Disabilities Research & Policy with Kenneth Bence

Introduction

Stanton Shanedling: Hello, everybody! Welcome to Health Chatter! We're going to do another show today on disabilities, but with a different twist, and we've got a great, great guest with us. We always have great guests, but Ken certainly is a wonderful colleague and a good guest to talk about all the issues around disabilities, especially from a research and political standpoint.

We've got a great crew: Maddy Levine-Wolf, Erin Collins, Deondra Howard, Ariana Tordoff, Sheridan Nygard, and of course, there's Matthew Campbell, who does all our production and gets it out to you, the listening audience. Clarence Jones is a partner in crime here, and unfortunately, he can't be with us today. He's doing a presentation, and actually, in his presentation, he's recognizing Health Chatter, so he says hi to everybody. And then there's Dr. Barry Baines, who provides our medical expertise, par excellence. So, thank you, Barry, for being with us.

Ken, thank you. Hueman Partnership is our sponsor. You can check them out at huemanpartnershipalliance.org—great community health organizations. I actually checked their website just a couple of days ago, and, wow, they do some amazing things that it's hard to keep up with, frankly. And Clarence is kind of the key person in many of those initiatives, so check them out at humanpartnershipalliance.org. And, of course, check us out at healthchatterpodcast.com. You can see all our shows, read them via our transcripts, and/or listen to them, so check us out as well.

So, today we've got a great guest, and boy, I tried to guess, but I'm not really good at guessing anymore how long I've known you, Ken. But Ken Bence has been in the healthcare field. Let's see if I can put this all together. I know he was at Medica, and he was the president of the Minnesota Public Health Association, and he was on our advisory council for the Cardiovascular Health Alliance at the Minnesota Department of Health when I was there. But now he's the Director of Research, Analysis and Policy for the Association of Residential Resources in Minnesota. It's ARRM, a nonprofit association of over 200 providers, businesses, and advocates dedicated to leading the advancement of home and community-based services, supporting those with disabilities. And we're going to really focus in on disabilities with a little twist that I'm sure Ken can provide for us. It's really great to have you. It's really... and it's good to connect as we always do, somehow or other.

Ken Bence: It's really great to be here, Stan, thanks.

Stanton Shanedling: Yeah, thanks for being with us today.

Defining Disability

Stanton Shanedling: So, alright, let's talk about disabilities. You know, first of all, what really struck me as I started to think about this is what really defines a disability. In other words, for instance, does it have to be chronic? Or what about an acute situation where you are, quote, "disabled"? So, maybe you can help us kind of clarify what truly defines a disability?

Ken Bence: Well, it can be broad, and it can be acute, as you say, when a person has an event that happens that then limits their physical or mental or emotional capability to live what their normal life would otherwise be. And so, you know, as you say, a person can be temporarily disabled following an injury or an accident or something, and I believe the Department of Transportation allows them to have a handicapped sticker for their car for a period of time under those situations.

But most commonly, what we think about are those who are chronically or permanently disabled, whether it's physically, emotionally, developmentally disabled, or intellectually disabled. And so, in the home and community-based sector where ARRM works, it is really the permanently disabled that we focus on, and what their needs are, and what kind of supports they require to live a life that is fulfilling for them.

The Role of ARRM

Stanton Shanedling: So, why don't you tell us what ARRM actually does, how long they've been around, what's their focus and their aim, and for that matter, how do people with disabilities connect with the organization?

Ken Bence: Right. Yeah, well, ARRM has been around since 1970, so it's got a long history. Originally, it was called the Association of Resources for the Blank—an "R" word that we don't use anymore. So, we now are the Association of Residential Resources of Minnesota. We are an association, and we support the providers who support people with disabilities in residential settings, or with services to support people living in their own homes, or with their families.

And so, what ARRM primarily does is advocacy and training focused on the provider sector. So we're very active at the legislature, and many of the larger organizations that provide support to people with disabilities are our members, so we're a membership association.

So my work has been primarily to help advance the work of ARRM in supporting providers by conducting research, gathering statistics and data about where the sector's challenges are and where the sector's strengths are. That helps us then communicate through our legislative agenda every year and helps us advocate for the providers where they face their challenges.

