>> Today is Thursday April 15, 2021 day 3 of the State of the Science Conference. 
>> KURT JOHNSON: Hi, welcome to the State of the Science virtual conference we are so pleased to have you here.  I am Kurt Johnson, I co‑direct the ADA Knowledge Translation Center, which is one of 11 centers that make up the ADA National Network.  I am speaking on behalf of Dr. Mark Harniss, my colleague, who has an Internet connection not stable enough to allow him to assume this role today.  Many of you know of the National ADA Network.  For those who don't, it includes 10 regional centers.  You can see those on a map that's coming up in our ADA National Knowledge Translation Center, they provide information and, information and guidance about the ADA to anyone in the United States through toll free number and through E‑mail.  They also provide training to businesses, nonprofits, state agencies and other organizations on request.  The ADA Knowledge Translation Center supports the national efforts of the regional centers by coordinating the information of materials and initiative including the national website and social media.  The network is celebrating its 30th anniversary this year.
The ADA National Network is funded by the National Institute on Disability and Independent Living and Rehabilitation Research within the Administration on Community Living.  We would like to acknowledge and thank our funding for support of our work and this conference.
Many of you have used zoom in the past, but here are just a few things about the zoom webinar.  You should see slides on the left and presenter and ASL interpreter on the right, you can use your mouse to click, adjust the size of the PowerPoint.  We will use chat and Q and A.  And audio settings are the left bottom of the screen with advanced view options on the top middle of the screen.  Let's talk about audio.  Next slide.
The audio for today's webinar is broadcast to your computer, make sure your speakers turned on and headphones are plugged in.  You can verify the audio settings ‑‑ I'm sorry ‑‑ Mark, chat number covered up the slide.
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The ASL interpreter's video is spotlighted, they show on the top of the screen two ASL interpreters, they will take turn, there may be a brief pause as they transition.  Note that tablet and phone options for viewing the video are different depending on the device.
To ensure equivalent visual access, presenters will describe any visual content on their slides, in addition presenters may provide a visual description of themselves.  For example, I might say, my name is Kurt Johnson.  I am a white man, approaching 70 years old, with long red hair tied back so it looks more presentable.  I am wearing a shirt.  And this is an increasingly common practice today and ‑‑ it may be new to some of you.  Let's move on to the keynote.  Today's first we will hear from today's speaker Michelle Bishop, with the National Disability Rights Network.  Michelle will present for about 30 minutes, and then we will have some time for questions.  After that, we will have a short break and then begin 5 research presentations covering a variety of topics related to access and inclusion.  We won't take questions during the presentations but will have 20 minutes after the last research presentation.  Following the opportunity to ask questions we will take another short break after the break we will have our closing speaker Mary Lou Breslin who will summarize what we have heard today and where to go from here.  With that I would like to welcome Michelle Bishop from ‑‑ and take it away.
>> MICHELLE BISHOP:  Hi everyone.  Good morning.  Thank you so much for having me.  It is absolutely my honor to be here with you today.  As you heard, my name is Michelle Bishop, I am the Voter Access and Engagement manager in the National Disability Rights Network, NDRN.  We are the national membership association for the disability rights network for the protection and advocacy agencies.  I would be willing to bet that you know yours.  I was asked to join you today to talk about our theme for today:  Access and inclusion.  And initially ‑‑ well, if you know me and know my work, access and inclusion is the heart of what I do but in a limited way.  I will be honest, I really asked myself, am I the right person for this.  When I think about access that, to me, means access to the ballot.  When I think about inclusion, that means inclusion in elections and access and inclusion realistically are so much bigger and so much broader than all of that.  But when I thought about it, sat down and really thought about it, I thought there is no way to talk today in April of 2021 about access and inclusion and not talk about the year that was 2020 and everything that we experienced and everything that I believe it taught us about where we are with access and inclusion, and where we go next, and that's what I am going to talk to you about today.  To give you just a quick description, I am a white woman, with usually unruly curly brown hair that's being especially cooperative today, for which I am thankful.  I have a big, plastic frame, black glasses with a black sweater on.  I am sitting in front of what I believe is now my Internet famous dining room wall.  I have a lime green access wall in the living room because we have been working from home so long, this is how all of you see me now.  But with that said, let's dive into it.  Let's go to the next slide.  So, you could say that 2020 had it all.  It really did.  It had it all in probably the worst way possible, but 2020 did truly have a little something for everyone.  If you remember, going all the way back to the start of the year, we kicked this all off with wild fires.  If you remember, when all of Australia seemed to be on fire, that was January of 2020.  I can remember how hopeful I was on New Year's Eve.  I am not even a New Year's person, I remember 2020 coming in with a bang.  So, right from the start, we started, at least our work, and I bet a lot of yours, with questions about how do we ‑‑ are we prepared to evacuate people with disabilities in the case of natural disasters.  Our work started right away in January 2020.  We went straight into a period of intense but necessary civil unrest.  In the face of racial injustice and police brutality, that was May 2020 ‑‑ it made 2020 an even more important if difficult year.  And I am so thankful for so many of my colleagues who are out there leading the black disabled Black Lives Matter movement in 2020 and everything they thought me in 2020 about intersectionality and ways in which we are truly connected, and in the way our fates are linked that was truly driven home by the headline of 2020 of course.  We found ourselves unexpectedly in the worst pandemic we have seen globally in a hundred years.  You can't talk about 2020 and not talk about the COVID‑19 pandemic, so much of what I am going to talk to you about today is, of course, driven by everything that we did in response to the pandemic to get through 2020 to where we are now.  But all of that culminated in late 2020 with the presidential election, and this was just not your average presidential election, this was an election in which we expected historic levels of turnout going all the way back to fall of 2019 about 2/3 of Americans were saying they are more excited for this election than any recent election.  When you think of voter turnout rates those are exceedingly.  Summer, 7 in 10 Americans about saying in Gallup polls they were thinking a lot.  They had given this election a lot of thought, and were ready to go and vote, those numbers are exceedingly, Hawaii don't get those numbers.  In every presidential election we found ourselves in a place where we were going to have to figure out how to process a number of voters, while keeping them all 6 feet apart.  Running elections is hard enough, making them exceptional is harder.  Doing it when we have to keep people 6 feet apart was a unique challenge.  Voters delivered, we got historic turnout.  One candidate got the most votes a United States presidential candidate ever gotten in a presidential election.  The other got the second most votes the United States presidential candidate has ever gotten in one of our elections.  You made it to the ballot box and showed you were serious when you said you were thinking and excited about this election, which was amazing.  All credit to you.  It came with its challenges.  We will talk about that.  Get to the election first.  Go to the next slide, and we are going back it all the way up and talk about all of the other ways that the ADA was tested.  All of the other ways that access and inclusion were tested in 2020.  And I know, given the broad range of topics covered in the summit, that you all have been talking about this.  You have seen the data, you are talking about the data this week and you know from where we came, but to touch on it quickly, I will say that you can see here a real ABC News article that said:  COVID‑19 pandemic reversed decades of employment gains for disabled but advocates see glimmers of hope.  I am glad some of you saw glimmers of hope.  I did not.  When the pandemic hit more than half disabled workers, they had been laid off or furloughed or believed they would lose their jobs in the next three months.  Compared just over a quarter of people who don't have disabilities.
In 30 years of the ADA, we made so much progress.  But when times got hard, when it really mattered, it became clear how much people with disabilities are still the last to be hired and the first to be fired.
How disposable so many of our jobs truly are when our economy really gets tough.  Just a wake‑up call, that I don't know about you, but I was not prepared for.  Um, see I included a quote I saw on 2020 that hit me so hard, person named Stewart Sherman at the time the Executive Director of the New York State task force on life in the law who said:  Are we comfortable sacrificing this group in exchange for saving more lives?  There is no way to talk about people with disabilities in 2020 without talking about rationing of care.  We have come so far in terms of civil and human rights, in terms of people with disabilities, but as soon as our healthcare systems were tested, as soon as our hospitals got overwhelmed, our medical professionals in our state and country leaders started asking:  Whose lives are worth living?  Whose lives are worth saving?  When we have limited resources to go around, are we going to save people with disabilities?  People most at risk for complications from COVID‑19.  In so many ways before we hit those emergency room capacities what happens to people with disabilities who rely on a respirator in their every day lives, when they become a preferred treatment for a disease and we have a shortage of them in the United States.  What happens to people with lupus, what happens to people who experience chronic pain when the descriptions they have used for years to ensure they are able to work live and play in their communities become experimental drug for all of us to fight a new disease, and suddenly those medications are nowhere to be found for people who need them for their lives and for their livelihood.  The ADA in 2020 was tested in ways that I don't think we have seen in the last 30 years.  And that's what matters, right?  When the rubber hits the road, are people with disabilities truly equal?  Are we truly included.  And I don't know about you but I spent a lot of 2020 asking myself those questions, especially every time I turned on the news or opened a paper, which admittedly was less and less as the year dragged on for my own mental health.  Every time I was confronted with one of these stories and really had to grapple with that question, but that's not my area of expertise.  And you have had other people come to talk to you about employment and those issues, let's go to the next slide and we will focus on the thing I really know about, and I am here to tell you about access to the ballot was also challenged in 2020.  We saw huge challenges to how all of us were going to be able to vote, let alone people with disabilities who already experienced more barriers than the average voter.  Going once again all the way back to the beginning of the year that was 2020, right in the center of the screen here, you see this screen shot of a report called:  Blocking the ballot box.  This was an NDRN issued report.  My organization released the report in January of 2020 because at the time we thought one of the major issues in the election was going to be in‑person voting, and the ways in which the ADA is actually abused to keep voters away from the ballot box.  The way the ADA has been misused is a smoke screen for voter suppression.  If you are not familiar with this issue, Google Randolph County, Georgia.  There are jurisdictions that closed up to 80% of their voting places.  They say it's because, I am going to say this with finger quotes, they were not ADA compliant.  We had to close them.  If you are thinking what disability advocates are out there asking for polling places to be closed, I promise you, none of them.  These are jurisdictions who didn't have evidence, who didn't provide surveys that showed these polling places were inaccessible.  These were jurisdictions who didn't speak to any of us, didn't talk to voters with disability or disability rights organizations, when they closed jurisdictions suspiciously where the majority of voters were black or brown people.  This was the issue we thought was going to be at the top of mind in 2020.  Well, in January of 2020, we thought that.  Two months later, we were in the midst of a pandemic, where primary elections were being postponed for months at time converted to fully vote by mail elections.  We saw the challenges early in April of 2020, there was a movement in Wisconsin to delay the primary, or to increase use of vote by mail, those efforts were blocked.  And Wisconsin went forward with a primary that was mostly in‑person voting.  Intended to be run like a typical election in Wisconsin.  Milwaukee, Allen, I am going to say off the top of my head, should have looked it up, I think there was around 180 polling places.  In April 2020, Milwaukee had five.  Five polling places, down from roughly 200.  There were locations that could not or would not serve as a polling place, a common polling place was actually nursing homes, fantastically accessible, all of the residents could vote by going to the lobby.  They couldn't get enough poll workers, they used the National Guard as poll workers because they couldn't recruit enough.  And poll workers who did work in that election had to bring their own PPE.  There were poll workers in Wisconsin in April of 2020 who had made their own masks to work that day.  If you remember, the PPE shortage we were in at that time.  It was horrifying.  We saw this throughout the rest of 2020 all over the country.  Access was challenged.  We lost so many polling places.  We thought we were going to battle this limited issue, instead we saw a major reduction of polling places all over the country, we did not have enough PPE to ensure we were going to be able to keep voting safe.  I spent most of the year worried, we started with high enthusiasm for this election, if we couldn't promise people they would be safe, like the poll worker you see here, a mask and gloves handing out "I voted" stickers, they were going to sit this one out.  Challenges to innovations, I thought were fantastic with a voter with a mask on using a drop off box.  I love the idea of drop boxes, request the ballot ahead of time, there is something to go and drop it in a secured box, you don't have to wait in the line.  I know that voter.  The line that day was four hours long, that voter was in and out in 10 minutes.  We saw challenges to use across the country in Texas, only one Dropbox per county.  Imagine how many people live in some counties in Texas, or how physically large some counties in Texas are bigger than whole states.  The challenge for voters to get to the drop boxes so limited in use, especially voters with disabilities in areas of the country where there is no adequate transportation, especially accessible transportation.  We saw states, interested states and counties interested in using curbside voting, it's a fabulous accommodation for voters in any given election, if the curbside voting can help, it's important for any voter for whom getting in and out of the car standing for any length of time or walking any distance is a challenge.  You pull up to the polling place in 2020, the smartest jurisdictions leveraged curbside voting because we have voters immunocompromised limited exposure.  They requested absentee ballot that didn't arrive on time because we were not prepared for 10 times more absentee ballot requests than we see in an election.  I personally spoke to voters who tested positive for COVID‑19 after the deadline to request a vote by mail ballot already passed, they were faced with not getting to cast the ballot or expose others.  Jurisdictions that let people stay in the vehicles and sent out a limited number of poll workers and PPE did a service to their communities to help stop the spread.  We saw challenges to curbside voting, you see a case in Alabama went all the way to the United States court we did not win but we won in many places.  The fight continues.  I can't say enough about the huge fight over vote by mail and remote voting in 2020.  Vote by mail became the star of 2020 election because of the pandemic.  We had problems with ballots that didn't arrive on time.  As I mentioned, they were also real battles over what you would be required to do to receive your ballot, how many witnesses are going to have to sign it, you have to get it notarized, where would you do that during massive shutdown in the pandemic.  And of course, you see here a great piece from the Times, they are not accessible to voters with disabilities in 43 states.  For once there was a spotlight on the fact that vote by mail systems, how you apply and how you receive and marked that ballot, are not accessible to people with disabilities.  Because traditionally it's all done through mailed pieces of paper.  We know for a fact some people cannot read, cannot mark, cannot physically handle.  And we suddenly were forced to rely heavily on a method of voting that we had failed for decades I will say hundreds of years to make fully accessible to people with disabilities.  One last issue that I think I really want to bring up around this election, but it's one that was personally so important to me, voters in long‑term care facilities.  Typically, well, I won't say I always worry about access for voters in long‑term care facilities, but typically election officials send staff in to these locations so people who live in long‑term care facilities who are eligible are able to cast ballots that way or able to have a family member assist them to complete the ballot or return the ballot for them.  Long‑term care facilities in 2020 weren't allowing folks in for very good reasons, to protect the staff and protect the residents.  All of a sudden these honor systems we had relied on to ensure that people in long‑term care facilities had access to the ballot disappeared, what we were going to do to make sure the voters could vote this was something to fight for, we fought hard for CMS guidance, that staff had to fulfill a real obligation to assist eligible voters to make sure their right to vote was respected.  It was a tough year.  It was an anxious year.  It was all against the backdrop of this terrible pandemic, and not knowing what the future is, the same way you feel in a pandemic but the same way you feel in a major presidential election, and we had to fight really hard for access to the vote.  At this point, in my talk, I imagine a lot of this sounds like a big bummer.  I can't blame you.  If you feel that way and you are thinking why are we starting off our morning with that, well 2020 was a bummer, so here we are.  But this talk today, this is not the story of everything that was hard about 2020.  This is not the story about everything awful in 2020.  You were there you already know.  This is actually the story of everything that went right in 2020.  This is the story of all of the ways that we persevered in 2020.  And where we go from here.  Let's go to the next slide.
