Turning 26: A Review of the Current State of ADA Research

Turning 26: A Review of the Current State of ADA Research

Tuesday, May 17, 2016

OPERATOR

Good day ladies and gentlemen and welcome to the Turning 26: A Review of the Current State of ADA Research. At this time all participants are in a listen only mode. Later we will conduct a question and answer session and instructions will be given at that time. If anyone should require assistance during the conference, please press star and 0 on your touch tone telephone. As a reminder, this conference is being recorded. I would like to introduce your host for today's conference is Robin Jones; you may begin.

ROBIN JONES

Good afternoon or good morning everyone, depending on where you’re connecting from across the country. We’re glad to have you join us today for the ADA Audio Conference session for the month of May. Our topic today as you heard from our operator is Turning 26: A Review of the Current State of ADA Research. The ADA Audio Conference Series is a program of the ADA National Network. This is a monthly program where we address various different topics around the Americans with Disabilities Act. We have individuals today who are joining us both on the telephone as well as through the webinar platform. So we welcome everybody and as you heard we will also do a question-and-answer session at the end of the comments from our speaker. We are pleased to have as our speaker today, Robert Gould, Ph.D., who is a project coordinator of the Disability Rights and Employment Initiative located at the University of Illinois at Chicago within the Department of Disability and Human Development. You can read his full bio on website as it was posted in advance, I won't take up additional time at this time to cover all of those things but Rob has extensive experience working within the area of disability rights and working specifically with a focus on employment. For the past several years, he has been working on a project where he has been reviewing very interestingly the research as it relates to the ADA and that’s what we are going to cover today and hope that you find this topic of interest and get an understanding of really what’s out there and what's good and what's bad. So at this time I am going to— oh, and what's still needed—I’m going to go ahead and turn over the microphone to Rob and he will proceed at this time. So Rob, it’s yours.

ROBERT GOULD

Thank you so much for that introduction Robin. Good afternoon everyone and thank you for joining us. I am here on behalf project team here at the University of Illinois at Chicago and for the last five years now we have been looking across the full body of ADA research through a project funded by the National Institute on Disability Independent Living and Rehabilitation Research or NIDILRR and together this whole body of research is—hopefully will give us a kind of a brief snippet today of what's out there. Just an overview today, I really want to provide you with an overview of the ADA research to date to give you a basic understanding of what research exists. Also talk about why it exists, what kind of things have been tracked and why are they important and how these findings can relate to different aspects of ADA implementation and technical assistance and advocacy strategies. So we are reviewing some implications of research for practice. It is our hope that this overview can inform and support advocacy efforts and implementation strategies in your different areas of focus. So for today, I am hoping to talk for about an hour. I hope I won't gab too much so we have time for questions. I’m going to talk a little bit about the current state of evidence, going to some details about our specific project, I’ll talk a little about the research side of what we’re doing but not too much about that, following some findings we have about implementation and practices as well as looking at the ADA's impact on attitudes and social change. If we have time, I also want to look in to some of the areas that we have been gathering specific contextual evidence and the ADA impacts to try and get a more nuanced understanding and one of those areas is within health care and I will give an example of what we know in that area. Not necessarily to make you experts but to just kind of give you an understanding of what we can do in the future and what kind of information we can gather and hopefully supply people who are interested in that.

So a lot of effort's really gone in to tracking progress about the ADA for 25 years and a lot of effort went in to celebrate those 25 years such as ADA legacy projects and ADA 25 celebrations and as the ADA soon turns 26, I hope this session can help us reflect on what needs to be achieved and what still needs to be done. I am a researcher and I am specifically talking about the academic research evidence on the ADA. We know that research doesn't always match what we see in practice. So if you listen today it might be helpful to reflect what type of information that is missing from presentation, as all I will discuss a little bit later on how we have worked with a number of key ADA stakeholder groups including representatives of ADA National Network to confirm aspects of the research but also reaches a wide range of groups and I am sure that everyone on the phone has additional personal experience and other forms of evidence that can inform implementation. So the question to ask yourself during the presentation about this—these findings is are there areas of implementation of progress that you are expect to be captured in the ADA research to be findings that are—this do they match what you have seen or what you know or think about the ADA and report on gaps and research and practice.

So when we think of the research on the ADA and its legacy we know that the impact of that ADA extends well beyond a list of rules and regulations. The slide you have in front of you is from an ADA anniversary march that took place in New York City in 1993. You might recognize some advocates in the front row that includes Markov Bristol, Paul Miller and Justin Dark. Together what this slide shows is that we really are looking beyond statutory compliance. When we look at the ADA in terms of both research and measuring its efficacy as a social policy. The broad reach of Civil Rights is well beyond the court system and also assessment of the various social fabric as well as the social movement collectively of people with disabilities. So what I am saying here is that the ADA's reach is very broad and reflectively the social science research trying to understand how the law is impact people with disabilities is also broad.

So many are aware that the ADA is often cited as an example of bipartisan coalition building and politics and we start looking at some of the evidence that really reflects this bipartisan notion. There’s widespread reporting across different media outlets that reflects celebration from last summer including media outlets that tend to sway left or right politically. The headline on the screen reads “25 Years after Passage, Americans with Disabilities Act Has Improved the Lives of Millions.” Other news sources, such as the Huffington Post called the ADA the Independence Day of Americans with Disabilities. Furthermore, we know that the celebrations have not just been up on the national level, we hear, of course, of advancement in municipal implementation to be planning as well and I think this is important to think about for practice where we realize that we aren't just celebrating successful litigation but also thinking about advancements that have been made to our very identity, our social structures, that often avoid the need for formal complaints or even the direct use of the statutory framework. This head line is from the Buffalo News, which says, the ADA’s 25th anniversary marks the celebration of progress which was actually talking about a local regional celebration that took place in New York last year. Now, if we look at the news from last years, it is not all butterflies and roses. Other headlines point to the need for more and also guess where we might imagine to somewhat actually of different areas that we would actually imagine to be within the reach of ADA’s anti-discrimination framework. The headline on your screen reads, “After 25 years of ADA workplace struggles remain.” Well, some imagined the ADA in 1990 as a cure all framework for disability discrimination. Many others involved in the policy process also realized that there is need for further implementation into both new and existing programs at the same time. Some skepticism or worries that was prevalent in 1998 was sometimes seen as empathetical for the excitement of the potential legacy of implementation of the law.

