Alvaro Gutierrez: Hello and welcome to Project Access For All. Today, we have with us, Andy Imparato. He’s the executive director of the Association of University Centers on Disabilities, also known as AUCD. So thank you, Andy, for being with us today.

Andy Imparato: Thank you. It’s great to be here.

Alvaro Gutierrez: My pleasure, Andy. And the first question would be what can you tell us about your organization?

Andy Imparato: So we are a national network of university based centers that do research and training and leadership development and advocacy to try to improve the quality of life of children and adults with disabilities. And our network kind of has a strong emphasis on children and adults with intellectual and developmental disabilities. We have at least one university center in every state and territory, and if you add them all together and their budgets together, it’s about a $650 million network.

Alvaro Gutierrez: Oh, that is powerful. Can you tell us what are some of the biggest social problems that still facing children and adults with disabilities?

Andy Imparato: Yeah, I mean, I think on the adult side, the big problem that my former boss, Senator Harkin, was very focused on, which continues to be a very important focus for our network, is employment. You know, trying to get more people with disabilities, and especially people with significant disabilities, into the labor force, into the competitive labor force, and ultimately, into the middle class. There’s still too strong of a connection between disabilities status and poverty in the US. And that’s something that our network is concerned about and working on. And I think with children, you know, it’s getting the right services and supports to the children and the families at as early in age as possible. So having good screening, you know good early diagnosis, early intervention, you know that’s still a big issue, in particularly in the Autism world, but certainly in other disabilities. And then, another big issue that we’ve been working on is trying to help teachers use positive behavioral interventions and supports to try to manage disability related behaviors and non-disability related behaviors in the classroom, and not using things like seclusion and restraint to try to manage behavior, you know, in classroom settings for children with disability.

Alvaro Gutierrez: Can you tell us what is a developmental disability for those who don’t know?

Andy Imparato: Sure, I mean that’s a term that you know is used—there’s a lot that authorizes our network called the Developmental Disabilities Assistance and Bill of Rights Act, and the law defines what a developmental disability is. But basically, it’s a significant disability that starts before age 22. So if you’re born with your disability, or if you acquire it, you know, during your childhood or your youth, and it’s significant enough, it qualifies as a developmental disability. You can have a very significant disability that you acquire after age 22, and because you acquired after age 22, it’s not considered a developmental disability.

Alvaro Gutierrez: Now Andy, for you personally, now that we are approaching the 25th anniversary of the Americans With Disabilities Act, can you tell our listeners what does it mean to you the ADA?

Andy Imparato: Sure, so I’m a disabilities civil rights lawyer. I graduated from law school in 1990, the year that the ADA was enacted into law. And I have bipolar disorder or manic depression myself, so I have been very lucky that you know, I’ve built a career as a lawyer in this field , where I’ve been able to be open about my disability and not have it used in a way that has limited what I’ve achieved professionally. And so, for me, the ADA makes it possible for me to be proud of who I am as a lawyer with a disability. And it’s given me kind of a frame for my disability that was very important as I was kind of first coming to terms with the diagnosis. The idea for me that disability’s a natural part of the human experience and that your identity as a person with a disability should not limit what you can hope to achieve in your life. That was a powerful frame for me of thinking about disability, and I feel lucky that I was exposed to this movement right as I was dealing with a new diagnosis and the symptoms around the diagnosis.

Alvaro Gutierrez: We all know that it’s important to advocate for whatever it may be, but some people with disabilities may not be able to advocate for themselves, for any given reason. But others are able to advocate for themselves. For those who have the ability right now to advocate for themselves, but are looking for new ways of doing that, can you give us some examples of advocacy that we could all do?

Andy Imparato: You know I think one of the most important things that you can do as an advocate is speak to your audience in a way where you’re clear in what you want as your outcome and then maximizing the chance that you’re gonna get that outcome from the way that you’re speaking to the target of your advocacy. And I think that one of the challenges that we have in our field is that sometimes our advocacy, we kind of get settled on one strategy or one message, and we’re not always nimble or flexible in how we, how we deliver the message, depending on who the audience is. When I was working for Senator Harkin, we had lots of people come through our office that were looking for help with different policy issues, they had positions on pieces of legislation that we were working on. But they didn’t always tailor their message in a way where we were able to hear and act on it. And I do a lot of kind of coaching of young people with disabilities who are getting started as advocates, and one thing that I always encourage them to think about when they’re doing advocacy is your ability to influence another person depends on how that person feels about themself when they’re with you. So if you think about that when you’re talking to a congressional staff person, or somebody in the media, or an elected official, or an appointed official, part of advocacy is helping make other people feel good about themselves, so they want to listen to you, you know. And it’s kind of being respectful, both your verbal language and non-verbal language, trying to make people feel supported and loved, even if your message is not something that they’re familiar with or that initially they’re gonna agree with. It’s important to create an environment where they’re listening to you, and oftentimes, you gotta start out by being positive, and you know, appreciating something that the person has done and treating them with dignity and respect, just like you want them to treat you. And I just think sometimes as advocates, we forget to do that.

Alvaro Gutierrez: Very well said, Andy. Can you explain a little bit some of the programs or services that AUCD provides?