And so, I've really enjoyed the breadth of what my role is in really contributing to the political conversation because, fortunately or unfortunately, I guess, anytime we're talking about public investment in healthcare—and in this case for people with disabilities—it's a political conversation, because the investments have to come through the legislature and be appropriated. And so, I've enjoyed that part of what I do.

Workforce and Funding Challenges

Stanton Shanedling: So let me ask you something. Disabilities has kind of become a political ball that is out there. And I say that unfortunately, because people with disabilities have enough to deal with, but when they have to deal with the political ramifications, etc... As you were speaking, I was thinking, okay, are the questions today that you research and provide data for truly different than they were 10 years ago? Or what is it around the research that's different today than it was yesterday?

Ken Bence: Well, that's a really good question, because unfortunately, this is a chronically underfunded sector under our healthcare system, and so many of the issues that we are advocating for today could have played the same script 10, 15, 20 years ago. So there's been some constancy in those kinds of things.

In the home and community-based sector, as I said before, ARRM was founded in 1970, and that was when the first movement to release people from the large state institutions and allow more community integration emerged, allowing people to live in smaller settings and be integrated in their communities. Home and community-based services emerged out of that. And it wasn't until 1981 when the federal government allowed Medicaid waivers to support people living in more independent or home and community-based settings. So, supporting people with disabilities comes through Medicaid funding, so it's a shared federal and state partnership through the state's Medicaid program. Every state does it differently because every state has a unique Medicaid program.

And so the state's investments have to go through the legislative process and be appropriated because it always competes with everything else that the state has to spend money on. It's been a chronically underfunded sector, which has led to probably the most constant issue around the workforce. Investment is, in my opinion, not sufficient to where it should be. It does not allow providers to pay their staff who are either supporting people in group homes or other residential settings, or through supportive services in a person's own home. So it's a very low-compensated, minimally compensated workforce.

There's a lot of turnover, and it puts a lot of strain on the provider organizations that are doing this work to maintain that. And as the gap between other types of employment and doing this kind of work becomes larger, it gets harder and harder to maintain that workforce.

So, we do a survey of our members every year and track some of those statistics and compare them to national trends. We saw in our last survey that for what we call the direct support professionals—those who are working directly with people with disabilities—we found a turnover rate among our providers of 51.5%. That's a huge amount of turnover, and that was an upward trend from previous years.

The other statistic that we track is the vacancy rate, and the vacancy rate in our last survey was 11.4%, which was on a downward trend. So it was interesting to see turnover rates increasing and vacancy rates decreasing, which means it's just a constant rotating door. The positions are being filled, but the turnover is very high. From the perspective of a person with disabilities, that means their caregivers are not stable and consistent. They're constantly getting a new person to support them, and their needs can be very extensive, very personal. To have that amount of vulnerability and constantly have new people coming in to be a caretaker must be very frustrating and difficult from the person's perspective.

These direct support workers have an average wage between $18 and $19 an hour for this really sensitive kind of work that they're doing. And so, it's really considered an entry-level role with very few barriers to entry, and yet the responsibility and the kinds of work that they do are really intensive. In my opinion, there's a mismatch there, but that contributes to the instability of the workforce, and as I said, that's been the constant for years.

Medical Perspectives and Disruption of Care

Stanton Shanedling: So, Barry, Ken brought up the issue of healthcare. In general, we're dealing with issues in healthcare, so I assume it's even exacerbated with people that have disabilities. So, Barry, from a medical perspective, I'm sure in your practice you saw people with disabilities. What's your take on all of this? Kind of where it's been, where it's at now, and where you think it's going.

Barry Baines: Well, I think Ken hit on the most important aspect of disability care, which was having these caregivers come in. The relationship for patients of mine that had disabilities and were receiving services... the relationship between them and their caregivers was like family, because essentially these caregivers were filling in what used to take place in society. If people weren't institutionalized, it was family that was doing it.

And so, the level of turnover at one level, for me, was the biggest cause of disruption and angst for patients that had disabilities. Part of it is not only the relationship they had, but getting a new caregiver—the person with disabilities knows what kind of care they need, I mean, they've lived with their disability for many years. Trying to provide the training that it takes to help the caregiver do things in a way that's comfortable takes time. You don't build that trust instantaneously; it takes time. And so, that to me was the biggest issue that we saw.

