Chapter Seven: Service System and Need for Advocacy

07:53:05:00 - 07:55:43:15 Lisa: Given the current cutbacks that we're experiencing in funding, do you think that families might begin to see institutionalization as a viable alternative for their family members?

Dee: I am worried that with all the present cutbacks and the lack or the cutback in services in the community, and a long waiting list that we have, especially with the older families -- we have 600 or 700 families whose moms and dads are in their 70s and 80s, and their fear that they'll die before they have their son and daughter settled and they're unable to get anything in community, which is really becoming quite evident at this point. The system -- the capacity the system is drawing up, in the last few years, there's been no real effort to build that capacity. There's been no people leaving institutions. What's happened a lot in the last -- before that -- is when we were closing some of these institutions like Woodhaven and Embreeville, for every couple people, they were moving out of an institution, they were able to place somebody in the community in that house with them. So we were continuing to build capacity, but we haven't built capacity at all in the last several years, and as someone who plays a role in placement of folks, I can tell you there's very little left. There may be as little as 40 or 50 placements across the entire state, and we have thousands of people waiting, 600 or more over 70 or 80, their moms and dad are over 70 or 80. You know, what are the chances that this powder keg is going to blow, and where are they going to go? And we are in fact seeing today, people -- to me, as offensive as some people feel it is, I think it's a revolving door. We move out ten or 15 people, we win a little battle, and in the back door goes four or five or six more. Because those beds are hot, they're still there, and as long as those beds are there, they're going to be a threat for everyone else. And what are you going to do if you're 70 years old, or you're 75 or 80 and you come down with terminal cancer, and you're gravely ill, and you need your son and daughter to go somewhere, and there's nowhere for them to go? There is no choice, because you will need to place them in an institution, and that is the only entitlement you really have.

07:55:48:00 - 07:57:40:25 Lisa: Do you find that families today are willing to fight the fight that you and your contemporaries fought?

Dee: I think the families of today are slightly different than us, because as I said earlier, I think they've had a lot of it handed to them, they didn't have to fight for it. I mean, we hold -- many of the families from the '70s and '80s hold what they have as precious because they fought for it, and they knew they were hard-fought battles. But a lot of the families, as you move into the '80s, especially the '90s and to this present century, have not had those battles. So they think these things are entitlement, but there are really no entitlements. Either you can see the cuts in education; they are making a lot of cuts today in special education. So not only is it in the adult system, but we're seeing lots of cutbacks in the educational system for kids with disabilities. You know, in hard times, it's the person with the least power and the least voice who will suffer the most, from the disadvantaged to the elderly and people with disabilities. So it's very worrisome, and I think that the families -- we're trying very hard to inspire families, and Temple's done a whole lot with C2P2 and trying to inspire young families to become leaders. We need young leaders, people like Maureen and I and some of the other moms that work for us, Pat Armstrong and just many of the other families that we know. You know, I mean, we're not getting any younger, and we need to have some people coming up behind us who can pick up where we're going to leave off, and continue the battle, because it's not yet won.

07:57:42:10 - 08:00:42:18 Lisa: Dee, do you think that siblings play a role in this ongoing advocacy, or should play a role? I do think that siblings can play a major role in this, and that we haven't even, you know, opened that little spigot of resources. I really do feel over all of the years, at least that I've been involved, which is now 46 years because that's how old Gina is, I've never seen a real effort to engage siblings or to deal with their issues, no less see them as a part of the bigger picture, and several times, some of us have tried to hold like little conferences about siblings, and I know across the country there has been some effort, but it's minimal in comparison to what it needs to be, and we can certainly see that the siblings that are involved in Voice of the Retarded have been extremely powerful, and where their family, moms and dads are leaving off, they're picking up that gamut and moving on. And believe me, they are in the halls of Congress every day, telling those institutions, on behalf of their brothers and sisters, need to stay open to keep them safe. So we would be very remiss if we don't pick up siblings, whether it's brothers, sisters, nieces, nephews -- whoever willing to stay in a person's life, and who are willing to speak up on their behalf, if we don't take advantage of that. And frankly, I know that in the last year or so, some of us, including Temple, have had some little conferences with siblings, and when they come, it's clear that just like families felt 40 years ago, they feel very alone, and that they're very thirsty to know more, so that they can support their brothers and sisters. And I think we'd be very remiss if we don't take advantage of that opportunity, and in fact vision is about to undertake an effort to reach out to siblings across the state, to see if we can't form a group. There are, I think, some in a couple other states. So we want to do the same thing here, especially after hearing some of the siblings' stories that we heard at a recent Temple event, and how much they're interested, and knowing more, knowing more people like themselves, but also knowing more and getting more support. So Vision's going to try to at least begin that effort to reach out and get them organized, so that they can get to know each other and get to work with each other. Because we need to have people in the halls of Congress too, telling the Congressmen we don't want our brothers and sisters in institutions. We want them in the community, we want them sometimes living with us or nearby, but they have a right to live in community and we want them there.

08:00:43:00 - 08:04:16:29 Lisa: Dee, you mentioned Voice of the Retarded. Can you tell us about that group of parents and/or siblings that want something different for their child than community?

