S3. Ep. 2
Andrés Gallegos (Part 2)

Date

July 27, 2021

Time

21 minutes

Category

Amplify Inclusion Podcast

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Welcome to Amplify Inclusion, a podcast where we share authentic stories of inclusion in action.

Andrés Gallegos, National Healthcare Attorney and Chair of the National Council on Disability, continues discussing barriers to healthcare for people with disabilities and identifies comprehensive solutions. Listen now or view the full transcript below. 

This episode was co-produced and engineered by Subframe Sound with music courtesy of Nealle DiPaolo. This season is made possible thanks to generous contributions from First Bank of Highland Park and members of the Aspire community.


Full Transcript

Clare [00:00:01] 

Welcome to Amplify Inclusion. I’m Clare from Aspire. Thanks for joining us for a real  stories and conversations about the power and importance of disability inclusion. Today,  my conversation continues with Andrés Gallegos, National Health Care Attorney and  chair of the National Council on disability. I met with Andrés recently to unpack some of  the barriers to healthcare for the disability community. In the process, Andrés opened  up about his own experience and his commitment to health care and disability rights. In  our last episode, Andrés shared his personal journey. Today, Andrés and I discuss his  recent publication in Health Affairs titled, Misperceptions of People with Disabilities Lead  to Low Quality Care. In our conversation, Andrés referred to a recent study led by his  colleague Dr. Lisa Iezzoni of Harvard Medical School. 

Andrés [00:00:01] 

But her and her colleagues conducted a national study and the study revealed that over  80% of physicians in the country view people with disabilities as having a low quality of  life. And there are ancillary studies that say that how physicians view people is how they  treat them. And what we know from personal experience and from being a disability rights attorney and being focused on accessible health care, is that physicians and nurses attitudes towards you as a patient will determine the outcome of an encounter  with your physician or with your nurse or with any healthcare provider. So how they see  us is how they treat us. This information has been out there for decades. Lisa’s study  was not the first study to come to the conclusion. There’s been ample number of studies  that speak to the same issue. And these studies are published in health journals that  are peer reviewed, that are in very prestigious publications, and their talked about but  nothing’s done. The headline that said “physicians view people with disabilities that

have a low quality of life and impacts health outcomes,” it got picked up by the press  and there was like a shrug of the shoulders, an “oh, well” a “so what?” kind of reaction  from the general public. Imagine Clare, if the study was different and it was a different  headline- pick any minority group. Whether it be women, whether it be black, whether  be Hispanic, whether it be Asian. Pick a religion- Jewish, Muslim. If that study revealed  that 80% of the health care, providers view, people of the Jewish faith to have a low  quality of life, the reaction wouldn’t have been one of silence and one of acceptance. If it  said that 80% of physicians view people who are Black or people who are Hispanic as  having a low quality of life and that negatively impacts health outcomes and their health,  again, there’d be much more attention being paid to this and it would have been  covered with much more urgency and awareness than it is where people disabilities.  There seems to be a general acceptance that this is okay when it is absolutely not. And  that’s what we’re trying to address. 

Clare [00:03:28] 

Yeah, it’s an incredibly staggering alarming percentage and you even liken discriminatory bias within healthcare to a virus that people with disabilities have been  fighting for years.  

Andrés [00:03:41] 

There’s this insidious virus that exists in healthcare and that people with disabilities  know, and those who love us know, those who are paying attention also know- and that  is you know healthcare simply hasn’t embraced people with disabilities. People with  mobility disabilities cant get their own physical examinations because we’re examined in  our wheelchairs; people who are deaf and hard of hearing are not provided with sign  language interpreters when they go to emergency rooms or go see a doctor, they’re in  for surgery; people who are blind are not given written information in alternative formats  so that they can read on their own. People with intellectual and developmental  disabilities are not provided care in a competent manner and are being prohibited from  bringing in comfort animals. We can go down each category of disability and talk about  how health care continues to discriminate against them, despite the fact that it’s been  nearly five decades since the passage of The Rehabilitation Act and- and we’re just  over three decades since the passage of the Americans with Disabilities Act. Those of  us who know better, we have an obligation to speak up, we have an obligation to do  something about it.  