The other one is, because of the person's disabilities, oftentimes there are mobility issues. If they needed to come in, that was like another barrier to getting in to see their primary doctor or the specialist that they're seeing. So what winds up happening, that I noticed, is that oftentimes the urgent care or emergency room route for access was easier. But the approach in an emergency room or urgent care is very different than in the family doctor's office, internist's office, or pediatrician's office. And so I think you wind up building in additional expenses just because of that approach.

As a family physician, I didn't have a lot of patients with disabilities, and oftentimes the care was more complicated. Just because of the nature of who I am as a person, oftentimes I would depend more heavily on the patient to train me on how I could deliver the best care to them, given their disabilities, because you just didn't see that on an everyday basis. Each one seemed very individualized as well.

So that's kind of my broader view, but I do have two burning questions. Ken, for the last survey that was done for turnover, what time period did that cover?

Ken Bence: That would have been calendar year 2024.

The Impact of ICE Operations

Barry Baines: Okay, okay. Because one of the things that I've read—and you probably have more of the pulse on this—was with the ICE surge operations. Because a lot of these are entry-level positions, you oftentimes have people who are new Americans or immigrants who come in. My understanding, because I know on the nursing home side of things this was a disaster too, I just wonder if you have any data or can comment on what the impact of the ICE surge was on the caregivers who were working with people with disabilities? I understood that the impact it had was just terrible in removing more people from the workforce because they were afraid to go out and deliver services. That was my real burning question, so maybe you can tell me about that a little bit.

Ken Bence: Yeah, I'm glad you asked that, because that was, and to some degree still is, a huge area of concern. My perception—I don't have any data on this—has been that the home and community-based services sector has a lower percentage of immigrant workers doing direct care than in hospitals and nursing homes. That's just been my perception, but I know that the providers were very anxious because of this and their concern.

I know that there were some providers who were making sure that their staff were taken to and from work, from home to work and back and forth, so that they weren't out and visible. I know some of the care workers were extremely concerned about being seen out in the community with people they support. You know, because what if somebody came and took them away and left the person with nobody to care for them out in a community setting somewhere? So there was a lot of anxiety over things like that.

I haven't heard any specific reports of things that actually occurred, but as you would expect, I think it did affect people not coming into work and not showing up for shifts. And so that just puts a further strain on the workforce, and so it was a huge issue. I think that because the people being supported are so vulnerable and rely so much on the staff, those kinds of disruptions can be catastrophic.

Stanton Shanedling: Yeah.

Public Health and Community Integration

Stanton Shanedling: Ken, I know you've got a strong public health background. So, if you put that hat on for a minute, given where you've been in your career and how you've approached the work that you're doing now, what do you think connects here from a public health perspective? We're talking about more personal care, but from a public health perspective, what do you think connects here?

Ken Bence: Well, I think we want to make sure that we can continue to have this philosophy of community integration and reducing barriers to people with disabilities as much as possible, so that they have the opportunities to live a life that's fulfilling for them, just like everybody else.

Stanton Shanedling: More community-based.

Ken Bence: So, community-based, decreasing separation, decreasing segregation, decreasing discrimination in whatever form, sort of as an overriding philosophy. Often it's called "independence first," so how do we best approach this as a way of maximizing a person's independence and also supporting the choices that they make?

There's something called the "dignity of risk." As a caregiver, supporting a person's choices—even though the caregiver may feel that may not be the best choice for the person—the person has the right to make a choice. So we support them in their choice, allow them to take risks, and support them as much as possible in doing those kinds of things. I think however we can permeate that philosophy throughout the public sphere is good.

I was just having a conversation the other day with somebody in municipal government talking about what accessibility looks like as we're doing city planning, and there's more to it than wheelchair ramps on sidewalks and things like that. As we look at building construction, parks, and accessibility, how do we create as much opportunity as possible? I'm much more aware now of the challenges that face people with disabilities. Every winter as I drive around after a snowfall, I look at the sidewalks and I say, "If I was a person in a wheelchair, I couldn't get from point A to point B because the sidewalks aren't clear, it's not safe," those kinds of things. There are so many things that we take for granted that face people. So I think public awareness is always helpful, reducing any stigma, and embracing people living in our communities.

