Chapter 3: Origins of M5 Organization

00:25:58:10 - 00:29:02:29

L. So in the late sixties you were sort of working on behalf of some of the deaf or newly diagnosed residents at Pennhurst. Um certainly as you had mentioned earlier there was a lot going on regarding Pennhurst closure. There had been an expose by Bill Baldini from NBC10 called Suffer Little Children and certainly litigation was um being pursued um facilitated by I think David Ferleger and the folks from PILCOP [Public Interest Law Center of Philadelphia] on behalf of the ARC. Lots of conversation about closing Pennhurst and questions, I think, about how to support people in the community after that. And I'm wondering how those conversations sort of resonated with you and Sam and Carol?

E. Well at this point, uh, by 1971 or 70, Carol had a job at one of the local base service units and we were actually meeting and doing our Tuesday night meetings at her base service unit. And she had learned from [Joe Scarlett] the director of her base service unit this whole idea of group homes. Um, and that people were accepting submissions of proposals and that's how we found out the whole idea was a possibility. Um of course we had a unique concept of having all the deaf people in one group home that we could from the Philadelphia area because everything was based on geography on what county you lived in. So we actually invited Edith Ballard, who was the director of Mental Health Mental Retardation at the time, to visit one of our Tuesday night meetings at the base service unit. And she did and she was impressed with what she saw that she got an idea and a grasp on what our goal was. In terms of manual communication and that people all together in the group, needed to know manual communication so therefore it would be beneficial for the mentally retarded residents who needed manual communication to be in a home where the staff and the other residents also use manual communication. So that whole idea made sense uh what didn't make sense in terms of the rules were that our potential residents were from every different catchment area in Philadelphia so this would require a special unique uh group home that covered all catchment areas or went across boundaries. So we submitted the proposal and it was accepted and uh Edith recommended one of the base service units for us to locate and to locate our home in which was in the Kensington area and on Lee High Avenue, we met with the director there.

00:29:48:16 - 00:31:32:26

E. I forget the name, but it was the base service unit that covered the Kensington area and their office was on Le High Avenue on the hospital there and um Carol, Sam and I met with the director of the base service unit saying that we had a proposal that we could open up a group home and uh Edith Ballard had recommended his catchment area. Well then he was asking us our backgrounds and why we were opening up a group home. We explained our whole philosophy and the whole idea of manual communication and how all the residents would be deaf. And um so he asked us our name and everything and we hadn't even been incorporated yet. We were in the process because that was part of the thing; you had to be incorporated and because of our varied background; mine being in learning theory, Carol's in fine arts, and Sam as officially in English Literature, he said we were like the three musketeers. So we said okay, that'll be our name; 3M. We weren't allowed to take 3M legally so we told the lawyer just pick the next highest number and it became M5 and that's where we got our name but it also signed well in sign language; M5 so it worked out because people would say where are you going? We're going to M5 tonight. So that's how we got our name because people wondered how in the world did you get that name?

00:31:33:10 - 00:33:26:25

L. As you said group homes were really just coming on to the scene in Pennsylvania. Was there any kind of a framework for you to follow?

E. This was all new, I mean we were breaking ground and all the little things, zoning even, uh once we were funded we bought a house and uh our belief was that contact the zoning board, tell them what you wanted to do so they could tell you what was needed in the home. And months went by when we were pursuing this and we finally learned that you have to open up the home, then inspect it, find the violations, and then you correct the violations. You can't really open up a home without violations. You had to open up a home then be inspected and be in violation and then correct them. But it took us so long to figure that out that in the process we sold the home and rented three smaller homes which was easier to do because of zoning with three people it wasn't consider a multi-family dwelling. See originally we thought we'd have eight residents so therefore it was a multi-family dwelling and it was a unique creature and the whole zoning board, there were no group homes for unrelated people with staff that aren't related living in and uh but it was much easier with only three people to get through the zoning because it was a single family home and uh it was workable and we did that. And we pursued it in several catchment areas at that point to find enough homes.

00:34:13:16 - 00:35:35:22

L. You talked about having a group home where the residents were all deaf and I wondered what you thought would be the benefit of having a group home that was comprised of all people who were dually diagnosed with deafness being one of their diagnoses? What did you think would be the benefit and what did you hope to offer these folks?