Andy Imparato: Sure, so again, we represent this huge network that has kind of a presence on the ground in every state and territory. So on the ground, we have interdisciplinary training programs, where we train professionals across occupational therapists, physical therapists, psychologists, pediatricians, nurses, social workers, lots of different disciplines in how to work with children with developmental disabilities and their families. And we also have family leaders who participate in that training and self-advocate leaders who participate in that training. So that’s you know something that we do every year, we have about 3000 long term trainees who get that training every year. And I think of that as very important kind of movement building activity, because all the people who get that training are learning how to be leaders, they’re learning how to work with cross or interdisciplinary teams, they’re learning about cultural and linguistic competence, they’re learning about public policy advocacy, so I think that’s a very important activity that we do, and it’s supported by the Maternal and Child Health Bureau as a way to kind of train a new generation of professionals who are going to be working with children and families. We do model program development, so in the employment area, we test out new strategies for getting people with disabilities into the labor force, and we evaluate them and to try to replicate strategies where we have good evidence that they work. We do you know testimony at the state level and the federal level around public policy issues, again trying to ground our policy positions in research and evidence, wherever we can. And we train, you know, providers who are providing services for folks with disabilities and try to kind of be a research and development arm for the disability field. So if there’s a problem somewhere that a policymaker is concerned about, we try to help them figure out a solution to the problem that’s grounded in evidence. And you know, the work is done by professors, by self-advocate leaders, family leaders, medical doctors, we have a number of developmental pediatricians in our network. So it’s kind of an interesting mix of professionals and lay advocates, working together with a commitment to the value of, you know, using research and evaluation to try to develop good policies and practices that ultimately will result in better quality of life for children and adults with disabilities.

Alvaro Gutierrez: Very interesting, and Andy, I would like to know what is the most rewarding part of your job?

Andy Imparato: So I have been the executive director of this network for about a year and a half. And as the new director, I have a lot of centers to visit, so tomorrow, I’m gonna be in Boston, visiting one of our centers there, and that will be the 40th center that I’ve visited in a year and a half. And what I’ve enjoyed the most in my job is getting out there and meeting
people and seeing the work that they’re doing on the ground in so many different parts of the country. It’s just, you know, all of our centers are different, and it’s just been fun, I get energized and inspired when I visit our centers and see the work that they’re doing on the ground. It’s nice having smart, motivated people in every state and territory, I just, I feel very blessed to be able to represent a network that has so much capacity in every state.

Alvaro Gutierrez: Andy, there has been a lot of progress with the ADA, but what is still been a big obstacle in your view, for us, all peoples of disabilities, to be fully included in society and have the same rights, the same opportunities as anybody else. What do you think is missing still?

Andy Imparato: Well, you know, the ADA is a civil rights law, and I think it sets a direction for public policy. You know when they passed the ADA, Congress established four goals for people with disabilities: equality of opportunity, full participation, independent living, and economic self-sufficiency. So as we come up on this 25th anniversary, I think it’s good to be asking the question, how are we doing as a society in achieving those goals, you know, and how can we say that the typical American with a disability has equality of opportunity, is able to participate fully in the lives of their community, is economically self-sufficient, you know. I mean these are all important questions, and I think that you know the data that we have says that for the average American with a disability, we still have a long way to go. I mean, the majority of our adult population with disabilities is not in the labor force, so they’re not working, they have no income from work. They’re not actively looking for a job, and most of them, or many of them, are participating in disability benefit programs that were designed before the ADA, and oftentimes, punish people when they earn too much money or when they save too much money. So I think we have a serious problem with the way that we support people with disabilities. We still have an expectation that people with disabilities need to live in poverty. We have an institutional bias and our Medicaid program will pay for care in a nursing home, but will have it be optional whether people get the services and supports in the community. So I would say our biggest challenge is modernizing our big disability benefit programs, so that they’re more consistent with the vision and the goals of the Americans With Disabilities Act.

Alvaro Gutierrez: Very interesting point. Now tell us, finally again, how can people reach out for your organization. What kind of information can you give us?

Andy Imparato: Sure, so we have a website for the association, which is at aucd.org. So again, AUCD is the Association of University Centers on Disabilities and our website is aucd.org. If you want to see, kind of, the university center that is based in your state or territory, there’s a map on our website, where you can click on the map and see which center or centers are serving your state. So that’s one way to get information. If you’re interested in seeing the research that’s going on in our network and tapping into that research, we have a search capacity on the website, where you can look up a topic that you’re interested in and see what kind of research has been done within our network on that topic. So we have all of our centers report into what’s called a National Information Reporting System and you can search on our website what—you know, like let’s say you’re interested in early diagnosis of Autism. You know, you can search for that and see what research has been done on our network on that, or you want to see about an innovative employment program for people who are deaf, blind, you know, you can search that and see what research has been done in our network. So it’s kind of a valuable way to, kind of, tap into the expertise of the network. So that’s one way. We have a social media presence, so you can like the Association of University Centers on Disabilities on Facebook. You can follow us on Twitter @AUCDNews, and then we do a monthly update from Washington on—I mean, not a monthly update, a weekly update from Washington, on what’s happening in the public policy arena. So you can sign up to get those weekly updates to hear about what’s happening in disability policy. We also have a video version of that update that we do on Tuesdays that we just launched this year that is done by one of our advocacy specialists, who talks about what’s happening in language. That’s accessible for, you know, a wide audience that doesn’t have a lot of policy expertise.

Alvaro Gutierrez: Wow, very powerful. Well, Andy, it has been a pleasure to have you on the show. Thanks so much for the incredible job that your organization and you are doing.

Andy Imparato: Yeah, thank you for the opportunity and thanks for your leadership in celebrating this important anniversary.

Alvaro Gutierrez: My pleasure Andy, and for listeners, we also have a social media presence, so you can like us on Facebook at Project Access For All, you can follow us on Twitter @projectaccessforall, you can visit our website www.projectaccessforall.org, and you can email us to be on the show at podcast@projectaccessforall.org. So from Alvaro, from ABS, from Project Access For All, thanks so much for listening to this show and have a wonderful day.