If we have a group home in our community supporting people with intellectual and developmental disabilities, they should be part of our community events. If we have a National Night Out or Night to Unite kind of thing, encouraging them to come there. If we see a group home taking their residents out for a walk through the neighborhood, include them in things. They should be integrated into our communities, and so I think those are all really good, sort of overriding public health things. And I'm really glad for what you mentioned before, Barry, just from a practitioner's standpoint.

Post-COVID Impact and Disability Statistics

Stanton Shanedling: Do you think that the mindset of the public is different post-COVID—I'll just say post-COVID for the time being—as it relates to dealing with people with disabilities and integrating them more and involving them more? Do you think that that's different now, or is it pretty much steady the way it's always been?

Ken Bence: I haven't seen or heard anything to suggest that. I think it became really hard for people with disabilities to not be able to get out during the COVID experience. Depending on a person's degree of disability, their intellectual ability to comprehend what was happening, why masks need to be worn, and things like that—those were challenges. That whole COVID thing was a huge strain on staffing, again, because healthcare workers in general didn't want to be exposing themselves or their families more than they had to. So a lot of work happened to try to reduce exposures and spread as much as possible. Of course, people with disabilities tend to be more susceptible to infections and viruses, so that was a concern. But I haven't seen or heard indications of lingering issues related to that.

Stanton Shanedling: Yeah, so it's just a point in time that created angst, or more angst, for people with disabilities. This is kind of interesting—our great research crew compiled some notes for people that don't have disabilities. When you think about what defines a person with a disability, there are certain things that can put somebody in that category, like vision, movement, your ability to think, your ability to communicate, your mental health, and your ability to connect with other people. These can all be exacerbated with a disability.

This is an interesting statistic that you can verify: an estimated 1.3 billion people experience significant disability. This represents about 16% of the world's population—about 1 in 6 people have a disability or have been defined as having a significant disability. I mean, that's a lot!

Ken Bence: Significant, right.

Stanton Shanedling: Significant. Health inequities are something that really comes to bear, and you alluded to that. As it relates to intellectual disabilities, people with, for instance, Down syndrome, Fetal alcohol syndrome, genetic conditions, and birth defects—these all kind of play out as it relates to disabilities.

Legislation, Policy, and Budget Decisions

Stanton Shanedling: You mentioned that in your work, you're involved with policy and research. There are policies in place and legislation in place. First out of the gate, has the legislation, whether it be at the state level or at the national level, changed, or has it been pretty much the same? That's number one. And then number two, what are the typical questions that you get in your professional role related to disabilities today from the legislature, for instance, such as "we need to research this," or whatever? So, first and foremost, the laws that are in effect, and then going forward, what are governmental people asking you these days?

Ken Bence: Yeah, well, there could be a lot to unpack there. At the federal level, we've had the Americans with Disabilities Act since 1990, probably the overriding piece of legislation, and it's been amended since then, so it's not been a totally constant thing. But that's really where we started to see the infrastructure changes. New building construction has to have certain characteristics that are compliant with the Americans with Disabilities Act, or the ADA. And now, as cities, municipalities, and jurisdictions are going through long-range planning, how do we develop communities that are supportive of that? How do we design playgrounds that can accommodate folks with physical disabilities and things like that? That's long-term change, and over 30 years, there are still improvements happening, so that's certainly happening.

Under the Obama era, under the Affordable Care Act, there were provisions in there specifically related to prohibiting discrimination on the basis of disability as one of the factors that was included. So those are the kinds of things, broadly speaking, at the policy level.

We work mostly at the state legislature, and so at the state level, the types of services that can be provided under the state's Medicaid program are defined in statute, so it goes through a legislative process. And unfortunately, over the last few sessions, what we've been seeing is when there are needs to look for areas to cut in the state budget, for whatever reason, the focus has been in the human services sector, and a large part of that then affects people with disabilities. Even in the recently completed 2026 session, we saw a number of provisions go through that put caps or limits on the types of services or number of units of services that a person can receive. Because the state wanted to pay for fewer units of service, if you will, it was a budgetary thing, but that has a direct impact on a person's life and the kinds of things they can do.

Stanton Shanedling: Yeah.

Ken Bence: It was just by lots of advocacy by ARRM, by the provider organizations that we represent, by individual advocates and people with disabilities themselves making some very emotional pleas in legislative committees and through testimony. But at the end of the day, it becomes financial decisions and budget decisions, and that's what it comes down to. We really had been disappointed, again, that the focus turned to human services. As I said at the beginning, because it goes through the legislative process, it becomes political. There really weren't strong party lines in where support was, but in such a closely divided legislature like we have in Minnesota, getting things passed took a lot of effort, and so we ended up where we ended up.

