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Health Affairs Editor-in-Chief Alan Weil interviews University of Massachusetts' Linda Long-Bellil on an overview paper she and co-authors published in the October 2022 issue of Health Affairs that found health disparities among people with disabilities exist along race, gender and sexual orientation lines.
Each week, Health Affairs' Rob Lott brings you in-depth conversations with leading researchers and influencers shaping the big ideas in health policy and the health care industry.
A Health Podyssey goes beyond the pages of the health policy journal Health Affairs to tell stories behind the research and share policy implications. Learn how academics and economists frame their research questions and journey to the intersection of health, health care, and policy. Health policy nerds rejoice! This podcast is for you.
00;00;00;02 - 00;00;36;11
Alan Weil
Hello and welcome to A Health Podyssey. I'm your host, Alan Weil. The October issue of Health Affairs explores the relationship between disability and health. Now conversations about disability often begin with the statement that one in four U.S. adults have a disability. But what does that mean? Disabling conditions are varied in the people who experience them are equally varied. A discussion of disability policy, its successes, failures, and what more needs to be done must begin with an accurate picture of the population with disabilities.
00;00;37;08 - 00;01;17;09
Alan Weil
What we mean when we say disabled, how we come up with estimates of the size of the population with disabilities and how to approach the health disparities we observe, are the topics of today's episode of A Health Podyssey. I'm here with Linda Long-Bellil, assistant professor at the University of Massachusetts Chan Medical School. Dr. Long-Bellil and coauthors published an overview paper in the October 2022 issue of Health Affairs on Disability and Health, utilizing a biopsychosocial definition of disability Long-Bellil and coauthors find that health disparities among people with disabilities exist along race, gender and sexual orientation lines.
00;01;17;09 - 00;01;27;26
Alan Weil
They make a number of recommendations designed to promote more equitable outcomes. We'll discuss these in today's episode. Dr. Long-Bellil, welcome to the program.
00;01;28;10 - 00;01;30;05
Linda Long-Bellil
Thank you very much. I'm pleased to be here.
00;01;30;16 - 00;01;51;06
Alan Weil
Since you wrote an overview paper, I think it's good that we start with some of the basics, particularly thinking about terms that tend to roll off the tongue like disabled. And one thing you start with in the paper is to note that even our conceptualization, understanding of disability has changed over time. Can you say a little bit about that?
00;01;51;22 - 00;02;20;29
Linda Long-Bellil
Well, let me just start by saying there's no perfect definition of disability, but the definition of disability has kind of evolved over time. Initially, it started with what we call the medical model, where disability was seen as purely a characteristic of the person, the characteristics of the person's body or mind. And then over time, activists in the disability community, starting in about the seventies, started saying, no, no, disability isn't located in the person it's located in the environment.
00;02;20;29 - 00;02;52;22
Linda Long-Bellil
It's the environment that's disabling. There are physical barriers. There are attitudinal barriers. That was what we call the social model. Over time, what has evolved is more of an interactive model of disability where elements of the person's body and mind, along with aspects of the environment, the physical environment, the social environment, attitudes, etc., are combined in this kind of synergistic relationship to create disability.
00;02;52;28 - 00;03;05;04
Linda Long-Bellil
That's where both health care and health policy happen and that's what they need to address. They need to address that the interface between the body, mind, and the environment.
00;03;05;16 - 00;03;27;29
Alan Weil
So that seems like a really helpful way to think about it. And it's interesting to see the shift from a purely medical approach. Now we throw around numbers of people with disabilities. I doubt we're probing all of the medical and social and environmental phenomena. So when we say a quarter of people have disability, where do we get those data from?
00;03;28;14 - 00;03;52;00
Linda Long-Bellil
That comes, that particular number, and there are different numbers in different surveys and they vary depending on the specific questions asked and the survey methods used. Those particular numbers, I believe, come from the CDC, which uses the behavioral risk factor surveillance system. That particular survey focuses on functional limitations, asking questions like, do you have difficulty climbing stairs, things like that.
00;03;52;00 - 00;03;57;10
Linda Long-Bellil
That's not an exact quote, but questions like that, that's where that number, that particular number comes from.
00;03;57;24 - 00;04;18;08
Alan Weil
Now, your paper is chock full of data, and I'm not going to ask you to read tables because that's not interesting on a podcast. But you do have a lot of data in there about the prevalence of disability and its incidence across various groups. And I wonder if you could just give us some of the top line sense of some of those topics.
