Executive Director of The Association of University Centers on Disabilities (AUCD).
January 8, 2019 - 2:00pm to 3:00pm

Joyce welcomes Andy Imparato, executive director of The Association of University Centers on Disabilities (AUCD). AUCD is a membership organization that supports and promotes a national network of university-based interdisciplinary programs. Members consist of University Centers for Excellence in Developmental Disabilities, Leadership Education in Neurodevelopmental Disabilities (LEND) Programs, and Intellectual and Developmental Disability Research Centers (IDDRC). These programs serve and are in every U.S. state and territory and are all part of universities or medical centers. They serve as a bridge between the university and the community, bringing together the resources of both to achieve meaningful change. Mr. Imparato will discuss the mission of the organization in-depth.

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Transcript

BENDER CONSULTING SERVICES

JANUARY 8, 2019

2:00 P.M. ET

DISABILITY MATTERS

 

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 >> Welcome to "Disability Matters" with your host Joyce Bender.  All comments, views and opinions expressed on the show are solely those of the host, guest and callers.  For more information about our network and to check additional show hosts and topics of interest, please visit VoiceAmericaVariety.com.  Now the host of "Disability Matters,"  here is Joyce Bender.

>> JOYCE BENDER:  Happy New Year, everyone!  I hope you had a great holiday and especially, you know what, thank you for making 2018 so special.  I really can't thank you enough.  Hey, Ireland, you are back in first place!

Thank you so much for following the show.  We have 17 countries and Ireland, I don't know what's going on there, but these people are awesome disability rights advocates, so thank you so much.

And a special shout out to Yoshiko Dart. I'm starting here with a shout out to Yoshiko Dart as everyone knows they hear it often every show, why?  Because I want to keep the spirit of Justin Dart alive.  When you go to people in general and say, hey, you know, do you know who Justin Dart is, and they don't.

That's why we have got to do more.  I don't know what we can do, but we have got to do more to have our own history out there.  And thank you Highmark for being the lead sponsor of this show three years, Wow!  And AudioEye.  AudioEye, thank you so much, Todd Bank, I love you, and thank you for also being a sponsor of the show!  So can't think of a better way to start out the year than with Andy Imparato.  I know you know, anyone here listening with a disability leader, I know you know who this great man. And guess what?  I have known him since ‑‑ I was thinking about this before the show, since I think 1997 because I was on the president's committee on the employment of people with disabilities with Andy, and Andy can't remember were you with EEOC?  Who were you with?

>> ANDY IMPARATO:  Yes, I think when we met, I was working for Paul's Miller at the Equal Employment Opportunity Commission.

>> JOYCE BENDER:  Okay.  So that shows you how long ago is it is, and Andy is a treasured friend.  You know, I'm just so blessed to know him and I will be honest with you, he is more well-known than I will ever be, and he has done so much for people with disabilities.  I'm so thrilled to have you, Andy, and you are now the CEO of AUCD, the Association of University Centers on Disabilities, but before we seen start that, Andy, did you ever think you would become so well known as a disability leader internationally, not just here in the United States?

>> ANDY IMPARATO:  Well, Joyce, you are very kind, and the feeling is mutual.  I really cherish our friendship and admire you and your leadership that I have been able to watch up close now for over 20 years.  You know, I think you and I both are lucky, Joyce, that we came upon the disability movement at a time where there was so much change happening, and if you take the long view and you look at all of human history, you know, this period when we have been working in the movement has been a period of dramatic change not just in the United States, but globally.

And I think that people that have played leadership roles in the United States have been given a global platform.  Joyce, I know you do a lot of trips for the State Department, but people all over the world are hungry to learn from the U.S. experience because in 1990 when we passed the A.D.A., ahead of the curve, so now we have more experience with disability as a civil rights issue and trying to figure out what that means in the workplace in transportation and housing and education and all of the different areas.

We have positioned ourselves as a global leader and we continue to be a resource for the rest of the world on these issues.

>> JOYCE BENDER:  Yes, but you are a disability leader, prominent disability leader.  I bet you didn't think that was going to happen when you first realized you were living with by polar disorder, just as I did not when I had ‑‑ I was going to say just as I did not when I had that seizure at a movie theater.

