Personal care assistants, transportation key issues for many voters with disabilities in 2024

CATHY WURZER: In 2022, about 14% of voting-age Minnesotans reported having some sort of disability, making that demographic A significant voting bloc in the upcoming state and national elections. Today, we're checking in with the former executive director of the Minnesota Council on Disability, Joan Willshire. She currently serves on multiple advisory boards for accessibility and independent living in Minnesota.

She's on the line to share what issues she and other voters with disabilities are paying attention to in the upcoming elections. Joan, it's a pleasure. Thanks for taking the time to talk with us.

JOAN WILLSHIRE: Well, great, and thanks so much for having me as well.

CATHY WURZER: You know, I'm curious, with all of your background, what issues are top of mind for voters with disabilities?

JOAN WILLSHIRE: You know, it's actually the same issues that we always are trying to get addressed. You know, It'd be great some year if we could actually move past the issues that we've been working on for years. But it's your basic-- it's transportation. And we're talking statewide. We need more reliable and accessible transportation. And a crisis area is the direct care services, the personal care attendants, et cetera.

People with disabilities in particular want to be able to stay and live in their home and in the community of their choice, but they need the direct care services to be able to do that. And there's a huge shortage of individuals that can do that job. So those two in particular, those areas, are just huge for people with disabilities to be able to live, , play and work in the community where they want to live.

CATHY WURZER: On the national level, Joan, of course, we're talking about Medicare, Medicaid, some of the funding mechanisms for personal assistance, I'm wondering what you see there. We don't even really hear much talk about that. I think Medicare still doesn't cover a lot of some of the services that folks with disabilities need, right?

JOAN WILLSHIRE: Right. So that would be a huge benefit, if Medicare would look at ways to pay for the direct care services that people with disabilities need and aging as well. So that would be huge to figure out how to expand Medicare in that direction.

CATHY WURZER: You know, you mentioned transportation, and that really came up last session with that whole Lyft and Uber situation, as you know. Can you paint a picture for folks who do not understand what it is like to live with a disability, how important transportation is? Do you have a personal story about that that really underscores it.

JOAN WILLSHIRE: Yes. It was a year and a half ago. It was a couple of days after the 15-inch snowfall in January. 5:30 in the PM in the evening, coming back from a medical appointment. I'm driving in my car and hit some ice and hit a parked car. So the good news, I was not hurt in the accident, but my car was disabled.

And I've often wondered, what happens to me when my car doesn't work? How am I going to get home? Well, that question got popped up good on that day.

And so it took three hours for us to figure out, with the police officer and so forth, how I was going to get home. And so good news is I was 10 blocks away from my home. And I ended up-- I use a scooter-- scooting home, with a police car behind me making sure I got home. Because there was literally no way for me to get home.

CATHY WURZER: Oh my goodness. And Metro Mobility, I understand, it's a help, but it also has its problems.

JOAN WILLSHIRE: Right. Well, and we are grateful that we have Metro Mobility. There are many states that don't even have a transportation service like that. So we always want to be grateful for the things that we do have. But yes, we're still needing more reliable and accessible transportation.

And I can tell you now, as a result of that incident, there is a situation now set up where the police officers and emergency responders can access Metro Mobility to come in a situation like I had now and not leave somebody literally stranded like I was. So that is the good news. As a result of these issues, decisions do get made to ensure that things don't happen like that again.

But in the Uber and Lyft situation, it's not accessible for people with disabilities that use mobility devices like a scooter, or wheelchair, or sometimes even walkers. So that we've got to continue to strive to make all systems of transportation accessible to everybody.

CATHY WURZER: You know, I'm wondering, from your viewpoint, why aren't so many of these issues that deal with folks living with disabilities, folks who are aging, why aren't they a part of the national political conversation? What is it about-- is there a blindspot there when it comes to politicians?

JOAN WILLSHIRE: You know, I think because it's not-- you know, it's not pretty enough. It's not sexy enough. You know what I mean?

You want some kind of exciting issue, something new and fresh, and it's the same old thing. So I think that's a big piece there is nobody wants to keep talking about the same old thing because we haven't moved the dial in many instances. And we do have to keep it right there on the threshold for all of our legislators to know this is still important. And yes, we're still working on transportation. We're still working on direct care support services-- increasing those needs as well. So we're going to have to keep hammering on this to our legislators until we get more funding in those areas.

CATHY WURZER: So there's obviously the state part of this equation and of course the national part of the equation. What are you hoping to hear from both presidential candidates?

JOAN WILLSHIRE: Well, that increased funding will exist federally that will go to the states as well in the area of transportation specifically for people with disabilities. If they could earmark that, it would be fantastic. And then the increase for a variety of issues for the direct care supports from educating individuals to go to school and to learn how to be a direct care support person, I think that's huge.

And just from the Federal level, as I said, and then pushing the money down into the states so the states can then disperse it to the communities that need it. So I think that would be huge. So increased funding. We definitely need that in order to make these issues start going away.

CATHY WURZER: And when you talk to lawmakers, what's your-- you have specific things you want, but what's the overall message? Don't forget about us, we're here, and we're part of the community.

JOAN WILLSHIRE: Right. And one of the sayings that I'm using a lot right now, "If not now, when?" You know, the disability community is very patient, but it's time. We need transportation. There's no other minority group that doesn't have a solid, reliable transportation system than people with disabilities.

And again, if not now, when? How long do we have to wait till we get the equity that we need in the transportation area in particular, in the direct care services? That's what's going to be our livelihood so that we can go to work and retain the jobs that we need. So it's vital on both those areas that we get the support that we need.

CATHY WURZER: All right. Joan, I appreciate hearing from you. Thank you so much for taking the time.

JOAN WILLSHIRE: Well, thanks for asking me.

CATHY WURZER: Joan Willshire is a disability advocate and the former executive director of the Minnesota Council on Disability.