Institute on Disabilities at Temple University

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Debbie Robinson's Story

DEBBIE ROBINSON: My name is Debbie Robinson. That's what everybody calls me. But my official name, what I use on paper is just Debra--, D-E-B-R-A. But everybody calls me Debbie, so.

LAURA: That's good. And when-- how long have you been self-correcting your services?

DEBBIE ROBINSON: I guess since '88 when I came on-- when I came into Philadelphia. So I changed the whole dynamic when I came into Philly. It wasn't self-directed then. It wasn't that-- I just met with everybody in Philly, told them what I wanted, told them I wanted to interview my own agency and challenge everybody. So I guess I was the first one that had ever done that.

LAURA: And how did you come about to do that?

DEBBIE ROBINSON: How did I come about to what, to do it?

LAURA: To do that, yeah.

DEBBIE ROBINSON: Well, like I said, Laura, when I first came out here, and when I first needed-- when I first wanted to be on my own, I had to meet with the county office and meet everybody. I was new, just coming in from New York. So they told me how things worked out here.

And I told them I wasn't no slot. I wanted to interview my own agencies and challenge them. And they allowed me to do that. They said I was the first one ever to ever do that. So I interviewed three agencies before I decided to move on my own. And first, before I got into any kind of services, I chose Kencrest before I got into anything.

I interviewed the three top agencies. And I chose Kencrest. And ever since then, I've been doing that. That's how it first started. But that was way before self-determination, way before people to make their own decisions. I was the first one to ever done that.

So I would say I led the way. Philadelphia allowed me to do that. That was when Kathy Sykes was in charge and back in the day, way before I met you and Sharon, I think.

[INTERPOSING VOICES]

DEBBIE ROBINSON: Huh?

LAURA: [INAUDIBLE]. How do you like directing your own services?

DEBBIE ROBINSON: How do I like directing my own services? That was the question?

LAURA: Yeah.

DEBBIE ROBINSON: I like it. I like it. I think that way people can understand what I want and need. And you could tell people what kind of services you need. And as I said, I'm the first one that ever done that in Philadelphia history when I first came out here. That was never done before because he wasn't allowed to make that decision.

INTERVIEWER 1: So Debbie, do you see your services to costly, long-term living, correct?

DEBBIE ROBINSON: Yeah, community choice. I was under the OPA waiver. You know, Frank and I was. And we signed our own selves up on a computer when I lived on my own downtown. And Liberty came and visit us, and we got approved through the OPA waiver. That's the quickest way to get services. And then waiting for ODP to be-- for us to get services to ODP.

INTERVIEWER 1: Yeah.

[INTERPOSING VOICES]

DEBBIE ROBINSON: Yeah, the OPA waiver and the long-term care waivers were open. Frank and I signed up on a computer when I used to live on my own downtown at 158 N 23rd street.

INTERVIEWER 1: Uh-huh.

DEBBIE ROBINSON: And then Liberty came in and, because they were the only one at that time to do the OPA waiver. That's the only way you can get on and-- Liberty as I understood it then, was the only one, that's the only agency you could sign up for that waiver, was through Liberty Resources back then.

INTERVIEWER 1: So what was hard about self-directing your services?

DEBBIE ROBINSON: Well, I mean, you know, when-- well, you know, when I chose Kencrest. At first, it wasn't that hard, actually. And I had a good service coordinat-- support co-coordinator. You know, when I lived on my own, this is teaching me how to be independent.

And you know, to teach me how to do things independently. So Kencrest. Was really good to deal with. It wasn't really-- it wasn't, you know, because Kencrest. Was the one I had. And my service coordinator was really good. Jane.

Last-- was really good. So I mean, they were very helpful. The support coordinator did basically everything. Took me to doctors, took me to hook me up to the right services. So it was really good until we got into the self determination.

You know, until that came on board. You know, until that happened. Because again, I was the first one ever to interview, because I told them, I'm no slut. I was the first one ever to interview agencies.

So this was a really shock to Philadelphia. Because nobody with disabilities ever done it back then.

INTERVIEWER 1: Right.

DEBBIE ROBINSON: So.

INTERVIEWER 1: Yeah, I remember when the pilot came out.