Because this has been a chronically underfunded sector, and we continue to sort of ratchet it down when there are budget issues trying to balance a budget, it makes the system much more strained, and I think it makes life more difficult for those who have disabilities. We always refer to them as the most vulnerable in our society, so why are we making their lives harder rather than easier?

Stanton Shanedling: Yeah, you know, it seems to me—of course, I carry this public health hat, and I'm sure, Barry, you would agree with this—the necessary funding in order to assure care for people with disabilities should be a given. End of conversation. I mean, really, why make it more difficult for people with disabilities when their lives are already difficult? That's just me carrying a torch, so to speak. Barry, what do you think?

Barry Baines: Well, yeah, I mean, on that, I don't disagree at all. And, as we pointed out, the disability community is a minority community, and so the level of power, as it were, and voice that they can wield tends to be not that strong. As Ken pointed out, in a pretty closely divided, but very polarized legislature, my opinion is that these things get ignored, as they do not only with disabilities, but certainly in a number of areas, including health. That's why we have Ken today on our show, because it's Health Chatter, and it certainly impacts health.

So, how do you overcome that? Well, I think it becomes a combination of the advocacy of organizations, the disability community themselves, but then also more integration that you can have of a disability community within the general community. It's about not segregating a disability community so that you have—I'm making this up now—disability ghettos. That doesn't get you anywhere, because you want to really normalize it. People with disabilities are normal people too, but they have disabilities. So how do you move from there? That's what I have to say about that.

Technology and the Future of Mobility

Barry Baines: I did want to take a little bit of a turn, but feel free to say, "Okay, well, we'll talk about that at the end of the show." In the research, and actually based on some of our recent shows, I want to turn to technology for a minute, because I am fascinated. One of the things that I saw in my years of practice—again, with a limited disability population—was how the technology available to the disability community changed, and typically it was good technology changes.

What I'm wondering, especially coming off of an AI show that we did last week, is what the impact in the technology area holds in store for the near future for the disability community. I'll give one example, only because my friend and neighbor across the street works for a company that has very advanced electrical cars, and they're working a lot on self-driving capabilities for that. One of the things to me—and I think Waymo is the one that's here in the Twin Cities—is driverless transportation, like a driverless Uber or Lyft, or driverless cars that you can order to take you places. Now, obviously, there needs to be an accommodation for people with disabilities sometimes in getting into a vehicle, and a lot of times special transportation is needed. But that being the case, is this something on the horizon that could be—really, no pun intended here—a big lift for people with disabilities for enhancing their mobility? Because that has always been, in my mind, one of the biggest obstacles for people. Yes, they can get mobility, but sometimes you have to wait two and a half hours, do you know what I mean? So you spend all this unproductive time waiting for that mobility, whereas the three of us can go down to the garage or the street, hop in the car, and away we go if we want to go shopping, as an example. So I just wanted to put the technology question on the table, because that seems more hopeful than thinking that we're going to get a real turnaround in the legislature at this point in time.

Stanton Shanedling: So, big technology for people with disabilities—and correct me if I'm wrong, Ken—can be overwhelming, too. I mean, we take for granted things like our phones or our computers or what have you. But it's a great question: how does it relate to technology and its capabilities?

Ken Bence: Well, it's a very good topic to bring up. It was actually one of the things I had on my list of notes in preparing for this. It's a big, and obviously growing, issue as technology continues to evolve and emerge. When we're talking about giving people the opportunities to live their most independent lives, technology exists that really enhances what's possible for people with physical, intellectual, and developmental disabilities.

We kind of have two broad buckets. We have assistive or adaptive technology, which assists people in doing things and getting around. And there's also monitoring technology, which means from a workforce perspective, it can help extend the workforce by using technology in a monitoring role that can sound an alarm or send an alert when somebody needs assistance to bring in a response, but there doesn't have to be somebody necessarily on-site 24-7. So it's got that kind of a benefit.

A number of the self-advocates who were testifying in the legislature this past session spoke through assistive devices. They spoke with a computerized voice based on inputs that they give, and the way that they give inputs can be through eye movement, typing—there are many ways that that can be done. So this is a growing and emerging field. It really expands people's possibilities in how they're able to function and the things that they can do by themselves or on their own.

