July 27, 2021
Amplify Inclusion Podcast
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.
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.
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.
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.
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.
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?
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.
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.”
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.
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.
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.
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?
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.
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?
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.
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.
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.
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.
Clare, anything I can do- it’s been my absolute pleasure. Thanks for thinking of me and asking me.
Of course, and we’re excited to have you back August 5th to continue the discussion.
Yes ma’am I look forward to it.
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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