Episode 199: Aging Well with Disabilities

In this episode of the Aging Well Podcast, Dr. Jeff Armstrong and Corbin Bruton discuss the barriers faced by people with disabilities in accessing medical care, inspired by an article, "I'm Embarrassed to Admit I Have No Idea How to Care for Patients With Disabilities," by Simon Park, PhD. The conversation highlights inadequate medical training, inaccessible healthcare facilities, and the need for systemic changes in medical education. They explore how these issues impact healthcare delivery and discuss potential solutions, including better training for healthcare providers and systemic changes. The episode emphasizes the importance of understanding and addressing the unique needs of individuals with disabilities to ensure they receive proper care as they... age well.

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Transcript

0:04

Welcome to the Aging World Podcast, I'm your host, Dr. Jeff Armstrong here with Corbin Bruton. In this episode, we dive into a critical and often overlooked aspect of health care, the challenges faced by people with disabilities when accessing medical care. Inspired by a thought provoking article by Simon Park, PhD, a third year medical student at Loyola University, Chicago, we'll explore the barriers that exist in our healthcare system and discuss how we, as a society, can better support people with disabilities as they age. We'll cover topics ranging from inadequate medical training and inaccessible facilities to the need for systemic changes in medical education and practice. Join us as we shine a light on these important issues and consider what can be done to ensure that everyone, regardless of ability, receives the care they deserve to age well.

jeff_1_10-05-2024_081317: 0:53

So, Corbin, you know I like to try and keep up with health care and medicine by reading articles in MedPage Today.

corbin-bruton_1_10-05-2024_081317: 1:00

yeah, we've had some pretty good conversations with these. Was there anything that has caught your eye recently?

jeff_1_10-05-2024_081317: 1:06

Yeah, I was actually a bit appalled by a recent opinion piece. It was titled, I'm embarrassed to admit I have no idea how to care for patients with disabilities. by Simon Park, PhD. Dr. Park is a third year medical student at Loyola University, Chicago Stritch School of Medicine. in the article, Dr. Park addresses how, woefully inadequate medical school programs are in training physicians to meet the diverse needs of their patients, particularly those whose Needs are significantly different from the average patient and quite unique.

corbin-bruton_1_10-05-2024_081317: 1:43

to that individual, I would probably say, most people fall into that same category as you. people, they see an individual with disabilities, and they're not entirely sure how to assist them, how to help them out, but I feel like that's normal, you know, one, it's because I feel like most of the literature that's out there, it's to prepare you to help and assist, without disabilities on top of that, disability is, going to be different, So someone with down syndromes is going to be different than someone with cerebral palsy. And so on the spectrum of disabilities, how do you pinpoint that to help the person You're trying to take care of.

jeff_1_10-05-2024_081317: 2:27

honestly, I think it's not possible to instruct people in every single disability because when we look at disabilities Everybody's going to be a bit unique and it's important to approach every patient as an individual and be cognizant of the needs that individuals have. And that's what I find the most appalling about this is because how are we not preparing physicians to deal with that uniqueness of the patient and the diversity of needs, especially when talking about disabilities. And, You know, I have my class in pathophysiology and exercise. one of the main reasons I pushed for that class is because I feel like as exercise scientists we're going to be working in the fields of physical therapy. Some are going on to PA, some are going to go on to be physicians. Hopefully many are going to go on to be physicians. but even just working in personal training and those types of things, you can Engage with people who have situations that you're just not used to. We can't teach everything in the classroom, but if we can understand how to take our knowledge of physiology and mechanical function, remember, we always talk about it being a biomechanical psychosocial treatment of disease and longevity and all those types of things. If you can take that approach, you can figure these things out. You can ask the right questions. as we proceed through this, we can talk about many of the barriers that these patients are facing as they go in for healthcare and just kind of a little background for the listener. And the viewer, you know, might be watching on YouTube, in 1990, the Americans with Disabilities Act, or the ADA, which most people are familiar with it as, was signed into law, and that ensured equal rights and protections for people with disabilities. while much has changed in that 34 years, there's still a lot more to be done, particularly in the area of healthcare.

corbin-bruton_1_10-05-2024_081317: 4:23

Okay. So what are some barriers with disabilities that we're still seeing today? and what are we as a society doing to better support them as they age?

jeff_1_10-05-2024_081317: 4:33

Well, that latter part of the question is a really good question, and I'm not Sure, we're doing well enough in that area, but, according to the CDC, there's about 61 million adults in the U S living with some form of disability. Yet many healthcare providers are still not adequately trained as Dr. Park indicated to meet their needs. Dr. Park is a physician in training and admits that despite all their education, physicians still feel unprepared. to care for patients with disabilities. one barrier, to consider is physical barriers. You know, the in of many medical facilities, you know, you have examination rooms, equipment, transportation, many of these things can prevent people with disabilities from receiving proper care.