Something that ARRM has been involved with is promoting this. In many of the conferences that we put on, we often will have a technology showcase where we'll have providers of technology come and showcase some of their products. It's just amazing the kinds of things—I give credit to people's ingenuity—the things that they come up with and how they can help solve people's problems. So, again, that's going to continue to be a growing and emerging area to really come up with new things.

Safety and National Job Classifications

Stanton Shanedling: It seems to me that one of the major themes as it relates to disabilities, and obviously then legislation and financial issues, etc., is safety—overall safety. You mentioned just sidewalks, ramps on sidewalks, or in buildings. As we become more technologically savvy, I think safety has to be a combination variable with it as we proceed. In other words, is the new technology compromising safety? And if so, then how can we assure that it doesn't compromise safety? I think these are major issues that need to be ongoing, for sure.

One other thing that came to mind: are there other groups in other states? Is ARRM represented in other states as well, or is it a national thing?

Ken Bence: There's a national association that basically does what we do at the national level. Their acronym is ANCOR—we call it Anchor. They are based out of the DC area, and we are a member of them as a state affiliate. They take things from a national standpoint. Many states have a state association similar to what ARRM does.

There are a few state associations in Minnesota. ARRM represents mostly the residential services side of things. There's another association that represents people who run day programs that people with disabilities will go to for programs during the day, and also employment programs. There's a growing movement to have what they call community integrated employment, so that people can work regular wage jobs in the community. There are a number of services to help them find jobs and hold jobs, and so oftentimes they need supports to work side-by-side with them to help them maintain that job. So those are a couple of other areas where there are advocacy organizations similar to ARRM.

One thing that is happening at the national level... I mentioned earlier about the direct support workforce, those people who work directly with people with disabilities, and the low wages that they are paid. It turns out that the U.S. Bureau of Labor Statistics maintains huge troves of data on all the occupations that are defined throughout the U.S., but there is no defined occupation for a direct support worker. So we can't really collect data nationally on what they get paid, what skill set they need, and so on, which also means that there isn't really a career path for somebody to follow because there's no defined job. There's been an effort for the past several years to create a job classification specifically for a direct support worker, mainly in this home and community-based services setting.

Stanton Shanedling: Health workers? Would that be an aspect of it?

Ken Bence: That's an aspect of it, yeah. Minnesota has sort of created an algorithm to determine what a wage might be for a direct support worker, and it includes aspects of a nursing assistant, a psychiatric assistant, and a social and human services aide. It's sort of putting together an amalgam from existing job classifications. But it really doesn't speak to the breadth of skills that these people have to have, and as Barry mentioned earlier, it is very individualized to the specific person they're supporting, what that person's needs are, and what they prefer. There's been good progress at the national level to get that done, and so we're supportive of that.

Micro vs. Macro Perspectives and Hidden Caregivers

Stanton Shanedling: Correct me if I'm wrong, it seems that there are perspectives for disabilities from a micro perspective—more from a personal perspective, a care perspective, etc.—and then there's more of a macro approach, which is kind of where ARRM sits as far as policy, legislation, environmental changes, etc. Would that be a fair assessment, or do you think that ARRM works in both arenas?

Ken Bence: I suppose both to a degree, but our role is that we advocate on behalf of the providers. I want to point out, though, that there's a large group of hidden caregivers, hidden providers, because many people with disabilities live in their family of origin, and it's their family that's providing the supports. They may, through the Medicaid program or Medicaid waivers, receive support, and they may bring people in to provide some supportive services, but the bulk of that individual's care and support is coming from their own family. And they're not just supporting children; they are a support person up through their adulthood.

We see, as the demographics in our society are aging, more and more aging parents are still supporting adult children with disabilities in their own homes and becoming less and less able to do that. That's a huge concern. People really, as they age, want to make sure that their loved one is taken care of in some fashion, and so that's why we need this network of paid caregivers as well. But the unpaid and unrecognized caregivers are a large segment of the unseen workforce in this field.

