Chapter 6: Charlotte's Current Advocacy Efforts and Thoughts on the Current System

23:05:59:06 - 23:13:06:13

L. So Charlotte you've been talking about the need to be really vigilant in your advocacy for your daughter. Um I'm wondering if you can tell me a little bit about um Beverly's living situation now; if it's something that you're satisfied yet, if you continue to give her the oversight that you described earlier?

C. Well first of all many years ago when they were talking about community involvement and closing state centers, I was a firm believer along with a lot of other folk, that these people can exist very well in the community and I think over the years that's been proven. But the ones that will make the quickest adjustment are the folks that needless to say are higher functioning and can cope with everyday living so on and so forth and with maybe a lot more minimal supervision. There are still lots of problems involved; marriage is one, having children is another. Uh, there was recently an article in the paper and in fact I've enclosed it in some things that I gave you earlier uh written by a teacher who has encountered children in her class that were very intelligent but there parents were mentally retarded and it's become an issue for them and sometimes a difficult issue in dealing with their lives. And so not too long ago I was called by someone who my nephew said oh, call my aunt Charlotte. She knows all about that subject. But he had folks in his church, a mentally retarded couple that wanted to be married. Her people thought it was okay, his people did not and it was some controversy and uh I referred him to the Lancaster County ARC because I knew they had some advocacy up there so it will go on, it will go on. But I do feel that these people have a right to be in the community with the proper supports and thereby things entailed because it cost money and at this point the staff, the hands on staff, that are working in most group homes are probably similar to hands on staff that are in nursing homes. They're either people that are very compassionate and interested in this type of work and want to make it a career thing or they're people that are picking up a job between jobs. They're going to school. I've seen staff in my daughter's group home, uh, sitting down with their schoolwork all spread out in front of them and really concentrating on the school work and not what they're actually supposed to be doing. And so it's not an easy thing and unless you can afford to pay people a proper wage and then demand that they stick to their job description, it's tough. It's very tough and my daughter's group home is no different from anybody else's group home. They all have a problem and management is a key factor and I am not that knowledgeable about the various vendors in my county and how there management is structured, but I'm about to learn more because I'm not very happy with things in my daughter's group home. Now things… I mean she's been in a group home for almost 35 years and I'm very thankful I do want to stress that. I'm extremely thankful that she is in a group home. Not just because of my situation but because of hers. She deserves a life. It would be very… I know so many parents that have kept their disabled person at home and yes, they've had the self-satisfaction of knowing when they get in bed at night that Jim or Suzie is over in the next room in their bed and all is fine with the world. But it's not exactly the kind of a life that any of us really want. I mean both of my sons have their own lives and do what they… they're living. They are living their life and their experiences are their experiences and I feel that Beverly has a right to a life too. She enjoys the other clients in her group home. Two of the girls she's been with for at least 20 years so she knows them very well. She's in a wonderful day program that I can't say enough about, that's staffed with people that just care and it's obvious that they care. So I'm all for the community system. I think it's wonderful and I think these folks deserve that but they deserve to have it done right and it's not going to be done right if it's not funded and for my experience, politicians are great for passing rules and amendments and so on and so forth and laws, whatever. But they're not that great about funding them. It's awfully easy to pass the law but when it comes to coming up with the money to fund it, that's another stories. I think they're scratching their heads now with some of the things that have been passed like who is going to pay. And all the talk sometimes about social security and whether that's going to be relevant 50 years from now and so forth and so on but um, the community system is a good system. If it's run right I thoroughly believe in it and I continue to advocate for it.

23:13:06:28 - 23:17:41:11

L. Charlotte, what do you think happens for Beverly if there comes a time if you're not able to give the level of oversight and supervision that you do give her today?