00;04;18;17 - 00;04;43;12
Linda Long-Bellil
Well, let's see. Across racial and ethnic group, people who are black have a slightly higher prevalence of disability than whites. And this increases when you adjust for age. Latinos, Native Hawaiians, Pacific Islanders have a lower disability prevalence than whites. But when you adjust for age, those differences disappear. So members of the LGBTQ community are at a higher risk of disability.
00;04;43;18 - 00;04;50;04
Linda Long-Bellil
Folks who are gay, lesbian, bisexual, etc. are significantly more likely to be disabled than heterosexual individuals.
00;04;50;14 - 00;05;24;29
Alan Weil
So if I we're trying to figure out policies to reduce some of the inequities experienced by people with disabilities, if we start with, say, mobility limitations. So that's a prevalent disability. And you might think what kinds of interventions are needed to target that, and that would benefit some subset of the population. But others who have other kinds of impairments might say, well, that's great that that's there, but it really doesn't address the needs I have.
00;05;25;17 - 00;06;00;03
Linda Long-Bellil
Well, universal design is one approach. We didn't really mention that in our paper, but universal design is something that could benefit all folks with disabilities because it would mean that environments would accommodate people with a wide array of needs. Also compliance with the Americans with Disabilities Act, providing accommodations to people who are, you know, either have mobility impairments or who have visual impairments or hearing impairments, who are deaf or hard of hearing.
00;06;00;09 - 00;06;09;12
Linda Long-Bellil
Accommodating folks willingly and gladly would definitely go a long way in addressing some of the environmental barriers that people deal with.
00;06;09;25 - 00;06;37;18
Alan Weil
Well, you've introduced the topic of policy, which takes up a good portion of the overview paper. So I'd like to spend a little more time with you on, you mentioned enforcement of existing laws. The paper also mentioned some new policies that might be helpful. We'll dove a little bit more into that after we take a short break. And we're back.
00;06;37;18 - 00;06;59;15
Alan Weil
I'm speaking with Dr. Linda Long-Bellil, who is a coauthor of one of the overview papers in the October 2022 issue of Health Affairs that focuses on disability and health. The paper does focus on the issue of equity and the inequities that exist within the population of people with disabilities, as well as between people who have a disability and those who do not.
00;07;01;01 - 00;07;17;29
Alan Weil
You go into some detail about some things that we could do that would be helpful. Just before the break, you mentioned both universal design, which isn't in the paper, and enforcement of the Americans with Disabilities Act. Can you tee up some of the other policies that you mentioned that you think would be helpful?
00;07;18;11 - 00;07;49;17
Linda Long-Bellil
Sure. Well, the Affordable Care Act did a lot to improve health access to health coverage for people with disabilities by reducing the prevalence of preexisting condition exclusions, creating premium subsidies, expanding Medicaid in those states that agreed to expand Medicaid. Something else that I think could improve access to health coverage for people with disabilities is to improve the existing Medicaid buy in programs-in the 1990's-
00;07;49;20 - 00;08;30;24
Linda Long-Bellil
and actually, let me just start it. The very first Medicaid buying program was created here in Massachusetts by chapter 23 of the Acts of 1988. It's called Common Health, and it allows people with disabilities who meet the Social Security standard for disability. And we could have a whole webinar on that, a whole podcast on that. But suffice to say that program basically said that anyone who meets the Social Security standard for disability can obtain Medicaid without any income or asset limits simply by paying a premium.
00;08;30;24 - 00;09;05;21
Linda Long-Bellil
And the premium is a sliding scale premium which increases with your income. This idea, the general idea, was adopted at the federal level and in 1997 in the Balanced Budget Act. Provisions were passed that made the Medicaid buying program possible for other states. However, most states impose a fairly stringent income or asset limit better than the standard Medicaid income and asset limits, but still low enough that they keep people with disabilities either in poverty or very near poverty.
00;09;05;29 - 00;09;24;19
Linda Long-Bellil
And so an improvement in the buy in program could be that they get rid of those that the federal actually what would be the most practical thing would be for the federal government to increase the federal matching percentage for states that agreed to eliminate the income and asset limits.
00;09;25;07 - 00;09;42;27
Alan Weil
So I want to stay here for a moment, maybe in part because my first job out of graduate school was implementing chapter 23. So this is very, very near and dear to my heart. Although I wasn't working on Commonwealth, but I was working on other elements of it. So this is, it takes me back. So I want to go back there with you.