>> ANDY IMPARATO:  I think that's exactly right, Joyce, when I was in law school, I knew I wanted to do social justice work.  I knew I wanted to use my law degree to try to make a difference, and my first episode of depression was during my last semester of law school, and it took me about a year after I graduated to realize that, well, now I have an insight into a population that experiences a lot of inequality and inequity, and I can use my personal experience to try to make a difference with that population, but, you know, you start out as a lawyer working with one client, working with one organization, I certainly did not think that my career would take me to Washington and having the opportunity to work with Senator Harkin and other opportunities I have had, and it's been a wonderful experience for me to be part of this movement.

>> JOYCE BENDER:  And before we talk about AUCD, when I talk about Andy and him being so involved for years as a leader in the disability community, keep in mind that and Andy Imparato was the CEO of AAPD during the formative and first historic years of it being built, and I'm one of the lucky ones, but Andy changed the bylaws so that a business person could be on the board.

>> ANDY IMPARATO:  Well, we had a great time, Joyce, trying to build AAPD and it's still a great organization.  I appreciate how long you have hung in there on the board.

>> JOYCE BENDER:  Yes, well, as I said, so much a part of you, Andy, but okay.  How about if you explain to our listeners what the Association of University Centers on Disabilities is, which Andy leads as CEO.

>> ANDY IMPARATO:  Sure.  Well, Joyce, we are a federally funded network of centers that are connected to universities that are really about improving the quality of life of children and adults with disabilities.  We have core funding to support children and adults with intellectual and developmental disabilities including things like interdisciplinary training, research, advocacy, leadership development, disseminating knowledge, so, you know, classroom teachers, clinicians, other people know what evidence‑based practices are that are going to get the best outcomes for folks with disabilities.  So the core funding is around intellectual and developmental disabilities and then over time many of our centers have gone broader and are really working with the full cross disability population.

>> JOYCE BENDER:  And, Andy, for someone listening to the show, if they would like to make a donation to AUCD, how do they do that?

>> ANDY IMPARATO:  Our website is AUCD.org and there is a donate box on the upper right‑hand corner.  One of the things that we raise money for around the holidays was something that's called our Dream Fund which stands for Disability Rights Education and Advocacy Mobilization, but it's really a set of money that we have to bring self‑advocates with disabilities and family leaders to Washington to participate in hearings and meetings and events to advocate on behalf of people with disabilities.

So that's something that people can contribute to year‑round and if you click on the donate button, it shows you house to do that.

>> JOYCE BENDER:  Well, I will be challenging my listeners all year about all of this different disability groups that you can support because, you know, we can't, we can't all be sitting on the sidelines saying we need this, we need that.  This is so important, oh, that's great AUCD is doing that.  Guess what?  It takes money.  It takes resources to do all of this.  So is it AUC.org, is that what you said?

>> ANDY IMPARATO:  Yes.

>> JOYCE BENDER:  AUCD.org.  You can go make a donation today.  There are actually 67 universities in your membership network which is amazing that are university centers for excellence in developmental disabilities.  Now, here is what I was wondering, how does that happen?  Like how do you, how are you designated as a university center for excellence in developmental disabilities?

>> ANDY IMPARATO:  Yes, so the federal agency that oversees those programs, Joyce, is the Administration on Intellectual and Developmental Disabilities, which is part of what is called the Administration for Community Living.  You may remember, Joyce, during the Obama Administration, they combined the Administrations for People with Intellectual Disabilities with the Administration on Aging and created a new Administration for Community Living, and then independent living was put in there and assistive technology and the National Institute on Disability, Independent Living and Rehabilitation Research.  So it's an interesting mix of programs and services within the Department of Health and Human Services.

But AIDD, the agency that oversees us, they are the ones that have the power to designate AUCD, so we had expansion in our network over ten years ago where we got AUCD in states or areas where we didn't have them and we are now in every state and territory t so the way you become a AUCD is by being designated as a AUCD by the federal agency that oversees our program.

>> JOYCE BENDER:  Wow!  Are they all similar or do they have all different programs?

>> ANDY IMPARATO:  It's interesting, Joyce, I think there is a lot of diversity as you travel across our network.  Some of it has to do with kind of when the center was created and where it's housed within its university.  So some of our older centers tend to be more clinical.  They tend to be more medical.  A lot of them are housed within departments of pediatrics even though they have a life span mission.  They kind of started out focused on children and many of them are still housed within the Department of Pediatrics.

A lot of the newer centers, it's much broader where they are housed, like the center in Pennsylvania at Temple, as you know, Joyce, the Institute on Disabilities at Temple is housed in the Department of Education at Temple, and obviously in that setting it has kind of a different set of priorities.  It's not as clinically focused.  It's more community focused, so they do vary a lot.  And really part of what they are supposed to be doing is looking at the needs in their states and trying to develop programming that's relevant for their state.  So the center in Montana, for example, runs a research and training center on rural disability issues because those are the issues they are dealing with in Montana.

