Chapter 8: Transition from Pennhurst and Community Collaborative

13:36:00:27 - 13:45:05:21

Lisa: So Nancy, I wanted to ask you very quickly about a case that you probably can't really speak quickly about, which is Pennhurst. And of course with the closure of Pennhurst, people who had been institutionalized were being now transitioned into the community. I know that there were some; parents who kept their children at home, who were put on waiting lists for supports and services. I wonder if there was any tension between --

Nancy: There was, there was a little resentment, because the intent was to get as many people out as possible, as quickly as possible, and so there was a large, important thing about providing the monies, and so there wasn't enough for both populations -- those who had been kept at home waiting for services, who maybe had gone to school and then after school there was nothing available, no place to go, because there was limitation as far as the workshop was concerned, or day program, or where they would come to.

And even as far as residential services, because there were communities that did not want them in their backyard. They did not want them out on their street, or we had an issue where some people from a few streets where we were talking about opening up a residential duplex ourselves, and they didn't like when some of the consumers or the people coming out, their physical appearance. Maybe their faces were a little deformed or they were in wheelchairs -- they didn't like to see that, so they wanted to make changes, as if we would do something like that, you know, maybe exchange them for nicer looking people, which was abhorrent.

There was a group in Tacony that was supported by a political person who had his own agenda. He provided them with legal services. We were trying to open up a group home, and they fought it. They picketed us. There were several fires, and the FBI finally came into it. We had to decide whether we would keep it open or not for the safety of our consumers, and also for the staff had to come in, because staff also were not Caucasian. Most of the staff were not, and so we had to decide what we would do.

On our board we had a husband and wife who had been through the Holocaust, and so they knew about intimidation. They had a son who was intellectually disabled, and we talked about these things, and we decided that if we gave in and closed it down, they would have fires all over the city, for any residential program that would be opened up. And we provided them [staff] with cab service from the L-line to the home, back and forth, you know, for when one group would leave, you know, say 11:00 or whatever the time was, then the other group would go back to the L, because most people didn't have their own cars. And it worked out. In fact, one of the neighbors started to date one of the policemen who was guarding the place, and another neighbor, because our people became good neighbors, they would do some shoveling, they would do some going to supermarkets for them.

I was even honored at the Mayor's reception several years ago for her work, changing around her feelings about our people, living in the neighborhood. But getting back to the actual Pennhurst there, there was resentment, because it meant that people who had kept their children at home for all these years, fighting for services, looking for help, were then left at home without any support. There wasn't any parity. But it worked out. They understood, and finally some monies were available and we tried to see that everybody was served. Everybody understood about waiting lists.

The sad part is that when people came out of Pennhurst or Embreeville, the medical records did not follow with them. Providers were left completely at sea as to what their background was, what their illnesses were, what their allergies were, and had to start all over again. We had a large group of people coming out of Pennhurst at our agency, and now they've aged out, and they're enjoying their senior lives.

But because they came out, they were in their 30s and 40s and 50s, and people who should never have been institutionalized to begin with, high-functioning, and we had a very good, successful group [home] with two men who had a home, who lived in a two-story house on Castor Avenue, and ended up getting jobs, employment, and ended up as just staff coming in periodically to see if they need any help, and now they're on their own, they're no longer one of our people. So they are now independent in the community, working. So it is successful. So I don't think there is any resentfulness now.

Everybody's working for one thing, for everybody to get off waiting lists for services, and not have to wait for somebody to die to get into a residential service. Of course they're really not opening too many of them now. They have other means of either sharing a home or families who are willing to take in somebody with special needs, where they become part of the family and they are paid to do this, and sometimes they get services -- more services than the biological families did, and that's sometimes creates a schism in there, and I don't blame them. I would feel the same way. If you couldn't get any services for your child, but if they went to live with another family, then the family would get services, vacation time, somebody to take them for medical appointments, not the family, you know, that kind of thing. So that creates sometimes -- and rightly so -- a resentment. It seems to be like a two-party system, and that's unforgivable.

But again, we still hope to close the institutions because they should not be there, and even people who have had a history of being very, very difficult, with the right staff, the right trained staff -- of course, for those kind of people you might have -- somebody has a master's degree working, so of course the costs are more, then somebody just needs to be taught how to do laundry in their home, to be taught how to do shopping, to be taught how to do some cooking if possible, you know, be part of the family unit. People who have other issues besides intellectual disability need support that way, and they've gotten it. If you're willing to pay, you'll get the staff who are very, very caring and who will turn things around.