Clare [00:04:50]

Mhmm. While you were writing this piece, I know you mentioned the anger, you know,  that was really deeply embedded in that writing process for you. Did you have specific  instances of discrimination that you’ve personally experienced in mind while you were  putting this to paper? 

Andrés [00:05:07] 

Clare, absolutely. One of the reasons and one of the impetus for launching our national  disability rights practice is shortly after my accident in 1996 when I returned to work in  1997, I went to go get an eye examination right across from our office. And I went in  there to speak to the optometrist on staff and schedule an eye exam and she told me,  she said “look- if you can’t independently transfer from your wheelchair onto the  examination chair, than I can’t see you here.” I said, “Okay, you’re a chain and you have  other locations here in the city- which of your locations here in the city can I go to get an  exam? She goes, “No, you’re not understanding. You can’t go to any of them. We can’t  treat you. You can bring somebody with you and they can carry you on to our exam  chair, then you’ll be examined. But if not we can’t examine you.” And so of the seven  leading national eye care providers that have a presence in the city, none of them can  provide me examination unless I was able to transfer onto the examination chair. So  what ended up happening is we asked around it and that specific problem was not  unique to Chicago. It was happening all throughout the country. And so, we took legal  action, and, and ended up having to file seven class action lawsuits to get the issue  addressed against all the seven leading providers of eye care exams. And so now when you go to one of the national eye care providers, if you’re in a wheelchair, you don’t  have to get out of your wheelchair. The examination chair moves so that you can  position yourself in place and all the equipment that you need for a proper examination,  comes to you instead of us having to come to it. So, that’s just one example. Receiving  a physical examination- it was a struggle, trying to convince my regular physician that  he has to transfer me onto an examination table in order for me to get a proper physical  examination. One year though, when he wasn’t available, I had scheduled a physical  exam and one of his partners came in to do the examination. After he examined my  upper body. He just took a step back and said I assume everything below, the waist is  fine. And that was really a rhetorical question because with that, he left. I expected fully  at that point, they would transfer me onto the examination table and I can get a proper  exam, but that, that didn’t occur. So, I mean, those are the most egregious of things that 

have happened to me. There’s been other instances where, again, I just, if I take you all  night and end up in the emergency room, I really have to plead to get the assistance  that I need and to have somebody transfer me when I’m not able to transfer.  

Clare [00:07:50] 

So many layers, and it ranges from tangible things like equipment to mindsets, training,  right? And I want to go back to something you note in your piece which is just a quote  you you say, “the breadth of the problem is already clear. It does not warrant more  research.” 

Andrés [00:08:08] 

We don’t need the research. What doctors view us and how they view us, I mean the  information, the results are out there. We need to be focusing on solutions. We don’t  need to be looking at why people with disabilities have health care disparities- we know  that. There’s a considerable body of literature that informs those who want to be  informed, why we struggle with health disparities. Why we are leading in seven different  categories of health outcomes compared to our non-disabled counterparts. Among them  is in the area of diabetes, in the area of asthma, high blood pressure, hypertension,  cardiac issues. These are things that happen because of the absence of our mobility but  also the absence of health care providers being able to treat us on a consistent and  thorough basis to prevent these conditions and the onset of these conditions and when  they do appear, to manage them in a very early stage as opposed to at a late stage  where perhaps, it’s irreversible. So that information is out there, those studies exist. We  don’t need to focus on that. What we need to do is to address these issues, admit that  they’re there, and find solutions to correct them. And that’s what we hope to do at the  National Council on Disability. 

Clare [00:09:28] 

And you did identify multiple calls to action in that piece, as well. So, you know, you  mentioned state and federal policy and you also emphasize the need for increased  focus on what you referred to as disability cultural competency for medical  professionals. So I’d love to hear you, explain what that would look like if it were  effectively in place.  

