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Health Affairs' Leslie Erdelack and Ellen Bayer give a peek behind the curtain on Health Affairs' new Disability and Health theme issue.
Health Affairs This Week places listeners at the center of health policy’s proverbial water cooler. Join editors from Health Affairs, the leading journal of health policy research, and special guests as they discuss this week’s most pressing health policy news. All in 15 minutes or less.
00;00;08;24 - 00;00;18;17
Ellen Bayer
Hello and welcome to another episode of Health Affairs This Week, the podcast where Health Affairs editors go beyond the headlines to explore the health policy news of the week. I'm Ellen Bayer.
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Leslie Erdelack
And I'm Leslie Erdelack. And today we are taking you inside the pages of the October issue. It was released earlier this week, and it's one of those special issues where all the content is focused on one theme and this month, for the first time ever, we publish an issue dedicated to exploring the relationship between disability and health. So Ellen, it's out right now.
00;00;47;07 - 00;01;11;29
Leslie Erdelack
Everyone can and you should go check it out because thanks to the generous support provided by the Ford Foundation, the Robert Wood Johnson Foundation and the MacArthur Foundation, you can read everything free of charge. And we have, I think, some really important and thought provoking pieces in this collection, we'll of course drop a link to the landing page for the issue in the show notes.
00;01;13;03 - 00;01;32;22
Leslie Erdelack
But these types of thematic issues, you know, they are really long time in the making. And Ellen, you're in a really unique position, I think, because you've actually been there from the start as the editor who was assigned to oversee kind of the development of this issue. So what was that experience like?
00;01;33;22 - 00;02;07;10
Ellen Bayer
Yeah, thanks, Leslie. So disability and health is an issue that's personally very meaningful to me, based on experiences in my own family. So I'm especially grateful to have worked on this issue and as we always do for theme issues, we started planning about a year ago and we brought together scholars and advocates from all around the country for a planning meeting, and we were so fortunate to have had two fantastic theme issue advisors, Lisa Iezzoni of Harvard and Massachusetts General Hospital and Javier Robles of Rutgers.
00;02;07;21 - 00;02;29;15
Ellen Bayer
So we talked about a lot of things in that meeting, and I just want to highlight a few ideas that especially resonated with me. And the first is the issue of universality. I mean, disability affects all of us in one way or another at some point in our lives, whether directly in our own lives or through the experience of family members or friends.
00;02;29;28 - 00;02;55;09
Ellen Bayer
And as Lisa Iezzoni says in her overview paper, in the theme issue, the disability community is a minority group that anyone can join in a flash. The second idea is the concept of inclusivity, and there are many kinds of disability. And often when people think about disability, they may picture someone in a wheelchair, for example. And of course, that's one type of disability, mobility disability.
00;02;55;19 - 00;03;24;13
Ellen Bayer
But as we think about disability and as researchers try to develop tools for data collection and policymakers try to develop policies and programs to meet the needs of people with disability, it's important to take an inclusive view and to account for all kinds of disability like vision and hearing disabilities and intellectual and developmental disability, and also disabilities that are sometimes referred to as invisible, like ADHD and autism and psychological disability.
00;03;25;08 - 00;03;29;06
Ellen Bayer
And the third theme I want to point out is the idea of flexibility in language.
00;03;29;23 - 00;03;54;14
Leslie Erdelack
Yeah, I'm so glad you brought that up, Ellen, because this was on my mind a lot when we were working on this issue. And if you read it, you know, you'll notice that the authors of these papers alternate between using the phrase people with disabilities and the term disabled people. And I used to do a lot of work on substance abuse and treatment issues before I came here.
00;03;54;14 - 00;04;28;23
Leslie Erdelack
And it was always about emphasizing person first language. When you're talking about a person in recovery or a person with opioid use disorder. And, you know, it's this idea of putting the person before the diagnosis so that you're not, you know, perpetuating the stigma around addiction and those sorts of things. And so I think I carried with me this way of thinking in approaching disability, you know, assuming that the preference for person first was universal.
00;04;29;03 - 00;04;39;23
Leslie Erdelack
But that's actually not true. And there's actually a great deal of variation in the preferred language among people with disabilities, right?
00;04;40;10 - 00;05;06;19
Ellen Bayer
That's right, Leslie. And so as Lisa Iezzoni and others have explained in the 1990s, after the enactment of the Americans with Disabilities Act, the use of this person first language, as you mention, referring to people with disabilities, was the preferred approach in the disability community. And then as time went on, there was a shift in preferences, particularly among younger people with disabilities, to use identity first language and refer to disabled people.
00;05;06;29 - 00;05;19;13
Ellen Bayer
So as you pointed out, you'll see both of these approaches in the theme issue articles, and that reflects different preferences in the disability community. So Leslie, you were also involved as a senior editor for the same issue. What are some of the articles that stood out most to you?
00;05;20;06 - 00;05;49;19
Leslie Erdelack
Yeah, it's a great issue, but I keep coming back to this pair of articles focusing on physicians. And the first one is by Tara Lagu and colleagues. And you can actually hear her talk about the study with our Editor-In-Chief on this week's episode of A Health Podyssey. But in this article, they describe what they learned from holding focus groups to try to understand the barriers that doctors are facing as they care for people with disabilities.