So there is a lot of variety across the network which I think is a real strength of the network.

>> JOYCE BENDER:  Now, that rural disabilities you were just talking about, is that for children or is that for adults?  What is that for?

>> ANDY IMPARATO:  That's a life span center funded by the National Institute on Disability and Independent Living Research and it's looking across the board at what are some issues that people with disabilities face in rural areas.  One of the biggest issues is transportation.  What are the solutions, you know, that can be developed in rural areas?  They have done a lot of work around public health in rural areas, how to get people to be more active, and they use technology to do it.  It's kind of an interesting center.  They have got a lot of wearable technologies that they are using to study whether makes people more active in rural settings.

>> JOYCE BENDER:  I will tell you what, that is such an issue for employment, the rural areas, transportation.  So, you know, that's so good that they are looking at that.  Of course, we need to do a lot in that area, but when you mention that there is such a need for what they are doing in Montana, that is really awesome that they are doing that.  And Andy, I want to tell you, you know, in the epilepsy world, there is this differentiation that I don't know should exist maybe when people talk about developmental disabilities versus intellectual disabilities, because, of course, if you are born with epilepsy, you can have it be a developmental disability.

You, how do you define it?

>> ANDY IMPARATO:  So this is defined in our federal authorizing legislation and Developmental Disabilities Assistance and Bill of Rights Act, the basis of a developmental disability is that the disability kicks in at birth or before age 22, and it affects enough different areas of your life that it counts as a significant enough disability that it is considered developmental.  So absolutely people who are born or have childhood onset epilepsy could qualify as people with developmental disabilities.

It's a pretty diverse population.  Blind folks, folks with cerebral palsy, a variety of intellectual disabilities, but there are a number of developmental disabilities as you know, Joyce, that don't necessarily affect the person's ability to learn and their cognitive skills and they still count as developmental disabilities if they affect their ability to move, to see, you know, other major life areas.  So it's just, it's a category of severity of disability that also has to kick in either at birth or before you turn age 22.  Those are ‑‑ that's the combination that gets counted as a developmental disability.

>> JOYCE BENDER:  Would deaf be included in that?

>> ANDY IMPARATO:  Well, there are a lot of deaf people who have other disabilities that collectively would count as a developmental disability.  There are a lot of autistic people who are also deaf.  They definitely count.  If the person was deaf and otherwise, you know, cognitively and otherwise didn't have any other impairments, because it's only affecting one area, it's typically not going to count as a developmental disability.

>> JOYCE BENDER:  So, and why I'm asking you this is when you talk to people about, you know, developmental disability, DDI, whatever it is, they always think just intellectual disability or, yes, some type of intellectual disability.  I don't know if you have noticed that, but even here in Pennsylvania when you talk about it, that is what people, you know, they don't think of someone with cerebral palsy and maybe even autism, whatever, I don't know why that is, but you can define what intellectual disability is for our listeners.

>> ANDY IMPARATO:  Well, again, the intellectual disability concept is something that, you know, is defined in a variety of different federal context, but the basic idea, again, is that it's a disability that affects your cognitive ability.  It can affect your ability to manage your finances, it can affect how you interact with other folks; how you access education.  There used to be a stronger emphasis on IQ.  I think a lot of people are questioning some of the validity of IQ tests so people are using other ways of determining it, but as you know, Joyce, there are a lot of folks who the disability affects their ability to get educated and then can affect the ability to get a job or live independently and exercise self‑determination.

So what a lot of our centers are focused on is maximizing people's self‑determination, helping them to develop the ability to communicate their wishes and have a sense of agency and a sense of possibility of what they can do with their lives including competitive integrative employment.

>> JOYCE BENDER:  Yes, I think it's so great that you do that, I do, because something that I hope the day will come that we don't have is sub minimum pay.  I mean, it's just so terrible because the employment rate for people with disabilities as you know, is not good.  Hopefully we will get somewhere before the 30th anniversary which on the other hand is only a year away, 30th anniversary of the Americans with Disabilities Act.  But for people with intellectual disabilities, everyone knows I own Bender Consulting Services so what do I do for a living?  I help people with disabilities get employment like a search process for corporations and federal agencies in competitive areas like IT, finance, accounting, and when people are referred to me with an intellectual disability, now, I have been successful at Highmark they have a mail room print shop, and I have been successful getting someone a job eight years ago with Down's Syndrome who has been promoted since then and it's fabulous.