C. I am very worried, very worried. Not just for Beverly but for anyone in her situation because if there is no advocacy, uh, it's pretty difficult. There's an awful lot that falls through the cracks and I could sit here now and go on for a long while about personal experiences of things falling through the cracks either with Bev or with other clients that she's close to. And to me it's scary. It's really scary. I just don't know what people are thinking of or were thinking of when they decided on the community system. Were they thinking that people don't get old? I mean Pennhurst; the people that have come out of Pennhurst are old people now. They are no young people around that are on the ex Pennhurst list, that's for sure and as people age they need services, maybe some eye appointments and so… I just heard the other day that it's possible Beverly has some cataracts and we really haven't delved into it a lot at this point but I was talking to someone recently who said that they've had some experience with these folks having cataracts operations and that they've been pretty successful. And of course those operations today are so much easier than what they were many, many years ago. So that's something, that bridge I may have to cross eventually but I'm working at the moment with trying to get, uh, not trying to get Legislation passed. I guess there's enough of it passed. It's just get it implemented would be more of the thing and it's interesting because at my age I, oh, I guess several years ago when I retired from work I worked until I was 75 and I finally decided I would quit. Uh, partially to take care of my grandchildren when I don't know why I didn't think that was going to be work but it was very pleasant but anyway I thought you know I spent so many years in so many organizations and committees and this and that and the other thing and I thought you know, I think I'll just take a break because I'll, let's just see if things are going, you know, come along and so forth. Well, I have now decided that I just better get back in the works again because they need someone out there that's gonna' really tell it like it is because there's a lot to be improved in the community system. And I think that, I think that the knowledge is out there. The knowledge is there but these people have to understand that they have got to provide the funding and until legislatures become aware and they are more aware because they, many legislatures have perhaps a person in their own family that they have had to deal with or have heard about someone else dealing with and some of them are aware but there a lot of them that are not aware and they really need to be aware that without the funding this is not, it's not going to be what it should be. That's all. So I'm going to keep at it. I keep on keeping on.

23:17:42:09 - 23:22:55:01

L. And you do keep at it I think currently you're on the um the Westchester County, let me get the acronym right… MHIDD: Mental Health and Intellectual and Developmental Disabilities.

C. Correct.

L. Board.

C. I'm not on their board at the moment but I am on their quality management committee.

L. I wondered if you could tell me about that work and what you are hoping to accomplish on behalf of people with that diagnosis.

C. Yes, um, the committee deals with the quality of services that clients who are receiving services in Chester County are receiving and the quality of those services and whether the services are doing what they're supposed to be doing. We don't just deal with the intellectually disabled. We deal with the mental health community and uh we look into suicide rates and uh and as I say the mental health community has made extremely good strides in the past few years and become very, very vocal and very instrumental in getting services for the mentally ill and it's been a really wonderful thing. Uh, also the early intervention for mentally challenged folks, for the children, the intervention services have really exploded and that's a very, very keen interest in many, many areas including ARC of Chester County. I believe they run, they do, a first step program which has been in existence for quite a while but there's a group that concern me and that is the aged, uh, as I say, people that were released from Penhurst years ago are not young anymore. And there are lots of people in the community that their parents have kept them at home for many years and now can no longer take care of them and so this is a large, this, because people are living longer, uh, this is a large group of people that need advocacy and some of these people are not immune from uh Alzheimer's and that can happen to people that are mentally challenged so um this is a concern. And I think should be a concern to ARC and to other folks that are involved in advocacy; that there is a wide spectrum out there of people that are aging and uh and need funding, needs funding. You know it's interesting because in raising funds when you deal with sweet dear little early intervention people, little kids are so dear and so cute and tear at the heart strings but if you show people a room full of old people with some dementia and beards and grey hair, they're not nearly as adorable as these little cute kids. And it's tough sometimes raising funds for this part of the population but they need help too and need services. So I'm at the present time, very interested in the aging population and I try to throw in my two cents at the meetings and uh without getting personal it's… but looking at the larger picture and Chester County truly does have a wonderful bunch of people I have to say. It's my own personal, uh, comments but they've been marvelous, uh, in my experience. Dedicated, I mean I know people in Chester County in the MHIDD service that started out as support care, you know people, case managers who have risen through the ranks and who know what people are talking about because they've been there. And I know it disturbs them when there are funding cuts and so forth and so on. So I'm hoping that somehow the word can be gotten out that these people still need services.

23:22:55:29 - 23:27:07:07

L. Charlotte, you talk about wanting to, having wanted to take a break from some advocacy work but feeling like you couldn't and you are still in the game definitely first string but I wonder if you feel confident that there is an up and coming generation of professionals and parents who will pick up the gauntlet when you really do eventually decide to retire?

