Chapter 3: Graham's work on the PA DD Council

03:19:43:00 - 03:23:59:14 Lisa: I'm going to move a little forward and talk about when you started at the DD council, if that's okay?

Graham: Uh-huh.

Lisa: And in 1997 you became executive director, and is it 13 years now that you're still serving?

Graham: Almost 15.

Lisa: Almost 15, wow.

Graham: I think so.

Lisa: For folks who might be viewing our conversation who aren't familiar with the DD council I wondered if you could tell me a little bit about what the council does and why it was that you wanted to lead it's efforts?

Graham: The DD council funds some experiments in doing things in new ways, and with new approaches, and with new mind-sets. Some of it's research, some of it's demonstrations of different approaches, some of it's advocacy for the statewide adoption of some of the things we've discovered. It moves very slowly, you know, we do a 5 year plan and, we could be working on things where the idea started 10 years before that. We have 10, 15 years sort of arc of development of what we do. The planning process is slow, it's sort of -- there was a poster on my wall when I arrived that said, "Think globally, act locally." And I would add that's it's actually, "Think globally, act locally, and move glacially." But, we have a chance to do things thoughtfully over a period of time that no one else has the opportunity to do. So, if we can spend 15 years working on transportation for rural Pennsylvanians, and we did take over 15 years working on that. Our work and schools around inclusion has grown and developed and changed, but there's a consistent thread that's been there for maybe 15, 20 years that we do things. That's what our DD council does. Whenever I hear from the feds what a DD council does, I understand that we're supposed to be lobbying for the adoption of laws to make clear that the changes that are called for -- we tend not to do a lot of lobbying, we're sort of a quite, a-political body that makes a contribution in a slow and methodical way. And that really an appealed to me -- that really appealed to me to be sort of thoughtful about things. I -- from my own disability experience, I tended to think a lot, I think part of my disability is to think a lot and create these theories. It's like, you know, doing disability advocacy and being manic are very similar experiences. And, my academic background before I got into the sort of applied social science stuff was in philosophy and psychology so, you know, I have this sort of philosophical approach to learning about science, so that was very appealing. But, it's also low, low risk in that you give nice people nice sums of money to do really interesting things, and if it works we celebrate and move on to do something new, and if it doesn't work, we say, "Oh, shucks" and move on. You know, that's it. There's not a lot of down side, so it's been a very attractive job, very appropriate for me and my temperament and personality over the last 15 years.

03:23:59:27 - 03:24:47:14 Lisa: Who decides in council, or how is it decided which experiments you're going to support?

Graham: It's decided by a large group of people in a planning meeting. There's a meeting when 30 or 40 people decide what we're going to do based on an analysis of what we've done in the past, of what the needs are in the present, and what we ought be doing in the future. And, you know, it's a DD council planning meeting, and it's a lot like an elephant making love. Maybe I'm not supposed to say this.

Lisa: It's the visual that's tough for me.

Graham: Well, no, it goes on at a very high level with a lot of noise and trumpeting and it takes at least two years to see any result. That's a DD council planning meeting.

03:25:03:10 - 03:25:54:17 Graham: In my role, it's kind of interested in that I get to suggest things. I get to point out the likely outcomes of doing certain things, but the policy decision making is done by the people on the council who are 75 percent people with disabilities with and family members, and it's a wonderful model for how people with disabilities should be involved on advisory boards, and councils, and governing bodies, in that we manage to separate the executive function from the policy making function to the point where people can really blossom in their separate roles.

03:25:55:19 - 03:27:46:14 Lisa: Thank you. I think, please correct me if I'm wrong, but when you first started with the DD council, one of your first priorities was perhaps to gather information about quality assurance for folks with disabilities; would that be correct?