corbin-bruton_1_10-05-2024_081317: 5:21

it's kind of alarming to hear that basic accommodations, like larger exam rooms for wheelchair users and, height adjustable examination tables are often lacking. I feel like as a society, We've come really far, but it's still lacking in a lot of that. So the healthcare system isn't set up to handle the complexity. of treating patients with diabetes.

jeff_1_10-05-2024_081317: 5:47

almost every type of disability. And then you come up with, you know, communication barriers, you know, there's a often difficulty in communicating due to lack of accessible formats, you know, lack of braille signage or sign language interpreters is probably one of the big areas. and this isn't necessarily along with disabilities, but you also have language communication barriers where you have people whose main language is different than English and they have difficulty communicating with their physicians. And so this lack of communication ability can really impede the understanding that needs to exist between patients and healthcare providers.

corbin-bruton_1_10-05-2024_081317: 6:31

I remember, when we were in one of your classes, in college, we, we talked about how there was an individual, I think they had cerebral palsy, and, you know, they were, they were born with it, and her, her parents, Had just spoken about her when she was in the room thinking, Oh, she, she can't understand us. But one day she ended up typing a keyboard and she could, the parents realized, Oh my gosh, like. You can understand us. Like she could understand us the entire time. She just doesn't physically have the ability to communicate. So she started communicating with a, with a keyboard. And I think situations like this, it's with these experiences, many patients with disabilities, they, they, they tend to feel invisible or treated. As if they're incompetent when in reality they're not. But because of this, it leads to poor health outcomes. So my question here is what can be done to improve these situations,

jeff_1_10-05-2024_081317: 7:41

it is a lot of education is a big piece of it. kind of overcoming many of the attitudinal barriers. You know, a lot of health care professionals just may lack awareness or hold biases against individuals with disabilities that can affect the quality of health care. You know, I think when it comes down to the communication piece, I think it's important to under, to have a mindset that the patient can understand more than you perceive them to understand until they demonstrate otherwise, don't go into it thinking that, you see a lot of people, walk up to an individual with disabilities and they talk to him like a two year old. Not understanding that this person is an adult. They have an adult brain. They may not be able to express themselves quite as well, but they understand what you're saying. They don't need to be talked to like a child. They need to be talked to as an adult. Maybe slow down your communication a little bit more. Confirm whether they're understanding or not understanding. if there is a lack of ability to communicate on their part, How can we provide them ways to better express themselves? maybe it is, you know, with a keyboard or being able to write things down or having a individual with them, an aide who can help in kind of transferring or translating some of that communication, having ASL trained individuals nearby can be very important. Um, but really it's just trying to elevate that level of awareness.

corbin-bruton_1_10-05-2024_081317: 9:12

yeah, you're bringing up a good point. To go back to this doctor. That's feeling embarrassed important thing here is your patient is a human being and every human being has rights And so you just got to figure out. Okay. got to treat them Like they're, don't let the intimidation of an individual's disabilities, hinder you from providing the best care and treating that individual with basic human rights and respect.

jeff_1_10-05-2024_081317: 9:44

And then there's other barriers too to consider as well. Things like financial barriers. There's a high cost of health care to begin with, and when you add into that the level of specialized care, the equipment, because the person with disabilities might be limited in terms of their work, they might be limited in insurance coverage, all of these things can compound the problem by posing more financial. Challenges for the individual, and then you got policies, you know, all the different policy and administrative barriers, you know, health care managing that is complicated, I'm glad I have my wife to navigate a lot of those things, because I don't have the time of the patient sometimes to manage, and we're all the same. relatively healthy family. There's just certain areas where, we're trying to get treatment or, care for the kids and the number of hoops and barriers you have to go through or over in order to get access to your needed services. It's difficult if you are, more capable and financially set I can imagine how much harder it is for somebody who has a lack of maybe the appropriate communication skills or lacking some of the financial backing to jump over these hurdles. And so that's where I think social workers and other care individuals can be a little bit better educated in communicating or advocating for their patients. Healthcare needs to be aware that, they complicate things for people and need to be more responsible for helping their patients manage some of that. I think it's important we recognize that not all physicians. are in a position where they don't understand or don't want to understand. I want to clarify that I really respect Dr. Park in writing this particular article and admitting I'm struggling here and I'm not being taught what I need to be taught in order to adequately meet the needs of my patients. there are some physicians out there that are not willing to invest the time to learn. or to try and understand their patients And, you know, that even further creates barriers, particularly like information barriers, where, you know, if there's not the concern about need to better convey this information, a lot of people with disabilities have limited access to health information, or just it's inaccessible formats, you know, whether it's a language thing needing it in braille or doctors communicating at too high a level these things can really hinder informed decision making when it comes to lessening barriers for people with disabilities. The article highlights some of the real life challenges that patients with disabilities face. They mentioned one patient shared a story of being yelled at by a primary care physician simply for not following instructions. Another patient struggled with transportation logistics only to be asked to reschedule once they finally made it to the clinic. that could be horrible for the patient, struggling with transportation and, and getting to the medical facilities and then you get there and say, Oh, sorry, we're going to have to reschedule you. there needs to be better accommodation

corbin-bruton_1_10-05-2024_081317: 12:55

these experiences are sadly common. Many patients with disabilities, feel invisible or treated as incompetent, which leads to mistrust and poor health care.

