when up until that consent decree was signed, they didn’t think they could learn and come to school. So, I think it was a clumsy evolution but I’m not sure how else – I do think, though, that personally think that the eagerness to get all children in school quickly spawned this concept of these intermediate units in Pennsylvania, which as I understand it, were created to facilitate the introduction of the kids into school, to help make it happen. And in far too many cases they’ve become segregated school systems, and an impediment to kids integrating into those schools. I think a handful, maybe one or two, are not that at all, but we still have in Pennsylvania free standing segregated special ed schools, and that’s really a shame in the state that had – that was the foundation to the right to education. That happened here in ’72 and the law nationally wasn’t passed until ’76. And so that’s not a good legacy, and still needs lots of work. 3 05:27:22:08 – 05:28:22:00 Lisa: Why do we still have them, do you think? These segregated schools and intermediate units. Nancy: Um, it’s very hard to transform things that have been around for a long time, particularly if the transformation means they stop existing. I think the intermediate units are no different than the state institutions, or any institutions. People who know them, people who go there, people who work there, families, become very, very invested and then they have an allegiance to them and then there are – that becomes an obstacle, small ‘p’ political, big ‘p’ political, to making any changes. Once they’re there, it’s hard for people to imagine life without them. Until they’re all gone, then people can’t imagine why we needed them. But we’re in that transition. Both with institutions and intermediate units at Pennsylvania. 05:28:25:00 – 05:34:53:25 Lisa: So Nancy, you had said that you didn’t want to teach, that certainly wasn’t your goal. So, what was your next step after teaching? Nancy: I’m not sure there were any steps. In 1971 when I started working for the intermediate unit in Lackawanna County as teacher and simultaneously working as what was then called a child care worker, they were called in 1970, in the institution. By summer, I stated in January, by summer I knew that was it. I wanted to take care of, not teach. And quite frankly, because I could see in the taking care of there was a lot more teaching than there was in the classroom. And my husband at that point was now graduating from college. I finished six months early, and I had been bringing the kids home and said, ‘why don’t you come for the summer, summer job?’ In 1970, college graduates weren’t obsessively career oriented. We didn’t worry about money a whole lot and we were just exploring life. I think kids now are far more career oriented when they leave school and they have to think about a job, but in 1970 we didn’t have to so much so we could just fall into things. And we were – he came and joined me for the summer and we worked and very quickly he fell in love as much as I did. And we started thinking in an evolutionary kind of way, we want to do this and, but instinctively we knew that this institution was a high-rise complex in the middle of Scranton and the good thing about it was the kids were out in the town all the time. But the bad thing was they were living in dormitories in this big building. And so our instinct says, there’s gotta be something better than this. And in our heads we invented a concept of a group home and started writing around to a lot of state arcs, about 15, 16 state arcs, asking, ‘what do you have? We’re interested in doing something.’ And we didn’t get much back, but the director of Keystone, and man named Gene Langon, was very involved in the Pennsylvania’s Providers Association [for the Retarded] PARR. An organization I was later the president of, incidentally. Many years later. But Gene Langon was exposed to other providers and one was Jim Varner at KenCrest. And Jim, in 1971, had the same idea and I suspect that he invented it in his head because around this time the office – no, the Department of Public Welfare, there was no office of Mental Retardation back then but by then things were brewing up. Pennhurst was thinking reform. They’d brought in [ph] Nebraska and so the department has proposed in the legislator funding to open group homes. And Jim Varner at KenCrest was very supportive of that. Interesting he was running an institution, but he was very supportive of this concept, and impatient for it to happen. So he took his institution money and opened up a six person 4 group home in Kensington, Philadelphia. And so our executive director at Keystone said why don’t you go talk to Jim? And we did. And we spent a day visiting the group home and spending time in his institution. And we were very young, we were very little. We were, I think I was under 100 pounds, my husband was very little, we were little people. We looked like kids, and I remember Jim said to us when the day was over, a day that was orchestrated to discourage us I believe, because we just didn’t look like we could be serious I think, and he looked at us and said, “Do you understand that I’m asking you to be parents to these kids?” And we both said, “Yes, yes, yes, yes. That’s what we want to do, that’s what we want to do.” And so we moved there and Jim hired us, but it took the Pennsylvania General Assembly a little while to pass the legislation, and then when they did the department couldn’t use the money for group homes because of L&I regulations and