Chapter 4: Self-determination and Community Supports

03:34:03:13 - 03:37:51:09 Lisa: In 1999, Pennsylvania was piloting a self-determination project for people with intellectual disabilities, and then in 2003, Kevin Casey, when he was secretary ODP, turned self-determination into policy. I think renamed Self-Directed Services, so 20 years from that initial pilot project, or more, people can choose to have self-directed services if they would like, but I'm wondering what the outcomes have been for people who participated in those services; have they been happier, more satisfied? Have you had an opportunity to measure or even consider that in council?

Graham: We haven't done it directly. Some of the 'IM4Q' information exists around there. I don't think, if you were to ask any of the national experts about self-directed services and sports, whether Pennsylvania self-determination efforts were necessarily what they could be. I don't claim to be an expert, but, I play one on tv, I don't claim to be an expert, but having been involved in doing some thinking around this and planning a conference around this, getting some national presenters in, it seems to me that in Pennsylvania, self-determination is, you get to choose for an array from a menu that is still determined by professionals in Harrisburg, and the true self-determination would take the form of saying, "If we spend $100,000 on you, then if you took that hundred thousand dollars and you and your loved ones and your circle of support or your micro board, or whatever you have surrounding you, worked out what best you would do to give you the life that you dream of with $100,000, including buying things that aren't on the menu, and are not part of DPW's programs, what would it look like?" I think that opens up the possibility of tremendous conversations around what would happen if you really had self-determination. How much people would spend. A certain amount of evidence from some of the New England states is that given that kind of freedom, people don't spend as much money as was spent by the professionals. It even opens up the possibility -- and I'll be shot for this but I'll say it -- it opens up the possibility that in a time of cost of savings and fiscal tightness, of saying, maybe you don't have a hundred thousand this year. Maybe you have $97,000 this year. But, would you rather have that to spend for yourself than to be spent by some professionals in Harrisburg. So, my first response to your question ask I don't know that what I've seen ODP do really is self-determination and that self-directed services -- whichever phrase it is that they're using to describe theirs -- has just come nowhere near the possibilities that are opened by the idea that people know better than Harrisburg what it is that it takes to run their lives.

03:38:01:21 - 03:40:17:10 Lisa: So, in given those limitations that you described in services, services being a menu rather than a pot of money that people can choose to spend truly as they wish, do you think that self-determination or self-directed services really are a viable choice for Pennsylvanians with disabilities?

Graham: I think they are, and I think they go way beyond the idea of the services that are on the menu and contain things that were in nothing to do with the menu. I think it includes things that may cost nothing, which, at the moment in the current system, we're not really allowed to choose, because they're not Medicaid approved but, you know, the DD council has been involved in systems that are things like faith community systems, or systems about recreation, or the way that their communities organize how they go about having their festivals and their celebrations. And, I think that you need to open the scope of the discussion to include all of that stuff and more to see how people would like to live their lives, and maybe they live with someone who is a friend, and is not paid. Or, maybe, you have the possibility that someone could be a family living provider, but be paid a lot more than they normally are because there a lot more challenge or demand or need. I think we haven't begun to explore the possibilities, and I think the great thing about it is that it really is a non-partisan or cross-partisan set of possibilities that appeals to people from all parts of the political spectrum. I even -- jaded as I am these days, could get very excited about doing something like that and we have put some considerable number of hundreds of thousands of dollars into our new 5-year state plan to pursue some of those possibilities.

03:40:18:16 - 03:44:57:00 Lisa: One of the projects that the DD council is supporting is perhaps finding ways to better support people with disabilities, including intellectual disabilities, to serve on boards. And, I know that you've expressed concerns that perhaps the roles assigned to self-advocates to serve on boards are not always as well defined, perhaps, as they could be. So, I'm wondering how it is that you provide supports and services in a way that takes the participation of people with disabilities on boards beyond tokenism?

Graham: Well, I think what happens at the moment is that people are 51% of the board, and 1% of what's paid attention to. I mean, it's just a huge degree of tokenism in terms of policing people with disabilities on boards, including people with intellectual disabilities and I think there's a number of problems with that. One is it's insulting to be people to be asked to be on a board, and then not listened to, or to have things talking about that your not necessarily an expert in, or have no particular genius in communicating about. One of the things that's happened to me over the years is that I've been placed in the role of being advocate of people with mental illness on various boards and committees. And, I remember one in particular where I was placed on this board, and the stuff that was being talked about was completely over my head. It was technical, detailed, it required knowledge of history, and knowledge of laws that I just didn't have and I'm a reasonably bright, reasonable articulate person, but I came away from those meetings every month feeling just stupid and humiliated and impotent, and it's my wife's job to do that, not their job to do it. And, I started complaining about this stuff because, you know, you think that it's about fixing the disabled person and training them to participate, and so much in the past as in so many areas of what we do, which we've obviously talking about here, you know, the first and easiest thought is: Find the person with the and fix them, and teach them how to do it and how to participate. And, the real problem is the host dominant culture. The real problem is the situation, not the person with the disability. And I think the problem is that boards do not know how to be boards. They do not do an adequate division of labor between policy making and executive function. And, they try to ask boards to be many experts in particular areas of disability, and then start complaining when not every person with every disability is an expert in all those things. There are huge and important questions that people with disabilities, including people with intellectual disabilities, can answer in terms of how a board rules, and I think it's up to the people who run boards so say: "We're thinking of doing X or Y. If we do X, then this happens. If we do Y, then this happens. What do you think, as a person with a disability, should be the choice?" You can phrase that in a way that almost everyone can participate meaningfully, and participate meaningfully in a way that the professional can't do -- the professional can't make a value judgement, a moral judgement, a philosophical judgement about the direction of services, and we need to run our boards so that we have the boards make those kind of policy decisions, and not the acting manager decisions that they're currently doing. But, the solution is not to fix the people with disabilities, the issue is to fix the boards. It's to fix the dominant culture. So, we just mixed together a whole bunch of my fantasies -- the stuff that I fantasize about.

03:44:56:23 - 03:46:12:28 Lisa: So, how do you fix the board? I know, for example, you're working, or the council's supporting a project with Self-advocates United as One, and Mark Freedman called Beyond Tokenism. Can you tell us a little bit about how that project is trying to bring boards up to speed?

Graham: Well, it takes a step-by-step level. You know, part of it is to say to the board "If you want to have meaningful participation of people with disabilities, include them socially at the beginning of the board meeting, and not have them sitting in the corner waiting to be the lump on the log." It means saying if your going to have materials, get it out in a way that people can understand and ,you know, we can have a great debate about linguistic accessibility for people with intellectual disabilities but put the material in somehow or another in such a way that people know what they're going to be asked to vote on, and what they're going to be asked to think about in advance. escalating to the point of are you asking the right questions? Is this is board-level policy decision, and how do you express that? What words do you use to put that in, so that people can uniquely contribute their expertise?