Chapter 6: Closure of Western Center

09:01:12:05 - 09:01:46:08

Lisa: Why was the opposition particularly strong in Western Center's case do you think?

Marsha: You had a well-developed parent group. You had leadership of that parent group who had made a decision many, many years ago and felt that they had made the right decision and while they did concede that there were some issues at Western, they felt strongly that they could be fixed from within.

09:01:50:05 - 09:03:17:11

Lisa: Around Western Center folks like Dan were urging other parents who were resistant to closing Western Center to get guardianship.

Marsha: Absolutely. It's a big issue even today in terms of deinstitutionalization and Dan on this end of the state and Polly Spare on the other end of the state were actively encouraging. In fact they hired an attorney who would do mass guardianship for families who really, really resisted the notion of their sons and daughters coming home to community support. Recognize also that most of the individuals from, were living at Western Center, were also from Allegheny County, also Beaver, small amount Butler though most of those folks had come home from Polk, West Moreland County. Families were close. They visited every weekend, every other weekend. It wasn't like individuals at Polk who might have a few visits a year. So you had active family engagement, you had a leader in the national movement of Voices for the Retarded and they were, frankly, hell bent on keeping it open, yep.

09:03:18:04 - 09:04:48:25

Lisa: It seems what was certainly driving the resistance was their fear that people with significant disabilities couldn't be served in the community. Did you think that any of those fears were valid?

Marsha: Those fears have never been valid. I mean, we know as professionals that for every individual who might be very medically fragile or have significant behavioral challenges, for each of those individuals who were living at Western Center, we had individuals, they're twins living in a home with their families with minimal support and families were making it work for that son or daughter. Did we need to increase some fundamental supports? Yes. Medically we needed to work with the University of Pittsburgh to identify physicians who could work with individuals with significant disabilities. Dental work, we identified individuals who had had significant experience working with people who might not want to open their mouth to see a dentist and so there were infrastructure pieces that needed to be put in place, but we knew that it was doable, sure.

09:04:51:12 - 09:07:30:19

Lisa: In April of 2000 the state did begin to shut down Western Center. That was a particularly....

Marsha: Controversial?

Lisa: Controversial day.

Marsha: Yeah.

Lisa: Can you tell me at that point how many folks were in Western and what happened the day that the majority of those folks were moved from Western?

Marsha: There were probably only about, I'm going to say sixty- some people remaining at Western Center and staff was being laid off and the Department of Public Welfare made the determination and we through the settlement knew that the time had come. Nancy Thaylor, with the assistance of the state police, made a critical decision. Families knew that a large number of people, it may have been as many as forty people, were going to move to their established homes in a day and those families still, even though some of their sons and daughters had left Western Center, were still very, very resistant to the closure of the facility. So they lined up outside the gates of Western Center with reporters waiting because they had already announced they were going to stop the vans. That they were not going to allow them to leave Western Center. Well these were families that were used to coming up to the main gate and forgot the back through the orchards, there was a second entrance and so the Department of Public Welfare well staged this. That's to say they had police cars and things out in the main entrance where the families and the media were waiting and instead they escorted folks out another entrance to their homes. So yeah, again, screeching newspaper headlines and it was not an easy day and of course we all looked back on that for a long time, and talked about it with Nancy. It was a bold decision obviously. But she felt in her heart of hearts than rather to have a confrontation with family members and union members that she would opt for an alternative.

09:07:31:20 - 09:07:37:05

Lisa: Hindsight being 20/20 could it have been done differently?

Marsha: I think she did the right thing.

09:07:41:15 - 09:09:34:16

Lisa: I know that disability advocates, parents on both sides of the closure issue criticized the way Western was closed. It's interesting to me that the advocates on both sides, or the people who were vocal were often parents of children with disabilities and I'm wondering how the parents interacted with each other?

Marsha: There was a lot of tension. There had been tension between family members who were active with the ARC and who had kept their sons and daughters at home and with the family members who had made a different decision, and had their children; sons and daughters in ICFs and more. Bubbled over a couple of times in the court room; federal district court here which doesn't have a lot of pews and seating but it was pouring out into the hallways. I think the folks kept their cool fairly well but the parents group at Western Center used every opportunity that they had to challenge the initial decision on the class. They were challenging continuously and while that slowed things down in terms of achieving a settlement agreement it also I think exasperated some of the tension that already had existed between and among family members who had made different decisions and saw the future in a different way.

09:09:35:12 - 09:13:12:24

Lisa: Marsha not everyone who left Western Center that day, of the police barricades and the parent protests went to community directly.

Marsha: We were really upset about that. That's right.

Lisa: And I think that played out several times, when centers and ICFs closed people perhaps with the most significant needs were just simply...

Marsha: You also had it at Altoona Center. Now in certain number of cases, these were individuals, though the Western was going to close on a given date, these were individuals though for maybe some reason their home in West Moreland County was not yet ready because there was neighbor resistance and we were going through litigation under the Fair Housing Act. Some of it was that the timing for an absolute closure didn't work, but you could no longer keep Western open for what I think was twenty-six people. So a number of those individuals went up to Ebensburg and subsequently came into the community. To put this in perspective remember that, talk about a lot of work in the community for families, for providers, and of course the self-advocacy movement was emerging at that time. We were not placing those 400 people from Western. They had community companions. So we were, once again, rapidly putting into community support, some 800 people. And once we achieved the Settlement Agreement there were tight deadlines that had to be made and I know that in some parts of the state the community providers view themselves as competitors. Again, Pittsburgh is close to Ohio. We are as much Midwestern as we are east coast and the provider systems just worked together beautifully and it was the first time that I had experience as a professional in deinstitutionalization doing things the way it should be done. That's to say roommates weren't assigned because they happened to have lived together for many years. There was family involvement. Our families in the community got to meet each other over an extended period of time and would meet at Eden Park and the families would share their sense of values and we really tried to make, if two people were going to live together, make that the decision of the two individuals who were going to live together but to involve their families in the whole experience but yeah, our providers -provider system -was working very, very, very hard and trying to do this in the best way possible. A little group of us at what is now ACHIEVA were assigned the responsibility. We did not have a Special Master. We were monitoring everything with the Department of Public Welfare so we would get bi-weekly report; each individual, who their case manager was, what their new address was, what the annual expenditure would be, the copy of the ISP, and we monitored all of this with great care.

09:13:32:22 - 09:14:36:15

Lisa: You just referred to the monitoring of people once they moved to community making sure they were happy and safe in their homes. I believe Dan Trosky, the president of the Western parents group, son's moved into community and Dan along the line became happy with his placement. Is that true?

Marsha: That's accurate and you know that's the common, common experience as you know and our deinstitutionalization efforts. Families, even those who resist the hardest, often times come back to us afterwards and say my son or daughter is really happy. The provider is doing a great job and we never quite get that apology for all that resistance, but the fact that they as family members are as pleased as their sons and daughters seem to be in community supports is fulfilling, yeah.