E. We hoped to offer these folks an ability to learn language and from that maybe gain skills in English and be more successful getting a job or just with life in general. Uh, we also hoped that if they learned manual language they'd be able to fit in more with the deaf sub culture; the normal deaf sub culture. Plus we were hiring staff at the time that were either in school to become interpreters for the deaf or deaf people looking for work. So we thought that would help these people transition into the deaf culture; sub culture. That was our goal. Not really the regular culture but the deaf sub culture and then from there they could deal more with relationships in the overall culture but that was the basic original goal.

00:35:35:23 - 00:36:18:11

L. And what did you think that would give folks that entry into the deaf sub culture was important for what reason?

E. To be accepted. I mean these were people that were not any group who they were isolated. They were really isolated. I mean if you think of deafness, how much it isolates you, uh because you don't have a language. The deafness deprives you of the language. It's devastating and so we thought this would help facilitate otherwise they would remain isolated.

00:36:20:05 - 00:39:18:17

L. I'm curious with your first series of group homes, you said you had rented three apartments. Um, how was it that you found residents for your homes? How did you recruit people to…

E. Well, all the residents in the beginning came from Pennhurst. Uh, from the unit that I was describing at Pennhurst where the deaf residents were grouped together and uh it was my job to go visit the clients at Pennhurst and gradually get them used to the idea of moving out. Uh most of these folks had been long term residents at Pennhurst and that was home for them. I would take them out to dinner. I would bring them snacks. I would take them, you know, on trips. We would go to the group home for dinner. We would go to the group home for maybe a day visit. Go on activities with activities with staff that might be working at the group home and do it very gradually and once we had a few residents we only started with one resident per home. We didn't fill the home in a week. We did it gradually. At least you could in those days. I think its different now. You have time frames and everything but we did it very gradually. Some of the residents did come from the community. We had one resident who was living at home who had been to the Pennsylvania school for the deaf but because he had been taught in an oral tradition it was very hard for him to break him of his habit of trying to speak and no one could understand what he said. It was… he thought people could understand what he said because he had been trained for years to speak that way but he really couldn't but he was a quick learner in terms of manual communication. And uh he was someone who moved into one of our group homes. All the resident and all the staff got… the manual communication really tied them together. You could see the give and take, you know just everyday stuff. You set the table, you wash the dished, you know, hand me this, hand me that, did you do this, did you do that? They didn't have that before the manual communication. That's sort of give and take between people didn't exist, you know so this was a big change and just that was a real positive achievement. Uh we had another resident from the community whose father happened to be the president of a very important company in Pennsylvania. It was actually a nationwide company.

00:39:44:14 - 00:40:57:18

L. You said for many people Pennhurst had been home for most of their lives, um, was it… were people reluctant to move?

E. Some were, some were. After a few of our residents were placed the people in the unit were looking forward to coming with me because they would hear about it, you know, from the staff there. And uh when all nine residents were finally placed and uh we were in the community about a year but Pennhurst was still open. Pennhurst took a while to have everybody placed. I took all nine of them back to visit and they went back in their newest clothing and everything that they were all very proud of. They didn't want to be there. They didn't want… they looked around. They just didn't want to be there. That was not where they wanted to be anymore. They wanted to be back in their group home so it was a real good feeling that they had made that transition. I mean it was really quite dramatic to see that they didn't want to be there.

00:41:46:15 - 00:42:46:02

L. I'm wondering if the families of folks you were transitioning from Pennhurst to group homes; where they were they involved? Were they excited about the possibility of community? Were any of them reluctant for their children?

E. Some were very excited. Some were happy. Some were very reluctant. We had one family who uh they swore that their son would be the last person to leave Pennhurst because they had heard horror stories about what a group home was. Um, other families couldn't have been more supportive. They were thrilled. Uh, there child wasn't in an institution anymore, they were in a real house. Um so we had the full gamut of responses from families. Not all of our clients had families that were involved at all. I would say it was a very small proportion of the residents we had that had actual involved families.

00:42:52:20 - 00:45:47:04

L. You had said earlier, Earl that obviously this was all very new; the whole idea of group homes was very new. I'm wondering sort of what licensing requirements perhaps, um, were mandatory, um and what you might require of staff.