So we did persevere in a big way.  We fought hard, we ‑‑ we may have lost in Alabama but got it established in many other places that were prepared to assist voters.  We did remove many restrictions from voting by mail.  We saw requirements for witness signatures and notaries waived for voters.  Deadlined for ‑‑ deadlines for requesting pushed back.  We saw many states add accessible vote by mail.  You may not know this but states are already required under federal law to have a system where you can get an electronic ballot to vote absentee, because we require it for military and overseas voters.  If a state already has it, they open it up at least to people with disabilities to make vote by mail accessible for them.  I think many states did, we push them and push them hard they did.  We did ensure access for a number of voters in long‑term care facilities, we talked long‑term care ombudsman.  We made sure they were able to cast the ballot.  They educated voters about their right and make a plan to vote quite frankly, we voted.  All of you, I feel confident, cast your ballot in 2020, no matter who you chose or who you felt was the right person to lead the country going forward, I know and I believe that you cast your ballots and you helped everyone around you to do the same.
And it worked.  It worked.  We actually saw the disability vote grow in 2020.  You can see here we have data from Rutgers, the number of eligible voters with disabilities in the United States jumped by 20% since 2008.  There are actually over 38 million eligible voters in the United States.  How many of you actually voted, that data is forthcoming.  We will see it from Rutgers soon.  We are anticipating a jump for sure.  We already have good early indicators.  We saw reductions in barriers.  This part to me is amazing everyone, the new data that just came out from Rutgers, show that voting difficulties for people with disabilities declined markedly between 2012 and 2020.  That's the article from The Hill talking about that research.  A decline in barriers for voters with disabilities.  Noticeable decline.  This is something we fought hard for, for a very long time.  One in nine voters encountered difficulties in 2020.  Double the rate with people with disabilities.  Without disabilities but it is an improvement.  18% reported difficulty, that number is down from 30% in 2012.  That's a several‑percentage‑point difference, even a few percentages in the in election makes a difference.  When we talk about gap in voter turnout people with disabilities those who don't, the gap hovers around 5 to 8%.  5% doesn't sound like a lot, it's not 25% or 50% lower than people without disabilities, when you are talking about millions of voters, difference of 5% can easily be millions of voters, millions of voices unheard to see a drop in in‑person voting barriers of several percentage points means million more voters were able to cast ballots without coming up against the barrier, barriers we have seen reliably from election to election we had to fight hard.  The fighting was worth it.  There was a huge shift of vote by mail only 5% with disabilities had difficulty using it.  Compared to 2% voters without disabilities.  That's fantastic.  83% of voters with disabilities said that they were able to vote independently and without difficulty in 2020.  That's down from 92%.  Previously.  We saw improvement, we saw people with disabilities casting their ballots, experiencing fewer barriers, and it's because we, as a community, we worked so hard for that.  We worked tirelessly for that.  In the face of everything that was awful about 2020, I promised you that what I was going to speak about today was not going to be everything that was awful about 2020.  Everything that you already went through, you already know.  This is not the story of everything that was hard about 2020.  This is the story of everything that we did right in 2020.  This is the story of everything that we fought for and won in 2020.  And the face of unexpected, seemingly insurmountable odds, this is the story of a people who fought in 2020 to ensure that their voices would be heard, no matter what we were facing, when we were losing our jobs at a higher rate than nondisabled peers.  When care was being rationed, when our life saving medical technologies and medicines were being diverted away from our community in the name of research for this pandemic, we persevered, we fought, you see the amazing disability rights Pennsylvania here, a quote from 2020, she said:  You cannot stop me.  She was talking about voting.  She was talking about her life.  She was talking about her advocacy, but she was talking about her vote.  You cannot stop her.  This is not the story of everything that was hard about 2020.  This is the story of a people who cannot be stopped.  Access and inclusion in the ADA, they were tested last year.  Everything was tested last year, but for people with disabilities, our rights, our access our inclusion they were tested in 2020.  But this is the story of a people who rose to that challenge and had their voices heard in record numbers.  I don't have to tell you everything that was hard about 2020, I know you went through it with me.  I know I am talking to people today who lost people they care about.  I did too.  When I look back at 2020, the last few months that we have had into 2021, I promise you I have taken the time to mourn what we lost in 2020.  But when I think about 2021, I ask myself where do we go from here?  In the ‑‑ and the answer, when I think about everything that we have fought for and everything that we persevered the answer is:  Everywhere.  We cannot be stopped.  Just like Amani, we cannot be stopped.  I know this past year was hard.  I know it was difficult professionally, I know it was difficult personally.  I understand everything that we have struggled through to get here, I was there with you.  But when you look back at this past year, I hope that you see everything that we fought for, all of the ways that we struggled and everything that we won.  When you look at the disability community and people with disabilities in the United States, I hope you think about advocates with disabilities in the 1980s who pitched themselves out of their wheelchairs and climbed up the steps of the United States capitol on their hands to fight for the ADA.  And I hope you see them again when you look at a year as grueling as 2020 and you see a people who could not be stopped.  A people who will be heard.  Who will be vaccinated, who will fight for that priority to be vaccinated with our peers.  Who will fight to have our voices heard at the ballot box.  When you look back at 2020, take that time that you need to process everything that we faced that was big and scary and awful.  Take the time to grieve everything that you lost.  But when you look forward, and you ask yourself where do we go from here, I hope that you know the answer is everywhere.  Thank you.
I am happy to hear your thoughts and answer any questions that you may have.
>> KURT JOHNSON: Thank you so much Michelle, that was fantastic.  Kim will be managing the questions, and we have about 13 minutes for questions.
>> Good morning Michelle.  Thank you for being here.  We have a few questions rolled in.  We were busy listening, we forgot to ask questions.  Here is the first question.  You speak of a reduction in barriers, increase of people with disabilities voting, this is wonderful.  Can you expand on why there is a reduction in barriers for disability access what is happening there?
>> Michelle:  I wish I could tell you ‑‑ I got emotional.  Hold on.  I wish I could tell you that it was because suddenly everyone realized that we are right and they need to make elections accessible, I wish it was because suddenly everyone started complying with the ADA and respect our civil rights.  It was not for that reason.  A lot of it, though, was driven by the pandemic, as odd as that is to say, as terrible it is.  We are in the pandemic, we had to face a lot of what was inaccessible about our elections.  A lot of the expansion in curbside voting wasn't because polling places was inaccessible, it's because they wanted to stop people who potentially have COVID from interacting with other voters and potentially affecting other people, or thought about people with underlying conditions who need to limit exposure.  I would argue if you did a Venn diagram of people with COVID and underlying conditions they come together in at middle.  We are talking about the same people, right?  The vote by mail became such a preferred method of voting in 2020 elections.  Officials were extremely aware they did not have the ability to process all of those applications, only so many people typically vote by mail in a typical election, it increased exponentially in 2020.  Things like allowing you to receive the ballot electronically, for us that's an access thing, right?  I want someone who ‑‑ low vision or doesn't have use of their hands to be able to access the ballot electronically instead of on paper, so they can do it privately, independently, that is your right under the Help America Vote Act, is that what drove it in 2020, maybe if they got sued.  Probably why that happened in 2020 is because they were aware that they could not mail out that many ballots in time.  They didn't have enough time to process all of those applications.  We had challenges with the post office, of course in 20 they didn't feel confidently, they could mail out the ballot in time, if they were smart they had a backup to access it electronically.  We saw innovations that I think are important for people with disabilities that some are driven by us, because we fight really hard for this.  Some were driven by advocates chaining us in the fight, when they started to see some of the holes in the system, that were really highlighted by running of the COVID election.  So, hopefully, you know, some of those changes were temporary.  I think the challenge going forward is advocating in our state to make sure that good changes you saw in 2020 will be made permanent.  That's ‑‑ that's kind of our next big challenge.
>> Thank you very much.  The next thing I will share is the comment ‑‑ we have a couple comments Michelle.  This was one of the most passionate emotional presentations I heard.  I applaud you and your commitment we thank you for your talk.  The next comment, what are some concrete steps you took to personally persevere.
>> Michelle:  First of all, thank you.  Folks who know me personally know I am really passionate about voting.  This is really my life's work.  This is my first job out of school was potentially get a vote organizer in the disability community.  This is what I have always done.  I do talk about it all the time as though it is a critical life‑and‑death issue.  I can't control it.
    (LAUGHTER).
>> Michelle:  So I am glad it spoke to some of you, I appreciate that.  Oh, my gosh, I talked for so long I forgot the question at the end of that.
>> The question is:  What are some concrete steps you took personally to persevere.  You didn't talk that long, you are doing great.
    (LAUGHTER).
>> Michelle:  Oh, my gosh, concrete steps.  I tend to be eyes on the prize all the time.  With this election was coming, no matter what.  If there was actually interestingly some discussion early on in the year could the election be postponed, could it be pushed back, will we not have a changeover of the presidency, that stuff is, it is in the constitution, right?  The November election could be pushed back by most two weeks before violating the constitution.  The presidency ends noon January 20th.  When there is a changeover that's a hard‑and‑fast rule.  So, when you work in the business of elections, your deadlines are firm.  No matter what happens in between today and election day, the work has to get done.  So it actually, one, didn't have a choice, but it also gave me something to focus on, to be honest.  Other than being anxious and scared and sad about everything terrible around us.  And that was really an anchor, I think, for me personally and for a lot of the folks that I know.  The work just has to get done.  And probably still clinging to that, we are all still at home, I am talking a little bit like it's over.  I just got vaccinated, we are not out of the woods yet.  But in genuinely, I mean, looking at what did we win coming out of this.  This was awful.  I will always wish that what we went through in 2020 never happened.  But what did we win and where do we go from here, to me, kind of keeps you going when it's hard.