He has quality of life now, but it is so hard when the person has an intellectual disability.  Is this something, Andy, that you are focusing on at AUCD or are there other programs that specifically focus on this?

>> ANDY IMPARATO:  Yes, I mean, this is a big part of what our centers do around the country, and what we advocate for in Washington.  As you know, Joyce, there is an employment first movement around the country that's really trying to raise the expectations of what's possible for people with intellectual disabilities.  There is a project that plays out in multiple states called project search which started out at Cincinnati Children's Hospital which is creating competitive and integrated employment internships started out in hospital settings and they have branched out to other settings.

This is something that our centers are trying to develop the programs and to help prepare people for employment and then help people have success in competitive integrative employment in the area that fits their interest, you know, historically, people with intellectual disabilities have been kind of channeled into certain areas that people thought would be jobs that they could do, and I think what we are finding is people with intellectual disabilities can be successful as lobbyists.

They can be successful as models, as actors, there is a lot of different roles that people can play including roles that maybe weren't traditionally thought of as roles where they would have success.

>> JOYCE BENDER:  Right, like this job Justin has is using technology and as I said, he has been promoted and when I tell people, they are like so shocked, can't believe he has this job.  You know, I really think that's great that you are doing that.  I think that's so important.  So if you are listening to the show, and you have a child with an intellectual disability or you have a friend or a family member or you are, once again, AUCD.org.  Make a donation to them.

>> ANDY IMPARATO:  One thing that we do that I think might be of interest to your listeners is we have a weekly YouTube series called Tuesdays with Liz, where Liz Weintraub who is part of our policy staff and is a woman with an intellectual disability interviews people that are doing work in the policy area and has them describe what they are doing and why it matters in a way that's accessible for people that aren't policy professionals, and we are finding that there is a good international audience for what she is doing like there is for your radio show, Joyce.  So I would point people to that.  They can find that on YouTube or they can find it through our website, but it's called Tuesdays with Liz.

>> JOYCE BENDER:  And it's fantastic.  She is awesome.  I hope that you will go listen to that, but why I'm telling you all of that, over these 20 years, I have more people, parents of children with intellectual disabilities that have called me, can you help? Can you find a job?  What's going on?  What can be done?  And that's why I wanted to make sure you understand that that is AUCD.

I want you to tell everyone you know about that because as I said, from an employment standpoint, I hear about this so much, what are they going to do, what is going to happen, what about when I get older, can they do more than just work you know, in this sheltered workshop, which absolutely, shouldn't be doing that anyway, but I just want to make sure you know AUCD and go listen to that show.

And, Andy, I want to commend you again because I think that's so awesome that you are doing that at AUCD.

>> ANDY IMPARATO:  Thank you, Joyce.

>> JOYCE BENDER:  Okay.  You know, every half hour we have our news break called advocacy matters where we are getting our listeners an update on the news, what's going on in the world of advocacy for people with disabilities with Peri Jude Radecic from the Pennsylvania Disability Rights Network.  Peri, welcome to the show.

>> Thank you and Happy New Year, Andy, Happy New Year, it's great to have Andy on the show, AUCD and the network of AUCDs across the country are great to work with.  We have a great relationship with Temple University so a tip of the hat to Andy and his network of university centers on excellence in developmental disabilities.  It's, under great partners and they do a great job.  So thanks, Andy, for all of your work.

>> ANDY IMPARATO:  Thank you, Peri.  PERI JUDE RADECIC I want to talk about the partial federal government shutdown, and the impacts this has, which I think is a direct impact on the lives of people with disabilities.  In particular, we need to understand that the Equal Employment Opportunity Commission is closed, housing and urban development is closed and soon states will start running out of food stamp support.  Now, this is a partial shutdown.  Organizations like AUCD and disability rights Pennsylvania are open.  Why?  Because our federal funding coming from the department of Health and Human Services.  That appropriations bill passed Congress and was signed by president Trump in September of 2018.  So we are not caught up in this partial government shutdown.  Our offices across the country are open and we are receiving federal funding to do intake and to do the work we have always done.

So we are open.  Our doors are open.  Our intake is open, and our work continues.  But if you are a person with a disability who visits the Equal Employment Opportunity Commission or housing and urban development to file complaints of discrimination, you are greeted with a message that these offices are closed due to the partial government shutdown.  At the Equal Employment Opportunity Commission, you are told that their toll free hot line and ASL video phone are not available and that all EEOC digital portals are closed.