E. Well we were there before licensing. We were there, everything was new. Um we heard that in future there would be licensing regs but they hadn't existed yet or hadn't been created yet. Uh and we were always the ones who put our foot in, like we called wage an hour to come to our home to see if we were doing things right. In those days you had staff sleep over night and you didn't pay for them to sleep over night since you were providing a bedroom for them but they were really on call. They were at work. And of course wage an hour told us this was all wrong. You had to pay them for every hour they were in the group home. So we alerted the city that the whole state was in violation of wage an hour regulations for group homes because we had invited them into see what we were doing. So they sort of did a blind eye because we would have had to pay all the past hours but we knew from that point on we had to pay for all hours worked which holy changed the budget because you didn't have it in the budget for overnight hours for people who slept there so that was one of the things we did. Uh of course the zoning thing, we were at many zoning hearings. Um we never really had much problem with the community except for one of the group homes we had which was at Alden Park Manor, where um the neighbors of the apartment we rented didn't have a problem with us but the management did. Uh, and uh didn't want to renew our lease. This is when we went to them to rent a second apartment and uh so we hired David Ferlerger to sue the city and uh not throw us out of the apartment. And we won our case in the end. PILCOP [Public Interest Law Center of Philadelphia] being a big help to us and Eleanor Oak and so they were all on our side and fighting us being thrown out of this apartment building and in the end the apartment building had to agree to rent one of its units to handicapped individuals. We had long gone since then because it took so long for the whole case to be heard but we did achieve victory in that if you want to call it that.

00:45:47:15 - 00:47:46:04

L. What you just described opens the door for something very interesting I think which is how you approach community with group homes. I know you had very specific ideas about how to approach the community about the group home and how to be sure that the folks in the group home became a welcomed part of the community and I wondered if you could tell me about that.

E. We did it gradually. Again we would go into a neighborhood and this is a house we're renting. Um, we would invite the neighbors in and you know have snacks for them or something so they could see… because of course we're furnishing the home, painting it, fixing it up, whatever so they could see that we weren't some horrible… I didn't know what people thought they thought group homes were some horrible thing that would degrade their community and they didn't want that in their backyard sort of attitude. We were afraid of that attitude. We didn't want our people to be ostracized. We wanted to fit in and so that's one of the ways we did it. Um some of the other ways we did it were actually meeting the neighbors before we even moved in. We may have, in one of our homes, we knew the person that owned the house and so she knew the neighbors because it was her home so we were able to meet with the neighbors because of her contact with them to explain who we were before we moved in and then again once we moved in, invite them to see what we were doing. And that's the best way we found to move in and to make sure that the residents were dressed appropriately for the situation and the staff were dressed appropriately for the situation; to just blend in and to just move in quietly.

00:47:46:25 - 00:48:38:26

L. And how did the community generally respond?

E. We, except for that one problem, didn't have a problem and in that one instance we didn't have a problem with the neighbors. They were perfectly happy with us. It was again with the management who had this feeling they shouldn't be renting to us because we were one of those experiments. In fact we were told "We don't want to rent to those animals" which was often a familiar feeling you got from people back then. You know it was uh a lot of education has happened to the public since then. It really is uh quite a different world we live in now than we did back in the late sixties.

00:48:40:05 - 00:50:48:22

L. I wonder um again as you were trying to figure all of this out, how to make a group home work, how to support people successfully in the community, what requirements did you have of the staff of group homes?

E. Well in the beginning of course, we wanted staff with manual communication. We were in Philadelphia, in those three group homes until 1984. In 1984, well actually before 1984 we also had a group home in Chester County for one deaf resident. This was by himself. Um we were, um, funded though for a three group home proposal so we had two other residents move into his group home so we had one group home in Chester County and three in Philadelphia. And um in 1984 because of funding and everything we decided to move out of Philadelphia. At that point the clients were really going along pretty well. They had all established relationships with one another. They were moving towards goals of being employed. They had day programs except for one person who refused to do anything but go fishing in the Schuylkill River and um he was a unique person and he, uh, persuaded the system to adapt to what his needs were and his desires were. But outside of that we felt it was okay for us to leave and that everything would be okay and so the base service unit in which the group homes were located at that time, uh, took over the group homes and the staff. The staff basically stayed and we expanded in Chester County at that time. Um, I don't know if that answers your question.

L. It does.