jeff_1_10-05-2024_081317: 13:05

Yeah, so one key solution is to better train healthcare providers, the American Medical Association or AMA, recommends that medical schools offer. elective rotations that focus specifically on caring for people with disabilities. to me, that's a step in the right direction.

corbin-bruton_1_10-05-2024_081317: 13:23

Absolutely. mentions a medical school elective that emphasizes interprofessional communication and offers direct engagement with patients who have disabilities. Students have learned to approach care from the patient's perspective, which is invaluable.

jeff_1_10-05-2024_081317: 13:40

Beyond education, it really needs to be a systemic change. Medical schools should expand their curriculum to ensure that every student graduates with a solid foundation in disability care. This shouldn't be just an elective, but a core part of the medical education. I've often talked about my feeling that all physicians should come through an exercise science program, which is kind of my bias. But I think those kind of programs, that kind of foundation even before medical school can have a profound effect on the quality of physicians that we might be getting.

corbin-bruton_1_10-05-2024_081317: 14:16

And like you mentioned earlier, um, Dr. Armstrong, advocating for individuals with exercise science majors is critically important.

jeff_1_10-05-2024_081317: 14:25

Yeah, I mean, I, I've spoken at for years. I have a friend who teaches at West Virginia University, and he's actually told me that he's heard from medical school faculty that they really prefer their exercise physiology majors coming into the medical school program because, as someone had mentioned him, quote, biology just doesn't get it. And not necessarily knocking biology programs, but when we come from a very basic science into medicine, we're generally bringing that basic science into how we retreat patients, you know, so a chemistry major is going to be much more inclined to look at prescriptive medication. as opposed to advocating for behavioral changes or lifestyle changes that might benefit the individual. in the case of, exercise science, we have a lot of courses as we deal with exercise for individuals with disabilities, and also just kind of understanding beyond the basic physiology, what happens with pathologies with physiological dysfunction, how that's going to impact one's function. I just feel like we get a much better attitude toward or a better capacity to interact with patients on an individual basis, understand their needs, communicate those needs more so than some of the traditional. Physicians and pathways to medicine, it's a bias on my part, and any listener or viewer that disagrees with me, they're kind of free to disagree with that, but I really think that at the fundamental level, physicians should be More advocates for their patients. They should have a better understanding of their patients and be willing to understand that not every patient coming through their doors is going to have the same set of needs as the person before them.

corbin-bruton_1_10-05-2024_081317: 16:29

I mean, that's a hot topic right there. because you're basically asking the entire medical field to change their practices, especially in Western culture. Cause I feel like you show up to the doctor and they just do a blanket. Diagnosis and they're just like, okay, take this and move on. Cause they're only getting like 15 minutes, with you, maybe less, maybe you're sitting in their office for 15 minutes, but they only come in for five they. Hear your symptoms and they're like, okay, you have this. And I think you're right. it comes down to getting to know the individual, their lifestyle choices. that one on one conversation with them. I feel like that can go a long way. As far as healing them and providing the patient what they need in order to be treated for the exact thing instead of a generic blanket statement, our listeners and viewers should also listen to your conversation with Dr. Dan Dow Hower.

jeff_1_10-05-2024_081317: 17:34

Yeah. That's episode one 80 social determinants of aging. Well, uh, social disparities in health is Dr. Dalhauer's area of expertise. He's a colleague of mine at Western Oregon university. And as people age, disabilities often intersect with other health and social disparities. And this is we've kind of been talking about a little bit can really exacerbate some of these challenges and increase the risk of multiple medical conditions. And so with an aging population, it is crucial that we understand how to support older adults with disabilities as well as other social needs.

corbin-bruton_1_10-05-2024_081317: 18:12

I think the article pointed out that people with disabilities have nearly doubled the mortality rate compared to those without disabilities. That statistic alone should be a huge wake up call.

jeff_1_10-05-2024_081317: 18:25

Yeah. And again, it's understanding all of the intersectionality that goes into treating individuals and interacting with individuals. you know, we've covered a lot today. but I think the key takeaway is that more needs to be done to ensure that people with disabilities receive the care they deserve, especially as they age.

corbin-bruton_1_10-05-2024_081317: 18:49

Yeah. And that starts with a better educational system for healthcare providers, systemic changes in the medical field, and honestly, just being a greater advocate for individuals with disabilities. I'm hoping that this episode has shed some light on these critical issues. And I just wanted to say thank you so much to the viewers and listeners. for joining us today on the Aging Well Podcast. if you'd like this, please subscribe to the podcast. That'll help show some of your support. And always remember, aging well is not just about living longer. It's about living better, no matter what the challenges are that we face. until next time, please remember to keep well.

19:35

Thank you for listening. I hope you benefited from today's podcast. Until next time, keep aging well.