Some people were excited about seeing the ADA in practice but others were realistic and weary that the ADA would not the—we see this remains true in many of the headlines and assessments of the ADA's progress 25 years later. The headline on screen reads ADA 25, important gains but gaps remain. This assessment probably rings true for of many of us working in advocacy policy or service provision and people still face participation barriers in all domains of social living. Everything from employment to transportation to social participation to just a few areas that fall under the previous purview. Participation levels have remained relatively stagnant but that would give us overview or overstatement of the ADA's impact.

Next headline reads discrimination doesn't end on the 25th anniversary of the ADA also from a Huffington Post editorial that talks about the many years that people with disabilities still are experiencing discrimination. We haven’t ended it in spite of the civil rights framework. Generally, the pieces that we have seen talk about barriers that are not necessarily [unknown] of law but rather talk about the limits of what is super rights law. From 25 years of research, we know that social change is often more indicative of activities advances of social movements and other aspects that may be outside the reach of law itself. Even if people are able to use the ADA to get in the door to work, equal rights are not a guarantee of fair and livable wages.

While many of the pieces are I'd say generally neutral in spite of the bipartisan roots to the ADA we often see a different story being told as well much popular in the media. The social significance of ADA is hard to debate. Did becomes more difficult to what to believe given different representations of the ADA in much of the popular media. Two recent columns answer the same question how has the ADA changed attitudes towards disabilities and this column that appeared in USA Today on the date of the ADA's 25th anniversary titled how disability law went nuts it answers that Americans attitude have become far more compassionate over the 25 years unnecessary conflict threatens this progress and we see clear implications of how people perceive the ADA from this column. The news week that week, said "we as a society expect more for people with disabilities. This disability is now a positive differentiator. You cannot legislate disability, identity and pride but ADA and the civil rights movement around it has taught young people with disabilities to keep their expectations high". Two very vantages of what it means to change attitudes about disability. We see similar disagreements that can be tracked by 25 years of media coverage, Public perceptions, and research on the laws of social impact.

Now looking at the specific article however I think that a few important notes to see some of the way this information is echoed since the ADA's inception. The first is that people want to talk about the ADA and work. Work, a huge part of our culture and society and also ADA implementation. ADA is not employment law per se but it is where we have seen the most litigation and also the most research. The second part that I highlight of this article is that the ADA is often thought of law of good intentions. I will talk about this notion more lately in my presentation and implications for attitudes and compliance where individuals event frequently mischaracterize what civil rights mean and why we have antidiscrimination law. If you hear buzzing in the background. It looks like they have taken the time no mow the lawn underneath our office window. Sorry for the extra feedback you are getting.

The last point that I want to show and kind of highlight on this article is this idea of endless lawsuits. We know that attitudes and research often come with this common criticism that ADA has endless lawsuits and absurd federal decrees. The law primary place for enforcement is in the legal system. We will talk about some factors that contribute to misunderstandings about the law and what they say and do and why it is important when people talk about the ADA as a lawyer's dream answer. What does it mean when we talk about its efficacy as a social policy? So, I have given you an overview of some of the perceptions in popular media and this is a good introduction. We can get angry at some of these disparaging representations and we look at source of 25 years of confusing and fragmented research there a lot of evidence about the ADA out there or at least summaries of ADA claiming to be evidence. There is constant disagreements and it is really prevalent throughout the ADA research across all the different titles that exist. Hopefully today we are going to start clarifying what we actually know and what we don't know. An important finding that has come out of our study is realizing that the research only gives us a partial picture of the ADA to date. A lot of the evidence actually exists in our stakeholder experiences and on the ground perspectives that may provide a better understanding or nuanced understanding of the ADA in practice.

A long standing critique as cited in Peter Langtry from 1994 to ongoing debates that happen in Congress about the ADA. Bob Dole pointed to the fact that a lot of people didn't want to research the ADA early on but he thought this was something really extremely important to make sure that we know how the law is doing. It took a while to get the research about the ADA often as a result of the ADA being an unfunded mandate. There is no central clearinghouse for data or research information about the ADA. Anecdotally even strong disability advocates were worried about collecting data about the ADA for the fear it would be used to reform or repeal the law if powerful lobbyists got ahold of information related to cost or potential headaches about implementation. Luckily through a lot of activism we started to collect more research and we saw that some of these concerns were not as great as thought to be. Early research went as far to show the most accommodations are free and still today they continue to be mostly free and often under $50. This type of research information has been really important to continue the implementation and support for the ADA at the federal level.

So what do we know from the research? Really depends who you ask. As I mentioned, there is no central clearinghouse about the research about the social impact about the ADA. If you are interested in looking just about the legal data, www.disabilitystatistics.org and they provide the evidence from the legal trajectory. Looking just at the legal trajectory gives a partial picture but I think it is important to kind of remember what's out there. Some say that the legal evidence was really indicative of a failed law in the late 1990s. Especially the policy failure was that many people were not actually able to even hear their disability discrimination cases in court due to ongoing narrowing of the definition of disability in the legal system. We can look at statistics from that time from late 1990s to 2006, 87% of cases that were heard in this period were actually resulted in dismissal or pro-defendant summary judgments. What this means in plain language is that people were almost always unsuccessful in proving discrimination under the ADA until the ADA amendment in 2008. Of course, it is as many of you know the ADA amendments provide a list of impairments regarded as disabilities and major life activities or a limit action in any one of these activities named on the amendments non exhaustive list automatically means one merit protections and one—hasn't necessarily experienced discrimination. Many now are viewed that the legal framework is fully intact. Roughly 25 years after the law's initial passage. So we have just now getting to some of the legal questions that we would expect to see from the ADA passage. The social science research looking at social change gives us a little doubt that the ADA is however changing the social fabric of society and becomes a little bit fuzzy when we dig deeper and there is substantial debates about its advocacy and what we use to assess the ADA's impact.

Overall in 2007 the National Council on Disability noted this there is surprising lack of any ongoing systematic data collection about the ADA from any source and the result is significant knowledge gaps about many aspects of the law's impact.