C. Well, all I can do is hope; all I can do is hope. Time changes, people change. I remember when I was very young and found that Beverly was mentally challenged. I remember thinking wow, you know, people are now studying this and there's more services and there's more agencies that are paying attention to this and just think probably in 25 years there just maybe there won't be any more mentally retarded people. Wow, you know. I think I was a little bit wrong. I'm sure and I don't know the statistics but I know I attended my first grand child's birth, not that I intended to, but I sort of … circumstances put me there and I was amazed, just amazed. My daughter in law was in labor and I stopped at the hospital to see how my son was doing and he said come on in mom, its ok come in. I said really? So I went in and I kind of sat in the corner and uh my daughter in law was doing very well. She was eating lollipops and crushed ice and watching Oprah and after a while a nurse would come in every so often, check her, check the monitor, the baby had a monitor on the baby's heart, check that, check everything. Everything is fine and then they came in and said we're going to speed this up a little bit, gave her a shot of something, and sure enough things speeded up and the next thing you know [someone] brushed in who turned out to be the doctor. I thought it was a high school girl. Sat down and she had an entourage with her and the next thing you know Michael was born and I was absolutely like oh! I could not believe it was just wonderful. And the technician, the technical part of it, when I thought of when I had my children, there was nothing. I mean nothing but the nurse and the doctor. No monitors, no… I mean forget it. It just, it was unbelievable so I really did think that probably today there are less people being born. The only thing that makes me think that that's not true is the drug factor. When so many people into drugs these days and abusing drugs, that I don't know about the children that are born already drug addicted and that's a horrible thing. That's another whole ballgame that I haven't been involved in but it's sad. But I think really under normal circumstances, with all the technical things they have, truly I think it's marvelous and I don't think other than what I just mentioned, I don't think there probably are as many people with intellectual disabilities that are born today with them. They seem to know when the baby is in distress and they'll call for a C-section right away if they really think there is distress there and so on and so forth. So it's, we have a wonderful world out there.

23:27:09:00 - 23:34:25:16

In your view, what are some of the biggest challenges that the system itself is facing today; the system that supports people with intellectual disabilities?

C. Well I think hiring is one thing as I say. I am more familiar with group homes than any other facet of the system and I just don't feel that they're able to hire quality people. They try but it's very difficult. Now Beverly has a wonderful doctor, a GP. He's wonderful. I mean if the group home calls up and says she's having a problem, many times he'll fit her in just to take a quick look see. She goes to a podiatrist which is wonderful. She can go to the eye doctor. Um, she just had a sinus infection recently and the doctor gave her an anti-biotic, turned out she was allergic to it and broke out in hives. So had to be seen by one of these little um clinic, medic clinic that have been opening up all around and uh, and they serviced her very well. They decided right away it was an allergic reaction to the anti-biotic and gave her a very small dose of Prednizone and some Benadryl for her hands that had lots of hives. And uh, that was great. I think the community has risen to the point where they've just been very accepting of folks. Uh the one girl in Beverly's group home goes to bingo every Friday night and just loves it and they adore her. And so to me it's the funding, it all boils down to the funding and not being able to attract people that need a living wage and it's not easy. It's not sitting down at a desk and doing some writing or filing. You're dealing with human beings. That's not only the most pleasant thing in the world. And it's tough but I think it's the same in nursing homes. I have a friend, a neighbor, who's in her eighties and fortunately she does very well but unfortunately slipped and broke her leg. And she's in, now, she was in skill nursing but now she's got to be in the uh the uh assisted living for the next couple weeks but uh it's costly her 5,000 a month to be there. Now fortunately she's got the funds to be able to do this and it's a very, very nice place but not everyone can afford something like that and it takes advocacy. It really does. It really takes advocacy. And that helps even with the need for funding, the advocacy helps. If you have someone to go in, uh, and I have a very, I hope I do. I have a very good rapport with the vendors, the agency where my daughter is. The woman who directs the agency started out as a case manager and a support person in a group home and has risen through the ranks and is now director of the division of the company that provides Beverly's group home and I have a very close relationship with her and I can understand her problems. And she knows that I can understand but I can't overlook the fact that my daughter's group home is not being managed correctly at the present time. And I don't try to avoid the situation. She knows how I feel and I've written letter after letter and they're being addressed but Rome wasn't built in a day and I do feel that they're trying to relieve the situation and try to correct the situation. This is what you have to do. You can't just go off. You've just got to work with these people and make it plain to them what the problem is and the fact that you expect to have an answer. And then one problem gets cured and everything goes very well for a while and suddenly there's another problem. And when a staff person joins the group home, comes into the group home and they're really good; you think oh wow, how long is this going to last? You just pray that it lasts as long as it possibly can but you know darn right well that if they get a better offer somewhere else, they're gone and then its start again. And that's unfortunate and that's the big problem because it's not the clients. The clients really, I mean, Beverly and her three housemates are under normal circumstances pretty happy but uh you just have to stay on top of it. And if no one's willing to do that, it's the same way of you had your mother or your aunt in a nursing home, you can't just put them in there and go out once in a blue moon. It's got to be an advocacy thing and on top of that you've got to make it plain to uh your politicians that there are people here that need to be considered and they can't be expected to make miracles, the directors of these places, and get blood out of a stone. It just doesn't happen. So I think it's going to be an eternal problem and we're never going to be done so to all of you advocates out there, don't get tired. Keep on keeping on because that's the way it's going to be. Get revved up again. Take a little vacation and get revved up because we need you, everyone. That's for sure.