In fact, if you try to navigate your way through the EEOC website, you will find that the only way to file a complaint is to download the complaint form, fill it out, and mail it in, drop it off, or fax it to an EEOC office closest to you.  So you cannot call them.  You cannot use the American Sign Language video phones.  You cannot call them.  And you cannot use an online form to file your complaint.

And housing and urban development, their offices are closed and their website is not being updated, however, unlike the Equal Employment Opportunity Commission, you can still use their fair housing complaint form on line.  So even though HUD has closed, they have not closed that portal at this time.  So, Joyce, advocacy matters.  It's important that people know that there are statute of limitations.  And if you think you have a complaint of employment or housing discrimination, you still have to file your complaint as soon as possible.

Don't wait.  This partial federal government shutdown and the closure of these government offices, is it does not hold the statute of limitation.  I know that's legalese, but that means that you have so many days.  Often times it's 180 or 300 days to file your complaint.  It doesn't stop those 180 or 300 days from ticking.  You still have to file your complaint on time.  So there are ways to do that.  We will have information on our website that gives you the links and shows you how to do that, so visit DisabilityRightsPA.org and we will have information up on our website by the end of the day that shows you how you can still file your complaint.  Remember advocacy matters. 

The closure of government offices does not hold the statute of limitations.  There are still ways to file your complaint and we ask you to do that if you feel you have a complaint of discrimination, so thanks, Joyce.

>> JOYCE BENDER:  Peri, could you give them your website one more time? 

>> PERI JUDE RADECIC:  Yes, it's DisabilityRightsPA.org.

>> JOYCE BENDER:  And Peri, I look so forward to you being on all of these shows this year, you just bring us such great news.  Thank you so much.

>> PERI JUDE RADECIC:  Thanks, Joyce, and thanks, Andy for your work.

>> JOYCE BENDER:  Andy, we started this a year ago because we wanted to keep our listeners sort of like a CNN break, we wanted them to know what's going on and keep them in the know and Peri does that for us so I'm happy to have her doing is that.  Did you have any comment you wanted to make, Andy, about the partial shutdown?

>> ANDY IMPARATO:  I agree with her, the longer the shutdown goes on, the more extreme the consequences are going to be for real people.  It affects food stamps, it affects a lot of different things that people rely on to live.  So I strongly encourage folks to reach out to their members of Congress regardless of party and ask them to do whatever they need to do to reopen the government and work out whatever the differences are that are keeping the government from opening.

>> JOYCE BENDER:  I do too because as Andy just said, there will be dire consequences in different areas for people with disabilities, people disenfranchised, so you have got to speak up.  I have told you on every show, you have got to speak up.  Well, Andy, I was absolutely shocked when I read the white paper from the Ruderman Foundation on the ivy league universities that are failing students with mental health issues.

I had no idea that was going on, such as the involuntary dismissal of students.  And I know that you have been very involved with j Ruderman and certain aware of this with your own mental health issue, so could you talk about that for a minute for our listeners?

>> ANDY IMPARATO:  Yes, and I think the reason they focus on ivy league institutions, Joyce, is because those institutions tend to have a lot of resources, and so they were looking at a resource rich environment and saying even in these environments under not prioritizing providing the kinds of services and support that students who are dealing in many cases with a new mental health diagnosis are going to need to be able to manage that successfully and stay in school and complete their degrees.

I think one of the challenges we have, Joyce, is there is a tendency in a lot of institutions of higher education, to assume that after a student has a significant mental health issue, that the best thing to do is to get them out of the campus, have them go deal with their mental health issue, and then come back after they have dealt with it.

And the reality is that removing them from the campus may in many cases make the mental health issue worse, and it's often hard for students that are dealing with a first episode of expression or anxiety or whatever the condition may be to get quality mental healthcare on the campus so that they can get a good diagnosis and figure out the best, you know, option to manage the symptoms connected to that diagnosis.

And, you know, universities compete with each other on how good their food is, own their athletics, on their academics, all of these different ways, but what we are not seeing is universities bragging about how good their mental health services are.  And in general, Joyce, we don't see universities bragging about how good their services for students with disabilities at large are.  I have visited a lot of elite institutions of higher Ed with both of my sons and I always ask the question what's it like for students with disabilities on this campus? And the variety of answers I got from institutions that had very large endowments was really smoking.

