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Karen Hayes chapter 7


Chapter 1: Early Life
Chapter 2: Education/Living at St. Mary's School
Chapter 3: Living at Camphill at Kimberton, Early Self-Advocacy
Chapter 4: Self-Advocates Address Safety Issues, Institutions
Chapter 5: Living in the Community
Chapter 6: Work with the Arc of Chester County, Advocating to End the Use of the 'R' Word
Chapter 7: Waiting List (you are here)
Chapter 8: Reflections on Life, Work

transcript - entire interview

Karen Hayes Interview (Word)

transcript - current chapter

Chapter 7: Waiting List

18:07:27:00 - 18:08:21:27

Lisa: You talked about the subcommittee, the self-advocates subcommittee, as helping other people with disabilities and families understand policy; breaking it down, making it easier to understand.

Karen: Right.

Lisa: I'm wondering what the subcommittee thinks about the waiting list and what affect the waiting list is having?

Karen: We definitely ask them too. We definitely like, we definitely ask the legislators to stop the waiting list. We've been doing that too. We don't think, you know like I said, we're trying to do that too. We're trying to stop the waiting list but it's not happening.

Lisa: Why?

Karen: Because we don't have the money to do it. We should but they don't want to do it. I don't think people belong in the institutions but they didn't have any place to put them. That's what we're trying to do, we're trying to stop that too.

18:08:22:00 - 18:08:41:16

Lisa: So what happens to the people on the waiting list?

Karen: They don't get the services they need. I think there is even a waiting list for the ARC; for people services. They need services and they're not getting them because people don't have money and money is a big issue everywhere.

18:08:43:05 - 18:08:51:13

Lisa: So if people need services and they can't get them, what happens?

Karen: I don't know. That I don't know. That I couldn't answer.

18:08:52:15 - 18:09:37:05

Lisa: So because there's a waiting list, because there's shortages of money, does that ever cause you concern about your own future and your ability to live independently?

Karen: I don't think so. I think it's not really affecting some people but it's affecting some. Since I have waiver it's easier for me but some people don't have waiver. So a lot of people don't have waiver and every time you go to the ARC you have to pay for something now because the waivers not paying for it and the County is not paying for it. So basically you've got to pay for your own activities. You've got to pay private. So now the ARC has gone private everywhere. Everybody has to pay private when they go there.

18:09:57:05 - 18:11:20:20

Lisa: So is the subcommittee, is the ARC concerned even, that without money people with disabilities might be forced to return to institutional living?

Karen: We're hoping that's not going to happen. We're trying to not let that happen because I said to the legislators if you don't have the money, are you going to throw people back in the institution? And they said no that's not going to happen and it better not happen because I'm going to fight it. As a self-advocate and as a self-determination we will fight it. We don't want to see people back in institutions but it has happened in a couple places; that people are back in institutions because families can't support their kids especially lot of handicapped disabilities. I mean there's a lot of different ones out there. There is people with physical disabilities that can't do anything for themselves. That's the hard part. That's where they're going; institutions and I don't think that should happen. We're trying to fight it. We're definitely trying to fight people. We're trying to fight our legislators. We're trying to tell them not to stick anyone in institutions and try to get everybody out but there's a few open. There's nobody at Chester County that is actually in an institution right now. It's all statewide. I don't think we have any.

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