obstacles. It took a long time to work through, so during those three years where we waited, we worked in the KenCrest Institution waiting for the group home to open. We were pretty dedicated. Before all that, though, before we left Keystone in that six months when I graduated, and before Carl graduated from college, we did try to join the Peace Corps, at a period of time when they had enough English teachers and were looking for people with concrete skills. So I always often joke and say we were Peace Corps rejects. But more about that social reform desire that I had. So at any rate, we ended up at KenCrest for three years and then moved into Philadelphia to open a group home at the time that the Pennhurst case was going on and Judge Brodrick at that point, in 1974, had ordered that – I believe it was an order, or perhaps it was just a policy the department put in place, but I’m pretty sure it was the Judge’s order – that half the people served would come from institutions and half would come from the waiting list. Even back then people were concerned about the waiting list. So the group home we opened had three children, adolescents, from Pennhurst and three that came from their families who were on the waiting list in Philadelphia. And I think in the meantime, during that three years, what the state did with the money was at the best of my knowledge, again, was to create the first-family support program in Pennsylvania, and that’s how family support got started. 05:34:54:05 – 05:35:18:15 Lisa: What is family support, Nancy? Nancy: I’m sorry? Lisa: Can you describe family support or at least what it was at that time? Nancy: The idea was that there were families whose children were living home with them who had no services at all, and even in 1971 no school, and the idea was to use resources to help those families. Respite care was a big service that was offered to families I think at the time. 05:35:20:01 – 05:42:22:29 Lisa: Nancy, I think perhaps one of the happiest outcomes of your time working at institutions was meeting your son. 5 Nancy: Yes. Lisa: I wonder if you could tell me a little bit about him and how you met? Nancy: Sure. Um, when we worked at River Crest starting in 1972, when there were all children at River Crest, about 100 kids, and everybody that worked there was young. We were all, most of us, newly graduated from college, none of us caring about how much money we made, and we didn’t make any, and we all had a good, we had a wonderful time working there. Our peer work, we had a great time working there. Everybody loved the kids and we were very creative in undoing, trying to undo or compensate for the obstacles in the institution to having a typical life, etcetera, and a lot of the staff took the kids home on the weekends. That was a pretty common practice. And Aaron had come to the institution probably shortly before we did, I think. He was seven years old. And Aaron was an incredibly adorable little boy. Very, very, very active. And everybody took Aaron home once, maybe twice. He was very, very hyperactive and he could only say the words, “I go home.” And he said that to everybody which is how he got to go home with everybody. Um, Aaron had, we learned much later, had been in nine foster homes between the ages of five and seven, and then institutionalized. He was in the Philadelphia Child Welfare system. So he’d been in nine foster homes which explains why he kept saying, “I go home.” Um, even to Santa Claus. Um, and so we were taking Aaron home on the weekends and my husband and I were very energetic and lots of love, and we kept taking Aaron home on the weekends, and really got attached to him. And on the assumption that when we moved to Philadelphia, Aaron would just move in the group home with us in Philadelphia. And that turned out not to be. And it’s a sort of little sub story of the whole group home movement but the group home that my husband and I moved into was in lower northeast Philadelphia, in the Crescentville section. And, we were really quite welcome by the community. There was a family across the street that had a little boy with down syndrome, and we were really very welcome. And during the process of getting the home and planning everything, the agency said we could only take kids in that home that were from the base service unit home was in. And, turned out to be a relatively common practice for a few years in Philadelphia. And Aaron wasn’t from that base service unit so we had to find six kids who were. Now three from Pennhurst and three from the community, so Aaron didn’t count. So, in the throws of doing that we met all these kids, and these kids came, it was really wonderful. But when we moved in before the kids, Aaron was still Aaron. Aaron was coming home with us every other weekend and we had no intention of changing that at all. So Aaron came for a visit on a weekend before any of the kids moved in and um, and the community blew up, pretty significantly. The – we heard about it by the next Monday and the community blew up because Aaron was black. And, this is a white community and a white based service unit. This is 1972, and so nobody could say that out loud to us. Nobody could say it. And then it would kind of recall to it in the six months prior to moving into the group home that folks in the agency were kind of suggesting we sort of break ties with Aaron because he couldn’t move in. And we found that odd, but life goes on. You don’t pay attention to it. So, actually what has happened was, an unwritten informal agreement, never