I will never forget going to Williams college with my son Garrett, and it was an under grad who was giving the tour, and he said if I were in a wheelchair, I would not come here.  And then we went to Amherst which was kind of the same school in terms of resources and they had a history of Amherst kind of splitting off from Williams, but the answer I got at Amherst was completely different, much more positive.

So one of the things that needs to happen is the leaders in these leading institutions of higher Ed need to decide that they need to be the best in the world on services for students with mental health or physical disabilities just like they are trying to be the best in the world in all of these other areas.

>> JOYCE BENDER:  Yes, but I mean, I can't even ‑‑ this is unbelievable that you would go to a ‑‑ what is the basis, why are they allowed to do that?  Why are they allowed to say, okay, leave campus, you know, go away for a while, and come back when you are better?

>> ANDY IMPARATO:  I mean, I think some of it is driven by lawyers who are worried about liability.  They don't want folks to commit suicide on campus.  They don't want students with mental illness to be disruptive to other students.  You can imagine all of the arguments that lawyers make for why it's the best course to have the student get removed until they have dealt with their mental health issues, but one of the things that allows that to happen is students don't know their rights, patients don't know the rights of their children with disabilities while they are on a college campus, so students are dealing with a very challenging new diagnosis and set of symptoms, and the university is telling them this is in your best interest to leave, and they don't know any better than to believe that.

I feel like part of what we have to do is educate folks, what are their rights and what are the best practices when you are dealing with a new diagnosis.  I remember when I had my first episode of depression, Joyce, I was at Harvard Law School as a visiting student, my last semester of law school and I had married Betsy the summer before, and I feel like I was on a conveyor belt and Betsy helped me stay on the conveyor belt and graduate.  If I had not stayed on that conveyer belt, I think the depression would have gotten worse and who knows how it would have affected my career.

I think we need to do better at educating students and families about what their rights are and getting the leaders on the campuses to understand that providing quality mental health services is a critically important service for all students and if you are going to be a world class institution of higher Ed, you have to provide world class mental health services.

>> JOYCE BENDER:  How would they decide who should be sent home ‑‑ and by the way, I even read to some students they were told they cannot come back on campus, which I'm reading this and thinking they are doing everything wrong when they are doing these things, but how do they decide that?  How do they decide, okay, you are very depressed, you are not?  Who decides this?

>> ANDY IMPARATO:  I mean, they are typically going to rely on mental health professionals who may not have spent a lot of time with the student.  As you know, Joyce, it's all idiosyncratic.  It's affected by the environment, and it's unique to the individual.  So that's not a simple analysis to do, and I think, again, the bias in lots of colleges is mentally ill students are dangerous.  The best thing for us to do is to get them off the campus while they are dealing with their mental illness.

>> JOYCE BENDER:  Yes, and part of that is when you hear, okay, we have to take guns away from people with a criminal background or mental illness.  You know, this thing that every person with a mental health issue, you know, has a gun and is going to be violent is only making it worse for people with mental health issues to get jobs.  I mean, it is just making it worse, which is why, by the way, companies that are listening, people do not self‑disclose.

Why would you ever self‑disclose, you know, well, people don't want to any way with any disability, but absolutely they would never raise their hand and say, oh, by the way, you know, I have OCD or depression or bipolar disorder, whatever it would be.  They are not because of this horrific stigma, and I mean what they are doing at schools, these professors are just perpetuating it by doing this.

And I did not get to read the entire paper, but was there a recommendation at the end as to what should happen?

>> ANDY IMPARATO:  Well, you know, I think one of the things I really appreciate about the Ruderman Family Foundation, Joyce, is they are trying to hold accountable institutions that historically have gotten away with things because they are kind of above accountability.  They are trying to do that with Hollywood too and trying to get, you know, film studios to take seriously casting actors with disabilities in disability roles.

But, yes, their recommendation is that institutions of higher Ed really take a hard look at this issue and recognize that at its core, it's a civil rights issue, and create better services for students where the bias is that the student would stay on the campus and do a better job educating all students about what their rights are and what they have a right to expect from the places where they go to school.

>> JOYCE BENDER:  Yes, well, I too, my hat is off to the foundation for doing this, and especially that they went to ivy league schools.  Oh, my God, that's, you know, this is not like it was some college in some rural area that's small and they don't know any better.  I mean, that was the best part; that they focus on schools that have the resources and certainly should know better to do the right thing.

