The Convergence of Disability Law and Policy: Core Concepts, Ethical Communities, and the Notion of Dignity

Rud Turnbull: As you know, I'm a family member. My wife Ann and I and our daughters Amy and Kate were family to Jay Turnbull. We're also professionals, so we're concerned about the parent-professional relationship. We've written a book about this and we've done a lot of research about it. Parents and professionals' relationship is based on six elements, plus a big major overriding one, and I want to tell you what they are and challenge you to think whether these elements are under are in play when you as a family member or you as a professional are working with your counterpart professional family.

The first is communication, the second is commitment, the third is competence, the fourth is advocating, the fifth is respect, and the six is equality. If those six elements are in place, then the professional relationship with a parent or the parent's relationship with the professional is going to be pretty solid.

But what is missing is trust. That is the final overarching element that holds these others together like an arch. It's the keystone in an arch. Here's trust, and here are the other elements coming out as part of the arch itself. For me, the question of trust is awfully, awfully important because no matter how much you have of commitment, competence, communication, advocacy, respect and equality in a relationship, if you don't have trust, you don't have an effective relationship, one on that you can rely on to be with you for the long term. So families and professionals and the element of trust is a concern of my mine.

A second concern has to do with how do we identify families' needs and then how do we respond to those needs in such a way that we enhance families' quality of life? Family needs assessment, family quality of life – input, output. Now that's a framework that the American Association on Intellectual and Developmental Disabilities has published in 2010. My colleagues at the University of Kansas and I are thinking about how do we take the input, the assessment, and quality of life, and connect them by using a theory of individualized supports. So you go from knowing what the needs are, supporting those needs, and getting the outcomes. AAIDD is focused on the SIS – Supports Intensity Scale, individuals and supports. One of my interests, our interests, at the University of Kansas now is taking the SIS approach, which is based on individual needs, and seeing how to apply it to respond to family needs.

The third area of present interest has to do with what is known as family support, the policy for family support. Now I've done a good deal of work in that area, but I think the thinking around it has been rather muddy and is somewhat arcane. I say the thinking has been a little bit muddy. It's not been as logical as I would want it to be. What's the history? What are the needs? What are the justifications? The purpose of the statute, how it would be carried out. What the what people will do and how we measure the outcomes. That's sort of thinking about it from a lawyer's perspective.

But I wanted to think about it from the storytelling position, from a narrative. What is the narrative that families tell us? What stories do they tell? And then how do we use that narrative, those stories, to respond to their needs to support the families in a way that is consistent with a policy framework? My colleagues in the field of social science use data. Lawyers use evidence. There's a difference between data and evidence in that a single story, a single narrative, may be all a lawyer has to use to carry his case, to carry his cause. So I'm somewhat concerned that we don't use always measurable data but, rather, that we use the narratives about families and how to support them. To increase the power of the narrative is a matter that is a technique, a methodology of science, but, for me, it is bringing the evidence, what the law uses as evidence, to bear on public policy.

It is not sufficient to think only about family support as a program. We begin, I think, instead, to think about supporting families. And that means getting away from talking about a particular program to talking about various programs, plural, that can support families. Housing, transportation, recreation, education, employment are a series of programs that are separate from a program on family support, but those programs, those separate programs, are ways of supporting families. So the question for me is how can these other programs, housing and so on, become vehicles for supporting families? Because the money is in those other programs. It's not, at this point, in a family support program. So I want to spread the notion of supporting families so it takes into account many more policy opportunities than we are thinking about today.

I also want us to think about supporting families as a private sector initiative, as something that employee assistance programs can do, that's something that you you don't have to set up a program to do it if you're a small employer. You simply do it. It's kind of like Nike - Just do it. What we have done is to think mainly about public support. I want our thinking to shift to a combination of public and private support for supporting families.

A fifth area related to families that troubles me is that families lack choices and they lack control over their lives. Oftentimes families will get involved in the developmental disabilities systems and they'll be given two choices. You can do this, you can do that. Well, what if they don't want either one of those choices? What if they want to do something else with their lives or with the money that's available to them, if any, or with the programs? It seems to me that people without disabilities have a great deal of support over their lives, more so than families who are affected by a disability. My concern, then, is to increase the self-determination of families.

This means, and here's another concern I have, how do we increase the capacity of families to support their members with disabilities? And the concern I have is how we do raise their expectations? Great Expectations is not just the name of a book by Charles Dickens. It is a mantra for families themselves and for policy makers, to raise one's expectation. To set the bar higher than it is set now is a way of forcing public policy and the private sector to respond differently to families than it does now.

My next concern about families is this matter of end of life decision making. Now, there have been some important decisions, some by the Supreme Court, some by other Courts. It's very hard at the end of life to know precisely what to do. I didn't face that issue when Jay died. He was his death was instantaneous. I didn't have to worry about his quality of life and my quality of life.

But how do we have the sensitivity to deal with families who are in this extremely difficult situation of deciding what to do with their member who has a disability, who has come to the end of life? I am cautious about absolute rules. I favor those that allow for some flexibility and for family autonomy and for principled decision making. I don't think we have dealt with this issue of end of life very effectively as a matter of policy, and it troubles me that we haven't done that yet. Despite what I've been doing in this field of end of life decision making, we haven't got it right yet. Now families are going to have to deal with these end of life issues, and it's our duty to give them some guidance and some freedom.

And finally, about families, I've been thinking about how do families understand what has happened to them? Going along nicely and all of a sudden your son has a traumatic brain injury or your son is born with a very significant physical or intellectual disability. How do we understand it?

Now this is going to sound a little bit farfetched, but here's something that I want to pursue. We understand it theologically, if we have a theology, but not all of us has a theology. Some of us understand it in a different way, and I put it to you that understanding this condition of being affected by a disability can be illuminated by reference to Greek myth, to Greek myths, the myth of Sisyphus pushing the rock up the mountain. He gets to the top, the rock rolls back down, you start all over again. The myth of the Sirens calling Hercules, come this way, come that way.

What do we do when we have choices? How do families understand their condition? I have a sense that they understand it by reference to Greek myth. Now that's pretty farfetched, but that's something that I want to explore because it's the existential issue. It's the meaning of the existence of their lives that I think theology and Greek myth help to illuminate. That's some areas around around families that I'm working on these days.