00;09;43;02 - 00;10;20;15
Alan Weil
Okay. So the idea here is that Medicaid offers a comprehensive set of benefits, much more comprehensive supports in particular for people with disabilities than traditional commercial insurance. But standard Medicaid eligibility thresholds may put, may exclude people with disabilities from Medicaid coverage. So you want to open up the benefits to people who would find it worth paying into the Medicaid program at at presumably a pretty significantly subsidized premium.
00;10;20;15 - 00;10;32;25
Alan Weil
But they're at least making a contribution. It enables them to keep Medicaid as they're employed, and then they get some of the wraparound benefits that Medicaid offers. Is that it works in common commonwealth?
00;10;33;00 - 00;10;34;09
Linda Long-Bellil
Exactly, yes. Mm hmm.
00;10;34;22 - 00;10;40;14
Alan Weil
And do we have a sense of why other, is it just a budget reason that other states don't take this up?
00;10;41;03 - 00;10;46;08
Linda Long-Bellil
That would be my guess. I don't have proof of that, but that would be my guess.
00;10;46;08 - 00;10;47;27
Alan Weil
Seems like a reasonable assumption.
00;10;48;05 - 00;10;51;11
Linda Long-Bellil
Yes. That's why you suggest- that's how things work, right? Yes.
00;10;51;15 - 00;11;12;25
Alan Weil
So that would make it why you would start with the possibility of increasing the match rate. So that's a very interesting opportunity. And what it's basically saying is we have a program that already serves a large number of people with disabilities. It's done a lot of work to try to figure out how to meet those needs. If more of the people with those needs were in that program, it would help close some of the gaps.
00;11;13;07 - 00;11;17;17
Alan Weil
Are there other policies in your overview paper that you'd like to draw attention to?
00;11;18;00 - 00;11;50;22
Linda Long-Bellil
Sure. So one thing I'd like to see is states to continue what started with the Olmstead decision and expand access to home and community based services by rebalancing, continuing to rebalance the distribution between institutional and community services. You know, states have, I think, slowly been trying to develop more community based services for people, but it really varies very tremendously from state to state.
00;11;51;15 - 00;12;05;18
Linda Long-Bellil
And so I'd like to see more progress on that front. There is federal matching available under some programs, increased federal matching available under some programs for that. So there is an incentive there.
00;12;06;07 - 00;12;28;15
Alan Weil
Yeah. So we've recently, a number of years ago past the 50% mark where more than half of the spending on long term supports and services in Medicaid is now non-institutional. But that still, as you note, there's significant variation from state to state, and it still leaves a large share inside institutions. This may not be a fair question, but I'll ask it nonetheless.
00;12;28;15 - 00;12;59;16
Alan Weil
One of the papers in our October issue did note that rates of nursing home utilization among people under 65 has not fallen at the same rate as people over 65. A lot of these efforts to move people out of institutions have been focused on elders. Do you have any insights into what might be helpful for achieving some progress for younger people with disabilities along the lines of what we've had for older adults?
00;13;00;03 - 00;13;25;05
Linda Long-Bellil
Well, I think building a more robust community system, community based care system, I think would definitely help. You know, I think, some young people with disabilities do have family support. Some of them may not. And so there needs to be a very robust, professionalized system. There's also issues like access to housing, including supported housing.
00;13;25;05 - 00;13;37;22
Linda Long-Bellil
I think that those are both concerns as well. So I think there are a variety of policies that could be employed to get more younger people out of nursing home facilities.
00;13;38;17 - 00;13;56;12
Alan Weil
One of the first policies you mentioned were changes ushered in by the Affordable Care Act. And we, I didn't follow up on that, but I'd like to now. When people talk about preexisting condition exclusions and getting rid of them or getting rid of lifetime caps, I think most people have in mind people with very high medical costs. Mm hmm.
00;13;57;01 - 00;14;06;02
Alan Weil
That's not synonymous with having disability. So say a little more about why these changes are important for people with disabilities.
00;14;06;23 - 00;14;24;17
Linda Long-Bellil
Some of it is not home care services. That's some of it for sure, because you can have, you can you can be relatively medically stable, but still have meaningful support needs. That would be one. One thing I would think about when answering that question.
00;14;25;02 - 00;14;52;15
Alan Weil
Yeah, it seems to me the overlap between sort of disability and high medical costs, they're different, but related. And I am struck that when we had sort of a political debate over preexisting conditions, for example, the image that was sort of put forward was not really of people with disabilities, people with chronic conditions, which may or may not be disabling.
00;14;53;07 - 00;15;05;16
Alan Weil
So I think trying to understand the implications for people with disabilities, some of these provisions is really important and maybe wasn't has as much attended to at the outset.
