Chapter 4: M5 Moves to Chester County, PA

00:50:49:10 - 00:53:59:05

L. You had mentioned someone that you were supporting in Chester County and I know you were supporting them at the same time you were starting in Philadelphia. Chester County approached you because this individual was very unique and the circumstances in which he came to you were very unique so maybe you could tell me…

E. Chester County approached us. This was the early seventies when we were first getting going. They had a deaf client in prison, in Chester County Prison that was diagnosed as mentally retarded and he had been lost there. And the district attorney at the time said something must be done. He needs to be placed out of prison. So they asked us to evaluate him to see what his needs were and we felt he might be a good candidate for a group home. That the reasons he was in prison, he would get into a lot of trouble with his family. He lived in Coatesville and he was getting into trouble all of the time but it didn't seem anything too terrible. He had been in Pennhurst briefly but had set a fire in Pennhurst and then he left Pennhurst. Um, he had stolen. He had a lot of misdemeanors against him but we felt that we could help him. Uh, and if he was supervised he would be okay in a community setting and uh that's how it started. He was put in a group home that we started with two other hearing residents. Uh, then he had an incident with one of the hearing residents which put him back in prison. He stabbed the resident. Uh and we realized at that point that he needed 24 hour one on one supervision and we said we would take him back only if we could set up a program like that for him and he's been with us ever since

E. Sometimes he has an issue of becoming anxious and we have staff that has been with him for quite a few years that can read his behavior and we know how to avoid an episode. Uh we know what his needs are at those times. He needs a break from his routine. He might need to go to a movie. He might need a day off from work. Uh, for some reason or another he needs a break from his routine and usually that works really well and we've avoided major episodes for years. Um, and uh he's pretty much working in the community doing really well.

00:54:00:10 - 00:55:54:18

L. Is this someone that you also had to teach manual communication?

E. Oh yeah. He, although he had to P-State, Pennsylvania School for the Deaf, he basically lived at home in isolation of language, uh and he needed very basic sign language in the beginning. Uh you know cards with pictures on them. Give me this, give me that. Very basic things. Now he can speak in sentences and he communicates in sign language. It's his language now. You can see its how he wants so communicate. Because he is mentally retarded though he doesn't give you the alternatives a normal deaf person would. A normal deaf person will read your face and see maybe you're not getting what they're saying and then try another way of saying it; try more gestures, less sign language, maybe some acting out. Whereas the more handicap deaf person doesn't pick up on those nuances and just uses the one means of communication. In his case the words he's learned in sign language and if you don't get it and you look concerned than he looks concerned and then you got concern going back and forth with your face. So uh that is one thing you can see with him but um we can usually overcome it by questioning his words because some of his words are mixed up but he's using sign language as his language now and uh he just doesn't realize that everybody doesn't quite understand the way he signs because he has his own unique flavor to his sign language.

00:55:54:20 - 00:56:49:00

L. So given what you're describing, how important is continuity of staff and care to his success?

E. We've been very fortunate in all our homes in Philadelphia and in Chester County. We have staff that has been with us 25 years or more. I would say more than 50 percent of our staff have been with us 10 years or more and we find that a really positive valuable asset because uh they know how people react to certain things. They know what the people's needs are that are not expressed maybe through language and um the people feel confident in who they're coming home to every night. So that's a big asset to have longevity in the staff. Yeah.

00:56:57:10 - 00:57:31:20

L. I want to go back for just a minute, Earl, to when you were sort of in two counties; when M5 was existing… you had three group homes I believe in Philadelphia, you had one in Chester County…

E. Right.

00:57:31:22 - 01:00:55:27

L. Certainly during the time when Pennhurst was dispersing its residents into the community I'm wondering if you were getting pressure to expand as an agency or as a provider.