So it is successful, but unfortunately in today's world, not just people with disabilities, but seniors, poor people, are getting shafted, and they're not valuable enough. And so rather than raise taxes, which doesn't have to be, and I'm getting political now, is that businesses are getting a 25 percent tax cut, and services are getting a twenty percent cut, and sometimes more on top of the providers -- six percent plus another twenty percent, and counties are now told to -- to decide who's going to get what, which is not fair. So people with disabilities, people with mental health, people with drug and alcohol problems, people with homelessness, are all fighting for the same dollar, and the county has to decide who's going to get some of what. And that's totally unfair. There is money available, and just have to be willing to spend it.

13:45:05:21 - 13:50:55:11

Lisa: Nancy, you had referenced some of the problems transitioning from institutions into the community, and of course most people who know the system know that the attorneys representing the Pennhurst plaintiffs were unhappy with the way the transition from institutions to community was going. They were unhappy with the timeliness of the transition, and had threatened the city of Philadelphia with more court action. In response to that, in an effort to avoid litigation, people like Nancy Thaler, Estelle Richman, among others, initiated Philadelphia's Community Collaborative, of which you are a part. So I'm wondering if you can tell me a little bit about what your role in the collaborative was.

Nancy: Well, it was a limited group of people. There were professionals and there were state people. There were some providers there, parents. I think we were only 50-some people, all told, and to get an input from the whole group, as to what was needed on behalf of people with special needs, and talked about relationship, talk about education, talk about living conditions, giving them choices. Because all along, families many times did not have choices, or the individuals themselves had no choices to where -- what they could do, how they could live, where they should live.

Now it's different. You are -- if you're talking just not with people within intellectual disability, talking about people with mental health issues. There's a Renaissance Program which includes the individual with their staff, and they talk with each other, people who are willing to do this, what are your goals? What is it that you want out of life? And they are articulate. And so now it's no longer where the professional is telling you what you should be doing, how you should be doing, why you should be doing it. It's now a partnership, and now they listen. So that the individual is now deciding what their future would be like, which may be different what the professional may see it. So the professional is not one telling you how to do something or why to do something, they're now sharing with you what is it that you want to do, and how do we go about doing it? What are the steps that you have to do to do this, and maybe some of your dreams are a little bit too much for you to do, but it could be something in the same line.

We had somebody one time who wanted to be a pilot, and -- oh no, one wanted to join the Foreign Legion. And we said, okay, what do you have to do, to join the Foreign Legion? First of all you have to know French. Second of all, you have to be able to get over there, and show why you want to be part of the foreign legion, and what does the foreign legion do? When you realize some of the barriers that he had overcome, he decided, well that was not appropriate, but he got a job at the airport doing some sort of maintenance. That was close to an airplane, that was close to someone wanted to do something different, and so he changed his focus.

There was somebody who -- I don't know who the consumers are, none of us do that -- but somebody wanted to join a synagogue in the Northeast, and she decided -- they said okay, well how are you going to make a choice? Well she had certain criteria, and she had a plan. It was written out. It had to be close to transportation, it had to be not just all old people, but some younger people, middle aged people, seniors also. It had to be something that she could afford. She went and interviewed the rabbis for several congregations, and she had her criteria out there in front of her. She checked off, decided where she wanted to go, but it was her plan, and it worked out well for her. As it turns out I believe she belongs to my synagogue, but I have no idea who it is, you know. But it's giving people choices now. Even with intellectual disability, it's giving them choices as to what do they like to do.

We had one of our consumers who wanted to work in a laundry, and that's what he does now. He enjoys it so much. If you see the video, he is so happy doing it, and the owner of the laundry is so happy to have him, he has given him more responsibilities. He loves doing laundry, and folding everything, and he's so precise about it, and he's so joyful in this.

So people are given choices as to how they want to spend their lives productively, and this is where both Pennhurst people -- I hate to say Pennhurst or Embreeville -- but people coming out of institutions are -- do you want to come out into the community, do you want to live in the community, do you want to be part of a young people's group, do you want to go to concerts, do you want to go to sports events, things like that. And they do, and it's giving them a choice. And so any more, there's the division between institution and community is being blended. The resentment that occurred at that time was difficult, but they got over it, and people understood.

13:50:58:29 - 13:54:06:10

Lisa: And I want to set you up by asking what your role in the collaborative was, maybe even starting with who invited you to participate.

Nancy: About the what?

Lisa: The community collaborative -- I'm wondering what your role was in that and who invited you to participate in the collaborative.