00;15;05;20 - 00;15;24;02
Linda Long-Bellil
Well, I mean, you know, there's is so much variation within the disabled population. I mean, you do have people who have very high medical costs, and it does help those individuals. And then it really ranges the gamut. I mean, on average, people with disabilities do have higher health costs than other people. That is certainly true.
00;15;24;26 - 00;15;33;19
Linda Long-Bellil
So it really it does help people with disabilities. The getting rid of preexisting condition exclusions or minimizing them did help folks with disabilities.
00;15;34;06 - 00;15;58;05
Alan Weil
The title of your paper and the early conversations we had drew on the concept of equity. Certainly the policies you've mentioned, which would be helpful to anyone with disabilities, would have an equity improving element. But I wonder if there's more you could say about the pursuit of equity in this area.
00;15;58;08 - 00;16;25;24
Linda Long-Bellil
Well, I think expanding the scope of services covered by public and private insurance in the paper we talked about medical necessity definitions and medical necessity definitions can be very, very limiting. They often are not focused on, you know, trying to help people live independently in the community. And one state that has a very good medical necessity definition is Delaware.
00;16;26;14 - 00;17;07;22
Linda Long-Bellil
Its medical necessity definition refers explicitly to the aim of attaining or retaining independence. Self-care, dignity, self-determination, personal safety and integration into all natural family, community and facility environments, and activities. So what really has this? It really it legitimizes this the goal of getting people involved in the community, promoting inclusion in the community as an aim of its medically necessary services and that services that do those things are considered medically necessary.
00;17;08;10 - 00;17;38;23
Alan Weil
Yeah. So I want to discuss for a moment the implications of that. I mean, basically medical necessity is a requirement for insurance to pay for services. If they're not medically necessary, then they're not necessary. So that actually has really significant implications. And I suppose when you think about the needs of people with disabilities, there are listening to you read the definition in Delaware.
00;17;39;02 - 00;17;52;18
Alan Weil
There are many things that are really important to a life of dignity and participation and inclusion that are not curative, which I suppose is sort of the easy part of medical necessity, right?
00;17;52;19 - 00;18;09;20
Linda Long-Bellil
Yes. Traditionally that was the focus, you know, sort of survival. I think pure survival was the focus, curative or curative, you know, improving someone's medical condition. But there's so much more that people need. And so I'm really pleased to see a definition like this one.
00;18;10;03 - 00;18;22;09
Alan Weil
So as we come to a close, I wonder if you could just say a little bit about any work you're doing right now, going a little deeper into your own areas of particular interest within disability policy?
00;18;22;27 - 00;18;49;23
Linda Long-Bellil
Well, let's see, you know, I am doing some work with our integrated care program for dual eligibles here in Massachusetts. And that's a very good program. One way to try to address concerns about cost while addressing the need for people to be included in the community and have broad definitions of medical necessity, etc., is to to use services like care coordination.
00;18;50;19 - 00;19;24;25
Linda Long-Bellil
And in a thoughtful way that promotes community inclusion, managed care. That's one approach. Something else I know that Lisa Iezzoni's article talked a lot about the challenges people have in obtaining medical care and they're very real. They're very real. People with disabilities have tremendous difficulty accessing medical care. Unfortunately, clinicians are not trained to provide that care to people with sort of obvious disabilities.
00;19;25;22 - 00;19;55;28
Linda Long-Bellil
So it's significant mobility, impairments, blindness, deafness, intellectual disabilities. Typically, these services are not required. And or rather, I should say, the training is not required in medical schools or residency programs, and so it gets overlooked. So that's a real challenge for people as well. I know that the AAMC, the American Association of Medical Colleges, has embarked on a diversity and inclusion effort.
00;19;55;28 - 00;20;19;06
Linda Long-Bellil
And I believe that they have to at least some extent included disability within that effort. And so hopefully maybe that will improve over time. But disability still isn't included on any of the licensing exams. And so, you know, what gets measured gets done right. And so it would be important for there to be some progress on that front as well.
00;20;19;22 - 00;20;37;12
Alan Weil
Well, Dr. Long-Bellil thank you for writing the overview paper with your coauthors and for explaining sort of the terrain here so that we can have a better understanding of the needs in the population. Thank you for that work, and thank you for being my guest today on A Health Podyssey.
00;20;37;26 - 00;20;38;25
Linda Long-Bellil
Thank you. My pleasure.
00;20;40;10 - 00;20;52;17
Alan Weil
Thanks for listening. If you enjoyed today's episode, I hope you'll tell a friend about A Health Podyssey.