>> Thank you.  Our next one is ‑‑ well, let's see.  The next question is a statement really, so, please comment on the Georgia law and effect towards people with disabilities.  We can't stand in long lines, toilets, water, et cetera.  What do you have to say about that?
>> Michelle:  I think what we are seeing right now, if I am being honest, in a couple of states, including Georgia, is a pushback on what we want in 2020.  We saw expansion of access to the vote.  Because 2020 was so challenging we really had to open up people's access to the process, and in a number of states we are seeing some pushback on that.  There are people who don't want to see that happen.  I think that's particularly obvious in Georgia, why on earth do you need a law that you can't bring people water while waiting in line to vote.  That just makes it difficult to wait in, it can be hot in Georgia when you are waiting in line, you need water.  If we can't bring them water, we will bring them Gatorade.  That was my favorite thing I heard come out of the debate around the 2020 law.  Or the 2020 pushback that we were seeing in Georgia, the new laws.  I would say the work is certainly not done.  We made some good progress in 2021, we didn't make good progress in 2020.  We are not seeing enough.  Being in the disability rights community, like you don't ever get to rest.  We never get to rest.  Our work is never done.  That, to me, is one of the hardest things you never get to sit back and say, whew, we solved that for people with disabilities.  I think we will continue to be right up to the 2020 midterm.  In you are in Georgia, keep fighting.
>> Yeah, I think that's about right.  My last question, I think, what has been your experience addressing the voting access needs of the culturally deaf/blind or those who have blind, vision, hearing loss.  Can you add ASL to vote access?
>> Michelle: Oh, okay.  Let me talk about ASL first, love it.  I talk about this a lot actually.  Because I ‑‑ I personally know a lot of people who are deaf or hard of hearing who don't think of themselves as a person with a disability.  They think of themselves primarily as a speaker of another language, right?  When a person who speaks ASL goes to vote, the primary barrier is not that they can't hear, that's the poll workers don't speak ASL.  If we were all multilingual, it wouldn't be a problem.  I talk a lot about how our election officials need to think about ASL as a language access issue, as much as they think about it as a disability issue.  Because they do think about how to provide access to speakers of other languages, in many jurisdictions it's required once a certain number of people whose primarily language is whatever language, Spanish, or whatever language it may be, they are required to provide access in those languages.  And I really want our election officials to think of ASL the same way.  It's a language access issue, as much as it's a disability rights issue.  The one thing that I will say that I am both happy and terrified that you asked about is access for people who are deaf/blind.  We struggle with this constantly.  The most honest, genuine transparent answer I can give you is that we talk about this a lot, I don't know that we have truly great solutions.  I don't know that we have truly great solutions.  And I would even add to that if there is anyone out there today who has good ideas, send them my way.  Send them my way.  The most important thing that I have learned in doing this work is that all types of disabilities are different and no two people who have the same disability experience it in the same way.  Access for all types of voters, especially voters with disabilities, there is no one ‑‑ there is not one solution, there is no fix all, it's everything but the kitchen sink solution, we have to provide as many options as possible for voters so they can find the one way that works for them.  When we get into people with deaf/blind and multiple disabilities it's hard to have good answers.  Oh, I see some suggestions coming from the chat, thank you, put everything in the chat that you can think of, we want it.  We are hungry for it.  The one thing that I learned in all of that, the most important thing I could do in my work is listen to people with disabilities tell me the barriers they see and the solutions that they want.  And take that back to our election's officials and legislators to try to make that happen.  So, any was ‑‑ any ideas that you have I will listen and be eager for that.  I think we can come up with better solutions together.
>> I will ask one last question because it's just segues perfectly into this:  How can we as people with disabilities get involved with NDRN? 
>> Michelle:  Oh, I love that question!
>> I thought that was a good one to end on.
>> Michelle:  That makes me so happy.  We would love for you to be involved in NDRN!  We launched a new website in 2020:  Voters with disabilities.org.  The most simple URL we could find.  Voters with disabilities.org we launched it in 2020.  It has some resources, we would love more, we would love your help with that.  We try to feature videos with people with disabilities about issues that matter to them and how they plan to vote.  It doesn't matter, it doesn't have to be disability.  I think of a black woman with a disability, the most important issue to me in 2020 is racial justice and police violence.  As it should be.  As a black woman in America, that is not a disability‑specific issue, that's why she wanted to vote and we want to make sure she has access.  If you want to be a part of the videos, or know someone who should be, if you go to the website we have opportunity to reach out on other issues as well.  So, we would love that.  But if you start with our voting website:  Voters with disabilities.org, you would make my day.  We want it to be a comprehensive website.  Whatever you have to suggest or to show us you think we should add to it, we would absolutely love that.  Thank you.
>> Thank you, Michelle.  I will turn it over to Kurt for a few last comments before we go to our break.
>> KURT JOHNSON: Thank you.  Thank you so much, Michelle.  I don't think I could have any comment, other than your own statement about your passion.  We really appreciate that.  We are going to take a 15‑minute break, and we will resume at 10:05.  We don't have a timer on the screen this time because we think that the timer may have caused some of the disruptions in the PowerPoint we had last time.  So, watch your clock and we will see you soon.
(Short recess taken.)
 
(Short recess taken.)

(Our program will resume momentarily).
>> KURT JOHNSON: Welcome back everyone.  We will begin looking at our 5 research presentations related to access and inclusion.  Each presentation will last about 15 minutes.  As a reminder, after the final presentation we will have a 20‑minute question‑and‑answer period.  I encourage you to submit questions as we go and then we will address those at the end for the question‑and‑answer period.  We'd a like to start out by welcoming Dr. Lisa Iezzoni from Harvard Medical School.  She will be discussing ‑‑ I am going to editorialize here what I think is incredibly important piece of research that she just published and her colleagues just discussed about physician's perceptions about people with disabilities.  So, Lisa, take it away.
>> DR. LISA IEZZONI:  Thank you for having me.  This is one of hundreds of articles I published that didn't go on a dusty shelf but people are interested in.  I am grateful to have a chance to talk to you guys about this.  I am a white woman.  I identify as she/her.  Curly gray hair, woman of a certain age.  I have this multiple sclerosis, used a wheelchair since 1988.  Next slide, please.  So, there are 61 million Americans with disabilities and those numbers are growing.  As the National Academy of Medicine said in the 2007 report on future of disability in America, disability in America is not a minority issue, it affects today or will affect tomorrow the lives of most Americans.  It's now more than 30 years since passage of the Americans with Disabilities Act, and more than 43 years since regulations were implemented under Section 504 of the 1973 Rehabilitation Act.  Why is it so hard to make healthcare fully equitable and accessible to people with disability.  Why in 2021 do people still confront barriers and experience disparities in their healthcare.  Next slide.  Previous research has involved surveys, focus groups and in‑depth interviews with people and have suggested some explanations and answers to the questions next slide.
For example, sometimes people's underlying health conditions might be complex and present competing priority to retune screening and preventive services and other healthcare where there are disparities.  People with disability have disadvantages in social determinants of health.  People with disability might have different preferences for care than nondisabled people.  We all know about inadequate training of healthcare professionals about disability ineffective communication, accommodations for people with disability with their healthcare providers.  We know there is inaccessible medical diagnostic equipment, including weight scales, exam tables, physicians have inadequate knowledge about ADA mandates for equitable care.  Physicians, we know, qualitatively have erroneous assumptions about people with disabilities and attitudes.  Next slide.  Several studies have examined physician's attitudes about caring for people with disability, but typically they have been within small geographic regions or institutions.
So, ours was the first‑ever national survey of practicing physicians in United States about their experiences and perceptions of caring for people with disability.  We are grateful of funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development.  Because it was a first national survey.  We were greedy, we got to cover a lot of topics, but we had to go shallow, not deep as I will talk about in a few minutes at the results that I am going to talk about here are about physician's perceptions of people with disability and these results were published in the Journal of Health Affairs, February 1 of 2021.  Next slide.  So, I'd like to thank research colleagues Sonja, Karen and Nicole.  And Eric and Julie from University of Colorado.  Dragana from University of Massachusetts, Boston Center for Survey Research, Tara who was at Springfield, but moved on to Northwestern in Chicago.  So, we looked at physicians practicing in 7 specialties:  Internal medicine, family practice, rheumatology, neurology, ophthalmology, orthopedic surgery and obstetrics gynecology.  Next slide.  We developed our survey first conducting qualitative research for starting with in‑depth individual interviews with 20 practicing physicians in Massachusetts.  We then conducted 3 focus groups with 22 total practicing physicians across 17 states.  That the groups and interviews we identified key topic areas to the survey.  We designed it iteratively, months, every other week conference calls, zoom wasn't a thing at the time, among us and colleagues across the country.  We ‑‑ after we designed the first draft of the survey, we had 8 cognitive interviews and 50 pilot tests of the draft survey.  It was 8 modules with 75 questions, and again it's broad but not deep.  Next slide.  So, we randomly sampled practicing physicians within the 7 specialties from a national list.  We eliminated trainees.  VA physicians, locum tenens physicians, and physicians with no longer, less common attributes, sampled 350 physicians in each primary care specialty, 140 physicians in each of the 5 specialties for a total of 1400 in the sample.  The center for survey research mailed paper surveys in October of 2019, along with a crisp $50 bill inside to incentivize physicians to respond they offered to answer the survey online.  The center for survey research had information to track nonrespondents, they made follow‑up telephone calls re‑mailed the survey without the dollars this time.  84% of the physicians answered by mail, only 16% online.  The pandemic complicated our final follow‑up.  So, we actually didn't end up closing the survey until June of 2020.  But our overall weighted response rate was 61%.  The response rates varied narrowly across the 7 specialties.  From, let me see, the chat just went over what I was going to say.  I think it was from 58% neurologists correct to 63% for rheumatologists.  Next slide.  Okay.  Many findings on various topics.  What I am going to focus on this morning is on physician's perceptions of caring for people with disability.  Next slide.  So, top line findings.  82% of physicians report that people with significant disability have overall worse quality of life than other people.  Only 41% of physicians are very confident in their ability to provide equal quality of care to people with disability.  And 56% of physicians strongly welcome people with disability into their practices.  Next slide.
Other findings 18% of physicians strongly agree that people with disability are often treated unfairly in the healthcare system.  And 80% strongly agree that understanding their patients with disability is very valuable to them.  Next slide.  So, we also did multivariable analysis on the quality of life outcome found few significant associations.  Women physicians were much less likely than men to report worse quality of life for people with disability.  The odds ratio for women was .58 confidence interval of .33 with p value .05.  The next is less significant safety net physicians who saw more than 35% Medicaid patients in practice are less likely than non‑safety net physicians to report worse quality of life for people with disability.  Their odds ratio is .59 with confidence interval .34 to 1.05 p value .06.  We conducted multivariable analyses of physicians welcoming people with disability in practice, remember 65% said they welcome people with disability into their practices, women physicians much more welcoming than men.  The odds ratio is 2.29 confidence interval, 1.4 to 3.76 p value less than .001.  There were some racial ethnic differences across the physicians, but the samples for underrepresented minorities were too small to feel we could do rigorous statistical analysis on this.  Older physicians, much more welcoming than young physicians, older physicians .58 with confidence interval .35 to .93 with p value .04.  Physicians in private practice were less welcoming than physicians at teaching hospitals, with odds radio .38 confidence with a p value 0.01.  Couple more findings.  Physicians who value understanding patients with disability are much more welcoming.  Odds radio 5.46 confidence 3.03 to 9.83 p value .0001.  Physicians confident about their ability to provide quality of care much more welcoming with 3.53 with p value less than .0001.  Next slide.  Okay.  Our survey has limitations, I already said we went broad but shallow.  That was because we had to conduct the survey in 15 minutes to get the response rate.  Although I can tell you the top line findings, I can't answer the question why.  We did not include questions that explicitly link physicians' attitudes with their treatment decisions for patients with disability.  It was not feasible in this type of survey to explore implicit biases such as through the implicit association test which are conducted online.  There were too few underrepresented minority physicians as is true in the profession overall.  There is less than 5% physicians in the nation now to explore their attitude, budgetary constraint, limited survey size, we could not compare across specialties or include geriatrics or physiatry.  Next slide.  So, typically in surveys there is something called a Social Desirability Bias, where survey Respondents answer the way that they think the public would want them to answer.  The survey gave physicians the option to say people with disabilities have the same or better quality of life, but they didn't.  82% of them said people with disabilities have worse quality of life than other people.  My belief is this response, worst quality of life, suggests strong confidence in their answer.  The physicians who answered this way didn't think they were getting incorrect answer, they thought no one would argue with their response.  And this raises questions about care for people with disability in times of scarce resources.  Our keynote speaker said especially in this time that the COVID‑19 pandemic.  Given the potential bias of physicians, how can we ensure people with disability get equal quality of care.  Next slide.  Here we have even more problems because only 41% of the physicians feel confident in their ability to provide equal quality of care to people with disability.  Now, this is in a profession that doesn't tend to be shrinking violets.  Physicians tend not to be shy about saying how intelligent or good they are.  And it was interesting, though, that physicians who do not feel confident are less welcoming of patients with disability in their practice.  So, here again, we are 30 more years after enacting with the Americans with Disabilities Act, it's troubling less than half of physicians feel confident about providing equal quality of care clearly.  This must be addressed.  How quickly can that happen?  Next slide.  So, finally, especially in this time of COVID‑19, why should patients with disability need to prove to their doctors that they value the quality of their life to get equal quality of care.  Next slide.  I always like to end with Independence Day.  Thank you.
