Chapter 5: Community Living, Successes and Challenges

22:40:28:00 - 22:44:15:24

L. Charlotte you mentioned that some of your fellow ARC members, fellow parents, had concerns and fears about community and as you say community was so new. There were so many unknowns.

C. Yes.

L. Um did you understand or even share some of their concerns early on about community and whether people could be successful in community?

C. Well fortunately I was able to visit in the community some of the people that were being released because they gradually started to release people from Pennhurst and of course when they first started to release them, they released the higher functioning people who could do, who they knew could do well in the community. So I had the opportunity to visit with a lot of these people and it was wonderful. It was wonderful because these people were high enough functioning that they could really without too much additional training and so on and so forth, with just some minimal support, could really do well in the community and they were thrilled. They had their bedroom and they could put up their baseball posters and have their little radio by the bed and over things that you and I do and think nothing of it. They were able to do and they were just, they were thrilled. They were thrilled. Now one of the things was that they were older. A lot of these people, like I say, the two men that I was connected with were up in there, oh, they were late sixties when I knew them and they were both in their seventies when they passed away so they had been institutionalized for a long time and they just thrived in the community. They just had a ball. They loved it and their case manager visited, of course, every month. So I would often go with the case manager and I have to tell my little story. These men were like I say in their late sixties and when the case manager would go and I would go, I would bring cheese and crackers and some soda and so forth and they were in a, they were in an apartment. I think it was three gentleman were there and so this one day we visited and we talked about current events and what they were doing and if they went to the baseball game and whatever. And so this one day when we were packing up and getting ready to say goodbye and leave, we'd stay an hour or so, this one gentleman came over, one of my men that I was (?) for them and he said you know I like wine. So I said alright that's okay so I said to the case manager afterwards would they be, you know, would it be okay? And she said well they're 69 years old if they can't have a glass of wine now and if that's what they want. And I said okay alright next time we go I'll bring a bottle of wine so the next time we went we each had a nice little glass of wine and they enjoyed it very much with their cheese and crackers. They were just, they were so cute. One time I took them to K-Mart to buy new jeans and uh, it was fun. I had to get the key to the dressing room and of course there I am with these two old gentlemen going in and buying their jeans. They were thrilled. They had never done anything like that before so it was wonderful; it was really wonderful.

22:44:16:26 - 22:50:02:11

L. Charlotte, I wonder seeing people, these two gentlemen, others, succeed in the community. Did it start to change the way you were thinking of Beverly's future and what she might do?

C. Yes, yes. It did. It did. Now Beverly is a lot lower functioning and would need a lot more care but yes it did and Beverly was reached in age. She reached the age of 21 and at 21 assistance stops and opportunities stop in that day in age that was it. So the Department of Public Instruction was done as far as financial aid and Beverly was transferred to Woodhaven which was an institution up off of North Broad street, not far from Bayberry actually and it was I understood, set up to accommodate people with behavior problems that were coming out of Pennhurst and trying to behave, shape one behavior for them to better adjust to the community. Now behavior shaping was a whole new ballgame because there was no such thing as behavior shaping years and years ago. Behavior shaping was done by, the client would get a psychologist and the psychologist would study them and write up a program; a behavior state program and this program was then to be followed by staff or anyone that was dealing with the client and so Woodhaven was to be a behavior shaping program and so Beverly was transferred up to Woodhaven. Beverly had had some unusual behavior because of some anti-psychotic medicine that she was given at Elwyn. She was given the medication without my consent. I had no idea what anti-psychotic medication was. I never run into it before and so after this whole episode was over, of course, I made it my business to find out what it was and became quite an advocate for being very careful when it's used. So through that she was referred up to Woodhaven at the age of 21 so she was at Woodhaven for two years and then she was offered a place in the community and it was very different because when Pennhurst was first dispersed. There was mass… there was a lawsuit of course. It was a class action and she became a part of class because we had, through advice, put her name on the waiting list for Pennhurst simply because it might provide an avenue for her to get some services so this did happen and because her name was on the waiting list she became a part the Penhurst class. So there was a client from Penhurst who was dispersed and put into the group home. She was mentally retarded and blind and very self-abusive; a very unfortunate case. Her parents did not really want her to be let, put out of Penhurst. They were very much into the safety and the bricks and mortar thoughts. However they did let her go into the group home so they were very, very skeptical about whoever was going to go into the group home with this gal so they were looking for clients that were rather quiet and did not have behavior problems and Beverly's name came up along with another girl and so I was told, I was called one morning by my case manager. She said she wanted to come and talk to me about Bev and I said fine and she did. And she said how would you like to have your daughter in a group home in Paoli? And I said oh how fast can that happen? And I think Beverly made the fastest exit out of an intuition and into a group home. I thought it sounded wonderful and it would only be 15 minutes from my home so I was thrilled to death. And so that was accomplished and well we had to go, my husband and I, maybe Beverly I can't quite remember but we had to go and meet inspection. The parents of this girl had to meet with us and question us and inspect us and make sure that this was going to be a suitable thing, approved by them so forth and so on. Very different from today I might tell you and so we passed mustard and so Beverly went into the group home.