We can look to some of the general trends just to see where we have areas of promise and areas of concern. But we also have to look at this information with the caveat that some of these are beyond the reach of the ADA. Furthermore, the research is often very difficult to look at these huge changes in society and say it is directly because of one thing. We know that there has been a lot of other factors that have impacted the participation of people with disabilities over the last 25 years. Some areas of promise include that notion that we are finally seeing the legislative impact intact following the ADA amendments and also we have evidence of enhanced structural reliability and compliance over the last 25 years. Areas of concern however relate to a stagnant labor force and we haven't seen the employment rate of people go up. It stayed the same for about 30 years and we also know that people with disabilities are actually experiencing poverty at a higher rate when compared to people without disabilities and this is slowly increased for about 40 years now. So some areas of concern at the national level that we want to look deeper in to different factors knowing that the ADA is just one part of the many solutions that works towards addressing these areas of concern.

So through this knowledge about the current state of evidence is what brought us to our current research project. Due to the significant knowledge gaps related to systematic data collection about the ADA's impact we receive funding from the Federal Government, specifically through NIDRR at that time and the Department of Education and collate the research about ADA to get a better understanding of what research exists. And the hope is by getting all this research in one place we can start increasing the use of ADA related research to inform behavior and practices and policies. The goal of our research is really to give you a descriptive idea of what's out there. Not necessarily to do new research but perhaps to suggest what's missing and give you an understanding of what has been done specifically about the ADA to date.

Just briefly we have been doing this over five years. We are in the fifth year of our funding now. The first year of our funding we looked at how the ADA has been studied to get this broad idea of what's out there. Through that—after that we worked closely with a number of national stakeholders to really make sure that we are looking at priority areas related to ADA research. It is so broad and it would be impossible to look the all data and really get nuanced understanding on what is working and not working. So we had to make some choices of specific areas of research to focus on. Our Expert panel includes representatives of the National Council on Disabilities, Mathematica, The U.S. business leadership network as well as key researchers and policy gurus who have suggested areas of content area expertise to help us decide where to look at ADA information.

And our project started by looking at over 30,000 records about ADA information. We had to start going through hopefully for the purpose of making it more accessible for all of you and to anyone who might use ADA information. We really want this information to be out there and better used in the future and we are working about planning for the future about specific plans to get this in to practice.

We ask three specific questions along the way. As I mentioned, we started with looking at all the research together. I really don't want to get too hung up on the research practice. At the end of this presentation I will post some links to the publications and technical report that gives more information about the research process if that's an area of interest to you and I am more than happy to answer questions about research process during the Q and A as well. As I mentioned we started with over 30,000 records about the ADA that are out there. And we looked at over 100 different sources of information including unpublished reports, including different national organizations, as well as academic literature. We have got this down to 980 records that specifically look at the ADA. And when we started looking a little more closely is to make sure the information we are using is only of a certain quality. We ended up with 290 studies out of all the information out there, those were the other than ones that we felt actually made the grade that actually gave research information while reporting and making sure that it is clear how this information was obtained. The point here is to reduce bias making sure that the best information is out there and you notice in the fourth step of our research process we did a coding, looking at the ADA's influence in three specific areas. If we have time today as I mentioned I will look at—I will talk a little bit about the health care research. I will talk more about the attitudes research as that was a cross cutting issue across ADA. And this summer we will be looking at specific review about the ADA's influence in relation to disclosure.

Very briefly not necessarily a surprise but to give some context about the current ADA research, some areas that have been hot button issues related to practice—and implementation and legal world have not actually been studied in the research or may not actually even be very specific to the ADA. For example, there is growing work at the federal level and emergency preparedness but there has been virtually no research today about progress in relation to the ADA. Other areas with less common findings include voting. Some most common topics are related to employment. Almost half the research data is about employment and the next most common is related to education. One of the findings that was surprising to us is to who has been studied in the research whose vantage points are represented. Very little research across different stakeholder groups. Very large majority has been on business representative’s kind of ubiquitous term, looking at their perspectives about the ADA or about people with disabilities or on people with disabilities. What I mean when I say on people with disabilities we look at their broader participation but people with disabilities are less frequently engaged as research partners. There is very little research that actually includes the vantage point of people with disabilities and their experience using the ADA and what they have actually gained in practice.

So what do we know? Now that I have given an overview of what's out there. I want to make sure that we start getting little bit in to the findings we talk about some of the findings across all the different titles and different areas of research. One of the caveat that is very important to look at the project as whole is in coding the research there is a gap often in terms of practice and research evidence. It often takes years for findings to be published because this we know very little of what's happened since 2008 after the ADA amendments much of the research to date happened before the time. So we have a limited understanding and only partial knowledge from the research.

Across the research we do know however through I'd say 20 years of evidence that we have growing reports of compliance. Well, before we get too excited we have to know this is often overstated. We note partially from the body of research that ask people to report about compliance, we also see people then following out to a go and check on compliance. This body of research shows a huge gap that people are likely to overstate their efforts and may actually not be giving accurate reports of how far along they are with ADA implementation. We are also know about overstated compliance through knowledge gaps about ADA implementation that are throughout the research. People may rate their accessibility high, but then will admit to discriminatory practices on same survey. There are a number of surveys posted on individuals especially hiring managers or HR reps are very on board with hiring or accommodating people with disabilities and may be knowledgeable about the law but admit they have no formal systems to implement the ADA or have general concerns related added to attitudes and stereotypes about people with disabilities and I think this finding is relevant and I have implications for practice. For everyone on the phone who guide people towards ADA information or other entities that actually provide ADA information.

On the screen we have image of the disability rights museums on wheel as the tour is part of the ADA 25 tour. This is a powerful way of informing people about the law. It included education materials about the rights and responsibility under the ADA which could be compared with direct examples from the museum about the ADA and practice about success stories that describe how people with disabilities have actually benefitted from Civil Rights and also provide examples and incidents of discrimination. Throughout the museum we also have examples where people with disabilities do not have support or were kept silent because of overt discrimination or segregation.

These types of knowledge translation tools I think are extremely relevant for getting to that broader issue of compliance.

From the research we know the knowledge about how to comply as steadily increased over the last 25 years and we know how to make the ADA reality and knowledge in that regard there is still substantial gaps. Some of the main gaps from the research are related to program access, the process of providing accommodation and how do we set up systems to provide accommodation and also more complex applications of the ADA. Trying to confiscate this finding further, the ADA National Network hosts a knowledge translation center which is based at University of Washington keeps track of the type of information requests that come in to the ADA National Network. Their data has shown that while we are having increasingly complex calls so people want to have a more nuanced understanding of the ADA, it is actually a very small number of calls related to things like program access, this may demonstrate that there is a lack of understanding of more complex facets of ADA or basic awareness of both individuals and entities might not know about the complex practices related to the ADA. This is important education point for consumers that Civil Rights mean much more than physical access and we have to make sure that the information out there really relate this sort of nuanced understanding.