to really be articulated between the agency and the base service unit in the city, that the house would be all white. Because this is a community that was very open to a group home when almost no communities were, and so we found ourselves in a racial social justice issue, not a disability social justice issue. And so it got pretty nasty and the agency changed executive directors and a 6 new one came who was pretty outraged by the whole thing. And it was a year of battles between the city and the base service unit and the agency, ostensibly about other things. Parking, quality of care, I mean, other things, but always about this. And it got so negative that after two years, either the agency was going to terminate the contract or the city was going to terminate the contract. And the Pennhurst trial was going on at the time and so my husband and I went to the trial one day and looked at the back of the building when it was over, and went to the car and I said to him, “You know that Lawyer up there? Tom Gilhool? Why don’t we talk to him?” So we pulled Tom aside and my husband spent the evening in their house talking to him, and over the next week Tom cross examined city officials about this group home. Is it good? Do you like what’s happening there? Then why would you be terminating it? And he met with the state regional office and said, “This is unjust and wrong,” and Tom Gilhill stopped it. And Aaron stayed with us for four years. Eventually we got guardianship and he moved in with us. And we had black staff that were initially not welcome in the neighborhood, but all things eventually work out and people learn tolerance and acceptance and it worked out just find. But it was an interesting chapter in our lives and an odd little thing to happen in the midst of trying to do things with people with disabilities. 05:42:27:20 – 05:43:02:09 Lisa: When did you first feel like a family? You and Carl and Aaron? Nancy: Oh, probably right away. He would come every weekend. In the institution, children went home with their family every other weekend, that was the pattern. So every other weekend they’d hardly be, there’d be very few kids and all the families would come on Friday, and when they did that, Aaron went home with us on Friday nights. So we were right in that pattern, rhythm, routine. And all the holidays he spent with us, and he came to my – my family has a farm – we’d go up there on the weekends, go to Baltimore with my in-laws and he was absorbed into the family pretty quickly. 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 7 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 8 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 9 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 10 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. 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? Nancy: 1991. 11 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 etcetera. 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 12 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. Chapter 4: Nancy becomes PA Deputy Secretary for MR 06:06:25:13 – 06:12:21:25 Lisa: In 1993 you served as Pennsylvania’s Deputy Secretary of Mental Retardation, a role you served in until 2003? Nancy: Correct. Lisa: You were in charge of overseeing institutional and community services for more than 80,000 individuals. Um, during your time there as Deputy Secretary there was a 50 percent reduction in 13 institutional residency, which is pretty remarkable. Um, how are you able to accomplish all of that in this relatively short period of time? Nancy: Um, the first reason we could accomplish it, the first, as with all achievements there are many fathers and mothers. Um, one reason, let me step back. I was the Deputy Secretary for ten years, two at the end of one administration and then eight with a new administration so most of my time I worked for Governor Ridge, um and the Governor and his cabinet officer Feather Houston created an environment that enabled lots of good things to happen um the Governor was well educated on disability issues by the disability community by the Centers for Independent Living who had established a relationship with him when he was in congress so by the time, and end he and his wife both sat on the board of the Barber Center in Eerie so they knew a lot. He knew a lot and in fact in his campaign had a disability expert and so he came into office sort of getting a lot of it, understanding the issues um and hired a cabinet officer who was a really good manager who didn’t know anything about disability but who could generalize from just a little bit of information very effectively and get it, as we say. Um, the fact that I had been there for eight years already was very helpful, um I had relationships with a lot of people um, I knew the system, I knew the budget, I just knew a lot. So I was ready for a new Governor more than a new appointee is who has never worked in state government which is usually what happens. And so um, I was ramped up and they were open um, and the advocates were extraordinary. The advocates were extraordinary. Um, very early on they made the misstep of suggesting litigation and the secretary um there were lots and lots of conversations to make this happen but in the end there was a big meeting with the secretary and Kevin Casey who was the head of PNA at the time and um, Ron Rucker, who was a provider at the time and chair of our planning advisory committee and she said to them ‘You bring me a plan that's doable, that's credible, I promise you I’ll support it.’ And so we spend a year and a half doing something called a Multi-Year plan and it was data based, we hired somebody to get a lot of data about everything in Pennsylvania; who was being served, what it cost, blah blah blah blah blah blah. And we spent months with the planning advisory committee and the consultants laying it all out for them, here is where everybody is and here is what it costs and it exposed the disproportionate investment in the institutions at the expense of services in the community and the waiting list and it galvanized the stake holders to compromise. On one extreme, people wanted a plan that would close all the institutions within five years. On the other extreme, the institutional families on the planning advising committee wanted no institutions to close. And in the end, we compromised that over a five year period, 1500 people who leave the facilities and the money would be reinvested in the community. But the plan was just not about that. It was also about building infrastructure, and it was about developing certain service models, building an information infrastructure for credibility and accountability. And so, because everybody came together, literally signed on the dotted line, around the room on the multi year plan. We published about 100,000 copies, it was everywhere, and every group on the planning advisory committee, the providers, the advocates, the self-advocates, of which there were many, all stood by it and supported it. And so for a good, I would say that was probably the second year of the Ridge administration it became the foundation for the rest of that administration. Every year we got money. And then the next issue was the waiting list, and we did the same process for the waiting list initiative and began to get money for the waiting list. And so, it’s just, the stars were aligned. A good governor, a good secretary, the advocates were very mature, enough trust built up, and we I think – 14 everybody took advantage of that opportunity, and that was a collaborative that was really very successful. And I have to say the other factor was, for most of that time we were not in a recession but the Commonwealth budget was healthy, which really allowed the administration to make good on its commitment, which then engendered trust and confidence, and it just grew from there. 06:12:22:06 – 06:13:38:06 Lisa: You know, it says in the Multi Year plan, they address the sort of different places where everyone came. They said they agreed to get past absolute positions and agree on responsible action. Nancy: Yes. It really was an extraordinary experience to watch it happen. When we began, the people on the PAC, of which there were maybe about 25, would not even sit at the same table together. And we tried to hold a retreat and they wouldn’t agree on two or three consecutive dates, so we had to hold the retreat one day at a time. And actually that was the retreat that produced the concept of everyday lives, which preceded the Multi Year plan. But this was a group of people who were not on the same page. It was great disparity in the advocacy community, but over time they really came together. And I think Bill West at the time, Kevin Casey, deserve a lot of credit. I think PAR, PCPA, all those associations that are named in the planning advisory committee, to an organization and to a person behaved in the best way they could to compromise and come up with a good solution. It was really great. Chapter 5: Everyday Lives 06:13:39:05 – 06:20:39:21 Lisa: Another milestone that happened during your tenure was Everyday Lives. Nancy: Yes. Lisa: I wondered if you could tell us a little bit about what Everyday Lives is. Nancy: Well Everyday Lives was another survival effort. In ’87 when I came to state government with Steve Eidelman we inherited a kind of advisory committee that was a sort of kitchen cabinet, hand selected by the previous administration a plan, it did not come out of the governor’s office, Governor Thornburg’s offices came out of department, a plan to build 5,000 ICF/MR a year the next five years. And Steve and I knew instinctively that was a big mistake. And so we were desperate to figure out how to get out of that. And so, we said let’s put a planning advisory committee together, but not one that’s a kitchen cabinet of hand selected people. Let’s reach out, and it’s stretching here so we invent something that actually was a very good idea, that we would reach out to all the constituencies, all the provider associations, which there was three, advocacy association, self-advocacy association, the county administers – administrators, and we create a planning advisory committee but we would give them a weighted number of seats. So the county MH/MR administrators, of which there was only one organization, got five seats. But the provider associations only got two. The self-advocates got five seats, 15 and that so that when you sat at the table, the constituencies they represented were more balanced. And we invited them to be on the planning advisory committee with the understanding that their responsibility was to sit there in representation of their constituency, not as individuals. Which placed on them the obligation to bring to the PAC their point of view, speak for, and once things were agreed on or understood, to translate back to their constituencies. It was a kind of United Nations sort of thing. Democratic. And so we took a while to do that. We pulled them all together. And Steve said, ‘Before we just act on this old plan, let’s talk about – let’s make a plan about what we should be doing in the future’. And I think we spent two years doing that. Painful. But it was watershed. We hired facilitators and at the first meeting, this meeting that happened, this retreat that happened one day a month over three months, for the very first time self-advocates were at the table. We never had meetings with selfadvocates at the table in equal roles. And the question, and the Everyday Lives booklet walks you through this, what’s life like now? What do people want it to be? And so we asked the question, ‘What do people want?’ It was a simple question: what do people want? We broke up into groups and the answers that came out were really revolutionary because many of us who thought we were forward thinking and progressive expected what would come out are words like ‘we need more job coaches’, ‘we need more recreation’. We thought of the wants in terms of services, and instead what happened, because self-advocates were listened to, we heard things like, ‘I don’t want to take medication that I don’t want’, ‘I don’t want to live with people who hit me’, ‘I don’t want people to make fun of me’. The wants were really devastating. Really devastating. And it sobered everybody up. And then we spent a day saying the question that Guy Caruso and Jerry Kiracofe asked is, “If everything could be the way you’d want it to be, what would it look like?” And we had this paper on the wall. We drew pictures of everything, and it was pictures of going to school and, you know, getting married if you wanted to get married, and having a job, and going to the parks and voting and all that kind of stuff. And one of the dads who was from the ARC whose daughter lived in an institution over his dead body was she ever going leave that institution, he looked at the wall, he said, “Oh my God, that’s just the life the rest of us have”. And that’s how Everyday Lives got named. It’s just a life like everybody else. And it really changed everything. We could listen to self-advocates, we could keep their life experiences, it’s very person centered, although we didn’t have the language back then, and Everyday Lives was the foundation for everything and the first test was not long after that, the Emeryville Settlement Agreement. And when we negotiated the Embreeville Settlement agreement the question is, do we believe in this thing? Because Everyday Lives has, what do people want? Choice, control over their own lives, dignity, there’s a list of about seventy things. So we said, shouldn’t, if we mean this, shouldn’t we build this into the settlement agreement? So we built into the settlement agreement that people would choose where they want to live and who they want to live it. Naively built that into the settlement agreement. And then when it came time to start taking people out, we understood what we’d done. Because up until that point when people left institutions, we gave money to counties and counties decided who was leaving and where they were going and which provider and who they were living with. And now, it started with who wants to go, where do you want to go, and who do you want to live with? Well it takes three, four times longer to do that. All their decisions are inconvenient. People wanted to go home, that we didn’t think they remembered. I remember there’s a woman who wanted to go live in Dolphin County in Steelton. Who knew she remembered that? And so counties got money based on who wanted to leave and when they wanted to leave, and providers got business based on whether or not 16 consumers chose them. Consumers and their families. So it took a lot longer but it was terrifically wonderful. The people who left Embreeville went, all went all different places. Some went to live with staff who they had lifelong relationships with. Some went back with families. But it was a very, very successful closure and became the foundation, but it’s how everybody knew we meant it, because we changed our practices. Chapter 6: Self-determination 06:20:39:25 – 06:21:33:26 Lisa: Did that experience lay the groundwork for self-determination? Nancy: Laid the groundwork for everything. I mean, once you give – you reverse or invert the power, it’s inverted, and so, certainly I think about the closure of Western Center. Families interviewed four and five providers, they picked the providers, and went out and picked the house. And so, that’s the essence of self-determination. I control what happens to me. I control who touches me. I control who supports me. I control where I go. All those words, self-determination, all that stuff all makes sense, ‘cause people now had some experience with acting on it. But, and what we learned is that it’s incredibly inconvenient for people in power. Too bad. 06:21:54:04 – 06:23:22:08 Lisa: Wanted to go back to the concept of self-determination. There certainly was a pilot project in Pennsylvania supported by the Robert Wood Johnson foundation. You’ve talked a lot about what selfdetermination means and what control means for people with disabilities. I’m recalling a conversation I had with Debbie Robinson about the issue of self-determination and Debbie said in hindsight she wished she had approached self-determination differently because in sharing that philosophy with other selfadvocates, she said she was taking to folks who hadn’t been allowed in their lives, because of their maybe, because they lived in institutions or because they had been perhaps not allowed freedoms in their day-to-day lives, people couldn’t make basic choices like what they’d have for breakfast. Or she would take folks to conferences and there would be a buffet and people would be afraid to take food from the table, not sure if they were entitled or allowed. She said some people were having difficulty making the most basic choices in life. How do you tell them they can control their budget and make choices about their services and providers? And I don’t know what experience you had or what your thought were about that, having been in state government when the self-determination pilot project was put in place. 