DEBBIE ROBINSON: Yes.

INTERVIEWER 1: So-- and I guess-- my question is, like, over the years up to now, what's been hard about it?

DEBBIE ROBINSON: Well.

INTERVIEWER 1: And what's been good about it.

DEBBIE ROBINSON: Well, it's good to direct your services. What's hard about it is, now I'm under the community choice, which is difficult. In the beginning, you guys only had three choices. The insurance that you choose is involved in all this now.

And also learning that they also deal with your Trail Pass, your transportation, inside the insurance. So this whole-- it's like a whole new world. And they got service coordinators, and then I'd train as well as ODP support coordinators.

INTERVIEWER 1: So Laura, you had a question?

LAURA: Yeah. How did you [INAUDIBLE] I mean, like before you got into [INAUDIBLE] a long time older. Did you go to your support coordinator and say I want change--

DEBBIE ROBINSON: Yeah, no, you had to go through your ISPs. You know, maybe Sharon, can you-- I didn't get all of her question. Can you repeat it so I can answer clearly.

INTERVIEWER 1: Sure. I want to make sure I have it right. So Laura, were are you asking, how did she switch over?

LAURA: Yeah.

INTERVIEWER 1: Did she go through her service coordinator or support coordinator?

LAURA: Yeah.

DEBBIE ROBINSON: What-- you mean to the self determination?

LAURA: Yeah.

INTERVIEWER 1: No, from, yes, from self-determination. And so now you're doing participant directive services through [INAUDIBLE] Town living, right?

DEBBIE ROBINSON: Well, that happened when it first came out. If-- I don't know if you all know the history. When it first came out, [INAUDIBLE] Philadelphia was one of the pilot projects. And we went-- me and Carolyn and speaking for ourself, went to a conference.

I don't remember where. And a lot of our Philadelphia folk-- it was a self-determination conference, to learn about it. To know what was it all about. And a lot of the Philadelphia folks got that was there as well, [INAUDIBLE] and a lot of people.

And me, Carolyn and Mark and members of Speaking for Ourself was there. And we hooked up with our guys at the conference. We-- the Philadelphia guys that was at this conference. Ann Marie wanted to meet with all of us that was from Philadelphia.

And they said that they wanted to have a-- since Philadelphia would be one of them, we ended up having a self-determination committee. That me and Carolyn was running. Me and Carolyn was co-chairs. So when we went back, we had, you know, I mean, after-- we were talking about it till I don't know what time. To maybe 1 or 2 o'clock in the morning.

Because you know, to do this. Because we were-- me and Carolyn wanted to try this. So we was trying to get everybody else on board, I believe. And then, you know, from Philadelphia. That was there at this conference.

INTERVIEWER 2: Right.

DEBBIE ROBINSON: And Ree and lot of other people.

INTERVIEWER 2: Yeah.

DEBBIE ROBINSON: And [INAUDIBLE].

INTERVIEWER 2: Yeah. was--

DEBBIE ROBINSON: I don't remember everybody.

INTERVIEWER 2: It was many, many years ago.

DEBBIE ROBINSON: Yes, so you go--

INTERVIEWER 2: [INAUDIBLE] had gray hair then.

DEBBIE ROBINSON: Exactly, exactly. So me and Carolyn-- if you remember, Sharon, we were the co-chairs.

INTERVIEWER 1: Uh-huh.

DEBBIE ROBINSON: And we were supposed-- it was a pilot project. And we was only supposed to get 30 participants.

INTERVIEWER 1: Right. And the pilot project lasts for about 12, 15 years, if I remember correctly.

DEBBIE ROBINSON: Yeah.

INTERVIEWER 1: So, doing self-direction-- so doing self-direction now, up to this day, what's easy about it now?

DEBBIE ROBINSON: Well, what's easy about is that more people know about it than before.

INTERVIEWER 1: OK.

DEBBIE ROBINSON: You know, if you remember, it wasn't that-- either that popular or we just didn't get on. People were struggling, and a lot of people just were scared of it. The unknown. We had to do an awful lot of training on it. We-- Caroline also, to your--

Caroline Morgan actually was the first one, when we wanted to pick somebody, Caroline led the way. She was the first one, once we got ourselves set up and everything. She was the first one to try it. And you know, number one.