Andrés [00:09:52] 

So let me give you the example of paralysis and mobility disabilities. We are not all  alike. Paralysis can come as a result of multiple sclerosis, cerebral palsy, spinal cord  injuries. There’s other conditions and traumas that lead to paralysis. And so how you  interact with somebody that has a spinal cord injury as opposed to cerebral palsy as 

opposed to MS, is significantly different in each particular category. And then for people  with intellectual and developmental disabilities, how physicians interact with them and  having an understanding of how to treat somebody who has autism and who’s on the  spectrum as opposed to somebody who doesn’t have autism, but it is intellectually or  developmentally disabled- that makes a difference. There’s different care plans that can  be developed to care for each segment and each category of people with disabilities. So  back in 2010, the Affordable Care Act, the Patient Protection Affordable Care Act,  otherwise known affectionately as Obamacare, required, the Secretary of Health and  Human Services to develop core competencies to be then used in model curricula to be  adopted by all medical schools, all dental schools, all healthcare-related schools, for  them to incorporate as part of their basic curriculum on disability cultural competency.  What it means to be a person with disability, what each category of disability is and how  the best way for physicians to interact with us and how to treat us. And unfortunately,  that wasn’t done, that was never funded. And so that that wasn’t done, that still remains  the law that the Secretary of Health and Human Services was supposed to come up  with this model curricula to be adopted. So one of the things that we’re doing at the  National Council on Disabilities, trying to get that funded and trying to get the current  administration to develop that curriculum to be instituted and incorporated into all  healthcare related schools, that becomes part and parcel of the basic training that they  receive. So we believe that education is critically important, and education in the area of  disability cultural competency is important, and it would improve how physicians view us  as people and how they view us as patients and how they interact with and how they  ultimately treat us. So, we’re hoping for that to occur and so that there would be  curriculum that’s developed and adopted by dental schools, medical schools, nursing  schools, and is taught as a regular and consistent basis. So we’re hopeful, we’ll see  what happens there.  

Clare [00:12:39] 

Well, speaking of action, the National Council on Disability released a new report  specific to accessible medical equipment. Can you talk a little bit about the report and  what it means for progress? 

Andrés [00:12:50]

I go back to 2010 with the Affordable Care Act. One of the requirements under the  Affordable Care Act was for the U.S. access board to develop standards for accessible  medical diagnostic equipment. It’s things that we’ve talked about so far. It’s weight  scales, its height, adjustable examination tables, it’s height adjustable examination  chairs. It is diagnostic equipment, like x-ray machines and mammography equipment  that is not readily accessible for a person with a mobility disability. So in 2017, the U.S. Access Board, which is a federal agency that is charged with coming up with standards  and designs for access to be implemented under the Affordable Care Act or the  Americans with Disabilities Act. And so it develops these standards for manufacturers of  examination tables, manufacturers of medical diagnostic equipment once the U.S. Access Board created those standards- and it took him seven years to create- they are  merely voluntary standards that can be adopted by a healthcare system or healthcare  providers. The only health care system that adopted those on their own was the  Veterans Administration. The Veterans Administration saw the benefit, the significant  benefit, for its veterans with mobility disabilities. So while the VA adopted and  embraceable standards uniformly, no one else did and so until those standards are  adopted by the Department of Justice that has primary enforcement oversight over the  Americans with Disabilities Act, they are not enforceable standards. There are merely voluntary standards. So one of the things that we’re requiring and asking by issuing the  report we’re really speaking to both Department of Justice and the Department of Health  and Human Services Office of Civil Rights, we’re saying, “look these standards were  created, the need exists, the need for their creation still exists and it’s even more  prevalent today. And therefore, adopt these as part of your regulations and your rule  making and make these mandatory.” And then once they’re mandatory, the Department  of Justice and Health & Human Services can also start to specify the numbers. So once  there are standards and once they become part of regulations, then it’s incumbent upon  us, people with disabilities, to enforce those regulations. And that is if a provider does  not have the equipment when it is now legally mandatory they have it, then that’s where  we need to enforce our rights and compel them to obtain that equipment.  