As promised I am going to talk a little bit more about what we know about attitudes and I think it is very important to kind of challenge these findings about knowledge. Attitudes and knowledge about disability are often studied hand in hand and I think that makes sense as we often think that achieving the ADA's promise is often a matter of educating society. But the research shows however there is a caveat here that we need to make sure that individuals are receiving the right type of education and information. The most common themes or way that the research has been studied E these are the factors that researchers have looked at to see how they impact attitudes and also specific areas where researchers have tried to find out what people think of them and related to ADA. There is over 20 different areas of how people have tried to study attitudes in relation to the ADA. These are areas where we try and see do these impact attitudes. For instance, if we have more knowledge does it give us better attitude and also we try to see how the ADA impacted attitudes about the specific areas. For example, how are the ADA challenged how people view accommodations, and also how they view the skills of abilities and cap abilities of people with disabilities.

The best quality evidence we have to date and how we actually get people to improve attitudes about disabilities is through increased social contact. This is about a research called contact theory. We have the most evidence if not to say that this is the only factor or even the leading factor to makes people improve attitudes about disability. Just the leading factor for which we have research evidence. When I talk about these specific areas a little bit more detail I want you to remember this is what we have research evidence about and we don't always know if this is what matches up in practice. Now I mentioned we have been working closely with the ADA stakeholders to confirm our findings and also to make sure that these reflect what people are seeing on the ground but gives us a brief look to date. But at some point, we have to present these findings, research a powerful advocacy tool and we have to see what is missing when we look at the broader aspects of the ADA's influence in these areas.

So if you remember what I said about ADA knowledge before, we remember that one of the findings we know that individuals will often report being highly compliant and accept the idea of the ADA but then will actually report concerns about disability. The most common concerns about people with disabilities we saw from the reviewing findings were some potentially paternalistic attitudes about productivity, safety and reliability of workers with disabilities and these findings echoed in very recent national data looking at the workplace of people with disabilities. Very important report from the Kessler foundation that was released in 2015 about workplace experiences with people with disabilities is reported that three most common barriers of people in the workplace are getting less pay than others and reporting attitudes on the part of their supervisor, discriminatory or reporting attitudes on the part of their coworkers are discriminatory and you might see these numbers in the teens and think that's kind of low. The numbers are much higher where about half of people with disabilities for each of these categories have reported overcoming these issues in the workplace. They have experienced discriminatory attitudes in the past even if they are not a current barrier to employment experience.

So together this research explains a common problem that you might also experience in advocacy and you might get a general Rosy picture if we don't dig deeper, if we are asking people what do they think about disability inclusion or ADA, people are unlikely to report discriminatory attitudes or practice even in anonymous research. This means that the rate of discriminatory attitudes may be higher than what actually being reported. And but also know we are not getting the whole story.

If we go back to the slide I showed early on the disparaging of ADA we might get a better idea about the full picture of the ADA's impact where attitudes about disability only give us a partial indicator about one's likelihood to accept the promise. Attitudes about disability are extremely complex and it is more difficult to capture prejudice of calling equal rights for people with disabilities absurd federal decreases that article goes on to say.

So we expect that popular media disparaging the ADA is closely connected and reflects one of the most surprising findings that came out of our review. From reviewing the research we know that the knowledge of ADA does not necessarily cannot brace of disability rights. Just because we educate people about the law does not mean that they will like it, that they will like the idea of disability inclusion and take broader social goals to heart. Positive attitude, so saying that we accept people with disabilities does not match up to practice. Individuals and organizations are unlikely to feel noncompliance, internal biases or prejudice or more systematic issues related to disability discrimination. Increased contact is often been thought of the best way to address these attitudes. However looking specifically about the ADA research increased contact has shown to have an inverse relationship with attitudes towards disability rights.

That is the more we contact people with disabilities we don't necessarily have a broader embrace of the ADA. And what's useful here is to look at the research. This doesn't mean that the disability exposure meeting people with disability leads to averse version of disability rights. That's not at all what the research says or what I am trying to say here but it does need we need to be careful in how we obtain and use ADA information, specific types of ADA information the types that have been studied in the research I think show a connection to an aversion to the law and practice. We know that compliance as well as embracing the spirit of the law is not the same as looking at avoiding litigation. Exemplify I want to look the two more articles to give an example of how information that makes people more aware about the ADA can really miss the picture about the broader social goal. We have two headlines that actually convey some similar aspects about how to implement the ADA but very different meanings. The first reads how to avoid your business becomes an ADA target, and second is how to comply with the ADA. This first article that comes from ADA using dot com is one of the most commonly visited sites for ADA information. If you note from the focus on kind of curb appeal or making a profoundly or glanced effort to make your facility is often seen as an important aspect of compliance. This article really looks at the idea of avoiding litigation. When it talks about how to do this it really talks about making a haphazard attempt and you want to put on the side of compliance, making sure the commonly seen aspects of your business, organization are compliant but not going to the full practice of looking within your organization to make sure you are meeting the ADA's goals.

The second notion here is that training matters. And I think that's commonly reported and agreed upon but not that this is a private firm here that provides training specifically about the topic in question avoiding litigation rather than compliance. Provided the link if you want to see in my opinion example of what not to do in terms of embracing the spirit, social goals of ADA and actually achieving as goals and practice.

This next slide which comes from a different private website comes from ink.com which is a private website that gives information to people in the private sector. And my goal today is not just to disparage people working on covering the ADA and research media and there are some good examples. Article by Tim Donnelly uses sources such as labor, [UNKNOWN] as key informants and sources. So you will see some of the same information from the previous article basic information about the first steps of rehabilitation and also talking about the purpose of the law first and foremost and broader social message. I think this type of information really is what gets the message of the ADA out there and it may have a much more positive impact about changing attitudes about disability in practice.

