CHAPTER FIVE: SELF-DETERMINATION

20:55:44:16 - 20:57:46:16 Lisa: Roland Johnson had always asked the question, who's in charge? I'm wondering if you can remember when you first heard the words, self-determination and what that meant for you.

Debbie: Well, who's in charge when Roland, I guess when Roland kept saying who's in charge, um, and the self-determination, um, and that came out of everyday lives. Um, that concept of everyday lives, um, and, you know, and Nancy and all the ones would tell you how that came about and, you know, Roland's all over the place so yeah. Um, so that actually came out of everyday lives first and then, um, when we found out about self-determination was later on. We didn't jump on the band, Speaking For Ourselves did not jump on the bandwagon in the beginning like that. We did it a couple years later. It was still forming but, um, we got on, we were invited to a conference that, um, Tom Nerney was at and it was Carolyn and I and, you know, um, one of the self-determination conferences. Philadelphia was there, people from Phil.., was their conference, um, Carolyn and I were there, Mark was there, um, I think that's the first time I, um, met Tom Nerney, um, and the self-determination is when me and Carolyn and Mark and, uh, we came down to the self-determination conference. I forgot where, Minnesota, I believe was in Minnesota and that's where I met Tom and he met with us separately.

20:57:47:00 - 21:00:44:03 Lisa: What did Tom tell you that self-determination would do for folks?

Debbie: He had to explain it to us first. We didn't like in the beginning like when it first came out, um, like I said we didn't like jump on it. Um, but Tom asked us to meet with him in his room at this conference cause I think he wanted us to get on the bandwagon. He wanted us to maybe have a conference. We had asked him a lot of questions, um, you know, and what did self-determination would look like, um, we also needed to be educated so if we even got into it we needed to what definitely we were getting into so, you know, um, we had a short time with Tom because then he, um, said well, um, then me and Carolyn got together and said we know there's Philadelphia folks at this conference so they, we all, this was all about self-determination. Um, and so later on in that evening we all met with our fellow, our, you know, everybody that was there at Philadelphia conference, Ann Marie, there was, you know, people that were there, um, learning the same things we did so we all got together. We also asked Tom to come and we got, Tom suggested that we should get in touch, we should meet with our, our states which means, you know, Carolyn, I and Mark met with folks that showed up at this conference. Um, I think we had Tom there, I'm not sure but it was late at night. It was, I can't even begin how late we were talking, um, and I think we had a commitment then but we didn't know what, um, and me and Carolyn met with Ann Marie and whoever it was there, um, at this conference and we started talking about it, um, and what Tom mentioned and then, um, we got permission from Philadelphia and we needed to, um, form a committee, self-determination committee to start this cause we had no, yeah, but we had to get some more training. We had to get more educated. We needed to get, you know, I mean, we needed to learn from the best. How would this look for us to form a committee we had to get folks, um, more than was interested. We got a commitment from the County, um, Philadelphia County.

21:00:45:15 - 21:03:14:27 Lisa: Debbie, what they were talking about, the self-determination was really a fundamental shift in power.

Debbie: Yeah, I mean that was a big shift, um, back in those days cause we didn't have the power. Um, the thing was, the scary thing now is that what we didn't teach people would, if I know what I know now I probably would've done this a little differently because people, self-advocates never had, didn't even know what control was. They didn't even know the simple things of making decisions. Had no idea or how to and how we got them prepared for. To me if I had to look back at it, it wasn't enough, um, because self-advocates that really started the self-determination and got into it, you know, um, because they never were taught the basic in the beginning cause everything was controlled. Was either run by the agency or, you know, or they didn't have no say so. They didn't even, half of them didn't know what their budget was, didn't even know what a ISP or make decisions of what they wanted. The problem they had was people didn't know how to make decisions, the simple ones. They didn't know they could because of what we heard was if I made this decision that I wanted to do this, I'm going to get in trouble. They were all afraid to say, speak up and say what, I don't want, um, to, uh, cereal and I want pancakes because people didn't know how to make the basic decisions and knew that they could without getting in trouble and we also had to educate the professionals and that's where it got to be even though the County of Philadelphia, County was in back of us, we still needed educate them because they were in the mindset of people, wow, this was a big shift and they didn't even know how to handle it.

21:03:15:16 - 21:06:39:00 Lisa: What would you have done differently now that you've been able to look back?

