35th Anniversary Edition
Connecting a Community
ICI researchers and co-directors of the Global Resource Center on Inclusive Education, Brian Abery and Renáta Tichá, on the street in Prague.
Was there a pivotal moment when something you were writing for the publication moved you as a researcher?
We were doing an Impact on transition from an international perspective and I was writing an article on modernizing transition, trying to think of it as a 21st Century concept. I was talking to people here to get some ideas and one of my colleagues, the parent of a young adult at transition age, and she said that for her, it felt like her daughter had gone into a cul de sac, went around and around for three years, and then came out at the exact same point that she entered. And that got me thinking, in order to really get the concept of transition across in an issue like Impact, which is focused not just on professionals, but on families of persons with disabilities, I needed a metaphor about what transition should look like. And so, I spent more time thinking, talking with colleagues and it came to me. It shouldn’t be a cul de sac, but should be more like a round-about. You go in, you go around, but you have multiple paths you can exit based on your own passions, your own visions for the future. It helped me write the rest of that article.
And then how does that relate to the work you are doing in the field?
The transition work I’m doing now is a study with my ICI colleague Renáta Tichá, and the idea is to take a framework developed by the state of Minnesota as part of a rare collaboration among the Minnesota Department of Education, the Department of Employment and Economic Development and the Department of Human Services. Our role is to help them roll out that framework and evaluate how people respond to their transition toolkit and be able to track whether school transition services and supports are doing what they’re intended to do. Are they providing person-centered services to young adults with disabilities, especially young adults with intellectual and developmental disabilities? Are these supports leading to those young adults being able to create the lives they want to create that are consistent with their visions for the future? We want to avoid the situation we encountered recently of a young woman Renáta interviewed who said she really wanted to be a vet tech, but she really couldn’t see herself doing that work because her work-based learning experiences were limited to working in a warehouse. We want to avoid that and make sure the services we provide help young adults live the lives they want to live.
This is exactly what Impact aspires to be. Sometimes, it’s a voice for reflecting the latest research is applied to the field. But it’s also the flipside, bringing in new ideas about where we should be looking next. Have you seen both sides in your experience with the publication?
Yes, I mean, that’s why we wrote that issue on transition as an international issue. At ICI, most of us are quantoids. You know, if it moves, we measure it. If two of them move, we correlate them. Our colleagues in the Czech Republic are trained much more on qualitative research and we’ve been able to link up and create a synchrony with Jan Siska, a Fulbright scholar who was here at ICI for a year, and his colleagues, who are doing a similar project in the Czech Republic but they are doing more qualitative interviews and focus groups. It’s a different perspective and we’re learning from them and they’re learning from us.
Brian Abery during a 2016 presentation in Armenia.
Your career has come along with the development of the magazine. A lot of your work has been devoted to self-determination. Have you seen that evolve over time, and has Impact evolved with it?
When we first started working on self-determination, it was about choice. Our group, including my colleague, ICI’s John Smith, who was there from the beginning, and the group at the University of Kansas, Mike Wehmeyer and Karrie Shogren, were looking at self-determination as no more than young adults with IDD making choices. As we started studying self-determination, and more grants were awarded, we broadened the idea and found we needed a framework for self-determination. We went out and interviewed several hundred self-advocates nationally and internationally. We asked them what self-determination meant to them and came up with what we call a social-ecological framework for self-determination. It really looks at self-determination as an intersection of an individual exercising the degree of control they desire over those things in life that are important to them. It takes into account the fact that in different cultures, self-determination is exercised very differently. Not everybody wants to control everything in their life. That’s led to recent work we’re proposing on a concept called supported decision-making. Some young adults with IDD, when they get turn 18, are almost automatically placed under some kind of substitute decision-making arrangement. The assumption is they don’t have the capacity to make decisions on their own. We think there are alternatives and that guardianship should only be used as a last resort. Supported decision-making and self-determination go hand-in-hand, so we are writing grant proposals to develop ways to train people with disabilities and their family members about the benefits of support decision-making and how to effectively engage in it.
We published some very early work on self-determination in Impact in the early 1990s and the concept has evolved now to where it’s more than just being about decision making. We’re now talking about a concept that is grounded in relationships people have with other people or groups of people and with systems. It’s a much more effective way to look at self-determination, as opposed to viewing it as something that lies within the person or as a capacity that someone has.
We’re an aging society, so more families are going to be facing issues of decision-making and incapacity. With that in mind, what are some of the issues you’d like to see us tackle?
I serve as principal investigator of the National Center for College Students with Disabilities (NCCSD). One of the things I’ve learned from its director, Wendy Harbour, and others is the fact that we need to do a better job supporting students with disabilities in secondary education to prepare them for continued education after high school. In order to be employable today, most people need some postsecondary training and we haven’t done a good job preparing either young adults with disabilities or faculty members to support students with disabilities in post-secondary settings to develop the skills needed to live self-determined lives in the community.
When I first started here in 1987, the Institute was focused on intellectual disability and we’ve grown over the years and Impact has grown to be much more encompassing, bringing more individuals under that umbrella. When you think about the readership of Impact, we get calls and emails from people after an issue comes out, so it really serves as a way for the Institute to connect with the community in a way that academic journals and presentations at professional conferences don’t do. It is written for a non-academic audience and is meant to reach families and policymakers and we need to do more of that. There was an Impact on social inclusion 20-odd years ago and I wrote a little piece on tips to help your child with a disability experience social inclusion. And I got more phone calls and reaction about those 10 bullet points than about any academic publication I’ve ever written. It just shows the impact, Impact can have.