22:50:09:10 - 22:58:38:01

L. I'm wondering what the experience of them moving to community was like for Beverly. It was probably the first experience in community since she was a young child.

C. Well she did very well. She really, you know, I'm so proud of her because she has always adjusted so well to whatever she's faced with which is, to me, been wonderful. It really has and when she first went into the group home everything was new. The group home was new. The staff was new. No one knew really what they were doing to tell you the truth. They all were doing trying to do what they were supposed to do and um it was a difficult time actually. And Bev, the house that they moved into was a little split level and it had a great big picture window in the living room; glass and at night when it got dark outside and the lights were on inside, uh, Bev could see her reflection in the glass in the front window and the same when she rode in an automobile because she wasn't really used to driving around in a car. So if she was transported here and there in the car she would see the reflection of things as they go by when you're in a car sometimes you'll see reflections in the car window. Well some of the inexperienced staff said oh she must be hallucinating so they recommended that she be put on an anti-psychotic medication and when I heard that I just about flipped so I said, the case manager called me and told me they were going to put her on this medication. I said no, no, no, I don't want her on that medication. I want you to and she said well, and she's as much as said well it's an order and that's the way it's going to be. I said oh no it's not going to be. I said I want to call Mr. McKinstry who was the administrator, an HMR administrator at the time in Chester County and I said uh, I'll discuss it with him. So okay I called him and he knew who I was at the time because I had interactions with him one time or another and I said I don't want her on this medication. It's not the right thing and I, you know, I want more of a looksee at this and see what the problem is. I said I want your word that she will not be placed on that medication until I have time to investigate it and he said okay. Well in the meantime they already put her on the medication and so however they found out what was going to happen happened. What I told them. She was really had an allergic reaction to it in that Beverly, any kind of medication that is supposed to calm you down, she has like a reverse reaction and this is what happened and of course the minute they noticed what was going on they took her off of it but when I went on Friday to pick her up for the weekend I could tell that she had been on something but they said no she wasn't on anything at this moment. Well she wasn't at this moment but she had been I guess a day or so before. So I just was furious and I had become acquainted with someone at Woodhaven and I was there, who was a former pharmacologist. His name was Alan Guywitz, I don't know where he is today, but he was studying at the time for his psychology degree and I was thinking wow, a psychologist that's a former pharmacologist, what a gem he is. So I called him and I told him the situation and he said to put your daughter on an anti-psychotic medication is not only unethical it's illegal and he said do you have a lawyer? I said well I have a lawyer but he doesn't know anything about anti-psychotic medication and he said well I have one that does so he said I‘ll give you his name and you call him right away and he'll straighten the matter out. I said "good" so he gave me his name. His name was Tom Coval. I can't… I'm trying to of his first name but anyway it was Coeval and he was from Willow Grove and so I made an immediate appointment, went up there, talked to him, and he said the same thing. He said they can't do that, that's not right. He said, uh I said well I have an appointment with Mr. McKinstry to talk about it and he said no, no cancel the appointment. I'll make the appointment. I'm going to make an appointment and I'll have the whole team in there and we'll discuss it. So I said ok so this is what he did and he told me when it was and so forth. So I went to the appointment with Coval and everybody was there. Mr. McKinstry was there, his assistant was there, the owner of the group home was there, the staff was there, the case manager was there, and myself and my lawyer. The lawyer said before we start this meeting, I want to make a statement. I want every one of you to know that what you did by giving an anti-psychotic medication to Beverly without the consent of her mother or her team, her guardian and her team, he said was not only unethical, it was illegal. Now Mrs. Twaddell has the right at this point to take every one of you to court and with that in mind we'll start this meeting. Well there were some wide eyes and dropped mouths and I was saying yay, right on! So we got that straightened out in a big hurry and so Beverly was not on any anti-psychotic medication and I said to Mr. Coval once we left the room, what can I do to prevent her ever being put on this without my agreement. He said it may cost you a couple of dollars but you should be become her legal guardian. It's a court process in that she must be adjudicated incompetent and you will be placed, her parents will be her legal guardians. I said well then make arrangements because that's what I want done. So I think back in that day and age it was about a thousand dollars for the court hearing and so forth. And Beverly fortunately did not have to appear in court but my husband and I had to appear and testify and we were made her legal guardians. Now we can't pass that on. The courts will, which I have done, named in my will my son as her legal guardian and the courts will be very cognizant of that fact and pay attention to it but for him to be a completely legal guardian, it's court process and he would have to do that so I'm hoping that he won't have to do that. I'm hoping that his position as my naming him legal guardian will suffice but he knows that if it doesn't that he would probably then go and have the court process over again.