Clare [00:15:32] 

So I can see how these are big changes in policy that can have a significant impact.  And I’m thinking about the average community member who may realize, this is a huge  issue and they’re thinking, what practically can I do? So, I wonder if you have any tips 

for action steps, folks can take if, you know, they don’t feel that they have a place at the  table where some of these policy conversations are happening? 

Andrés [00:15:58] 

Clare, one of the things that I do in my private practice, our disability rights practice, in  the manner in which we advocate for the rights of people with disabilities in the  healthcare space is that we use education. We use advocacy and then, when  necessary, we also use litigation. So I have provided an Accessible Healthcare  Workshop, which is anywhere from two hours to four hours depending on the breadth of  issues covered. If it’s just dealing with one category of disability or it’s addressing the  needs of all categories of disability. But what we do is we educate people with  disabilities and their family members and there are advocates on how to be the best  patient advocate they can be. We’ve come up with a program that we call ‘Acting Bad’  where we want people to look at patient advocacy as an organized process for things  that need to be done before the appointment, after the appointment, and during the  appointment. But it’s being your best patient advocate, and starts with understanding  what your legal rights are, what the legal obligations are of healthcare providers. Then  how to be your best advocate by doing certain things, to make sure that you’re getting  the things that you need to make your health care visits as beneficial as possible. So it  starts from there. It really does.  

Clare [00:17:18] 

You mentioned earlier a Health Equity Initiative and I wanted to give you an opportunity  to speak more about that because it sounded like something you were really passionate  and excited about. 

Andrés [00:17:28] 

So Clare, there exists within the healthcare space, a category called Medically  Underserved Population and this is a designation that Department of Health and Human  Services can make in defining a particular population in the United States as being  medically underserved. And with that designation, then resources are funneled to  healthcare providers that want to specialize in the issues- the health issues- affecting  the medically underserved population. And resources are followed by way of loan  forgiveness for physicians that want to focus on issues affecting people with disabilities,  for instance. If they want to focus on Health Care issues affecting either people with  paralysis people with mobility disabilities, people who are blind or have visual  impairments, people with intellectual or developmental disabilities. And so, in addition to 

the loan forgiveness as an incentive to get healthcare providers to focus in on this area,  the National Institute of Health which is one of the largest funders of health research  would then have money dedicated and allocated for the medical community, to focus on  research, for addressing the health disparity issues, affecting people disabilities. So one  of the things that we’re looking to do is get all people with disabilities designated as a medically underserved population to allow those financial resources to incentivize  healthcare providers to focus on medical issues that are affecting So that’s just one  element of a health equity plan. We’re at the very early stages of talking to the medical  community experts in this area to getting input on what the components of that plan is  going to be. We’ve had preliminary conversations with the president’s administration, getting their initial reaction to what, what this would look like. And they’re incredibly  supportive. And so, within the next couple of weeks, we’re hoping to make an  announcement here to the community of what we’re trying to pursue because we are  going to need the community’s help to get it passed. 

Clare [00:19:35] 

Andrés, thank you so much. I’m- I can’t tell you how honored I am to have your time and  for you to join me today. And I personally just want to say, I think it says so much about  you as a leader and a person that you’ve made time for conversations like this right here  in your local community, with a local Chicagoland nonprofit. So, I just really appreciate  you sharing your story and all the incredible work you’re doing and just thank you for  being with me today.  

Andrés [00:19:59] 

Clare, anything I can do- it’s been my absolute pleasure. Thanks for thinking of me and  asking me. 

Clare [00:20:03] 

Of course, and we’re excited to have you back August 5th to continue the discussion.  

Andrés [00:20:08] 

Yes ma’am I look forward to it. 

Clare [00:20:11] 

I’d like to thank my guest Andrés Gallegos for sharing his story and insights. We hope  you’ll join us for our upcoming event, where Andrés and other local leaders will discuss  building disability equity in health care. Click the link in the episode description to  register now. Until then, be a part of the Inclusive Movement by rating and subscribing  to Amplify Inclusion. This episode was co-produced and engineered by Subframe 

Sound. This season is made possible by generous contributions from First Bank of  Highland Park and members of the Aspire community.

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