Chapter 7: Leona and Work for Pennhurst Special Master, Walter in Community, Leona Resigns from Woodhaven Board

Lisa: We are continuing the interview with David and Kate Fialkowski here at Temple University here on July 5th, 2012, and also present is our videographer, Aggie Ebrahimi Bazaz, and David and Kate, do I have your permission to continue our interview?

Kate: Yes. Yes. (To David) Yes?

[David yawns]

Kate: That's what it felt last time. [Laughter]

Lisa: Thanks. So, David and Kate, when we were talking last time, we sort of finished our first interview talking about your brother, Walter, and his experience at Woodhaven, and we were speaking with you and Walter went to live at Wood haven 1977. I actually want to ask you a little bit more about that in a bit, but I know that soon after Walter moved to Woodhaven, your mother, Leona Fialkowski, took her first paid job.

18:37:22:25-18:37:44:04

Kate: Yeah. In 1978, our mom took a job with the office of the Special Master, and she was apparently liaison, and her job was to help parents with the transition for their kids who were living in Pennhurst, so it was part of the Pennhurst dispersal.

Lisa: And why do you think she wanted that job?

18:37:50:00-18::39:07:00

Kate: Yeah, that job was really important, because you know, I mentioned the story before about how everyone had no alternatives, you know, parents didn't have any alternatives, so when they had children with developmental disabilities they were told to put them in institutions like Pennhurst, and so the Pennhurst dispersal really marked the beginning of a movement out of institutions and into community living. There were really two phases of that, so the first phase was the Right to Education. That was the first phase so that children who were born would be able to immediately go into schools and have an education, and then, the second part was to move people from the institutions out into the community.

[David's Voice]

Kate: (To David) Yeah. You can participate. You can answer some of the questions. OK? Ready for the next one?

Lisa: Maybe David you can tell me if you remember what it was like at home when your mom actually went out to work. Did things change at home?

18:39:18:09-18:40:52:00

Kate: (To David) Do you remember Mommy going to work and staying home with Daddy? It was -- I think that it's probably the period that our brothers and sisters are most jealous about, because it was the first time that we had a, you know, additional income, so we had two things.

We had additional income and fewer kids, you know, fewer mouths to feed, so it was a pretty stellar time from a financial perspective. It felt like real boon years, and it was different though, because our dad was certainly used to being the breadwinner in the family, and by this time he had already retired, so he had been living at home for a couple of years. He retired in 1976, and so it was sort of a juxtaposition that our mom was going out to work and dad was staying at home, so that was a little -- that was sort of a little odd, and you know, little family story. The worst part of it was that our dad decided that he would start cooking and experimenting, and he mostly cooked by color, so he picked things that he thought would go well together based on their colors, including the seasonings that he put in there. So, while our brothers and sisters think that those were the boon years for us, really, they were very sad years from a food perspective. So.

Lisa: Do you remember any of his culinary masterpieces.

Kate: I tried not to. It's one of those traumatizing events of our childhood.

Lisa: So, David and Kate, your parents had sent Walter to Woodhaven, because as he was reaching adulthood and transitioning from public school to private life, there real write virtually no community supports, no supports for community living in Philadelphia at the time. You had mentioned earlier, Kate, that Woodhaven was meant to be a place that trained professionals that brought great thinkers together to learn about best practices in the field and help transition people into the community, especially people with significant disabilities. Can you tell me a little bit about your mothers efforts or maybe both of your parents' efforts to move Walter from Woodhaven into a community living arrangement?

18:41:51:11-18:43:15:26

18:43:42:15- 18:45:41:02

Kate: Um, I don't remember much about that experience. I mean, I remember obviously I remember quite a lot about Woodhaven, and also how Woodhaven was really meant to be sort of a short-term stay, more like a halfway point to help people reintegrate back into the community. What I do remember though is there was a real barrier for individuals with more significant disabilities to live in community living arrangements, so there were community living arrangements that had starred, but there weren't really any community living arrangements for people with more significant and multiple disabilities, and so, it was really pretty substantial when my mom was able to raining for Walter to move into one of those houses, and it was almost seen like a demonstration to be able to show that individuals with very significant disabilities could live in the community, and it's fascinating, because even today, I've gone around the country and seen some different family situations, and even today, many people will say that you don't understand my child has very significant disabilities, and so the only place that they can live is in an institution, and I can certainly say that my brothers, David and Walter, both had very significant disabilities, and both of them have done very well living in community arrangements. Probably done even better because of the amount of social interaction, and even family participating more in the process because it's more like a natural house and a natural home and natural family members.

Lisa: Can you tell me a little bit more by what you mean about a natural house and natural supports, and maybe what life was like for your brother Walter?

18:45:45:20-18:46:46:05

Kate: Yeah, so when Walter moved into his home, I'm trying to remember how many people were living in his house. I want to say that there were about four or five -- I could be mistaken, and it was pretty close to our family, so our parents could go over there all the time and still visit all the time. There weren't any particular visitation hours, so it was more like somebody living in a house, you know. You could go to the house. You could call. You could say hey, I want to stop by, and so it functioned like a house, and the people who were living in the house functioned like a family unit, and so it was just it was so much more comfortable to be able to go there and participate there than it was to go to the, you know, to go to Woodhaven.

18:46:53:01

Lisa: David, do you remember if Walter was happy living in his house?