00;05;49;19 - 00;06;19;25
Leslie Erdelack
And they talk about some of the challenges related to providing physical, of course, and other accommodations for these patients. But I think the really troubling finding here has to do with the discriminatory attitudes toward people with disabilities. So some doctors described the ways that they discharge and discourage people from being seen in their practices or, you know, otherwise sort of finding ways to deny them care.
00;06;19;25 - 00;06;43;26
Leslie Erdelack
And, you know, the point that these authors make, you know, what they're arguing is that these kinds of attitudes in the health care setting toward people with disabilities is really inconsistent with the mission of medicine and public health. So I think that's a really powerful takeaway. And then the second article by Lisa Meeks and her colleagues actually looks at how physicians themselves are being mistreated.
00;06;43;26 - 00;07;31;18
Leslie Erdelack
And so they surveyed physicians and found that compared to their non-disabled peers, physicians with disabilities had a higher likelihood of experiencing every type of mistreatment and harassment, including verbal threats and physical harm from coworkers and patients. And physicians with disabilities are already underrepresented in medicine as it is. And this paper makes the case for reexamining not only the types of workplace protections in place, but also how ableism and ableist attitudes are affecting the physician workforce and so these articles, and I would say most of the papers in the issue really kind of suggest that it's not only health care in the practice of medicine that we need to change, we need to work to change
00;07;32;09 - 00;07;58;22
Leslie Erdelack
so many systems at the same time to address, you know, systemic inequalities for people with disabilities. And I would say for me, one of the most important takeaways from this issue is that people who have disabilities need to be included as leaders in this work, particularly disabled people from groups that are historically marginalized. Right. And this is actually one of the key principles of the disability justice movement.
00;07;59;00 - 00;08;22;03
Ellen Bayer
Leslie, I'm really glad you mentioned the issue of disability justice as Alina Engelman and her coauthors explain in their paper. Disability Justice calls for a movement that involves working for structural changes similar to what's needed to achieve health equity. And if I had to name one concept, I would say that equity is the common thread that weaves together all of the content in this issue.
00;08;22;25 - 00;08;48;27
Ellen Bayer
The overview paper by Monika Mitra and her coauthors makes the point that disability is not the same as poor health. And even though disability can sometimes make health conditions worse, it's important to understand that there are lots of structural and systemic factors like inequities in employment, in education, housing and the health care system that lead to significant disparities in health and health care for people with disabilities.
00;08;49;16 - 00;09;24;05
Ellen Bayer
And we've seen this particularly during the pandemic. Of course, it didn't begin with the pandemic, but it became readily apparent during the pandemic. Paper by Ilhom Akobirshoev and colleagues shows evidence of delayed care and unmet needs among people with disabilities during the first year of the pandemic. Another paper by Willi Horner-Johnson and her coauthors reported that people with disabilities were more likely than people without disabilities to have smoked during pregnancy and have delayed prenatal care, premature births and infants with low birth weight.
00;09;24;15 - 00;09;41;01
Ellen Bayer
And the authors pointed out that disability often isn't identified in clinical settings and people with disabilities who are of childbearing age, often aren't asked about plans to become pregnant. So there are lots of missed opportunities for things like preconception planning and counseling for smoking cessation.
00;09;41;16 - 00;10;09;26
Leslie Erdelack
Another thing that's really concerning is the fact that we just unfortunately don't have reliable estimates on how many disabled people there are in the U.S., you know, let alone the kinds of health services that they might need. And you talked, Ellen, about people with disabilities not being identified, but they're also excluded from clinical trials and other activities that would allow us to capture important data and insights on this population.
00;10;09;26 - 00;10;30;28
Leslie Erdelack
And if you don't have good estimates, you know, in the absence of this kind of data, it can be more challenging to construct effective policies and programs for people with disabilities. And I was glad to see several articles really in this issue with recommendations on how we can do better.
00;10;32;11 - 00;10;58;04
Ellen Bayer
So I know we're running short on time, but before we wrap up, I just wanted to point out two more things you'll find in Health Affairs this month. The first is we are so excited to be able to feature original artwork by people with disabilities. Thanks to artists from Art Enables, which is a gallery and vocational arts program in Washington, D.C., that makes it possible for people with developmental and cognitive disabilities to earn income from their original artwork.
00;10;58;26 - 00;11;22;08
Ellen Bayer
And I also wanted to mention an article in our Leading to Health series this month that describes a really innovative employment program that's part of Tennessee Medicaid. And it's for people with intellectual and developmental disabilities. And it's called Employment and Community First Choices. And since having meaningful employment and the ability to earn a living wage are so critical for the health and well-being of people with disabilities.
00;11;22;15 - 00;11;24;26
Ellen Bayer
I just wanted to point listeners to that piece as well.
00;11;25;11 - 00;11;53;00
Leslie Erdelack
And we also have two events coming up. So if you're a Health Affairs Insider, you can join us on October 17th for a Professional Development event about optimizing accessibility and health services research. And then on October 20th, we will be hosting our monthly Journal Club featuring a conversation with Dr. Susan Chapman, who published a study this month on the availability of personal care aids services in the US.
00;11;53;13 - 00;12;13;24
Leslie Erdelack
So tons of great stuff happening in conjunction with the October issue on disability and health. And thanks, Ellen. I think that's it for us. You know if you liked the episode? Go ahead and leave us a review. Subscribe to the show and of course, tune in next week.
00;12;14;20 - 00;12;29;07
Ellen Bayer
Thanks so much, Leslie.