And because-- the first one. Because we had to get 29 more people. But Carolyn stepped up to the plate and say, she wanted to be the first one to try it. [INAUDIBLE] So Carolyn was the first one out of the committee to try self determination.

INTERVIEWER 1: OK. So and what we're calling now self direction.

DEBBIE ROBINSON: Self direction, yes.

INTERVIEWER 1: [INAUDIBLE] direction, right?

DEBBIE ROBINSON: Yes.

INTERVIEWER 1: So--

DEBBIE ROBINSON: Yes.

INTERVIEWER 1: What were some of the challenges? Was it like finding staff? Did the people understand?

DEBBIE ROBINSON: Getting people to understand it. And we still was learning ourselves how this was going to work. You know, we was learning as we go along. There were some bumps in the road. You know, and letting folks know you could pick an orange or a apple.

It was making decisions, which people with disabilities at that time-- you know, everybody was making decisions for them. To change that model, we had to come up with some training, a lot of training to-- and then folks learned how to make decisions.

And also getting folks involved. And families. Getting circles of support. And getting them to make decisions of who they wanted to be involved in their circle of support.

INTERVIEWER 1: OK. So where did--

DEBBIE ROBINSON: Support broken and stuff.

INTERVIEWER 1: So let's come up to today. So what's easy about it today?

DEBBIE ROBINSON: Well, it's more brought up. People are going-- are doing it in different ways and fashions. You know, there is still, you know-- more people are doing it now.

INTERVIEWER 1: Uh-huh.

DEBBIE ROBINSON: You know. And things like that. So it's widely spread. And people are making decisions. Good and bad. Well, I would say good and bad decisions.

INTERVIEWER 1: Yeah, so, of course, everyone has the right to make a mistake.

DEBBIE ROBINSON: Exactly.

INTERVIEWER 1: You think?

DEBBIE ROBINSON: Yes. Years ago you wasn't allowed to make mistakes. We would get, like, hung. I mean, not literally. But people--

INTERVIEWER 1: Yeah.

DEBBIE ROBINSON: They get upset with us if we made a mistake. Like I wasn't allowed to.

INTERVIEWER 1: So do you want to talk a little bit about staff?

DEBBIE ROBINSON: Well, staff-- I would-- now that's a different one. Now this is different. I should have gone back some. Because actually, this goes back with Steve Dorsey, who decided-- was the first one that, if I remember right, he was the first one.

And we-- I had to put this in the waivers. And he challenged us, because he wanted to hire his mom. And that was a big issue for us. We said anybody. But Steve was the first one, actually, to hire a family member, his mom.

Because he came out, as you know, his mom was living with him. But we never thought of that, And Steve wanted to have-- you know. And we-- and that was a challenge. That was an easy thing. When we said hire your own-- we said staff.

We didn't say-- family members was a different-- you know, oh, wow. That was a whole different discussion then. We battled with that. I mean, we supported Steve. We-- that's what he wanted. We took it to the hill.

What's wrong hiring your family members? Why is that? We challenged the Pennsylvania. We challenged Philadelphia. We challenged the county. We challenged Delaware, why he couldn't hire his-- you know, they came up with all kinds of stuff.

But he was the first one to hire his mom. And we said, wow, if he can hire his mom, well, we could hire our family member. Why not?

INTERVIEWER 2: Yeah.

INTERVIEWER 1: Laura, you have a question?

INTERVIEWER 2: OK.

LAURA: So, I think it's wonderful that you can hire your family. [INAUDIBLE]

INTERVIEWER 1: Well--

LAURA: Back then.

DEBBIE ROBINSON: Yeah, Steve broke the mold on that one. He was the first one to ever do that. And then we followed suit. Yeah. It wasn't easy.

[INAUDIBLE]


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This project is supported by a grant from the Pennsylvania Developmental Disabilities Council; in part by grant 1901PASCDD-02, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.





Institute on Disabilities at Temple University, College of Education and Human Development
University Center for Excellence in Developmental Disabilities Education, Research and Service