The content follows suit and provides a talk about a comprehensive review instead of a surface check of your accessibility features. Compliance and implementation is much more than looking at physical access. So not that I'm in any way providing legal advice here but full implementation throughout an institution to me seems like a much more complete way of avoiding litigation by meeting compliance head on, and also working towards the broader goals of ADA to ensure equal access to people with disabilities is met across all facets of an organization. The message I am trying to get here is check your sources of where you getting your ADA information. Where are you directing people to get their ADA information? Are you directing people to ADA information at all? The danger here is that the wrong type of information not only misses the point but as research confirms can actually have a detrimental impact on achieving the overall goals of disability and civil rights. Some other important findings that impact practice here relate to organizational culture and I think are closely related to some of those ideas that I already talked about. Organizational culture refers to ways that ADA shapes responses to disability in the workplace and other institutions as well. Fairness is a key factor here of how organizations have embraced or fail to embrace the ADA. Anticipate a response to requests for accommodation. So whether they will be seen as fair or not, often play a role in one's likelihood to request them.

Perceptions about fairness also play a role in the willingness of individuals to provide accommodation. So fairness is closely linked and see ADA as a special form of treatment. I think this is unfortunate but realistic truth that's been captured in the research evidence. On one hand I think it is really important advocacy piece to show that people with disabilities have nothing to be ashamed of in asking for accommodations. There are many folks that think that open discussion is an essential part of achieving the ADA's goals. On the other hand we know that misperception and discriminatory attitudes do continue to exist and accommodations are misunderstood as special treatment sometimes. I think relatedly not natural supports which include programs to increase exposure of people with disabilities are largely documented as the main way of combatting these perceptions of special treatments so combating the idea of civil rights or special rights. Natural supports come in many different forms. You might be talking about top down diversity strategies and building flexibility to organizational roles responsibilities. Across the board organizations have really strongly supported success with this type of approach to facilitate full compliance as opposed to keeping disability hidden and often unaccommodated.

So you might not think of an after work social event at the bar or restaurant as a diversity strategy but when we consider disability and strategies to combat this issue of it being seen as a special law, and ensuring that all aspects of participation are accessible, it becomes a way to foster relationships and exposure thought as a conduit to open communication and full implementation across organization for change. So implementation doesn't necessarily have to a formal policy or program. But it is really reflected on all the different ways that we embrace disability and make sure that inclusion happens throughout the day and after.

So what does it mean from the research when Civil Rights are seen as special rights versus when they are seen as equal rights? And there is a number of factors documented in the research admittedly understudies. So it is hard to say how wide spread these issues are could happen when the ADA is seen this these different vantages. When the ADA is seen as a special rights people are less likely to grant accommodation and access is viewed as unfair which, of course, can relate to bigger problems within organizations. Some of these issues can lead to hostility and distrust and while this is problematic for workers without disabilities we know it is problematic for people with disability especially and can actually relate to larger complaints when they experience greater hostility or discrimination in the workplace. When the ADA is seen as actually is as a matter of equal rights we have documented evidence of some very positive factors in terms of organizational change. We know that entities are more likely to comply with ADA. We know that individual—that entities are more likely to report disability as an aspect of their diversity strategy. We see more widespread documentation of natural policies and supports. And what may be a very important issue to some we actually see an aversion in avoiding a formal compliant process. We prevent discriminatory practice before it becomes a problem and before the ADA is needed as response to discrimination in different aspects.

So special rights are not just about practice. But are a larger sign about problems and what discrimination looks like. Others less research to prove especially because very few studies have taken the perspectives of people with disabilities we know the theme rights to special treatments speak to larger more overt discriminatory practice or attitudes that may be taking place behind closed doors. I have a quote from one widespread studies from two researchers at Roosevelt University that looked at mechanisms of disability discrimination and what people with disabilities experience when things like special when rights are seen as special treatment.

One of those findings they said is that pejorative and prejudice attitudes towards noncompetitive job incumbents were reportedly fortified by resentment and worker with disabilities got a free ride or an easier job. And what attitude looks like in practice. Discriminatory attitudes are much more hurtful than just being seen as special treatment.

And we know that this is widespread applications for practice, too. We know that the problem of disability rights being seen as special rights is really common, even if it is not as well documented as we would expect to see in the research findings, many of you out there probably are very familiar with the issues of service animals, a lot of times we are seeing increasing litigation on this front where people or entities rather will have no pet policies and we know that this can actually have a widespread disparity impact. Meaning that people who use service animals who are not pets might be forbidden from entering organizations who think that they are actually just making one law, without a thinking of ramifications. Although some have taken steps to what I think is a positive way of embracing the social change by postings signs that say that service animals are welcome but we continue to see lots of complaints against service animals and this is a clear practice of misunderstanding, disability equal rights as special rights.

So special rights is one example of what discrimination looks like. Another important finding is related to disability origin. Attitudes linking discussions about accommodation are highly often talked about origin or called the attribution of authority. How individuals are blamed for causing their condition. Often time conditions that we think are more commonly attributed to an individual such as injuries caused by drunk driving, substance abuse, and mental illness are less likely to be considered meriting accommodation. Some of these more highly stigmatized disabilities are seen as less deserving of equal protection under the ADA. Of course, as hugely problematic there is evidence of one area that we continue to see discrimination. It is also really complex finding. When we actually use the legal research to inform our knowledge here we don't have heighten rate of narrative resolution. So we don't actually see people being able to prove discrimination at a higher rate. Even though they are much more likely to accuse disability if they are from one of these protected groups. They are not having a good time proving discrimination. So there is not necessarily evidence of acting upon discriminatory attitudes but this points its much more difficult for these groups to prove discrimination in the workplace related that much higher stigma in association with their impairment types. If you interested in looking at legal side more, EEOC research project gives some specific information about the case law literature. If you want to look more on the side of research and just briefly I want to talk a little bit about the ADA research on health care to switch gears. A lot of findings I think support and are related to what I have already talked about the wider social impact about the ADA but we also know a few more areas from the ADA research on health care that might be of interest to you so look at a for nuanced understanding about the ADA's implication.