E. Oh yes. We were getting pressure to expand um especially in Philadelphia. Um, they said we were a mom and pop organization which we liked but it was said in the negative way. Uh and that was one of the reasons we left. We just uh we felt we could provide a quality care to the number of residents we had. Where we had hands on supervision of the staff. Um, this would be Carol, Sam, and myself and uh we didn't want, we are a mom and pop organization. That's what we are and that's how we operate. We have a unique philosophy in that uh which was unusual back then especially of positive reinforcement. We didn't feel the word no helped at all and we felt that all the negative way that people are treated was not the way that this should be done. Uh we live in a culture that does punishment as part of its culture but we didn't feel that was the way to go. We saw enough punishment that brought nothing around to uh helping anybody and we… and from the learning I had at Temple University in learning theory, uh, I felt the same way. So did Sam, so did Carol. We came to that conclusion through our independent ways. Sam actually had training as a family therapist at Children's Hospital where he became a family therapist for families with a deaf individual and um he was taught by Sal Minuchin and Jay Haley who had authored some books that we all read and they had put into words what we felt. And so that became our philosophy of running our group homes. Uh which we put into our codes and practices which all the staff read but we would hire people based on our feeling they could perform in this way; in a positive way and that was very important to us. And so expanding to become a larger facility was not what we wanted to do. We wanted to provide this situation as positive as we could in a hands on way and that's why we stayed small; why we left Philadelphia. And Chester County fostered that with us. They didn't pressure us. They always asked but they didn't uh pressure us. They were more than helpful in uh setting us up and supporting us and they still are. It's a nice county to work in.

L. Thank you.

01:01:25:05 - 01:01:58:04

L. Earl I'm going back to, if I can, to something we touched on a little bit earlier. By the time you were working in Chester County, 84 I believe,

01:03:15:14 - 01:06:42:05

L. Pennhurst was in its final days of closure and I'm wondering if you can talk to us a little bit more about some of the reactions of families when you were transitioning their family member from Pennhurst into the community; perhaps some of their concerns and how you addressed them?

E. The situation was to open up three group homes in Chester County to replace the three in Philadelphia. We had to take clients that weren't deaf because there weren't enough deaf residents in Pennhurst from Chester County so we opened it up to clients that were communication impaired. Um so we were looking at people that have Cerebral Palsy that couldn't speak, people who had syndromes were resulted in unable to speak. These were all people who could hear but they couldn't communicate through verbal speech. Um, one of those residents, his parents were adamant that he would not leave Pennhurst and they even said publically that their son would close Pennhurst. He would be the last one to leave and when he moved into our group home, um, I think it was Bill McKendry who was the director of Chester County at the time, came to visit him at the group home because he was the last Chester County resident to be placed in the group home. And they had this horrible feeling that their son wouldn't be taken care of, he's be abused, taken advantage of so we expected them to come every day and visit him which they did, especially his father. His father came every day and shaved him and gradually became a believer in the group home for his son and turned out to be a very positive thing. When his father passed away his mother continue supporting her son in our group home and it turned out to be a positive thing even though it started out to be almost scary because the father actually came in the first day he was here with movie cameras and took films of the home and you know was bound to find something wrong you know but it turned out okay in the end. Um, for the other Chester county residents we had the families were actually rather supportive. Uh we had one mother who was thrilled that her son wasn't in an ICFMR anymore where he didn't really get a lot of special care and was in a group home here. Um, and we had other family members who were basically not involved with their child or their sister or who we would try to get involved. Especially on holidays and things like that so we really only had the one negative experience.

01:06:48:00 - 01:08:58:00

L. I'm wondering when families saw their children succeeding, if that to reconnect with their child or even helped, um, other family members reconnect with the clients you were serving; seeing how well they were actually living in community.