Nancy: Ah, trying to think. Somebody from the county decided to ask me to be part of it. Leona was part of it, Leona Fialkowski was part of it. Maybe she had part of it, I don't know. But I knew quite a few people who were part of it, and who decided, I have no idea, but I was invited to be part of it and I knew quite a few of the people, from the state level. And some of the advocates and some of the legal people that were involved -- Eileen Shane, who's the other one?

Lisa: Judy Gran? Judy Gran?

Nancy: Judy Gran, yeah. And it was interesting.

Lisa: Tell me what was interesting about it.

Nancy: It was interesting in getting different viewpoints, everybody trying to feel each other out. It also was limited time as to how much you could spend at each different little session. You know, you couldn't spend time in all the sessions, and then they gave you a certain amount of time where two people get together and try to ask questions about the other person, you know, that kind of thing, and you were given maybe eight, ten minutes, that kind of thing. And then they went around the room asking, well what did you learn about the other person, and unfortunately I was answering so many questions that I didn't ask enough questions for my partner, as to that way. So I think I fell down that way.

But it was a truly learning experience for everybody to actually come to grips with what people with a disability felt, their feelings, what they wanted out of life, and for the professionals, whether it was a family, members that I was, or some of the county people or the state people. We were on the same level. At that time, your position meant nothing, and coming to listen to what some of the consumers were concerned about, what they wanted, and finally trying to -- admitting that they have to be addressed. And it was like walking on eggshells, some of the issues, but it was a good one. It was a good basis for where things are today.

13:54:06:10 - 13:55:06:05

Lisa: Can you give me an example, Nancy of one of the issues that was like walking on eggshells around?

Nancy: Well, some of it was relationships, intimate relationships with other people. They wanted to feel that they were the same as everybody else in the population, whether -- how deeply involved the relationships would be, but they wanted to have a relationship and sometimes a physical relationship with the opposite sex. They wanted to have the ability to have a boyfriend or a girlfriend, and there were a few that became intimate and did get married in our population. With support, it worked out okay. So those were some of the issues. And more freedom to become part of the community and have opportunities to do things other than sitting in the wheelchair and being limited to what they could do.

13:55:06:05 - 13:59:11:03

Lisa: You mention other opportunities and I know that employment was a big issue for many people with disabilities, many self advocates. Can you tell me a little bit about the types of conversations around employment that came out of the collaborative?

Nancy: Well, the idea was that they should be able to have the same employment as the regular population. And sometimes with some attention to making some adjustments, if somebody was in a wheelchair, that was at the time there were no ramps for getting into office buildings, for getting into a lot of buildings, for people who could not manipulate steps, which could also contribute to the fact that they couldn't get employment in certain areas. So there had to be a lot of accommodation that way.

Everything's sort of spread out like you drop a pebble into a stream, you know, and it just ripples out. So the ripples had to be taken care of. All of a sudden you're having ripples, and so it opened up a whole new area of concern as to how do we get people into positions of employment, and having vans that could transport them, wheelchairs and all, and being able to get through a ramp, or to get up several steps that they could not otherwise overcome. And do positions in an office, do collating, doing filing, instead of just stuffing spoons and forks into a plastic bag in a workshop.

13:56:40:02

Lisa: Well, and you mentioned workshops. I know that there was some feeling in the collaboration that workshops should be a thing of the past.

Nancy: This was a meeting that I think I referred to before, where Maureen Devaney had asked some of us from PATH to come down to a meeting. It was held at the policeman/fireman's group in Spring Garden, where Judy Gran had spoken out from the Community Collaborative. The feeling was that they should abandon workshops, they should close them. And I listened, and then I raised my hand, and said, I was part of the Community Collaborative and no mention was ever made about closing workshops.

We considered workshops as one of many choices to be made. Some people would be very fortunate to go into a sheltered workshop. Some people it's a stepping stone, but it should be one of choice. Not everybody can have employment in the community, for whatever the reasons are. Not everybody -- the intellectual disability community is just as varied as the regular community is varied, with abilities and with what they would like to do, and with your abilities to do them. And so we felt that we should have the same choices.

For those who cannot function in the outside world, for it may not be the ability to do the job, but maybe some behaviors or emotional problems that make them fearful, and don't feel comfortable, or who are not accepted by their peers in a particular employment position, or maybe the responsibilities change after awhile.

I know someone who was employed by one of the -- like WaWa, to stock shelves, things like that. Then it was a requirement that they wanted him to be able to read. Well he wasn't able to read. Well, that was the requirement, so he had to leave that job.