Dee: Right. You know, I know at the local level, at the state level, we certainly have seen a fair share of that with certainly one mom who was very pivotal in doing -- at least organizing this kind of an effort was Polly Spare, and Dan Turinsky, all of them who had sons and daughters who either had gone out in community and had terrible experiences, and placed their kids back in some type of residential setting, or were in there and were under their leadership and afraid because of court orders that they were going to get forced out. And they've tried really hard. A lot of them are growing older too, but they are smart enough to be gaining the support of their brothers and sisters of these guys, and clearly we have different philosophical opinions, many of us, although I honestly feel after having met 119 people, at least just from Woodhaven alone, not even the rest that I've met since, that those family members care about their sons and daughters, and they love them, and they want them to be safe. It's just philosophically, how we see someone live their life can be quite different, and I can tell you, if I did something, because a lot of professionals told me to do it 50 years ago, and now people came and told me I made all the wrong decisions, how hard it would be for me to live with that. And the truth is, there is an underbelly to our system when you come out. There are plenty of things that happened to people that shouldn't happen to them, and as someone who has fought very hard for adult protective services in this state, I can tell you we have to stop it, we have to make sure that it comes to an end as best we can. People should be able to be safe in their homes, in their beds, or not fear retaliation if they displease someone. We don't need institutions in the community, and we don't need anybody to feel wherever they are that they can't be safe and happy. So I think the efforts that happened here were pretty significant, and they still hold a major voice in talking to legislators here in this state, and after that Polly and some of these guys have done a pretty good job of being able to get people around the country who share their philosophy to join them. I do think that some of the unions in the institutions have given them money and supported them to continue what they do every day. If we could all be in the halls of Congress every day, we could change Congressmen's minds too, because I don't believe anybody has to live in an institution, it's the only place they can be. And believe me, I have moved people out of institutions who have significant disabilities, and I mean have real challenging behaviors. And you know what, most of them have fared pretty well. It isn't necessarily cheap, but it is a life, and I think that morally and ethically we owe it to them to do the same for them that we would do for ourselves.

08:04:26:04 - 08:06:11:20 Lisa: Dee, I wanted to ask you again, if there are any other pieces of legislations or any acts that are serving to help families care for their children at home.

Dee: Yes, and I think if I talk about the things that have helped families most, I have to say that I feel that Title XIX, under the Social Security Act, it provided us with community opportunity through waivers, both for people who have left institutions, as well as people who live at home, have made a major change, in being able to support families, to continue their caregiving, far past when they might have been able to without support. I know -- just on a personal basis, it has been such a blessing for us to be able to have waiver services for Gina. First of all, it provides her with something to do with her life during the day, something that she chooses to do with her life, but it also has supplied for us, on several occasions, when my husband was very sick with cancer, for me to be able to do what I needed to do for him, while she could continue doing what she needed to do for her. And there's nothing that can replace that kind of support for family members who have kids with disabilities, whether it's helping them get a job, or helping them to remain in their homes, and helping them to be able to get out and do some activities, so they learn more about community and how to be a member of community. Those waivers have been a real blessing for anyone who's had an opportunity to have them. Unfortunately there's not enough money for all the people that need them, and that's why we still have this long waiting list.

08:06:13:10 - 08:09:13:00 Lisa: Is the long waiting list, Dee, indicative of an institutional bias?

Dee: Yes, the long waiting list is definitely related to institutional bias. Tomorrow, if I couldn't take care of Gina under this same act, the Social Security Act, it allows me to place my son or daughter in an institution tomorrow, and worry no more, to place them in someone else's hands to care for them. If I were gravely ill, and I didn't have anybody else to help me, I might be forced to do that, because the entitlement is there. But there's no entitlement for someone to remain at home with their loved ones in community, and to be supported there, and to me, that's almost perverse. It actually should be reversed. The bias should be towards community. A family should be offered first, if we can give you this in community, can you keep your son and daughter at home, instead of, we can place your kid in an institution if you want. Other than that, you're entitled to nothing, unless some money happens to exist. Families -- you know, I have the greatest respect for families. I've had such wonderful opportunity. I've met thousands and thousands of families with kids with disabilities. I respect them all, whether their kids have been in institutions or whether they've been at home, but you have to say that for these families who have sacrificed for years, often at the expense sometimes of their marriage, sometimes even hopefully not at the expense of their children, but certainly at the expense of their life, many times, whether it's vacations, or it's going out for dinner, or all those little things that you give up in order to keep someone at home, and you've done it without any support. And often it can be very difficult, especially if you have sons and daughters who don't sleep at night, or require a lot of physical care. You've got to give those folks a lot of credit, and they've done it. They could have all, one and all, placed their kids in an institution. Imagine if every single person in this country who had a kid with a disability said I can't do this anymore, (inaudible) the United States of America to care for them, because there's the entitlement. It would have to place them. So I mean, to me, why do you want to spend $250,000 to place somebody in an institution when you can let them live at home with their families, often for as little as $5,000 or $10,000 -- not to pay the family, but to just give them a day program and maybe some additional opportunity through the week to do something. Why do you want to spend $250,000 to place someone when you can do the same for ten or 15 in the community? It just doesn't make any sense, and I bet if the taxpayers realized it, it wouldn't make any sense to them, either.