Invisible and Exacerbated Disabilities

Stanton Shanedling: So, Aaron, I see that you're on the show, and I've got a question for you because Aaron works in the diabetes field. Just because somebody has a chronic condition such as diabetes, does that link them—it's kind of a rhetorical question here—into the disability arena? And then a more specific question for you, Aaron, is in the work that you do, I assume, and maybe incorrectly, but correct me, you're aware of people that have a disability and are diabetic. In that sense, it can exacerbate a disability, per se. What are your thoughts on that?

Erin Collins: Well, type 1 diabetes qualifies as a physical disability. It qualifies you for things like a 504 plan in schools. You can also—I mean, just an example that comes to mind first for me is if you go to Disney or Universal, you can usually qualify for some sort of line skipping or line queuing process because of the physical disability. But I mean, like, I also did some stuff with TSA PreCheck based on my disability. So, there's a lot of things out there that you can take advantage of because you have diabetes that falls under the ADA, and you qualify for a whole lot of support. I don't think a lot of people know that. But of course, somebody can also have diabetes and also another disability of some kind. Does that answer the question? Yeah.

Stanton Shanedling: You know, to a certain extent, in my head, I was thinking of, okay, somebody is in a wheelchair, and then all of a sudden, the next thing they know, they're diagnosed with diabetes. So, it exacerbates everything—it exacerbates getting the appropriate care that they need, etc. So, I think there are different levels. Do you run into that at all, Ken? Where different levels of people with different disabilities affect how providers give them the necessary things they need?

Ken Bence: Yeah, I mean, there are also invisible disabilities. A person with a developmental or intellectual disability, or something like autism—it's not immediately apparent that they would have a disability, but they have compromises in some of their abilities in functioning, and so they would have a disability. I would think, from a health practitioner's perspective, the greater understanding the practitioner has of what a person's limitations or disabilities are, the better care they can render.

A person with mobility issues, like you were saying, who ends up with something like diabetes where there's a significant self-care component—whether it's monitoring your glucose or having to give yourself insulin—that can become more challenging, and so they may have more of a need for a caregiver of some kind to help with things like that. And if a person has limited intellectual capacity, their ability to care for themselves is much more limited, and so there definitely is an interplay there.

Conclusion and Final Thoughts

Stanton Shanedling: Yeah, yeah, for sure. Well, this has been an incredibly great show. It certainly complements a previous show that we did a while back on disabilities, in the sense of bringing in the necessary questions and the necessary things that still need to be addressed, and how we need to be involved with things going forward, including what Barry brought up from a technological standpoint. So it's great. So, last thoughts, Barry?

Barry Baines: I just really... you know, my perspective on disabilities, just as a physician, was always more at the micro level, at the exam room level—taking care of individual patients. It's always helpful to realize that I was just a part of a much bigger system that is trying to support and improve both the care and the life of people who have disabilities. I enjoyed the discussion because it kind of helps expose me to more of the resources that are out there and the goings-on in the community. Like I say, I'm sure that we rubbed shoulders at meetings in the past, and it was good to meet you.

And then, I have to do one call-out when you mentioned the adaptive perspective of disabilities. A close friend of mine has co-created an adaptive sailing program down on Lake Harriet. He's been doing it for years and years, and again, it's giving people with disabilities the ability to go sailing. They have these adaptive boats, and you're not going on the high seas, of course, but still, they're taught sailing, and they get to do that. I didn't realize the link I had with that adaptive aspect through my community, and so, it's interesting what you can do when you put your mind to it and think creatively. So, thank you.

Stanton Shanedling: Ken, last thoughts?

Ken Bence: Well, I really appreciate the opportunity to be here. It's been my pleasure to do this show. Shout out to you and Clarence on maintaining this podcast and keeping up the good work, and Barry as well. It's been a lot of fun. Maybe we can do this again sometime.

Stanton Shanedling: Absolutely, and you know, we tell our guests that if things come up that we need to communicate to the public, you can certainly contact us, and we can do another show on Health Chatter.

My last thought is this—and I hear Clarence in the back of my head saying it from a community perspective—reach out. Think about how you can be more caring for people. Hold a door open for somebody that needs to have a door held open. Just bring it up a notch. And just by doing that, hopefully, if everybody just took it up a notch, it would really have a positive implication, not only for you individually, but for people who are in need of that. "Bring it up a notch" is my takeaway from this.

Ken, thank you so much. To our listening audience, we've got great shows coming up for the summer, so stay tuned for all of them, and keep health chatting away!