Some of the key themes and findings reflect what we see in the broader body and also some of these speech to a really lack of research in key areas. While we can make some assessments about the ADA's impact in areas such as health care we also know that we don't have a lot of good information out there. While we do have is in terms of findings relates to implementation, we know that from the research initiatives to implement the ADA often come as a response to litigation instead of embracing the spirit of ADA early on. System change actually taken the broad ideas of ADA is often thought with improving attitudes. When we look at knowledge specifically to entities involved in health care, there is evidence that many are unfamiliar with ADA's purpose and practical applications of the ADA similar to what we saw with the broader body of research. The need for ADA information is well documented. However we also know that this is a very weak intervention. For those of who want to help and actually start giving more ADA information or connecting people to sources of ADA information, we know that information alone is not necessarily that useful. There is a lot more different ways about how to get change according to the ADA. Especially when we look at compliance there is more evidence of physical access over more complex issues of program access and this speaks to the information that people received. We are not getting the information out there about some more complex understandings of ADA as well as its broader social goals.

Moving on just to say what this means as a whole, we really saw a key—three key findings emerge from the research on ADA and health care. The first is that there is this idea of lack of understanding of access beyond basic compliance. However the research also rarely goes beyond the question of compliance. We need research that gets to the participatory side of things to really get the perspective of people with disabilities and practice. Now I think there has been a lot of good examples about entities bringing this information together, especially if you are—if any of you are familiar with DREDF, the Disability Rights Education Defense Fund and they have been collecting health care stories of how people are impacting are used ADA and are experiencing better health care. However, the research hasn't caught up with some of advocacy pieces out there. We know that research is a powerful advocacy tool and we really need to do a bet der job of capturing the perspectives of people with disabilities. And the second finding is related to knowledge. There is limits of implementation as I said about what ADA specific knowledge is done.

We know that entities overstate their knowledge and administrators in particular in health care settings often report kind of an incomplete knowledge based. Similar to the research across the ADA more complex questions which are becoming the norm in terms of ADA implementation aren't at the forefront of their knowledge. We know this is related to information gaps which is our third finding we found from the research and there is cycle of misinformation out there. And it starts with medical student who have a cursory knowledge of ADA and also about disability. Many of these medical students become practitioners or administrators. Starts with poor knowledge and poor exposure from the get-go which needs to misguided implementation and these are just some preliminary findings that we hope to with some key stakeholders this summer to figure out how we start addressing these issues and to dig deeper in to some causes of what is making these gaps in implementation and knowledge. So to sum up what we have talked about today there are some common themes across the reviews related to different areas of ADA implementation. For attitudes stigma and blame, are commonly related to disability discrimination. Contact theory exposing peep to disability is thought of one step but we need to make sure that comes with the right types of knowledge and the right type of ADA information to make sure that when we are exposing people to disability inclusion that we are doing it in the right way. And related to employments we know a partial picture about the ADA's research. I didn't get in to the research on employment rates on purpose today. Even though that's the most widespread issue about the ADA research. We actually have been advised that's kind of a standstill in looking at the ADA' the overall finding. That's just one partial aspect about the ADA's long-term goal. We know much more about it and more nuanced understandings in relation to aspects about knowledge, attitudes, and barriers to accommodation.

So some key take-aways for today, reviewing what I talked about is that attitudes on our own are not necessarily linked with further embrace for rights. I think that is the direct implications for practice need new ways to get information and one aspect that we talk about quite a lot is really embracing the concept about disability as diversity. Especially this is linked to evidence of increasing structural access organizational compliance and the ideological support of inclusion which is something that needs to be taken not just at surface level but throughout an organization's implementation plan. We do need more information and best practice about what this looks like in practice. You will see from research I gave you a very introductory view. We know some ideas about what's working broadly but we don't know specifically about what some of these idea, what organizational practice looked like in practice. There is not a lot of detail about best practices today. Part of this is because we very infrequently use different disability stakeholders. There is so many people impacted by the ADA that we haven't tapped in to yet four informants about ADA information. We have limited knowledge about the success for stories out there whether from implementation plants, from city governments, businesses, as well as people with disabilities there is very few research studies out that really document the success stories. Part of this has to do with idea of individuals not wanting to talk about potential discrimination. So in addition to the success stories we also note very little about the opposite side unsuccessful stories. We need to do a better job of capturing what these look like in practice. To really get a complete overview of how the ADA is impacting the lives of people with disabilities. And I think this speaks to one of the largest gaps about ADA information that was recently reported in 2010. The national organization on disability reported that 60% of people with disabilities believe the ADA has made no difference in their lives. We need to do a better job of getting the ADA information out there so that it be used as a tool. There might be people who are using the ADA that benefit from ADA on a daily basis but don't know this has been a monumental aspect of the disability policy over the last 25 years.

Some take-a ways, some lessons learned from our research this gives us some exciting and worrisome news that we are seeing the legal interpretation of the protected class. This research only includes—I shouldn't say only. Mostly include information up until the ADA amendments we have very few data points after the ADA act of 2008. We know we have a partial picture and we know that we need to continue looking beyond research and looking in to practice. We need more innovative ways of engaging with disability groups as partners, story tellers, Translation experts and dissemination gurus that make sure that ADA information is being used and valued.

The next steps for our project is as a whole over the summer we are going to be finalizing the findings related to health care and disclosure. So, if you are interested make sure you check on our website and you can see some of those findings that come out from those areas. We also hope to try and make this information more accessible. We have all this research in a giant database and make sure it is easy accessible to all different types of groups that might want to access ADA information. So ongoing we really need to establish more best practices to seeing how the ADA can be used and Excel them and beyond compliance and diversity and what really makes excellence in ADA implementation. We need to increase understanding about how ADA information is used and we need to make sure we are talking to the full gamut of people with disabilities and other advocacy groups that are impacted by the ADA. And a special thanks to our expert panel these are the group of 12 individuals that have helped us along the way and given us quite a bit of guidance to make sure our findings are on point and gives us direction in terms of need and ADA research and information. Thank you to all the people who are on this slide. And now I guess we'll have time we have about 25 minutes left for questions. And if you are interested in following us as I mentioned our technical report is available online at adata.org/research and we also have three publications online and 2 of them are open access online in the journal disability studies quarterly and if you are specifically interested in the research process, I am happy to share upon request our article about the research process which appeared in the journal WERC. Thank you all very much for listening today and now we will open it up to questions.

ROBIN JONES

Great. Thank you Rob and I know that's a lot of information and a lot of detail for people to absorb as a group. At this time I would like to ask if the operator would please give some instructions for those on the telephone and how they can go about asking questions and then we will look at what questions might have come through electronic means. Thank you.

OPERATOR

Thank you. Ladies and gentlemen at this time if you would like to ask questions, please press star and then 1 on your touchtone telephone. If you want to remove your question or it has been answered, please press the pound key. One moment for the questions.