Debbie: I think I would have done, uh, more prepared, uh, more, you could say more training as you can but how do you teach somebody that never was taught to make decisions on the basic? They never did it in their lifetime. How do we do that? I would've had to figure it out. I would've had to maybe start with the simple stuff maybe okay, um, if we had let's say at our meetings and we didn't and we said, uh, what do you want to eat and they said, well, what do you mean, I don't know what you're talking about. Well, just say what, cause were going to order some food. What would you like? And they would be dumbfounded because they had never been asked the simple things so when you ask somebody something simple and let them get in the habit of, you know, I did this. It's interesting that you'd say that cause I have to tell you this, Lisa. We took seven people out of Woodhaven, took them to our retreat, Fellowship farm and that's where for, Roland really liked. I didn't tell you the Fellowship Farm story but this, this. I have to tell you this. This is a clear example of what I meant by making decisions, um, we took them to the Fellowship Farm. They was just dumbfounded. They, you talking about freedom and going to see, uh, a sheep for the first time in their life and then when it came down to the food and they saw that and they didn't know how the, they didn't know what to do actually. They kept asking us can we go ahead and, and we kept saying go ahead. Oh, I'm going to get in trouble if I take this apple. I said, no, you're not. You're with us. We are not going to sit there and tell, help yourself. They didn't know how to and then when I took them to the mall. When Mark and I got a few people that we wanted to interview and take pictures of, um, when we did the, um, we had another grant, the DD Council, an institution booklet, the green, the yellow booklet. And that was just 30 stories of institutions. We did a couple of stories in the mall. Called a meeting, institution folks and we took them down at the mall where they had all the, oh my God, the first thing they did and normally we would order food, you know, but the first thing they did was order dessert, before the food. But how, but this is what we saw when we took people out of their element. You know, so

21:06:39:23 - 21:08:32:15 Lisa: So Debbie, self-determination since 2003, um, it's been renamed, self-directed services and people can choose to have self-directed services now if they like and so given your years of experience with this philosophy. What do you feel ultimately have been the outcomes for people with disabilities?

Debbie: Uh, well, I don't think it's, I think it's changed in a way that we didn't want it to change like it did. They took away a lot of things that, um, you know, how they set this up really when it, when the, um, ODP, um, took over. It wasn't called ODP then but when we really wanted to get in there, it's limited to choices now, um, people, it's not what I would hope it to be and I know it's not what Roland would of liked. Um, because a lot of people didn't have the experience of it, it didn't go statewide where the others, the other counties, uh, a few counties got the experience of what it is. When we tried to make it abroad it was really, um, very interesting. It was hard to even get it in, uh, broker services and people's waivers and, uh, when, um, when they, when they really wanted it and needed it. Um, and what it benefited, some of us and it didn't benefit everybody else.

21:08:33:16 - 21:09:37:06 Lisa: Do you see self-directed services as a way forward?

Debbie: I have no idea at this moment because we have new people in charge. Actually I have never asked Kevin [Friel] or Gary {Alexander] that question so right now I couldn't even tell you if we still have it and the concept. I know people are still doing it but the way ODP is doing things now, I know that people are struggling with it and now folks went with the agency of choice. I know some people are still dealing with Acumen and how that's working, um, but I don't know how long this is going to be funded. I don't know what Gary's planning on doing with it or Kevin at the moment.

21:09:38:00 - 21:12:00:08 Lisa: Are you still directing your services, Debbie?

Debbie: Well, I'm on the, the OBRA waiver so I'm sort of, this is strange and you got a smile on your face. I'm, this is really, getting really strange, um, put it this way, um, when I ended up leaving the self-determination I had a big meeting with Kathy Sykes and Vicki. [Stillman Toomey] I did not want to be tested again or I don't remember being tested or I would be, um, on a waiting list. What they did was because I know them very well and they know me they didn't want to see me without anything, um, so at first they gave me, um, I have support coordinated services but then, um, I found out on the computer or, um, meeting Frank, I had to give Frank some services so me and Frank signed up for the OBRA waiver so right now we're under the OBRA waiver but I have two support coordinators. So right now, um, Liberty which is my waiver and part of that had to do with the welfare cause I'm, as my brother would say, I'm in the, uh, what he told me the, oh, the, um, nurses district or something. Um, how that intertwined with that I have no idea but I just know, uh, when I had to help Frank get his waiver back the renewal was and the support coordinator really, uh, if I didn't know what I knew on how to fix this for him he probably wouldn't of had the services he has because his support coordinator missed the boat. They just, you know, um, but I'm with Liberty and they changed the waiver, um, cause I spent like three hours with her so it's gotten more complicated.