>> KURT JOHNSON: That was so much, that was great.  We want to note that Lewis Kraus from the Pacific ADA has asked that we post in the chat that the longer presentation that you made recently for one of our webinars is available online.  So we encourage people to consider looking at that.  Now, I'd like to introduce Kurt Johnson and Mell Toy, who are going to present on our work that we have completed on accessibility and healthcare access.  Thank you Kurt, I am pleased to be introduced, the principal investigator in the Northwest ADA University of Washington.  And Mell Toy is the interim director.  I assumed that role after Kathy Matrone, who many know, retired.  Mell Toy assumed her role after Michael Richardson, the project director, went into the private sector.  Next slide.  I'd like to make acknowledgments, this study is based on a manuscript published in Health and Disabilities.  The authors were Dr. Anne Ordway, Michael, Kathe and I was a consider author.  It was published under the support of grant number 90DP99 ‑‑ 90DP9095.  We have no conflicts disclosures as we heard repeatedly including immediately prior to this there are significant disparities in healthcare access for people with disabilities.  And these include significant consequences.  People have less diagnostic services ‑‑ receive less diagnostic services, differential healthcare outcomes, and they encounter numerous barriers in trying to obtain healthcare.  And we know that from what ‑‑ Dr. Iezzoni, I see we misspelled your name, we will fix it before it goes out, as she noted people with physicians perceive people with disabilities to have lower quality of life and are less confident in their ability to provide care.  And may not welcome people in their practice, it's a more complicated situation, but these are important variables.  We also know that healthcare coverage is not ‑‑ is necessary and has improved with the ACA but is not sufficient.  Next slide.
ADA and healthcare are covered under Title II and III of the Americans with Disabilities Act.  Next slide.  There we go.
So, what are the research questions we covered.  The first is:  What are the current barriers to healthcare access experienced by people with disabilities under Title II and Title III, what are the approaches used by healthcare entities to ensure equal access to healthcare for people with disabilities.  This work extends the findings of our colleagues Harris, et al., who happened the landscape of ADA research and found there was no evidence needed to support ADA implementation to ‑‑ and there need to be deeper interrogation of organizations to better understand what their practices were and how they had used information that was available to them about ADA implementation.
Next question, or next slide.
We used mixed methods.  And we conducted focus groups and surveys of people with disabilities.  The surveys were developed based on some work we had done with communities of practice in our ‑‑ in our region about healthcare access.  And we developed a survey with 55 closed and opened‑ended questions, partly based on adaptation of the Washington group short set on functioning in the survey of participation and receptivity in community for people with mobility limitations.  We conducted cognitive interviews on the questions to make sure that they were understood in the way that we expected them to be.  Our survey respondents were 562, primarily white women, with variety of disabilities.  But most had some limitations in mobility, and mostly from urban settings.  It was a convenient sample reached out to independent living centers and snowballing to increase the sample size.  We also conducted 19 focus groups and the participants in those were primarily white women but from more likely to be from rural areas, low vision, blindness, hearing impairment and that was the sample where we reached out to recruit subjects that were not represented in the initial survey.  For question 2, we conducted key informant interviews with 11 healthcare providers, including ADA coordinators, providers and physical therapists, again this was a purposes sample.  Next slide.  The results for question 1, were people required having in the survey required had difficulty accessing everything from exam tables to weight scales to medical diagnostic equipment to exam chairs and to ‑‑ and providers didn't have knowledge of even how to conduct transfers.  And I am going to pass this to Mell, who will talk about the results from the focus groups since she participated in those.
>> MELL TOY:  This is Mell, thank you Kurt.  I am an Asian person with dark brown hair pulled back.  I am hearing a headset, glasses and a light gray cardigan over a black‑and‑white shirt.  My background is solid purple, says University of Washington, with a giant W on it.  I want to take a few minutes to talk about some of the stories that we heard coming out of our focus groups.  We held three focus groups in three of our states in the Northwest part of the country, which is also called Region 10.  Those states were:  Alaska, Oregon and Washington.  In Alaska, we heard about the difficulties with transportation to and from medical appointments.  More than one participant in Alaska talked about traveling from Alaska to Washington State where they had their medical appointments in Seattle.  You can imagine the type of transportation that's entailed there, air travel, ground transportation, and even an overnight stay in Seattle.  And they experienced long wait times between different types of transportation, sometimes they weren't even picked up by the taxis, and then after enduring a long day to get to their hotel in Seattle where they were supposed to get ADA accessible room only to find out it wasn't accessible to them.  In Alaska, we heard a lot about inaccessible diagnostic medical equipment.  One of the participants shared that he didn't know how much he weighed, he hadn't been weighed for five years, because his provider got rid of the wheelchair accessible weight scale, because no one was using it, he said.  He hadn't been weighed for quite sometime, he had no idea how much he weighed.  Also, he experienced difficulties transferring from wheelchair to exam tables, and exam chairs because there was no assistance by the healthcare provider, there was no skills team at the clinic, no lift, et cetera.  In Washington State, there was a unique focus group, all of the participants had a visual disability, that was one thing that they shared in common and a strong theme that came out of this group something that Dr. Iezzoni talked about was the provider perception or provider attitude as the barrier to accessible healthcare.  So, we heard stories from people who said, you know, they approach the front counter to check in for their appointment.  And they were told by the staff person, oh, you need to wait for your sign language interpreter to show up.  And the patient said:  I don't need an interpreter, I am blind, but I hear you just fine please, remove that from my chart.  Having an awkward conversation there.  Another participant shared a story where they were sitting in an exam room waiting alone, they heard someone come into the room, who didn't identify themselves, and started touching the patient without permission or any kind of announcement how startling that experience was for the person.
We also heard for about providers issuing equipment for the person to take home, for example there was a heart monitor issued to one of the participants but no instruction was given.  It was assumed by the provider that the person had someone at home to help them.  And when the person said, you know, I really need some instruction, well just get a family member you live with, someone you live with to help you work this equipment.  And the person said:  I live alone.  I have lived alone many years now.  It really surprised the provider, so the provider said, well, why don't you take it to your neighbor, I am sure your neighbor would love to help you work this piece of equipment.  When the patient said, I am not going to do that, that's really a strange thing to do, I would not feel comfortable doing that, the provider decided that the equipment was not necessary for the person to take home.  I just wanted to recount some of these stories as best as I could to give you some examples of what we heard during our focus groups.  With that I will go ahead and turn it back over to Kurt.  Thank you.
>> KURT JOHNSON: Thanks so much Mell.  We think that qualitative data that came out of the focus groups is probably in many ways more informative than what we got from the survey.  From the key informants we heard that the ‑‑ they were concerned about the lack of ‑‑ their lack of access in the healthcare system to ASL interpreters that mirrors concerns from some of the respondents who complained that they didn't have access to interpreters.  They noted the lack of ‑‑ they had a lack of training on how to transfer people.  They discussed the issues about late and no show policies that may result in hospitals dropping patients with mental health issues, and I will note that's also an issue for people with traumatic brain injuries, who may forget they have an appointment not show up and get dropped as patients.  And accommodations may not be included in the medical records they may not be any history available within the electronic medical record to let them know what kinds of accommodations have been requested.  Next slide.
So, in our discussion we observe, as many others, that people with disabilities continue to experience significant barriers in accessing healthcare.  Healthcare providers lack training in critical disability issues, and perhaps that should more thoroughly be addressed in pre‑service education.  I know our School of Medicine all of the physicians in training get education from some of our staff on issues key to disability.  But that's not universal.  Healthcare systems may not be nimble enough to make responsive changes quickly.  Healthcare systems have incredible amounts of inertia driven partly by fee for service and partly by payers.  One of the things that we have noticed in employment is that we have been asking for years to have work at home be one of the options for employment.  With some concerns, I would add.  With the pandemic, all of a sudden that's available to everyone.  With healthcare systems, we now have robust use of telemedicine, which is, has its own limitations but is incredibly convenient for people to not have to try to get to the healthcare settings.  And after a couple months of pandemic there was actually a way to get reimbursed for that.  That will probably ‑‑ that reimbursement is likely to change and it would have been hard for systems healthcare systems to make those changes without changes from CMS.  Comprehensive examination of applications of the ADA and healthcare is important.  The systematic enforcement of the ADA is warranted in healthcare.  And I reference back to Sachin Pavithran's observation that they are now working further on the standards for accessible medical equipment at the Access Board.  With that, I want to thank you for your attention.  And we will be welcome to ‑‑ welcome questions when we get to the question‑and‑answer period.  Now, I will revert to being Kurt Johnson again, and thank you Mell so much for participating in that, we really appreciate that.  And we are going to move on to Dr. Nguyen and Dr. Monique Pappadis from the Southwest ADA.  And they will be discussing their research about service animals Vinh is going to begin.
>> VINH NGUYEN:  Yes, thank you Kurt.  Next slide.
ADA regulations define service animals as any dog that is individually trained to do work or perform tasks for the benefit of a person with a disability.  These tasks could include among other things, like pulling a wheelchair, retrieving dropped items, alerting a person to a sound, reminding a person to take medication for their chronic health condition, or performing physical tasks like pressing an elevator button where a person can't do that.  Of course more person understand what a seeing eye or guide dog who helps people without vision to navigate through the public.  Generally, they are allowed where the person is allowed to go in public.  And the ADA also prohibits public facilities from applying a surcharge, usually you see that with hotels and motels where any time that you bring an animal or rent a room, and have an animal they try to apply a pet deposit or some type of animal fee.  So, the ADA prohibits that.  The establishment can only ask two questions.  The animal is required because of a disability.  And what work or task it is trained to perform.  The establishment cannot probe about the disability that means like they cannot ask extensive questions about the person's disability or try to make the person prove the disability and then they also cannot make the person prove that the dog is actually a service animal, that they cannot require some type of certification or proof of training.  What I forgot to mention is that there are also animals known as emotional support animals and comfort animals or therapy animals, those are not protected by the ADA.  The key word in defining what a service animal is they are trained to perform tasks and animals, such as emotional, support, comfort animals provide a benefit to people with disabilities by their mere presence, they are not necessarily trained to assist the person with a disability.  The topic of service animal is easily the most popular topic that the ADA National Network receives on our phone lines, through E‑mails and our ‑‑ in 2014 the Southwest ADA Center published a booklet expounding on the issue of service animals it's easily the most popular and most downloaded publication from the ADA National Network website.  Next slide, please.  So, I think about two or three years ago now, it's been a while, our ADA Center was curious about what types of barriers or experiences people with service animals were experiencing out in public.  And the title of or the title of the slide or the head of the slide is actually a little misleading.  We ‑‑ this was easily our most popular survey that we have ever done.  And we had 1250 people that use assistance animals respond to us.  Not all of them were dogs, I think we had like maybe people that 10 people said they had cats as emotional support animals because from general experience, training a cat is very difficult, but we had ‑‑ the supermajority like 99% of our survey takers did utilize a dog.  And these ‑‑ the tasks that these dogs or animals perform were broad.  Almost half did some type of physical task, while almost ‑‑ well, almost another half did pass that assisted people with psychiatric disabilities.  In terms of training, because we used a convenient sample where we approached both disability organizations and service animal organizations, including their trainers, to recruit our participants, we also had a varied amount of people that had different types of dogs in terms of training.  More than half were professionally trained.  And again, that may be due to sample bias.  33% were trained the dogs themselves, 12% actually had someone else, it could be ‑‑ we didn't have ‑‑ specify what the someone else is.  It could be like a family member.  And then, as I mentioned before, 3% of the respondents had untrained emotional support animals.  In terms of like the demographics of the people themselves, 65% had a disability they would say was invisible, hidden or not obvious.  And even though the ADA does not require people to identify their dog through a tag or vest, almost 91% of the users said that they identified their dogs with some type of vest or tag.  They ‑‑ 50%, over 50% said they got this identifying gear from their trainer.  While 40% said that they got it from some other source and 6% said they made it themselves.  We found that, you know, when it comes to gear, that they obtain from a non‑trainer, most of them mentioned that it is ‑‑ they got it through the Internet.  Through some vendor.  Next slide.