E. Yeah I would agree with that. Um, it developed into people actually going home overnight; let's say for Christmas and things like that where I know when they were in the institution that didn't happen um for those particular people. So I think that helped. Um as time went by though we had people coming more for the community because Pennhurst had closed at that point and Emeryville, we had taken all the clients from Emeryville that Chester County had also. Um so it's a whole different, it's a whole different situation when you have clients from the community. Uh it has to be addressed in a different way. The family is mainly facing getting older and having this older person living at home. The person isn't in an institution where they're safe somewhere, you know. Um they have to do something now because they're getting older and we see more and more of that now. Uh…

E. One instance is we um, I happened to be going to a funeral for a neighbor; an elderly woman who died whose son happened to be mentally retarded and at the funeral the brother approached me knowing what I did for a living because now he had his brother and he didn't know what to do. And we see more and more families in that situation.

01:09:01:05 - 01:09:48:03

L. I'm wondering if um you're also seeing opportunities for the folks you served to connect with their extended families. Maybe in ways they hadn't done before.

E. Um I'm really can't answer that because uh we have a total of 13 residents and we really only have two families involved with those 13 residents. All the other residents, their families…. Of course our residents are getting elderly. We have residents in their seventies and we have one resident who is 92. So they've outlived a lot of their immediate family so I really can't answer that question in our situation because again we are a small agency.

01:09:49:15 - 01:12:23:28

L. So in talking about maybe the system sort of a change of tact, the system serves people with disabilities, all systems really changed for many reasons because of the time shifts, ideologies, maybe even administration. I'm wondering what your assessment is of where the system is today?

E. Well um there's so much more oversight today bureaucratically that it's almost a hindrance because um for us as a small agency, it seems overwhelming at times of all the compliance issues and all the regulations and everything. Um, that um… I can see why the need is there but uh when you boil it all down it's the people working in the home dealing with the residents that is the core of the situation. The core of the uh service you're offering. No matter how many regulations you make, uh, it's not going to change how the people interact. Again our hands on supervision of the staff and um the discussion, an open discussion with the staff; you have to respect your staff and that's where it's at. The regulation can be overwhelming for somebody starting up now. If we were starting up I don't think we would get started. There's so much. I mean back when we started we were just pioneering an unknown territory. We had an idea and we were able to follow it we're able to work within this current structure just fine but it is kind of overwhelming at times what we have to do in terms of complying with all the rules and regulations. Luckily uh that's sort of my bend. I can do that. Carol works as the program specialist dealing directly with clients and staff and we have a third person now who replaces Sam Scott who deals with behavioral issues so um we all have our roles in this whole situation which works out for us as a mom and pop organization.

01:12:24:20 - 01:12:45:04

L. I've heard some providers say that they felt that they could support their residents more creatively um back in the day. I wonder if that's something you feel?

E. Yes that's true but of course we worked through that. We try to do that anyway.

01:12:46:00 - 01:15:00:07

L. You had talked about um the importance of staff several times during our conversation and I think it's pretty commonly acknowledged that staff in group homes aren't particularly well paid for their work.

E. No.

L. But despite that M5 has an incredibly reputation for longevity of staff and I'm wondering if you can tell us why.

E. Yeah we don't… we probably pay less than a lot of providers in fact. The problems with once you're a provider and you have increments you have to base it on where you start it. You can't come in with a higher starting part but we are totally available to our staff 24 hours a day seven days a week. Both Carol, Marjorie and myself and um any problem they have, we will help with. We'll drive out. We have two nurses, a part-time nurse and a full-time nurse. We actually need that now because we have so many elderly residents living with us and their health needs become more and more. And the whole health industry now is a different animal too. I mean there's so many specialists involved with these clients now but it used to be the GP or the PCP or whatever you want to call it. Um, but I think providing all that support for the staff and listening to them, um enables them to work for us. We're also very flexible. If you can only work Fridays once a month then you work Friday once a month. If you can work every other Saturday, you work every other Saturday, we try to fit the hours to what their lifestyle is. So we have a lot of people that work sort of odd shifts because that's when they can work. We always found if the people wanted to work in that field anyway, even if they work only from Saturday to Sunday night, it's be better to have them then to try to fit them into 9-5 or something.