Graham: There was a big focus on a federal level on outcomes of DD -- of the outputs of measuring what DD councils do. And 15 years later, I'm happy to report that that debate still is continuing on pretty well the same terms. DD councils, because what we do is indirect, we do systems change, so we're not responsible for the systems that we're trying to change, I mean, we work in -- in transportation, but we don't drive the busses; we're not responsible for that. And, we work in conjunction of changing of so many other systems, from Pandout, to DPW, to local counties all across the Commonwealth, so it's very hard to measure the outcomes of DD councils because you can measure us doing our job and engaging in the process of systems change, and some where you can measure if the systems in fact changed, but the connection, other than an obscure logic model, is not easy to draw out and it's very hard to do it in a way that satisfies something like congress who wants to see, "They bought four with it" or, "They bought four houses" or, "They bought four jobs".

03:27:48:00 - 03:32:20:01 Lisa: hat I was thinking about was your pilot program with Nancy Thaler, which I believe started in 1999, where you weren't necessarily measuring the DD councils effectiveness, but rather the effectiveness of systems?

Graham: Well, this is a nice opportunity to take the learning from Head Start that says you've really got to measure what matters in peoples lives, and to take the issues from the DD council that says there's no direct linear translation between a DD council and an outcome in someone life, and I find myself in the situation within my first year of being in the DD council when the OMR pack, as it was then known, published its 5 year plan and in there was this idea that they really ought to have some way of measuring the quality of what they do. And, so, I took the opportunity to call Nancy Thaler, who was the deputy secretary at the time, and suggest that the DD council would fund the start up of doing this, if she could fund it on an on-going basis and together I ended up chairing a group of people who invented the IM4Q process, which was an interesting task, and it included everyone from representatives from all of the unions, to representatives from the ARC and P&E, and the Use-Ed, and including the famous Polly Spare. It was quite a little facilitation task to cheer that body, but we came up with IM4Q which, I think, it started out with great progress. It started off saying the system, the DD system, not the DD council system, but the state DD system, would measure what happened in people's lives in terms of, you know, were they choosing where they live? Were they choosing their own jobs? Were they choosing their house mates? Did they feel respected? Did they feel safe? Did they feel protected? Did they have the things that they wanted? Really important questions in anyone's life. Important questions in my life, and also for people with intellectual disabilities. And, so, we put together a system that interviews, now, 6 and a half thousand people a year, and has an interesting set of data around what's happening in people's lives, where their lives are at. And, that was rewarding because it didn't have all the inconsistencies and the extraneous factors that measuring the DD council had.

And, it would have been wonderful had it be integrated into a quality management system within the state DD system, within OMR or ODP, that actually said, "We're going to manage the system to maximize people's life outcomes". Which it never got to, you know, despite -- and this is not a dig at any single administration. None of the administration that this has been under have really managed to take IM4Q and say, these are the data against which we hold ourselves accountable for managing our system. They manage the system to be accountable to compliance with CMS, and quietly and comfortably collected IM4Q data in the background and didn't really put it to substantial use. So, that was actually both exciting for me to be there at the birth of that possibility, but a great disappointment that it never become the source of having a data driven system that I wanted.

03:32:20:17 - 03:33:56:08 Lisa: One of the things I wonder about that process, Graham, particularly early on, is how it is that you really do is assess people's quality of lives when you're working with a group of people who traditionally haven't been given much opportunity for choice. I think you had mentioned, at one point, when we were prepping for this interview, that people initially answered they were happy and satisfied quite often, but when you dug a little deeper you found a more, sort of nuanced truth?

Graham: Well, it seems that there's a number, and I don't know what that percentage is, although apparently 83% of all statistics are made up on the spot.

Lisa: Including that one?

Graham: Including that one, yeah. If you ask people if they're satisfied, and they don't know what their choices are, or they're scared of losing what they've already got, they will say they're satisfied and they're happy. And, so, you get very satisfied people in general regardless of their living situation, but very different numbers in terms of what they're doing, their community involvement, their choice, their control, and so you have a more nuance picture that you can get to when you look behind the numbers, but the initial satisfaction numbers are not very telling, not very informative.