So, in terms of the barriers they reported, you know, I was a little surprised by the numbers but over 50% said that they had never or rarely been denied access with their animal.  And I thought that figure was a little high.  But that is what we had.  But you know, a good 44 or 45% said that they sometimes or frequently were denied access or felt unwelcome, so those were the participants that we were really interested in focusing on.  About 40% of the respondents said that they were probed inappropriately about their disability.  While 90% of our respondents actually said that they were asked to prove their animal's training through certification or license.  In terms of the types of establishments were that denied access or caused issues in terms of like, you know, the experience, no surprise the most popular industry were food services like over 80% of our participants said they had problems either at a restaurant, bar or grocery store.  With respect ‑‑ with transportation, and I am not talking about public transportation, I am talking about private transportation like taxis, Uber and Lyft, almost 50% said they had issues there.  32% said they had issues at medical facilities, 10% said they had issues with lodging such as hotels and motels.  Other demographic factors that led to their experiencing barriers were that if you were female, nonwhite, had a hidden disability or did not, you know, the 10% that did not have identifying gear on the animal.  You were more likely to experience issues.  One other factor that we found that we were a little surprised, but you know, it might be a reflection of the training was that it seems like the public seems to recognize whether the person training the animal themselves, we noticed that they experienced more barriers, or people that trained their own dogs experienced more barriers than people who had their dogs professionally trained.  Next slide.  At this point, I would like to switch it over to my colleague, Dr. Monique Pappadis.
>> DR. MONIQUE PAPPADIS:  So for the second phase of the project, we did deliberative dialogue which essentially where we take diverse groups of individuals who represent different groups to come together to discuss different issues.  So we presented to them to be able to identify specific barriers that they have experienced related to service animal use.  And then, also, to discuss, you know, potential concerns that they may have related to different industries.  And then, also, came together to discuss solutions or recommendations.  So, we put together a stakeholder group of 7 individuals, four individuals were service animal users, where they had dogs performing different tasks.  We also had two representatives from the lodging industry.  One from food service, two from healthcare industry, and two from transportation.  So there were several barriers that were identified by the group that where they reached a consensus is that there is an explosion of fraudulent animals.  Basically, many individuals bringing pets to different places under the assumption as if they were in calling them service animals.  Also, they had concerns about pets causing danger to their trained service animals.  So, specifically where non‑trained dogs or pets can sometimes provoke the service animals.  And then, another barrier identified was that individuals and industries not really understanding the ADA rules around or surrounding service animals.  And so, you know, industries business owners as well as employees may not know as much about dos and don't with regard to service animal policies.  And then the majority of industry and business owners, as well as employees do not know how to specifically identify service animals, as opposed to pets.  So, many of the stakeholders involved, I mentioned two questions that Mr. Vinh had mentioned that, you know, they aren't allowed ‑‑ it was not sufficient information to properly identify service animal and leave some type of question about whether or not the animal should be permitted.  Next slide, please.  So they had a significant number of recommendations, one is consensus on the revision to the ADA, to address the misrepresentation of pets as service animals.  Also, the development of some type of certification or accreditation process to be able to confirm that the animal has been trained.  And then the process also having a process that entities or industries can use to be able to successfully identify and verify whether or not an animal is indeed a service animal.  In addition, they recommended that trainers should be licensed by the state or federal government to train or be able to accredit service animals.  That government should recognize certain organizations as qualified to certify both the service animal as well as their trainer.  In addition, they also mentioned about needing to educate service industry as well as general public about ADA, the ADA and service animal use.  And many of them made suggestions about the need to have some type of ad campaign or public awareness surrounding service animal use.  Next slide, please.  So the next steps to strengthen our study findings is persons with disabilities will have a better understanding of potentially challenges with service animal use before seeking ownership of a service animal, as well as being able to support those conversations between providers and clients prior to prescribing the service animal.  Also, a fact sheet could be disseminated to increase awareness of use of service animals in a variety of different settings as we mentioned previously.  Online training modules to be helped to increase awareness and knowledge as well as designed specifically surrounding those industries where many barriers occur again food service, hotel or motel lodging transportation services.  In addition in the healthcare setting.  And then, also, next steps what we would like to do is really explore the strength and barriers to service animal use but focused specifically on the workplace setting.  So, thank you.
>> KURT JOHNSON: Well, thank you so much, both of you.  You are right on time.  You left out a slide.  People can reference that.  Let's move on now to Dr. Michelle Putnam and Kerri Morgan, who will talk about aging with a physical disability.  And, oh, I think I am not sure which one of you is going to start.  I think Michelle?
>> DR. MICHELLE PUTNAM:  Um‑hmm.
>> KURT JOHNSON: Excellent.  Take it away.
>> DR. MICHELLE PUTNAM:  Hello everyone.  I am Michelle Putnam.  I am a white woman with short brown hair.  I am wearing all black today.  I have on glasses, and a blue background behind me.  So the title of our presentation is Participation, Accessibility and Aging with a Physical Disability.  Next slide, please.
This study is part of the longitudinal study of aging with a long‑term disability, this presentation is.  The study is being done at a center called Cedar Midwest Community Engagement for Disability and Aging Research.  What did we want to know when we did this analysis that we are going to talk to you about today, and what did we want to know about the longitudinal study; we wanted to develop a better understanding of the interaction of aging, disability and participation over time.  We wanted to understand if changes are related to growing older, functional ability, factors in the community such as accessibility, services and supports that help people participate in other personal community resources, or if it's related to all three.  We wanted to know if it was your disability, you are growing older or what is in the community or all together.  Next slide, please.  Why did we want to know this?  Well, people aging with long‑term physical disabilities are an understudied population.  We don't have a lot of research on this group of people and aging with disability.  But we know that people who are aging with physical disability, that includes people living with long‑term effects of physical disabilities acquired from birth to middle age who are surviving into middle or late life.  That's really the population group that we are focusing on.  We know that for that group of people, when the aging process begins as they age people with physical disabilities start reporting greater difficulty associated with their main condition, and that starts closer to ages 45 and 55.  Sometimes people refer to this as accelerated aging, but we are mostly thinking about people who feel like they are growing older a little bit earlier than the rest of the population.  Next slide, please.  So what was our study?  This is a multi‑year Internet and phone‑based survey study.  It's a group of ‑‑ it's a cohort we are following and we are collecting data over three time periods for a five‑year time period whole.  To be included, you had to be 45 to 65 years of age.  You had to have your disability for five years or more.  And in this case you needed to be English speaking.  The exclusion criteria, the only one we really had was, that if you had a cognitive impairment that limited your ability to self report or answer the questionnaire then you were excluded from the study.  Our recruitment was primarily community‑based specific community research project.  We have a network that we used called our community‑based research network.  Those are partners in community‑based organizations that we work with to recruit them ‑‑ recruit people.  That was our main source of recruiting participants.  We also recruited through social media.  Most of our participants are coming from the St. Louis area where the Cedar Midwest Center is based at Washington University in St. Louis.  Our first survey that we gave, so our year one baseline survey, we had a ‑‑ we had a sample of 475 people included in that survey.  That survey is repeated one year later, so anniversary of your first taking it and then one year later after that, so that's our year one, two, and three.  And my colleague, Kerri Morgan, will say a little bit more about this our time window is an interesting one, our first wave of data was collected before the pandemic.  Our second year of data was collected partially before the pandemic.  And then in the pandemic and our third year is being collected now.  So, we will have an interesting look at change over time.  And there will be factors in the pandemic, which is kind of new to try to think about how that fits in.  The questions and survey, the items on the survey, are really in five domains one is we collect a lot of information about demographics.  So, everything that, who you live with to your income level and to work and employment information.  Another domain is health, so asking about self reported health chronic conditions, disability‑related symptoms when we think about aging with disability.  We have another section on participation, so things that you do activities that you engage in.  We have another section that asks about resources, including supports and services that you might receive in the community.  And then we have section on the environment.  Including facilitators and barriers things that help or get in your way to you doing the things that you want to do.  So, that is the setup of our study.  And now I am going to pass it over to Dr. Kerri Morgan, who will talk a little bit about our initial findings.
>> DR. KERRI MORGAN:  Hi, I am Kerri Morgan, a white woman with brown hair, wearing a black shirt.  I have a background screen gray with Washington University logo.  I have a disability.  I use a manual wheelchair.  Michelle introduced the research study, I will review some of the results.  I am going to start by describing the demographics of our 475 participants.  We asked participants to identify the health condition or impairment causing their physical disability.  There were many different diagnoses and health issues.  We coded the responses.  The most frequently reported health conditions fell into three groups.  Musculoskeletal, osteoarthritis spinal stenosis, amputation.  Second group, neurological examples, cerebral palsy, multiple sclerosis.  Third was immunological, rheumatoid arthritis and connective tissue disorders.  The mean age was 57, and mean of 19 years of living with their disability.  The cohort was predominantly female.  Over 1/3 of the group identified as nonwhite.  This is really important because the only other cohort that we know of that was similar on aging with a disability that looked at specifically health was 94% white.  So, really we made emphasis in recruitment to try to target a more diverse sample.  The majority of ‑‑ majority of our cohort was in the employed 60% reported being on disability leave.  Next slide, please.  Did that slide advance?  There we go.  Thank you.  Three symptoms are commonly reported fatigue, pain, depression.  We wanted to examine the three symptoms, there is a figure on the slide, the X axis shows the three symptoms, the Y is the score on the measures used.  The higher the score, the higher level of the symptoms over a 7‑day period.  The general population average score for the three symptoms is 50.  What this figure shows, each of the three symptoms for our cohort is higher than the general population.  Next slide, please.  This slide is set up really similar to the previous slide except rather than looking at aging symptoms, we are looking at participation.  On the X axis we have two participation measures, ability to participate in social roles and activities, and the second one satisfaction in participating in social roles and activities.  This time the lower the score the less ability in satisfaction.  People reported in participating in social roles and activities.  Again, the general population average score is 50.  So our participant report scores are lower than the general population.  We looked a little bit closer at this participants with lower scores more often lived alone, had lower incomes, and reported worse physical and mental health.  Next slide, please.  So, we are really interested in what people aging with disabilities are doing in their daily lives, and what they are doing every day and what supports they need.  We looked at 9 different activities throughout their day.  A few examples of these activities are socializing, employment, tours around the house, and managing medical conditions.  What we really learned is that people aging with disabilities are doing a lot of things.  We looked at demographic characteristics to see if the demographic characteristics associated with what people were doing and we did not find any associations.  So, we looked more closely at different activities, I am going to share one of those activities with you today, which is physical activity.  I selected this activity because this is the activity that had the highest number of participants reporting that they wanted to do more of.  So, we had 66% of our participants report they did some level of physical activity.  Of the participants that reported they were doing physical activity, 59% reported that they still wanted to do more.  They were doing some they wanted to do more.  Of all of the participants not doing any physical activity 76% reported wanting to do at least some physical activity.  And they really identified that they were going to need area support in four different areas if they wanted to engage in this activity more.  Those four areas were needing more personal assistance, needing the proper environmental environments and overall health.  The participants reported doing physical activity had lower scores of fatigue, pain and depression and higher scores of social participation than our participants who were not physically active.  Next slide, please.  So, I told you about the 9 activities that we looked at.  We had an open‑ended qualitative question at the ‑‑ at the end of each of the 9 activities that asked about what supports they need to participate in the activities.  What we found probably no surprise to the group, people aging with disabilities experience a wide range of factors that impact whether they are being able to be independent and participate in society.  Participant response is highlighted at equal combination of environmental or extrinsic factors or personal intrinsic factors.  Physical effects of disability and accelerated aging of pain and fatigued paired with environmental such as accessibility of transportation, which was a big one that was identified or reported as influencing participation in daily life activities next slide please.  So as Michelle mentioned the timing of our cohort study is that our cohort study is happening during COVID, the data I reported to you is prior to the COVID pandemic, but the follow‑up surveys did happen in the middle of the pandemic.  What we did was at the beginning of the pandemic, we put together a survey, a short survey to figure out what people's experiences were during COVID.  So, 186 people out of the 475 responded, and we are still going through this data.  What we are finding is that a small percent of participants had been diagnosed with COVID.  Most participants are actively engaging in social distancing.  And there is increased food security meaning people are having issues more so in the pandemic of accessing food and when they need it.  And that there was challenges in completing ADLs due to lack of available assistance.