06:23:33:08 – 06:26:56:17 Nancy: At one time when people would ask me to come and speak and talk, and talk about selfdetermination I would tell them a story about my sister-in-law and her little girl. And the story was that my sister-in-law took her two year old little girl to the doctors for a physical and my sister was a really 17 good mother and she really listens and – but they live in a farm and they’re a great distance from the doctors. It’s twenty miles. And she took Ellie to the office and the doctor went to undress her and Ellie said no. And really didn’t want the doctor to look at her. And I’m always aligned with my sister-in-law, but in that case I know I would have said, ‘Ellie, I drove twenty miles, we know the doctor, Mommy’s here. You got to take your shirt off, the doctor’s gonna look at you.” But my sister-in-law didn’t. She said, “Ellie that’s okay. If you don’t want the doctor to look at you, that’s okay. We’ll leave, and when you think it’s okay we can come back.” And what I tell everybody is what did Ellie learn? She learned, ‘I’m in charge of my body, and nobody can look at it without me saying it’s okay’. She really learned that lesson that day. And if you met Ellie today at 15, she’s the same girl and we don’t have to worry about Ellie’s victimization or what Ellie’s gonna do. And so when I think about self-determination I’m far more interested in it at the level of that intimacy. Self-determination on a daily basis that’s far more important than, did you get to pick the house you want to live in? That’s important but what’s the point if you don’t have the confidence and self-assurance of saying ‘you can’t touch me’, or ‘I’m not gonna eat that because I don’t like it’, or ‘I’m wearing jeans today because that’s what I want to wear’. And I think that it starts with families and it starts when children are young and it’s a particularly challenging skill to build in children with disabilities because their life experience is one of dependency. I mean, these are the kids who get made fun of, who are denigrated, who are putdown. So they already are one step behind in building the sense of self-esteem and self-control and then we teach them compliance, because we punish them for not being compliant, and that’s all I think very, very problematic. And it’s, you know, we have a terrifically high rate of abuse, including sexual abuse, among people with cognitive disabilities. Astronomically high. Because they don’t learn to say no. And so I think of it in those terms far more than I think about controlling a budget and hiring and firing staff. That will come very naturally if people have personal power over their own lives. Debbie’s right. Debbie’s right in that its hard to talk to people about good choices when they don’t get to make little choices. Lisa: Little choices that maybe aren’t so little. Nancy: That’s right. They’re foundational. Chapter 7: National Work and Inspirations 06:27:02:27 – 06:27:36:07 Nancy, when you left Pennsylvania, you started working on the federal level. First as Director of Quality Improvement, is that right? For DHHS Center for Medicare and Medicaid services? I think I got that all. Nancy: CMS. The Center for Medicare and Medicaid Services. I worked there for three years after I left DPW (Department of Public Welfare). Lisa: And now you direct the National Association of State Directors of Developmental and Disabilities Services. Nancy: Right. 18 Lisa: You don’t have a short title do you? Nancy: No, not a short title. All these government related jobs are so long. 06:27:37:12 – 06:28:57:16 Lisa: I’m wondering which of your past lives, past positions, have afforded you the most satisfaction or have given you the opportunity to accomplish the most? Nancy: Oh, being state director. And everybody who’s ever been a director in any state will tell you it’s the best job they ever had. It’s incredibly satisfying. Every moment of the day matters. At the federal level you’re so removed from constituencies and so insulated from them, and no matter what you do it was difficult to see the direct impact on people. I mean it’s there. You write a policy, or you affix a piece of legislation, you do affect people’s lives and there’s some satisfaction in that. But in the state director’s job in any state, every single day, everything you do matters, a lot. Um, every decision you make, every meeting you’re at, you have the power to make people’s lives better and it’s thrilling making the effort. I mean it keeps you on our toes, it’s an incredible challenge and it’s so worthy and motivating that when you succeed in doing something and can see it the satisfaction is just terrific. It feels really good. 06:28:58:11 – 06:30:02:27 Lisa: Who or what have been the greatest inspirations for you? Either professionally or personally? Nancy: Oh, wow. Well, Kennedy. John F. Kennedy. Um, Miles Horton. Whom I don’t know but whom I’ve read. My best friend, Beth Barol from whom I’ve learned almost everything about relating to other people, how to relate to other people. And I would say certainly Wolfensburger and that little crowd of folks who challenged fifty years of thinking and exposed all the prejudice of the past and the horrors of the past and I think righted the world for people with disabilities. I know I’m leaving out some great people but it’s what comes to my mind this moment. 