22:58:38:08 - 23:00:25:02

L. Charlotte, I think many people would assume that parents always had guardianship or authority over the direction…

C. They do. They assume that but it's not true. Not really when you get right down to brass tacks as the lawyer said the court will pay strict attention to that and uphold that to the best of their ability but to be an actual legal guardian of someone that person has to be adjudicated incompetent and you named as their… and I'll tell you where people run into it all the time is in nursing homes. That an awful lot of times, uh, person can be whether, whether true or not true or whether necessary or not necessary they can be adjudicated incompetent and someone else made their legal guardian. So that can happen but in the case of Beverly it was necessary and it, I can't, I can't fault it because there had been many times when I said this is the way I want it to be and I'm her legal guardian and they don't know what I'm talking about. They say oh you're her guardian? I say I'm her legal guardian. It's a legal guardian and I… there've been a couple of other people that have gone the process. And I'm not saying its right/wrong. It's an individual thing. If it's necessary, it's necessary but Beverly can, she doesn't take a breath unless I say it's okay and that's the way I wanted it.

23:00:26:02 - 23:05:52:22

L. Certainly, there's so much philosophically today around choice and self-determination…

C. Well choice and self-determination is a wonderful, wonderful, wonderful thing but when a person can't speak how do you know? And they can't write and they can't communicate with you. Who's to say what the choice is? And I have been through this a dozen times with Beverly because she does not speak. She can communicate to a point but she won't answer your question. Do you like ice cream? She might say guess, you know. Do you like chocolate or vanilla? I don't know. You know. It's impossible to get a choice out of her let alone ask her where she wants to live or you know. Now I know because I've dealt with her for so many years, what she likes and what she doesn't like. And I'm so close to her that I can read her face. Uh, when I say something to her that she likes she's got that little smile and uh, that kind of thing. I know when she's not happy. She gets very, very silent, very quiet and so in her case, but you know what do you do in a case like that? If somebody doesn't have full authority, I just never, never wanted them to be able to give her another drop of anti-psychotic medication unless I thought it was absolutely necessary. I'm not saying it never could happen but I would have to know that it was extremely necessary because she's got some problems today that came from anti-psychotic. She has some hand tremors that came from anti-psychotic medication that she was given at Elwyn and uh not totally unnecessary but I didn't know what it was and I thought it was necessary at the time. These are the authorities. These are the people I'm paying thousands of dollars a month to deal with my daughter and they're telling me she needs this medication and I'm thinking I guess, you know but that was back when I was a lot younger and a lot stupider to put it plainly, yeah. And it won't happen again, ever while I have any breathe left in me that's for sure. No. I mean her good is my goal and whatever is good for her is what I'm going to deal with regardless whether I like it or not. I'm, many times have not pleased myself but if it's for her good, that's the main thing. Not me, her and she's done very well in the group home but unfortunately today finances are such that politicians have cut the costs. They don't pay staff people what they should pay them. It's exactly the same as if you have a loved one in a nursing home. It's the same thing. These folks, hands on people, are not paid enough and if you do not go and check on them and if they do not have an advocate, I don't care where it is. I've had some serious surgery. I was in a nursing home following my heart operation and in the idle of the night one night a nurse came in and said we're going to take some blood out of your arm. I said oh, okay, what are you doing that for? Well we want to check your Cumiden levels and I said oh I'm not on Cumiden and she said oh. So she goes pout of the room. After a while she came back and she said no, you're right, you're not on Cumiden. Thank you for being alert. I said you're quite welcome. Now if I hadn't said they she would be checking my blood for Cumiden and saying oh her level is very low. I think she needs a good shot of Cumiden or something, you know. I mean really and if you can't speak up for yourself, either you're old and can't do it or you're disabled and can't do it, you better have an advocate. That's all I can say and I'm trying to be an advocate for my daughter at all times and trying to teach my son how to be an advocate and so far so good but I don't know. I'm hoping for the best.