>> KURT JOHNSON:  Kurt interrupting, we are about out of time.
>> KERRI MORGAN:  Thank you, Kurt.  I will wrap it up.  Next slide, please.  What can we learn from the findings.  Although participants are doing activities in the daily life like physical activity, they may want to do more than they are doing them or do them less than they are doing them, in many instances they are not satisfied in how they are doing them.  There is really a host of intrinsic and extrinsic factors that add to that.  Next slide, please.  Last slide.  We are analyzing our data, our next steps.  Right now we have a lot of information about accessibility and the physical environment and services people are receiving in their communities.  And that's what we are looking at right now.  Thank you for your time.  Next slide.  And I look forward to any questions.  
>> KURT JOHNSON:  Thank you so much Michelle and Kerri, I know that represents a piece of a lot of ongoing work that you are doing.  Next up we are going to look at the ADA participatory action research consortium.  Today we have Jaqueline Kish, you want to kick us off? 
>> JOY HAMMEL: Thank you.  Excellent Kurt.  What I would like to do, first of all, is acknowledge our funder, which is the National Institute of Disability Rehabilitation and Research.  And also visual description of myself, I am a white female, late 50s, brown hair, brown eyes, green shirt.  I also use the pronouns she and her, and I self‑identify as a disabled woman activist and participatory action researcher.  Next slide.  And that gets us into the action research we have been doing within ADA PARC.  ADA PARC stands for the Americans with Disabilities Act Participation Action Research Consortium.  It's a consortium of all 10 regional ADA Centers, along with action researchers from several universities and then an outreach to hundreds of different disability organizations.  Next slide.  What are we interested in and what do we want to know.  We took the mandate straight from the disability rights community.  What they wanted to know, since the passage of the Americans with Disabilities Act, which is now going on 30‑plus years, how are people with disabilities faring.  Are they getting equitable access to participation opportunities in our society or are there disparities.  And specifically, they asked us to look at large data sets, Census level population health data to see it broadly.  And they wanted to see it in several different areas of participation.  So, we are documenting across community living, community participation, and work and economic equity.  Next slide.  What I would like to do in the rest of the presentation is focus in on an example of how we take this very large‑scale data population health data and translate it back to local communities so they can actually use it and take action on it.  The example I want to use is a project we did with the Metropolitan Mayors Caucus, which represents over 275 cities, towns and villages throughout Chicagoland region and Illinois.  They also have diverse stakeholders, including the mayors themselves, but also politicians, policymakers, government officials, urban planners, transportation services, social services, and disability groups.  They are in a very strong position to affect policy and system changes in their communities and across the entire region.  The way they heard about ADA PARC is that Robin Jones, director of the Great Lakes ADA Center, working with them many years on ADA related training and technical assistance, she talked about what we could give them from an ADA PARC perspective.  Yes, we want to know that in our communities.  Next slide.  So, we used a participatory action research approach that was called appreciative inquiry.  What that involves is working with communities to identify participation issues and strengths in those communities to vision dreams and aspirations where they would like to be set concrete action goals to get there.  The Mayors Caucus in this case chose four diverse communities to start with to feature them to give the rest of the caucus an idea of what is possible.  These communities represented different geographies and very diverse constituencies within them.  They invited the key stakeholders to participate in community forums we happened to get all of those in right before COVID hit, now we are moving to an online forum to continue the discussion we were asked at ADA PARC to give short presentations about what is happening in their community disparity reports.  They facilitated small breakout groups with stakeholders to strategize how to use the finding and prioritize actions and ADA PARC took the information put it in community report, add information, and gave it back to the communities so they could use it in their actions.  Next slide.  I want to give just a few examples of what happened in those forums and community reports.  So, one of the first things that we started with every community is just talking about what does disability look like in their community.  So, we gave them a report on the number of people with disabilities, the percentage of the population that represents, their different ages, different types of disabilities, different ethnicities and races, different economic status.  And we give them that report to start with.  And that's where you can begin to see some differences already between communities.  So we know three of the communities we focused in on had higher rates of percentage of people with disabilities living in them than another one Naperville with only 7%.  Next slide.  The next thing that we did was went through a series of information on how are people with disabilities participating in each of these communities, that community living community participation and work and economic participation.  And for example, in this slide you are saying percentage of people with disabilities who are employed in those communities, according to the American Community Survey.  Here we start to see also some disparities.  So two of our communities, Hazel Crest and Chicago itself had fairly high rates of unemployment, fairly low rates of employment.  So around 31%.  Whereas, we see in the other two Naperville and Arlington Heights higher, 48 to 50%, targeting the communities to see is it just a demographic or income thing, are they doing promising practices that could be replicated.  We talked people through what unemployment looks like.  And also not in the labor force, which means people with disabilities who have been out of the workforce for an extended period of time.  Next slide.  Then we went into a whole analysis of economic equity.  Particularly since so many people with disabilities are not employed, we looked at what are the percent that are living below poverty, which is $13,000 or less in the United States right now.  Here is where we see disparities on multiple levels first of all two of the communities here Hazel Crest and Chicago have higher rates of living below poverty 32 to 35% of people in these communities are livings below poverty, which means one out of three potentially people with disabilities are living on $13,000 or less per year, which is no small feat in these communities.  Whereas, comparing to the Naperville and Arlington Heights, we see half the level looking at what is going on, what are the differences here.  But not only can we compare between communities, we can compare people with disabilities to people without disabilities in the general population.  And this is where you see people with disabilities are three times more likely to be living below the poverty level than people without disabilities.  I would have to say just this one slide, this one piece of information, was probably the number one thing that community stakeholders looked at, shook their heads at and said, boy, that's not a good thing for us to have in our community, what are we going to do about it.  Next slide.  Then finally we began to do visual mapping with them in the community.  So, what you are seeing here is the GIS map of a community Hazel Crest, Illinois.  What the map shows it shows how Hazel Crest is situated where the neighbors are we overlaid on top, where do people with disabilities live in those neighbors.  So, the darker the color orange, the greater percentage of people with disabilities are living there.  More accessible format we can see to Hazel Crest, we have greater percentages of people with disabilities living in northeast and mid sections of Hazel Crest, which was important to the communities to show where are the zones that potentially are most restricted in terms of their participation assets and resources and what could we do about that.  Next slide.  Now, I would like to pass it over to Jaqueline Kish my colleague to continue the presentation.
>> JAQUELINE KISH:  Hi.  Thank you Joy.  My name is Jaqueline, I am a Ph.D. candidate working on the ADA PARC project.  I use pronouns she and her, I am a white woman in my 30s, wear glasses and short dark hair.  I am wearing a dark shirt today.  And I am going to continue talking about GIS maps.  This slide shows two examples of GIS maps where people with disabilities live in Orange, but we overlaid the bus lines on top of that in blue.  We have also done spatial analysis showing 99% of people with disabilities live within a quarter mile of public bus in Chicago on the left only 71% do in Houston on the right.  These maps can be used to identify disparities to influence action as well as compare access between cities.  Next slide, please.  Here is another slide of the two samples of GIS maps where people with disabilities live and their proximity to rail services overlaid in blue.  Rail access is typically less than bus, but Chicago, again, shows better access or proximity than Houston.  Chicago, 49% of people with disabilities live within a half mile of public subway or train, while only 10% in Houston.  The intention of showing this to the participants in the Mayors Caucus meetings was to demonstrate spatial analysis, can give us some important information, and also to find out how this information would be helpful to this group of stakeholders.  We worked to initiate a discussion on the ways to assess access with these maps being just one example.  Next slide, please.  This next sample is two GIS maps that show access to transportation across a region.  So, here is a map of the San Francisco Bay area showing where people with disabilities live in proximity to bus on the left.  97% of people with disabilities are in close proximity.  And then to rail transportation on the right where 32% live in close proximity.  It's important to evaluate transportation regionally many issues identified by people with disabilities occur in coordination of services across the region as opposed to just within one city or within one system.  Next slide, please.  So after we presented these disparities reports we asked the attendees what the priorities for their community were.  How they could use these type of data and how we can create meaningful change.  Next slide.  So, the findings from the community meeting are compiled here.  I want to say far and away the biggest request for the ADA PARC was for a regional analysis of public transportation.  And maps that show where sort of the black holes or stark lack of access were for people with disabilities to direct the impact advocacy in these areas.  Other great suggestions we received were asset based, including championing coordination efforts and municipalities that are good examples of adapting policies and allocating funding for access for people with disabilities.  Additionally, to transportation, a number of other community participation domains were identified including affordable accessible housing and social and community participation to address social isolation.  Okay.  I will hand it back to you, Joy.
>> JOY HAMMEL:  Okay.  Next slide.
>> KURT JOHNSON: Joy, this is Kurt, we are running out of time.
>> JOY HAMMEL:  Okay.  What can we learn from the findings the community reports were valuable, as a way for them to take the information, that research, and actually put it into action and then work with the Americans with Disabilities Act centers to actually get there.  And next slide.  Finally, we are taking a lot of steps to strengthen, you know, the ADA PARC outreach and research is, well, one I want to highlight we.  Are now updating, doing major revision to the ADA PARC website so the communities can automatically get these community reports downloaded and just select a city, get an infographic, that tells you all about what is happening, get a map that tells about where people with disabilities are living and where some of the disparities are.  So, that's where we are headed.  That website will be going live to the public in June, and so we invite you to be a part of it to help us get the word out about it.  And to help us evaluate it.  Next slide.  And just a special thank you to all of the ADA PARC consortium collaborators and participants.  If you would like to get a copy of the community reports, our website is listed there as well as you can E‑mail me copies of the report, or you would like your community features.  Thank you.
>> KURT JOHNSON: Thank you so much Joy and Jaqueline.  I strongly recommend that you explore the website, it has an amazing amount of data, you may find it useful in some of your work.  Now, we are going to move to our question‑and‑answer period.  And I am going to pass this to Kim, who has been monitoring the questions that you have asked.
>> Kim:  Thank you all for all of our presentations.  A few questions to start with, start with Dr. Iezzoni.  Tell us (inaudible) excluded from the study.
>> Lisa:  Yes, this is Lisa.  VA facilities often are more accessible by design than non‑VA facilities, specifically because the types of patients that they see have service connected injuries or diseases, for example at my local VA hospital the elevator doors close more slowly than other hospitals because they want wheelchair users to get off the elevator before the doors close on them.  We did not feel that the experiences at VA facilities would necessarily generalize to physicians practicing in the regular community.
>> Kim:  Thank you, Dr. Iezzoni.  The next question is for Kurt and Mell.  You mentioned systemic ‑‑ systemic enforcement of the ADA in healthcare, that happens only if there is filed complaint of discrimination or facility possibly an element like diagnostic equipment altered or built new, do you have suggestions for enhancing these limited avenues of enforcement?
>> KURT JOHNSON: That's a great question.  I know in the disability studies class that Dr. Mark Harniss and I teach the students constantly come up with the complaint about the degree to which ADA enforcement is complaint driven but the burden of enforcement is on consumers.  I am ‑‑ I don't have smart answers about this.  I ‑‑ so we have a couple of things going on that we have seen locally.  One is the increasing sophistication of ADA coordinators and healthcare systems, who can take the lead in organizational change.  We see that probably Mell correctly, probably most significantly in healthcare organizations like Kaiser where the ADA coordinator have been quite active in at least some areas of Kaiser, but that's a toughy.
>> Kim:  Thank you, Kurt.  Our next question is for Vinh and Monique.  Were you able to get a sense of service animal users' understanding of their rights and responsibilities under the ADA?  Was there a difference between handlers with a dog or dog trained by a professional?
>> Vinh:  Since we use convenience sample approaching organizations, the people we surveyed were pretty knowledgeable about their rights, we could not distinguish between those that trained their own animals versus using a professional trainer.
>> Kim:  Thank you Vinh.  Looking for the next question.  Thank you for the introduction to your great study Dr. Putnam and Morgan, what were your thoughts and planning for analyzing person environment interaction effects on activity and participation, have you looked at any results from that type of analysis seems like a great opportunity for examining mediation processes.
>> Kerri:  Yes.  This is Kerri.  That's a really good question.  We are just starting to look at the environment aspects of the survey, so, we do have some information such as we use the chief survey.  We have scores on where they live the area deprivation index.  And we know what resources they were accessing in their environment so we do have plans to take a good lack at how we perceive the environment what resources they are using and how that does link to participation but we are in the early stages of it.