ROBIN JONES

Great. Thank you very much. While we are waiting here I have some that were submitted electronically. One is person is asking how can disability organizations have more of a role or a voice in ADA research? Do you have any thoughts or any comments on that?

ROBERT GOULD

Thank you so much for that question and I think it is very, very important. I think it is a two way Street and research groups need to actively be involved in contacting advocacy groups and research can be daunting and also realize that maybe I contributed to the problem today by giving a ton of information. The goal is really to make sure we have involved in ongoing conversations. Especially I think in terms of local implementation things like town halls with local independent living centers are great way for researchers as well as advocacy groups to meet. I know as a researchers we are often at the town halls especially at independent living centers where people talking about Civil Rights and action and it informs what we do in terms of our advocacy and what we study and making sure that people show up and get the word out about what discrimination looks like, how they are actually using the ADA in practice, really help us to get a better understanding, especially we will never get a complete picture what the ADA is by reading and looking at the research today and we need to get out in the community and connect and collaborate.

ROBIN JONES

Good. Thank you. Another question everything you are saying are you saying that the majority of research over the past 25, 26 years on the ADA was "bad research" and how does it compare to research that's been done in other areas of rights, like gender rights or rights related to race and other rights groups?

ROBERT GOULD

That's a great question. So start with the first question. Is the research out there bad research. There is a lot of bad research out there. We did our best to review that met a certain quality. There is a lot of good research and that being said it only gives a very partial picture. I think there is bad research and that a lot of it gives kind of contradictory findings and I think the bad part of it is that we really haven't included people with disabilities. So it does a good job of getting to questions like employers' attitudes and I think those studies have been replicated to the point that we are ready for new ways of studying the ADA. So it is not necessarily just bad as much as we need some new directions. The second question, how does this compare to research on other groups that have had Civil Rights law and practices and I think is very important too, to look at what new directions we need to go in. Some of the issues I think are very similar to what was seen very early after the Civil Rights Act of 1964. Especially the issues of seeing equal rights being seen as special rights. That was really common especially when affirmative action was such a hot button issue and talked about in the media. The key difference here with disability was that there is an element of structural support that's often different than what we see for other civil rights groups. I am talking about reasonable accommodations here and I think that we have had a slightly different trajectory. We haven't had the complexity of research questions that we have seen from other Civil Rights groups, especially related to poverty and I think this is kind of the forefront of where we need to go in the future. We know broadly speaking that disability can cause poverty and poverty can cause disability and we know that people with disability have experienced poverty at a much higher rate. We know very little about what's been done to combat that. And we also know very little about people with disabilities who experienced extreme poverty. Part of that has to do with barriers about how research is collected. So many people with disabilities live in segregated settings or big institutions or jails for that matter where we often don't go to collect data. So research only provides a partial picture and I think in terms of poverty that's where we really need to go to not only catch up with some of the other research on civil rights groups but also to catch up on implementation which is a huge issue that needs to be better addressed.

ROBIN JONES

Thank you. Another question that was submitted, what are the messages about ADA research in general that should be taken back to researchers who might be looking to conduct research on the ADA in the future or funded to do so?

ROBERT GOULD

That's wonderful. I am going to go back to this slide if I can find it here. About attitudes about disability. So attitudes about disability I think are a huge widely studied aspect about ADA implementation and I think have a good proxy about thinking about ADA and social change. The key factor of issues for the researchers is the perception bias, this is the fact that I was talking about earlier where entities are unlikely to report noncompliance or discrimination. And this is important for practitioners, too, when you are actually going out in the community and working with organizations. We often don't get them to talk to us about what discrimination is happening, what barriers they are experiencing. In future experience we need to lift this vale of experience. We know that people with disabilities experience these barriers and we need to come forward and use different mechanisms to target groups that are doing good jobs or groups that we know are having these barriers. So using people that really have on the ground knowledge such as independent living centers, technical assistance providers, ADA coordinators. Going to them is kind of conduits. People who know where they are experiencing problem I think can be an innovative research strategy, using a wider group of people who have a more direct on the ground knowledge about the ADA and its implementation is going to get us better research. It has gone to the point where often these studies try and say does discrimination exist. Does it exist in different organizations? And where the bad research is saying that we know this. We know it exists. It is very difficult to characterize how often it does. But we need to get to how we change it. Where are the success stories? Where are the excellence in ADA compliance happening? Getting to those I think is going to be a key area for researchers to do better research in the future.

ROBIN JONES

Great. Thank you. So we have someone who has given a scenario and asking a question about that. This is someone who had medical care from a large organization that many facilities in different cities. This person had issue about lack of accessible forms. They worked with an Ombudsman on this issue and later they learned that the organization has a disability community to help the organization become more accessible. It is good that it is coming from the top down. Is there any—so the question is there any research to see these types of committees or practices are more successful if this involvement the people with disabilities as part of those communities of practice. Are you familiar with any kind of studies or research that is looked at of involvement of people with disabilities and whether that makes a difference is kind of the message there?

ROBERT GOULD

That's a great question. To answer the question does it make difference for people with disabilities to be part of committee? I really think we have to think about that because key advocacy have to look at nothing about us without us. In ADA specific research unfortunately I don't think that's an area that is studied at all. What changes when we bring people with disabilities to the table? However, the broader body of disability research over and over again shows that when people with disabilities are included and I am not talking about a funcfory or tokenistic way when we are taking decisions, we have more success at the table. Even looking back to early ADA implementation what made the ADA a successful policy from the get-go what got people so excited about it was early research was documenting people's experience of discrimination and what does it look like. Putting a face to it and getting those life stories of people with disabilities. In 1986 the National Council on Disability released a report called towards independence which included over 2,000 first person accounts of people with disabilities experiencing discrimination and that used to shape the law itself and it is related implementation plan. So I think what this person on the phone is getting to is a huge and important aspect. Unfortunately it is poorly captured in ADA research. Important for future research. But if you look in the broader research disability, it is there. It shows time and time again it is essential to have people with disabilities involved in implementation at all levels.

ROBIN JONES

Great. Thank you. Another question for you here. A lot of people say that the ADA has done a better job of helping people who have already jobs rather than helping people who have looking for jobs. Does the research actually support that? Is that anecdotal that people are saying or is that something that is supported by some of the studies?