06:30:04:26 – 06:31:58:21 Lisa: What would you like to accomplish still? Either professionally or personally? Nancy: Well. Um, there are two things that bother me a lot about – that affect people particularly with developmental disabilities. One is the level of abuse that goes pretty much unaddressed. I think the national ARC has a little bit of an initiative around this but it’s a big, dirty, public secret. We all know the rates are 80-90 percent. We don’t talk about it. If it were any other population we’d have a big national campaign like domestic violence or something, and so I’m very bothered by that and I’d like to do 19 something about that. And the other is the constant discovery of Do Not Resuscitate orders in people’s records and people’s files. Just last week I read an article the CDC wrote, Center for Disease Control wrote, about a children’s institution in state and the focus was influenza and vaccines and how rapidly it spreads and why you should vaccinate and talked in the article was just a mention that eleven of the thirteen children that died had Do Not Resuscitate orders on their files and they weren’t terminally ill. And I think those things rot society and our culture and obviously are very dangerous for people with disabilities and I’d like to find a way to expose those and do something about those but I’m not sure how. 06:32:00:05 – 06:36:03:23 Lisa: Given all the cutbacks, state and federal level, that will absolutely affect people with disabilities and families what is your kind of current mood? Nancy: We have a lot of money in our system. The system for people with intellectual disabilities is by far the best funded system in the country and our population with the most funding, and I don’t think we spend it really well. I don’t support cutbacks but we still have 30 thousand people living in institutions at a hundred and some thousand dollars a year. We have some states that have a lot of private institutions. We’ve got – we’re paying 25 thousand dollars a year for people to go to sheltered workshops. I really, really believe that if we, I really believe that we could reconfigure the money to do better for more people. Um, and I think that, I think that we have, for the next two decades the challenge is going to be how to really support families. We’re going into a couple of decades where the baby boomers are – I think in twenty years the baby boomers, 25 - 20 percent of the population will be over 65. Baby boomers are joining social security at the rate of ten thousand people a day and so the significance of that is older people need assistance and so the demand for assistance in the next couple of decades is going to grow significantly just because they’re aging. And so our capacity to continue to expand 24 hour residential services is pretty much dead now. The states aren’t expanding now, and we have waiting lists. And so what I believe to be true, and actually what we’re educating the state directors about is if people aren’t going to be abandoned with their families and feel alone, then we need to retool our systems to really support families. To support them so well that even if an out of home placement’s available they say never mind, this is really good. And that level of support is more than we’re used to giving, although it costs a lot less than a group home. We don’t know how to do it. I don’t think in systems we relate to families very well, at all. And I think it’s because we still all have institutions in our DNA. I mean, most people managing this system grew up like I did in the early ‘70s in the system and my roots are in institutions that literally told families, do not - leave your child here, do not visit your child for six months ‘til we break the bonds. And while I never said those words to any parent, I worked in a facility that behaved that way where the parents came every other weekend to the front door. Never saw where their children lived, never saw who their children were with. And so we kept parents at bay and I think we still do. I don’t think we know how to partner with families. I don’t think we know how to collaborate with families and share the responsibility with them. We like to give them services. We like to drop some services like personal care but we still leave them isolated, uninformed, 20 and alone in worrying about the future. We don’t do financial planning with them. We don’t do longterm succession planning with family members. We leave them to suffer with all the worries about the future when it’s gonna be our responsibility, ‘cause if they don’t figure it will be our responsibility. So I think our systems need to retool entirely and focus on supporting families and getting people real jobs. And over the next couple of decades that’s the challenge. And if we don’t learn how to do it really well the outcomes won’t be very good. But if we do learn how to do it well, I think people will have a good life even though we’re in economic straits. 06:36:04:25 – 06:35:11:24 Lisa: Thank you. That’s all that I had for today. I don’t know if there’s anything that you care to add or that you think we missed. Nancy: Thank you. Lisa: Thank you so much. 21