>> Kim:  Thank you Kerri.  Next question is for Joy and Jaqueline.  Great to see this spatial disparity map, was any evaluation done of the maps in analysis shown sometimes analysis can be complex were you able to examine how participants understood the map and analysis or the strength and limitations of the analysis?
>> Joy:  Hmm, yeah.  That's a really good question.  Something that we are spending a lot of time on in ADA PARC it's how to translate that information.  So, first of all, I would say the maps are actually more accessible to certain populations.  Right?  Certainly not as accessible to people who can't see them, but for people with cognitive disabilities, developmental disabilities, and I would say for some of our stakeholders as well some of the policymakers the visual maps showing a neighborhood and where people with disabilities are living and how economic status plays out in that and access to resources, they took and they used actually.  It's just explaining through it.  You know, kind of building a map with them so that they understand it and can do something with it.  Part of it when they have their own community in front of them where they recognize the neighborhoods that helps immensely, right?  That's why the community reports are so needed on that front.  But for general accessible, right?  Aside from that group, part of what we do is always provide textual analysis and verbal analysis, you know, of what it means.  So just like I told you, a third of the people are living within a lower SES neighborhood.  It's the same thing.  We need to provide that information in lots of multiple and alternative formats to be able to do that.  But I think the combination of them are very powerful.  Right?  And the alternative formats having multiple formats of it is actually very useful to the communities.  We saw different people in different roles taking on different ways of looking at that information and then taking it into action.
>> Kim:  Thank you, Joy.  Our next question is for Lisa again.  See if I can get it to come back for us.  Lisa, what are the next things between the need to study based on what we learn about physicians from your study.  Also what policy interventions should be considered?  With mandatory cultural competency training in medical schools or continuing medical education make a positive difference?
>> Lisa:  Those are a lot of great questions.  I am not sure that I can answer all of them in one fell swoop.  Let me say we need to fix this.  This is a big problem.  You know, I think it's a great idea to focus on medical schools, and in fact there are a number of medical schools around the country that are doing really great work with medical students actually leading the way.  But that's a pipeline.  And from the day that a medical student goes in the door to the day they finish a three‑year internship or residency is 7 years.  We don't have time to wait for the pipeline of new trainees we need to get ‑‑ we need to get this out there right away.  I think that ‑‑ that we need to look at continuing medical education and requirements in states for our continuing medical education.  States such as Massachusetts actually require certain types of continuing medical education for certain types of concerns.  For example, CME credits are required to look at patients safety concerns.  Maybe we need to think about requiring physicians to make certain CME credits relating to equity.  So not just equitable care for racial, ethnic minorities, which I think we need to focus on but also equitable care for people with disability.  And also, I do think that we need to try to get the Department of Justice to do the scoping reviews on the diagnostic accessible medical diagnostic equipment.  I didn't have time to talk about our findings from that.  But pertinent to the second talk we found only 40% of physicians have accessible exam tables.  And only 20% have accessible weight scales.  So if physicians don't have accessible equipment in their offices, the notion they would think about providing accessible care to their patients, it just doesn't fit together.  There is a disconnect there.  So, I think there is a lot of work to do.  But this really needs to be raised to a high level and policy.  People really need to think thinking about this.
>> Kim:  Our next question, Vinh and Monique.  Seems from a federal researcher, here is the question, I would be interested in knowing what recommendations you would have in using the deliberative dialogue of what advantages you saw.  This person says, I would love to use that method in their research.
>> Monique:  I can answer the question.  This is Monique.  So, the advantages of doing the deliberative dialogue method is, one, to be able to have everyone's input into the discussion.  Have everyone to be able to identify, for example, in the case of our study, to be able to identify specific barriers or problems.  And then to be able to come up with recommendations and solutions as a group as a whole, in addition to, you know, really thinking about whatever they come up with, the recommendation to also think about the pros and cons, what are the circumstances that must be considered, as well as, you know, who should be involved if one was to carry out that recommendation.  So, I highly recommend it if, you know, comparing it to other kind of qualitative method, this one is really about to ‑‑ is great for really addressing, you know, issues that may be controversial or there is a difference of opinions.  You know topics that are dear and near to a specific community or a group.  So I would highly recommend it.  I would highly recommend it in those types of scenarios.
>> Kim:  Thank you, Monique.  Our next question goes back to Kurt and Mell, what organizations provide quality training for healthcare providers on improving the treatment of patients with disabilities and implicit bias.
>> KURT JOHNSON: Well, I can't start my video, I will have the mute, turn my mute off.
>> Hold on Kurt.
>> KURT JOHNSON: I think, I go back to what Lisa is saying, continuing medical education is probably one of the big tricks.  And I agree with her that getting that into state law or rules is critical.  It's ‑‑ we recently had a project where we were training rural physicians, primarily neurologists, on how ‑‑ how holistic treatment of people with multiple sclerosis it was really people had a lot of resistance to participating in training, just because they said they were so barn dizzy once they were involved, they appreciated it's hard to get physicians involved to continuing education.
They have an awful lot of discretion over what ‑‑ what they sign up for.  So, I think getting it required by the licensing laws and state laws is the way to go.  With regard to who will do it, that's an interesting question because it has to be people who have credibility.  And I think ‑‑ yeah.
>> Kim:  Thank you, Kurt.  I believe that we might be on our last question.  We will see if we have time.  This one is for Dr. Iezzoni.  Dr. Iezzoni it's a two‑part question I suppose.  Bear with me.  You may want me to remind you.  We will start with the first one, the first part of it, which is were there any questions that tried to tease out differences and views depending on disability sensory neurological psychological, et cetera?
>> Lisa:  Yes.  So our survey had 8 modules, and as I said, I was only presenting one of the modules to you today.  We had separate modules related to mobility disability, hearing, vision, intellectual disability, and mental health.
>> Kim:  Second, our second part of the question, which is not related, it's not a two‑part question.  Do any medical schools offer opportunities for medical students or do hospitals provides opportunities for healthcare professionals to interact with people in disabilities in a nonmedical manner to allow them to learn about people with disabilities to allow greater perspective about their lives?
>> Lisa:  Yeah, I saw that question come in on the Q and A, and it was such a great question.  Because there is a thin thread of research, but it's there, that suggest that if physicians get to know people with disabilities, just hang out with them, spend more time with them, that they view their quality of life as better.  And so, I certainly know anecdotally of medical students kind of organizing their own, kind of like actually Harvard Medical School right now has house calls type of program, where the students kind of hang out on a day with a family, with a person with a disability.  And so, I think that there are certainly sporadic programs like that.  But that's certainly the way to go to just get physicians to know us.  Know about our lives.  Know that when we are not coming into the office, we are living our lives 24/7, 365, we figured it out.  You know, and have them see how we do it.
>> Kim:  Thank you Dr. Iezzoni.  That does wrap up our questions.  I will turn it back over to Kurt for just a brief statement and we will go to our break.
>> KURT JOHNSON: All right.  Thank you.  And I will just mention Lisa, we were in South Africa a while ago, one of the medical schools there actually requires all of the medical students to spend a month in ‑‑ with an independent living center.  And it's a different kind of medical education, but it certainly did give people a different flavor of what the issues are.  So I want to once again thank the presenters this morning.  We really appreciate it.  I think that you provided an excellent overview of your research.  We are going to transition into a break.  We will have 15 minutes, and we will return at 11:55 and Mary Lou Breslin will provide an overview and summary of what we have heard this morning and help us end this.  So thank you all so much.  We will see you in 15 minutes. 
(Short recess taken.)

>> KURT JOHNSON: Welcome back from our break.  I am pleased to welcome Mary Lou Breslin, in the Disability Rights Education and Defense Fund.  Many of you know her.  She is going to reflect on what she has heard this morning.  And with that, welcome Mary Lou.
>> MARY LOU BRESLIN:  Thanks very much.  So hi everybody.  My name is Mary Lou Breslin.  I am an older white woman with short gray hair, and I am wearing glasses and a black shirt.  My pronouns are she/her, so I am a disabled woman and a long time wheelchair user.  I had polio as a kid.  I am a senior analyst with DREDF, with offices in the San Francisco and Washington area.  I would like to thank the conference organizers to allow me to respond in this great research reports everybody has been doing, so many diverse ADA related topics, as Michelle Bishop said at the top of this program, that's really been quite a year.  This was the year when I think we have all been even more thankful for having the ADA.  For example, it's really been a critical tool in challenging the discriminatory crisis standards of case policies that many people mentioned.  And that a number of states adopted to guide healthcare services rationing during COVID.  These devastating policies contributed to ending the life of Michael Hickson, who most of you will probably remember reading about in the newspaper.  At age 46, Michael's death resulted from a hospital's refusal to provide him with lifesaving COVID‑19 cares and withholding nutrition and hydration.  The hospital would not provide him with medical treatment because they deemed him to have a low quality of life.  So we were very happy to have a tool, a legal tool, advocacy tool to challenge the policies that led to Mr. Hickson's death.  The ADA has been a fundamental tool challenging hospital policies when persons were barred from accompanying somebody being admitted.  The administration of the COVID vaccination programs are rolling out across the country, the ADA has been an effective tool to increase vaccination site accessibility and improve digital communication, particularly for people who have difficulty accessing websites.  So, even as the past year has laid bear, extraordinary inequities, the very exposure presented some unique opportunities.  As mentioned Kurt Johnson mentioned, working at home has become a norm rather than the exception.  Which I think is exciting because not so long ago, people with disabilities were frequently told we couldn't work at home.  Even though doing so might make it possible for some of us to be employed.  Telehealth offers new opportunities as mentioned.  Presenting possible new barriers that we have to keep an eye out for to receiving equitable healthcare services.  COVID has also up ended entrenched practices, perhaps for the better.  Increased federal funding for home and community‑based services is the mechanism that enables meaningful implementation of the U.S. Supreme Court ADA decision in Olmstead, and it's a direct outgrowth of both really high level community advocacy and the awful, terrible circumstances that so many people faced during this really exceptional year.  COVID also, I think, raised up the second status of the direct care workforce.  It contributed very significantly to the public's understanding of the complex synergy between people with disabilities and our personal care assistance all for the better.  As COVID vaccination allocation has been rolling out around the country, we have been seeing more challenges related to public health understanding of disabled people with multiple health conditions, who actually until quite recently within the last few weeks were not ranked at the top priority tiers to receive the vaccination.  I was happy to see yesterday HHS OCR released guidance of Section 504 and 1557 of the act preventing discrimination in vaccination.  They contain fundamental nondiscrimination provisions that have been such important tools this past year.  The vaccination prioritization process in many places raised powerful equity questions bout the availability of the vaccines in communities that experience high levels of healthcare disparities and made up significantly of people of color.  Only after advocates around the country vociferously argued this includes people with disabilities with high risk of COVID infection or death were the policies changed to include them in the higher priority tiers.  ADA issues popped up also in a variety of unsurprising and surprising ways.  As the allocation policies turned into practices people who reported having difficulty signing on to websites make appointments for the vaccine.  Others faced access failures, vaccination sites, and others who don't use the Internet could talk about availability.  Other communication accommodations, blind advocates raised serious concerns about website accessibility, to making vaccine appointments, and access to basic communication where Internet platforms are not accessible.  These advocates though were able to use the ADA as a lever to address some of these issues and some locales to reaffirm how important this legal tool is.  Interestingly, in California, a data tool called Healthy Places Index is used to identify priority neighborhoods hardest hit by COVID, and they are targeted as vaccination priority areas.  So, again, unsurprisingly, the Healthy Places Index which included some disability data as a health outcome measure in an earlier iteration now excludes disability as a direct indicator.  Instead, disability has been moved to what the authors referred to as a decision support indicator.  I have to refer to the data analysts in the room to fully explain the reasons for ‑‑ the reasoning for this.  This action raises questions about how we want to tackle, including disability indicators in a useful way, not only in this area of highly sophisticated tool but others like it.  It raises the question of how to factor in environmental barriers to community participation from our viewpoint as a disability community.  For example, the index includes domains indicators for major issues like transportation and housing.  And yet were challenged to find ways for the tool to accurately reflect health disparity clauses that relate to people with disability.  Can the Community Health Inclusion Index have a role?  Probably.  The research findings reported by Joy Hammel and colleagues on disparities presented in community action reports on community of living and community participation also point to an important path forward on collection of data that not only can facilitate advocacy but can also augment tools like this Healthy Places Index, so people with disabilities aren't ignored or worse yet forgotten in times of community crisis.  It seems to me, what is important in this conversation is that researchers are, all of you and others, are focusing on understanding how the complex factors that contribute to the fabric of community are deeply interconnected and policies can be used to address barriers.  I think the challenge for all of us ahead is to increase the use of these tools and to integrate the data they collect with other sort of widely used algorithms, such as California Healthy Places Index.  