So and then in the summertime, during the year he works in one of the high schools in the northeast in the cafeteria, but in the summertime, schools are closed, so he has the opportunity to come back to the workshop if necessary, if there are no other plans. But he's fortunate enough that he's able enough now to go on trips, vacation trips with a travel group. So that's how he's advanced that way.

13:59:11:03 - 14:00:53:07

Lisa: So Nancy, in the collaborative, there were clearly differing points of view on many issues. How did the collaborative work to resolve those issues?

Nancy: Well, the thing is, once I spoke up and said this was not part of the Community Collaborative, that this was not an outcome to close workshops, you know, some people felt that we didn't want to support bricks and mortar. Well you have to have some place to get trained. Not everybody's able to come out of high school. You don't know what training went on in the school system also to prepare them, and we're talking about lower level, not talking about the top level of intellectual disabilities -- people who can read, who can speak very clearly, who can verbalize very well, who are adept physically, manually, and for those who had to do a different level of jobs, who needed work training, and maybe a day program, or even in a workshop, our workshop, and I'm sure other workshops are similar, there are social employment skills that have to be taught, is how to behave with your peers there, how to dress, how to eat in a lunchroom, how do you travel, how do you get to where you have to go -- all these things have to be taught. It's not just a matter of teaching a skill, how to put a widget into a bag or how to assemble an electrical light, that kind of thing, how to do janitorial services. But there's a social skill that should come along with it, and this is what we do. That's part of the workshop also. You just don't say, well here, go polish a floor.

14:00:53:07 - 14:03:02:12

Lisa: I guess I'm wondering a little bit about what the collaborative accomplished. I know its initial goal was to keep the city out of court, and that didn't happen. They were back in court. But despite that, were there some successes?

Nancy: Oh sure, yeah, because we have the results today, where people are living in residential programs, where people are leading normal lives, going to the theater, going to sports events, being part of a group of their peers, traveling together, they're out in the community, they're accepted in workplace, they're accepted in public places like supermarkets, where they're out in the public. You may see some of them who are getting the carts together when they're put in -- you know, after you fill your car with your groceries, and they take the carts back. They help to do some packing for when you're checking out. They're stocking shelves, they're doing all kinds of things. So this is the outcome of giving people choices that way, and listening. So people did listen, and it was trial and error, you know, like anything else. And you have growing pains, but we're successful today, and people no longer look askance at you, and there was somebody who was on television, there was a program about a Down syndrome, and so it's not the unusual thing anymore, and you walk along and that's just it And it's just unfortunate that because of the economy, that these things are being cut.

14:03:02:12 - 14:06:22:17

Lisa: I wanted to ask you one more - -

Nancy: Go ahead.

Lisa: - - question about the Collaborative if I could, before we move on to what you're talking about. I'm wondering if you felt that you became a better advocate as part of the Collaborative.

Nancy: Yes, because it reaffirmed that you have to be positive, not aggressive, not that we're obnoxious, but that you have to stand firm in your beliefs, and that you have a mission. I've always felt that, you know, once Robbie got into a PATH program, and she's in a day program, I really didn't have to do anymore, because personally she was set. But I felt that I couldn't stop, and other people feel the same way. That's why we're still active at my age, or a little bit younger -- I'm one of the older ones -- but you're still active doing what you can. Maybe in a lesser capacity.

I have a friend of mine, Lizzie Richardson, who doesn't do quite as much physically, but she's still there advocating. She's still there supporting families who might have some issues, trying to disseminate some of the anger or the frustration in explaining how going on the offensive is not always the right way to go, and we've been friends for a long time. And through her group I've been honored twice, believe it or not. But yes, you stand firm in what you feel you have to do, and it's a commitment. It's a lifelong commitment that you have to advocate for people coming into the system or people who have been living at home and enjoying themselves, and who lose a parent, and the parent who's in their 80s or -- can no longer do it, or that parent goes, and there's no one else to stand by. These are the people that you worry about, because I've been told, somebody from the state level, to get into a CLA residential program today, somebody has to die. Which is a sad state of affairs, that somebody has to die for somebody else to get off the waiting list. So that -- the community collaborative, for those of us who are part of it, they're still committed. Eileeen Shane, for one, and others like her who are under her protection, and Kevin Casey, who -- he was not part of the collaborative, but he was part of an advocate for a long time, before he became deputy secretary of MR. And so he's still in the business. He's not in Pennsylvania anymore, which I think you can eliminate, but he went to another state, doing I think something similar. I think those of us who come from the old days, have a different commitment because we know what things we're -- what was not available, and how the wars were fought so diligently to get where we are today, and don't want to see it destroyed.