Andy, I think we have talked about this before, but something I wanted to talk to you about, you know, as I stated earlier, you, you know, if I talk to anyone in the disability rights community and I say Andy, it's like Andy, everyone knows who Andy is because you are such a great leader.  My question is do you believe that we are encouraging enough young leaders to, like, follow in your foot steps and become a disability rights leader and have a policy background or get a law degree?  What's your opinion about that?

>> ANDY IMPARATO:  Well, I know, Joyce, you spend time working with high school students even though your primary focus is adults, you recognize that it's important for people to develop leadership skills and be comfortable in their own skin as people with disabilities from as early an age as possible.  So I would say we are not doing enough in K‑12 education for children that have childhood onset disabilities to help them develop a strong sense of identity as a proud person with a disability.

And so that's one of the areas where I feel like we really need to do better.  My goal would be for every young person when they graduate from high school or they finish their schooling, you know, K‑12 education, they know what their rights are as an adult with a disability.  Peri Jude talked about the Fair Housing Act, Equal Employment Opportunity Commission, they know what these things are, they know how to access them; they know how to assert their rights as adults with disabilities.

I don't think we are doing a good enough job making sure that young people have that knowledge and those skills as they are leaving school.  And obviously having a good work experience while they are still in school where they can be open about their disability at work, where they can ask for accommodations if they need them and understand what accommodations are going to help them be successful, that should all happen while young people are still in school.

>> JOYCE BENDER:  Right, I mean, do you think we could have some type of, I don't know, national program?  I mean, I know there are a lot of mentee programs, but I just wish we could do more because I just think this is so important.

>> ANDY IMPARATO:  I think part of it is building a stronger disability cultural identity and understanding that leadership development is a lifelong activity, and that there are opportunities to reach people in different ways at different parts of their careers.  And that is one of the things that I like about the AUCD network, you know, cultivating diverse leaders for the disability field is a big part of what we do, and with do it in an interdisciplinary way, and we try to instill in the folks that go, who go through our programs that, you know, if you are a leader as a pediatrician or a nurse or an occupational therapist or whatever your discipline is, part of being a leader is being able to think at a systems level and do advocacy.  So you can't, you are not going to be a leader as a pediatrician if you are not making time to do advocacy with and for the population and their families that you are serving.

That's a big part of what our centers do around the country, Joyce.  We have 4,000 long‑term trainees who go through our leadership program every year, and I think that that's a really important part of trying to grow the capacity of our movement to impact policy.

>> JOYCE BENDER:  And another reason you should make a contribution to AUCD.org, and, Andy, I assume if you go to the website, there is a place that says donate.

>> ANDY IMPARATO:  Yes.

>> JOYCE BENDER:  It's always easiest to do that online, because all of these things we are talking about, even hearing, you just heard what's going on.  We need more people that understand, that aren't just, you know, leaders, but understand our history and understand as you said what is the EEOC, and how does that impact me.

So that's really great that you are doing that, and, you know what, isn't it hard to believe next year is the 30th anniversary of the ADA?  Because I think was it the tenth anniversary where you had that thing with Volkswagen?

>> ANDY IMPARATO:  Yes, the spirit of the ADA torch relay was in 2000.  It's amazing that that was 18 years ago.

>> JOYCE BENDER:  I was there.

>> ANDY IMPARATO:  Yes.

>> JOYCE BENDER:  That is amazing.  That really is amazing.  But it is even more amazing to me that it's the 30th anniversary.  Sadly it's horrible that the needle has not moved more in employment, but we are trying to move it forward in this country.  But the presidential election is also in 2020, and I believe, again, whether you are Republican or Democrat, here is what matters, registering to vote matters.  Andy, do you think there is a way we could unite more people with disabilities into an action in this area?

>> ANDY IMPARATO:  You mean around voting?

>> JOYCE BENDER:  Yes.

>> ANDY IMPARATO:  Yes, well, I mean it's interesting, Joyce, you and I have both, you know, got involved in the 2016 cycle and Tony Coelho played a real leadership role in that, but look at the amount of money that Tony was able to raise from the disability community as part of the campaign.  I mean, I feel like people are ready to be more politically engaged.  They want to get involved in campaigns.  They want to be part of making change that will, that they will feel in their lives.

So, you know, to the extent that people are frustrated with the state of politics and frustrated with the general state of the country, that's an organizing opportunity for our community.  And, you know, I think if you look at all of these people running for president right now, it will be interesting who’s the first to come out with a strong disability agenda that people can rally arm.  There is a real opportunity for one of the candidates to distinguish themselves early by talking about their agenda for children and adults with disabilities if they are elected.