ROBERT GOULD

That's a really interesting question. Part of it I think has to do with this idea of people are always trying to find out did the ADA impact employment rate of people with disabilities. And what the research largely says to that is that that's really beyond what we can expect to be the direct impact of one law, especially of the civil rights law. And it has been literally hundreds of studies trying to look at the employment rate and what—they have come to conclusion that really is beyond the impact of the ADA itself to directly impact employment rate of people with disabilities. And I think that's important to remember when we think of the limitations of Civil Rights but also to have realistic attitudes of the change we imagined to see from the ADA. As far as helping people who want to achieve work we also know from the research evidence that hiring is by far the most difficult area to capture discrimination. The limited research out there about people's experience with discrimination over and over say they are experiencing it at the hiring level. A really interesting study came out of Cornell this year that actually used the common way of looking at all the laws where they mail the cover letters and only difference between cover letters was one person saying they have disability and one not and overwhelming the person with disability is getting less call backs and we know that discrimination exists before people get in the door, even if the research itself has not had a good time of proving that. And as for as the research goes yes, it does really support that idea. But people with disabilities are experiencing more benefit once they are in the doors. There is a lot of evidence about people who actually know about the ADA, know about the social goal really are more equipped to benefit from its in practice. And it is difficult to say that it is not helping people who are looking for work. Especially because the research really is not captured this to date and I think that's closely related to difficulty documenting in hiring. So closely related.

ROBIN JONES

Great. Thank you. Another question here is will this study that you are—that you have done here where you are looked at other research be used by entities like funding sources to make decisions about what they would fund in the future?

ROBERT GOULD

That's a very important part of what we want to do with this. Part of our reporting duties as a project as a whole. We will go back to the NIDILR, National Institute on Disability and Independent Living and Research to give us an overview of where we see the gaps are. We also have taken into account of all stakeholders who have worked with us as well as any feedback. If you see gaps that we didn't talk about today encourage you to get in contact with us. So NIDILR is one of the biggest funders of disability research in the U.S. When we go back to them I think this will have clear implications about the type of research about the ADA and about the disability that's funded in the future. So it is really a great opportunity for everyone to get involved, too, we really do take in to account the on the ground experience for people who have worked with ADA to really make sure that we are capturing and portraying evidence in a way that reflects what people are seeing in practice.

ROBIN JONES

Thank you. Operator were there any questions queued from the telephone?

OPERATOR

I am showing no questions the line.

ROBIN JONES

Thank you. We have a question, what will the future research include emergency preparedness for people with disabilities and how—and if so, how would envision that might occur?

ROBERT GOULD

That's a really good question and I—I won't pretend to know about than I do. It is not an area that I personally look in to and where we have some experts who have worked closely with us who might have a better understanding. I do think future research will start looking at that. It is a huge hot issue especially related to both climate change and interest in emergency preparedness and terrorism. I heard anecdotal both from the National Council on Disability and Department of Justice they are very interested in looking at these issues in research and practice. So I think when it gets that interest at the federal level it is very likely that it will be studied more. I don't have a good idea or suggestion for studies about how to do that at the moment but a wonderful question. Thank you for sharing.

ROBIN JONES

We have another question here. What are barriers to addressing some of the barriers to ADA implementation that you discussed today?

ROBERT GOULD

I was a little confused on the wording at first but think that makes sense. So what are some of the barriers to actually using this information? Part of it I think that it is so fragmented. A lot of ADA research if you Google will be in a million places. And more we can get it in one place the more we can turn it in to plain language findings I think the more useable it is. One part of our projects that I forgot to mention is in the future we have hoping to make quite a few one pagers that looked at these issues. We want to turn each of tease in to one pagers. When people have questions about what research exists they can quickly access and get plain language summaries. I think another barrier has to do with the complexity of not only research findings but what disability discrimination looks like in practice. There is that finding I talked about earlier where sometimes people might say sure, we would love having people with disabilities part of our communities and love having them as employees but when you actually drill down deeper they don't have that same sort of appreciation for the ADA and when you actually need to work to educate individuals it is not a one-off time. It takes time to really understand the ADA as a whole the broader social message and what disability civil rights mean and that's one step and then you have to get to the is he research. Education process is often slow. Because that it is really important that we have really talks like this today that we continue to have more collaboration and talks between advocacy groups implementation gurus, researchers to make sure that that translation gap is shortened in time and practice.

ROBIN JONES

Great. Thank you. Thank you very much. We are getting down to the bottom of the hour at this point. So I just want to check with the operator were there any questions from the telephone at this time?

OPERATOR

Still no questions on phone line.

ROBIN JONES

Okay. So at this time I would like to thank our presenter, Dr. Robert Gould for sharing the results of this project in the study and the depth of knowledge he has collected about the 26 years worth of research and you heard and probably you have lots of stories to tell about all of the documents and the reams and reams they went through to call down to get to some of the meatier stuff and some stuff that is out there has been published that is not meaningful and poorly designed or poorly done but hopefully we can learn from that and in the next 25 years going forward that more rigorous research will be done and that research can be readily used by people with disabilities and communities and other organizations to help understand better the ADA and how it impacts the lives of people with disabilities importance of it from a disability rights social justice perspective and that we learn more about the world that we live in as it relates to these issues and what makes them beneficial and some best practices. You will be receiving an e-mail at the end of the session today which will contain an evaluation. We do appreciate and value your feedback. So ask you to make sure that you fill that out. Also give you information about the availability of the archive of today's session and when that will be available as well. We invite you and welcome you to join our next session which will be held in June 2016 and focus on the rights of veterans with disabilities in employment and housing and transportation and we have representatives joining us from Veterans Administration and from the equal employment opportunity commission for that session. We typically hold the session on third Tuesdays of the month. We are holding the next month's session on fourth Tuesday of the month. Largely individuals involved in the session and program will be involved in the national ADA symposium which coincides with the third week of June. So we have moved the session to fourth week of June. So please note that they changed. If you have not registered already please go to www.ada-audio.org and register for the session but again make note of the date change if you have it on the regular calendar for the month of June 2016 there is a one week difference. In July, we will go back to the regular third week of the month’s schedule So again thank you very much for your participation in today's program and thank you to the speakers and everyone can have a great day.

OPERATOR

Ladies and gentlemen thank you for your participation in today’s conference. You may now disconnect. Everyone have a great day.