Kate: Walter was more happy living in his house than he was living in Woodhaven. Um, that's sort of a qualified answer because he still wasn't home. And so it took awhile to begin adjusting. But because it was more like a natural house, Walter was adjusting to that as a house. You know, he was able to do things with the people who lived there. It certainly has a more natural – it had a more natural routine associated with it, and so yeah, it felt more like a home, you know, and I could tell that Walter was pretty happy there.

18:47:59:07

Lisa: David and Kate, you mother served on Woodhaven's Board of Trustees for many years, but in 1984 she resigned from the Board. She wrote a letter to Gov. Thornburgh and wrote, "In recent months, its become clear that the Woodhaven goal will not be achieved, in fact, the goal has been abandoned. I have no desire to be a Trustee of a non-habilitative organization that offers no hope to its residents, other than continued institutionalization". Those are pretty strong words, that she wrote. What brought her to that point, the point where she decided that she needed to resign at that Woodhaven wasn't meeting its goals?

Kate: Yes, so, um, she really felt betrayed by the process at Woodhaven. So the intent was that it really would become first a transitional place, a temporary place for people to go and that it was really supposed to set up a model of community living, and be a stepping stone toward community living.

[David's voice]

Kate (To David): You can add something. Do you remember? It was supposed to be a stepping stone to community living. But it didn't turn out that way at all, and then once people got to Woodhaven, they just stayed in Woodhaven. And so Mom felt really betrayed because she was really opposed strongly, vehemently, as an activist, opposed to institutionalization, and here she was on the Board of Trustees of an institution. And so she felt a little duped by the process, that now she had moved to the other side, if you will. So it was really a very difficult time, and certainly difficult for her to give up hope of what she thought Woodhaven would be – that it really would teach the best minds, that it really would create the new community options, it would be very progressive, and instead it ended up having a lot of new furniture trying some things out but ultimately people were meant to stay there. And that was a real problem.

18:50:26:14

Lisa: David, I wanted to talk about you for a moment if we could. I wanted to ask you David about being in high school. And I wanted to ask you when you graduated, and what that was like.

Kate (To David): Do you remember your high school graduation? I'm not sure I remember your high school graduation. Um, you graduated when you were 25 years old. So I'm not exactly sure what year that was. And, um, and you were 25 years old when you graduated instead of 21 because, um, because, because of the PARC court case. And there was a part of it where the families actually went back and sues the state again because the state wasn't actually implementing the Consent Decree, and so individuals, it was found that individuals who were supposed to get an education had not gotten the education that was deemed their due, and so many of the individuals like David, who were In the process got an extended education so that instead of leaving at 21, they were able to stay there until they were 25. So you went to high school until you were 25, and then you graduated.

[David's voice]

18:52:09:27

Lisa: And David, what did you do after you graduated high school?

Kate (to David): Do you remember those years? Those long years? So those years, most families call that the ‘cliff'. So this is called the cliff. After the Entitlement program is over then there's no Entitlement left, and so individuals leave school and they don't have any family supports, and day supports, any employment or any other programs and so that's the period where individuals sit home. So for David, for example, there were things that were pluses and minuses, about school.

(To David) For example, before you went to school you spoke, quite a lot. So David had a small vocabulary. He had words in his vocabulary he could ask for specific things. It's a lot of vocabulary to just know our names because there are so many of us. And, um, so one of the things that happened through the educational process is that David lost his vocabulary. And this happened because, you know imagine if there are ten kids, and every time a kid goes by they say "Hi, David", and "Good morning, David", "How are you, David?". You know, ten kids and two parents are an awful lot of people to be saying hello to you all day long, to be talking to you all day long and, obviously, there is no school in the world that could compensate for that level of communication, right? But there were great things about school once things started changing, and for David, you had programs that really helped you with daily living skills, um, you started moving from the back room into areas that were more part of the classroom, having lunch with other students. And one of the things that's really fascinating about David's life story is that his life story is really the entire life story of the Movement, right, from the beginning to end. From the Right to Education, through the teachers' part of the Education, through to it becoming an Entitlement, and then, you know, onward. So, so the education was really fascinating. After the Education there was nothing, and, um, (To David) Daddy had retired by then, and Mommy was at home, you were at home, and the three of you were at home all alone together for a long time. For a really long time.

18:55:09:09

Lisa: I'm probably going to skip ahead, but I think it's a good segue, I know that your parents, David and Kate, were part of a class action suit brought by the Goode Administration (Wilson Goode was the Mayor of Philadelphia at that time), to ask the state to pay an additional 7 million dollars in services to avoid people with disabilities falling off that cliff. Can you tell me a little more about that class action, and how it was resolved?

Kate: No, that one I can't. So, um, I graduated from high school in 1982, and then, so, in 1982 I moved to Ohio, and so then I wasn't really in the house from that point on, for the latter years. And so you know it was interesting because I went back and, um, I had my mom's papers and it was really fascinating. I started laying them all out – a year, a year, a year at a time. I started laying out all her papers out in a row and I realized that she had been in some sort of court case for over 20 years. And so it really was this entire lifespan, from the late '60s all the way up to the mid '80s, on just resolving issues related to, um, related to the educational system, and through transitioning through that post-educational phase. Twenty years.

[David's Voice]

Kate (to David): Twenty years. Your entire life.

[David's Voice]

Lisa: David and Kate. If its...

[David's voice]

Kate (to David): Yeah? Do you want to sit up? You can sit up. Here you go.