>> JOYCE BENDER:  Well, I agree with you.  I do feel we have come a long way, because we were a good percentage of the vote, but some way we have to unite and make that known.  You know what I mean?  So that we have a place at the table, so that candidates say oh, my God, I better get the disability community behind me or I better include more in my platform.

I just hope we are able to do that because I think it was you talking about it once, Andy, how we have this huge voting block that no one knows about.  So I think, I think that we did make a difference, you know; but I think we can even do more to make that more well known to those candidates.

>> ANDY IMPARATO:  I think that's right, Joyce, and I think that's important when you talk about it; we need to realize that it's a pretty broad population.  It's not just voting age people with disabilities, but it's also parents and family members of children and adults with disabilities.  It's professionals who work with people with disabilities for a living.  And the way I think about the disability vote or the disability voting bloc, Joyce, is it's anybody who has a strong disability interest when they are voting.  And that ends up being a huge part of the population when you include the family members and the professionals who interact with them as part of their careers.

>> JOYCE BENDER:  Right.  Well, I think it's so important, so I hope that that does happen.  So Andy, how about you, what are your plans this year for AUCD?

>> ANDY IMPARATO:  Well, you know, I think this year we are excited about, you know, trying to build bipartisan support with a Democratic house and a Republican Senate to, you know, support the goals of the Americans with Disabilities Act.  So a big thing we still haven't done that Senator Harkin spent a lot of time on is trying to get rid of the institutional bias in the Medicaid program.  There is a bill called the Disability Integration Act that adapt and NICL have been taking a lead on, but I'm hoping with a Democratic house we can get attention to that bill in the committees that have jurisdiction over it, that we can have a hearing, have a markup, and get that Bill to the floor in the House.  I think if we can do that, that will be a very  significant achievement!

There is autism legislation called autism cares that is set to expire in the next Congress, so we want to reauthorize that in part because it's connected to those interdisciplinary leadership programs I was telling you around the country that are training professionals, family leaders and self‑advocates who are going to be working with children and youth on the autism spectrum and other developmental disabilities.  There is a piece of legislation that Chairman Bobby Scott from the Education and Labor Committee is the champion for called Keeping All Students Safe Act, which is trying to make sure that we are not using seclusion and restraints in classrooms and that we are using positive behavioral interventions and supports to manage behavior for children in classrooms that have disabilities that affect their behavior.

So as you know, Joyce, our community has always been bipartisan, and we have always been able to achieve things even in difficult political environments.  I'm hopeful that we will have some issues in this Congress where we can get a bill to the president and the president can sign it.  I think the autism cares legislation is probably the strongest early candidate, but I'm hoping keeping all students safe and some of the other bills, the Disability Integration Act, are things that we can make serious progress on in this Congress.

>> JOYCE BENDER:  And I know that if our listeners are hearing what you are saying that they can make a difference by keeping in touch with their Congressman, you know, calling their senator, and saying how important this is.  It does make a difference.  I remember when Senator Harkin said that when a bill was being debated, negotiation, it was CRPD, that one group, you know, hundreds of calls.  His office, a few calls, and that does make a difference.  Isn't that right, Andy?

>> ANDY IMPARATO:  No question.  I mean, the bottom line is members of Congress pay attention to outreach from their home district or home state.  So they know how many people call in support of something and against something and if we are not mobilizing and making sure that our members know about the issues that we care about, then we are missing that opportunity to be part of the process in a way that can have a real impact.

>> JOYCE BENDER:  Well, great words.  Andy, what message would you like to leave with our listeners today?

>> ANDY IMPARATO:  Well, Joyce, one of the highlights for me of 2018 was Liz Weintraub who we talked about testifying in front of the Senate judiciary committee about the importance of self-determination for people with intellectual disabilities and she thought about when we say liberty and justice for all, all means all.  So that's a great message for us to take into 2019, you know, whether we are talking about quality education, inclusive higher education, employment, housing, you know, we want to extend the American dream to all people and all means all.

>> JOYCE BENDER:  All means all.  Well, Andy, thank you so much for starting the year with us. 

>> ANDY IMPARATO:  And thanks for having me, Joyce.

>> JOYCE BENDER:  And we end every show with a quote, and what we have talked about this is right on target.  The time is always right to do what is right said Martin Luther King Junior.  This is Joyce Bender, America's voice, where "Disability Matters" at VoiceAmerica.com.  Talk to you next week with Clay Houghton.  Don't miss the show!

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