It's really great to see the work that Joy Hammel and others have been doing to really open up the conversation and contributing to it.  Against the challenging backdrop we have the research outcomes that Lisa Iezzoni presented on and Kurt and Mell presented on the significant barriers that we all are still experiencing accessing healthcare.  I have to say that for those of us who have disabilities these findings only reinforce and support thankfully with data what we have known for a long time.  One of the most stark findings from Lisa's work 82% of physicians responding to survey they think people with disabilities have overall worse quality of life than others.  She said it two or three times, this is the fourth time we are saying it in the program today.  The fact that we have the data to support the experiences of many of us is crucial, I think, for any next steps that we take as a community to try to tackle these problems.  It's also important that we think about how to act on the fact that women physicians and safety net physicians are less likely than men or non‑safety net physicians to report less quality of a life for people with disabilities.  I found that finding really fascinating.  It just seems to me there are less in these findings about where ableism is most deeply rooted, what is needed to reverse it.  If you have a disability, or if you have a family member or friend with disability, as we talked about before the break, chances are greater you are going to appreciate and understand what living with disability is like because of that personal perspective.  I think the physicians working in the safety net programs are likely to have contact with significantly more people with disabilities than doctors in private practices.  And that degree of exposure and contact with disabled patients is likely to influence their attitudes and assumptions about the lives we need.  So, I have done work with our federally qualified health centers in the San Francisco area and who do serve a high number of people with disabilities.  We learn from focus groups that they generally do their best to try to accommodate disabled patients, if they can.  But practically speaking they have limited capacity.  So many actually don't have accessible exam tables or weight scales.  They have very limited knowledge in advance of about the needs of an individual patient coming into the clinic or on any given day.  A focus groups revealed while a few of the clinic staff heard of the ADA, we asked them to give us a show of hands and tell us what they think the law was, they don't have any idea what it is, what it means, what it does, how it works how it applies to them.  Interestingly, though, after hearing more about the ADA during a focus group discussions, they said they were excited to learn more and asked to be ‑‑ have an opportunity to hear more.  So, I even though it's difficult to find ways to engage in this kind of educational process, I think there is a lot of willingness to listen and learn, if we can find the pathway into providing this kind of training and overview of the ADA.  So, the healthcare research we heard about today reinforces the message that we need to be seen, we need to be participating everywhere, people are being educated to become doctors, dentists nurses and others in the allied health professions.  We need to be students and practicing medical professionals and we need to teach in those programs and participate in all kinds of research, not only as subjects but researchers.  It's high time that the research community, that's really pretty much all of us here today, take responsibility for embracing principles of disability justice by centering disabled members of marginalized research work as researchers mentor and mentees and practitioners and spokespeople whose voices are at the table.  We have to change the discussion about the ADA, from my perspective the law provides really great template for how to provide culturally competent care, yet most medical professionals think of it having handicap parking places or bigger stalls in the bathroom.  It doesn't really have anything to do with the work as clinicians perhaps they perceive it simply as being a burden.  The challenges still ahead include convincing medical professionals that something is common as a height adjustable examination table or ASL interpreter are some of the factors that contribute to and define healthcare equity for many people with disabilities.  The research that we heard about today gets us closer to this goal and makes the case for teaching disability competency, and requires it for licensure and certification and in continuing education courses, as Lisa mentioned.  California incidentally is requiring bias training and continuing ed and moving toward including disability in the implementing standards for the new continuing education rule.  I think there is hope for us in other states as well.  Kurt Johnson, Mell Toy's work reinforced what many of us know from a lot of experience.  There is crucial lack of accessible medical diagnostic equipment in clinician offices, even though the ADA has been in force and effect over three decades.  Kurt and Mell's work reminds us physician offices and clinics have architectural barriers, lack interpreters and have policies that create barriers for people with mental health disabilities.  These findings are supported by work I have done with Professor Nancy Mudruck with the work at Syracuse University.  We looked at ratings of 4,000 medical primary care physicians in California that had been evaluated using an 84‑item survey instrument.  I think one of the most interesting findings that came out of that work was related to the availability of accessible medical diagnostic equipment.  So 19% of 4,000 Medicaid primary care physician offices had height adjustable examination tables ‑‑ I am really thrilled to hear from Lisa Iezzoni that her more recent study shows those numbers are actually much higher among physicians she surveyed.  Perhaps actually we are making progress.  We also found a fairly high level of physical accessibility in the offices that, whose data we reviewed.  Not taking into account whether trash cans blocked the bathroom doors.  But bathroom elements themselves presented actually the most frequent accessibility problems.  Just as an aside, a colleague recently told me that her husband, who is a person of small stature, was told by his physician who charged no height examination table was available because it wasn't cost effective.  Of course, if you have a disability or know somebody who does, you need this equipment.  Chances are you have had the same experience.  The stories are just ubiquitous and have been decades, they don't change from one year to the next.  My own favorite story has to do with my own healthcare provider, which is a large system operating in Northern California.  In fact, they have accessible weight scales and that's the result of many, many years of ADA litigation.  But it happens to be mounted in an alcove, the lamps blocked by walls, it's bolted to the wall, it's intended to be portable, to be moved.  It's good I figured out how to weigh on the laundry scale.  We are most certainly challenged to understand why it's difficult to have them embrace accommodation.  Kurt and Mell's findings report all ‑‑ all of the things that we know so very well.  Lisa suggests a number of causes of health disparities among people with disabilities, among them are notable ADA fails including ineffective communication accommodation, lack of accessible diagnostic medical and diagnostic equipment, and inadequate knowledge about ADA mandates.  She also mentioned ableism attitudes, erroneous assumptions about people with disabilities.  One practical solution for at least one of the concerns we talked about earlier before the break, that would, I think, make the ADA a more effective valuable tool.  I think this is mentioned by others, would be for the Justice Department to issue scoping regulations that have pieces of accessible diagnostic equipment, that meet the Access Boards accessibility standards are required in medical facilities of various sizes and purposes.  Similarly, the Department of Health and Human Services could regulate this requirement, and is my hope that in the future they will consider doing so.  Medical providers were legally required to have accessible medical diagnostic equipment, doctors and other medical practitioners would come along with less resistance.  As it stands now individual disabled people are pretty much on their own making a case through personal advocacy or filing a case.  I was happy to see that Kurt and Mell's report on lack of functional limitation information and accommodation need electronic health records.  It always seems like a no‑brainer to me to include the American Community Survey disability questions in electronic health records, even though they ‑‑ we know they are not perfect questions.  If somebody says, we have a communication limitation, the drop‑down menu should appear asking what accommodation they need for the upcoming visit.  That accommodation should be flagged for the appointment.  As we know though, this has been quite a hard sell.  I have been happy to hear from colleagues at the models for including the data at several universities that several health systems are also collecting it.  Research I carry out at Syracuse with the federally qualified centers in the Bay area show if you ask these questions upon patient registering for care about 9% will identify as having a functional limitation that might require accommodation during an office visit.  How great would it be to have the information readily available as people make appointments for a medical visit.  I suspect this issue won't turn the corner until health information technology, electronic health systems observe clients want this information.  And/or that it's federally required by HHS or even the Office of the National Coordinator on health information technology.  Lisa and I had a recent conversation about this, she is not optimistic this is possible.  But let's throw it out for consideration again.  I was really struck by Michelle Putnam and Kerri Morgan's finding people responding to the survey said ‑‑ the things that would change their life, the most would be more personal assistance environmental modifications, improved help, and assistive technology reflects the practical needs of disabled people who are aging, but also their life experience which values understanding how life changing certain technologies can be.  Unfortunately, many health insurance policies, Medicare policies don't support the needs of older people with disabilities assistive technology environmental modifications and personal assistance.  Take, for example, Medicare's use of the ‑‑ Medicare's use of the in‑home policy.  Which requires that in order to be eligible for mobility device, such as a wheelchair, the person must require the device for use in the home for medically necessary reasons.  No consideration is given to whether or not the device is needed so the individual can travel around the community.  This old, outdated policy sometimes have the effect that an individual with significant disability isn't eligible for the wheelchair they need because it can be difficult to make the medically necessary case for certain independence enabling ‑‑ curiously companies involved in developing autonomous vehicles are concerned about the restrictive provision, they are worrying Medicare beneficiaries won't be available for wheelchairs with lockdown devices compatible with autonomous vehicles, because the devices aren't needed for the use in the home.  It's a barrier to creating ADA accessibility from their perspective.  On the private front, private health insurance it includes many policies happened the amount of money they pay for devices, such as wheelchairs or scooters, in some situations there are annual caps on the benefits, a thousand or $2000 is the annual limit.  It doesn't make much of a dent in you buying a $25,000 wheelchair.
And of course, private health insurance doesn't pay for personal care services.  So, these policy barriers prevent people from ‑‑ who are aging with disabilities who are ‑‑ or who have acquired disabilities as they age from getting the personal assistant services and technology, they need to continue to live independently.  These examples illustrate the limits in civil rights law, we need other policy levers to solve some of these many problems.  One bright spot is that the administration is championing funding for Medicaid home and community‑based services, this is a growing recognition.  We have to find ways to meet the personal care needs of an aging generation as well as younger people who have extensive disabilities and require support to live independently, but who are often on long waiting lists.  This hard‑won policy circles back around to the impact of the independent living movement, the disability rights movement, the deinstitutionalization movement influence on the ADA's integration mandate, and the outcome of the Olmstead decision.  Financing trends tell us more Medicaid funds are now being spent for home and community‑based services than for institutionalization.  Even though Medicaid community‑based services including personal care services are not in and of themselves a requirement of the ADA, they are an essential tool that gives life and meaning to community integration.  Similarly, states such as Washington, have enacted social insurance statutes that working people can pay into and draw down later if they require personal care services.  California is exploring the same possibility.  So, my biggest worry, I believe at this point, is that based on the healthcare research we are hearing today is owed to the fact the public health community embraced disability as a bonafide demographic population.  COVID epidemic is shown, we simply aren't a part of the health equity framework as its currently understood as frequently touted.  Selling the idea that we should be ‑‑ we should be has been a daunting challenge.  I hope some of you listening today have had a different experience.  As we look ahead we have a lot of work yet to do to change this paradigm.  I just want to circle back to my earlier remarks about the use of the Healthy Places Index in California to identify communities hardest hit by COVID.  Advocates worked hard to have people understand marginalized communities of color targeted for COVID vaccinations included significant amount of people with color who had disabilities.  Unfortunately it was a difficult lift to convince officials to even use available disability data for these communities to help make policy decisions about how best to distribute vaccination.  The stark omission made it more difficult for people with certain people living in the area to obtain vaccination.  They ‑‑ these successes were not a function of public health systems or algorithmic tools or public health personnel's awareness of the ADA for that matter, they are fundamental belief on the power of advocacy and disability rights principles.  I am using the COVID experience as an example.  We are seeing other potential problems arising from this widespread omission of disability of public health.  For example, hospitals using algorithms to make treatment decisions, but we know the allegations are strictly racially biased.  It's quite likely many of them have no disability elements including the data use to create them, whether ADA violation remains to be seen, but we do know cases are brought because algorithms are made incorrect decisions about benefits eligibility.  Inevitably they are likely make the same poor recommendations in clinical care settings.  This is both and obviously an opportunity and challenge for the future.  Having said all of that, I really thank the researchers for their important work and contribution to these evolving conversations.  Policymakers can't do their work without you.  Thank you so much for the opportunity to reflect on the work presented here today.
>> KURT JOHNSON: Thank you so much Mary Lou, your wisdom is always appreciated.  I think that you have offered us some challenges.  That brings us to the conclusion of our State of the Science Conference.  We deeply appreciate your participation.  This was a great opportunity for all of us to review current research related to the ADA.  And I want to remind you that you can continue these discussions and follow work on our Facebook, Twitter and LinkedIn pages, and don't forget to subscribe to our newsletter.  On behalf of the staff here at the ADA Center, ADA KT Center it's been a real pleasure to be able to host this.  When you leave the zoom webinar, a window opens that allows you to do a survey with respect to today's conference.  And we really appreciate your feedback.  So on all of that, it's a beautiful day here in Seattle, I hope it is where you are.  And thank you again so much for coming.
(End of event)