08:09:14:00 - 08:11:56:08 Lisa: I certainly can't imagine losing my parent and my home maybe in the same week, maybe almost overnight. I don't know if you've seen situations where adults with disabilities have lost their elderly parents and have been forced to move, and the impact that might have had on them.

Dee: I have seen a number of people whose elderly mom or dad passed away, and the next day, you know, first of all, the system is faced with what am I going to do with this person, but also just the trauma to the person, to be pulled out of their neighborhood, their home, their church, the people who know them, and to be placed somewhere else, where it is foreign to them, where you live in -- I don't care if you're in the army, or you're in a convent, or you're in a state institution. I don't mean to compare them because they're all quite different, but they're all congregant kinds of care. It's quite different to be in congregant care of any kind, than living in a real home, having your own bedroom and being able to turn on the radio or the TV and to have a real life with choice. And for you to lose all that, even if you're in a hospital, anybody who's ever been in the hospital can tell you, once you go into that kind of congregant care, they tell you when to rise and sleep and what pills you're going to take and everything else. So if you think about that, in terms of someone -- the trauma to the folks that this happens to is sometime unbearable for them, and it's also unbearable if they're left behind with brothers and sisters who have no resources for them, who work themselves every day, who want to help but don't know what to do, and they're faced with the day after mom and dad died, Mary or Joe, and don't know what to do. But the trauma to the person themselves -- I mean at least then, a person can remain, if they're lucky, with some resources to live near or with a family member who loves them. Everybody wants to be loved, everybody wants to belong. I think one of the other things that I've witnessed the most, too, is to spend a lot of time with people with disabilities, whose family either deserted them or couldn't care for them anymore, and they spent their life living in an institution. Tell you a wonderful story about a man that we moved out of Embreeville.

08:12:04:15 - 08:16:57:29 in talking about what we all want in life, to be loved, to be loved, and to belong, and to feel like we're somebody. I was moving somebody out of Emeryville, and when I was called in, I was called in at a time when they were beginning to plan for this person's moving. The gentleman was older. He was probably close to 75 or 80. He certainly had his own characteristics. He had really big ears, and his tongue used to stick out, and he came in the room first and he looked just like any other elderly old person who might, you know, be at that time in their life, and other people came in and started sitting around the table. And a young woman came in. She must have been in her 40s. She came in with all these bags in her hand, and she sat all the bags down and started taking everything out, and there was rice pudding in one and chocolate pudding in the other and milkshake in the other, and she immediately started opening all of them. And she sat right down beside him, and she started giving him some of it, and somebody said, would you like to tell everybody here at the table your story? And so the young woman began to proceed to tell us that her mother had died about a year ago, and her and her sisters were going through her mothers papers. And while they were going through the papers, they came across the name of a young man, and they were all taken aback because it was their last name. And so they asked -- I don't know if it was their father or their stepfather, who was this person, because it had their mother's name as the mother of the person, and he said, well that was your brother. And they said, what happened to him? And he said, I'm sure he's dead by now. He had mental retardation and he was placed in an institution, many, many years ago, and we've never heard anything about him, so I presume he's dead. Where other sisters didn't seem -- I mean, I think they were upset that they never knew it, but this woman what was at the table had decided she was going to find out if he was in fact dad or was he alive, and if so, she wanted to meet him. And it was at a time when Emeryville was closing, and somehow she got in touch with the state, and she found him, and she came to -- now she's telling us this story, but all this time, she's feeding him this pudding and the whip -- all this certainly stuff that if I ate wouldn't be good for me, but he was enjoying it immensely, and a milkshake. And she'd wipe his mouth every once in awhile, and she'd say, isn't he wonderful, isn't he handsome? You know, and if you looked at him with his ears sticking out and his tongue sticking out, it was like, right, you know? But she saw him as incredible, an incredible human being, and she kept saying, he's so smart, look how smart he is. You know, but she kept telling the story when she wasn't feeding him, and she went on to say that her and her sisters came out and met him, and she became particularly interested in him, and she got involved in his life, especially at the time now when he was moving. All the time she's telling this story, he laid his head on her shoulder, and I thought to myself, I think that's the most wonderful love story I ever heard. Because I thought, here's this man, he's almost 80 years old, and no one had ever loved him, and he had never belonged, and here he was at this time in his life, finding someone who thought he was great. And I thought it was just the sweetest thing that I had ever seen. And he's still around, and I moved -- he moved down there I'm going to say a good ten years ago, so he must be in his late 80s now, but he lives in a great home in a community. His sister -- one sister in particular, but his sisters all still, you know, are involved with him, and his life has changed so much. But to think that someone can live a lifetime and nobody love you -- not that people didn't care about you, but to be loved and to belong, and to be important to somebody, and for them to think you're wonderful, I mean, that's the greatest thing that can happen to any of us, and he had to wait 80 years for it, but he got it.