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Joshua Sharfstein: Demi Eckhoff, welcome to Public Health On Call. It's great to have you here.

Demi Eckhoff: Yeah, it's an honor to be here. Thank you.

Joshua Sharfstein: I wonder if we might start with some general introductions. I'm the host of this podcast, and I teach at the School of Public Health, a school that you will soon be attending as a doctoral student. We're really excited to have you. Could you tell me a little bit about yourself?

Demi Eckhoff: Yeah, so my name is Demi Eckhoff. I was born with a rare form of congenital muscular dystrophy. I am an incoming DrPH student at Bloomberg School of Public Health. I'm super excited to be joining. And by trade, I am a registered dietitian. I am a loving cat mom to my favorite little cat, Sparkle, too. So yeah, that's kind of me in a nutshell.

Joshua Sharfstein: Fantastic. And where do you live?

Demi Eckhoff: I live in Durham, North Carolina. I got my master's at UNC, and, so, I kind of stayed in the area.

Joshua Sharfstein: And you'll be doing the doctoral program from Durham, North Carolina. Is that right?

Demi Eckhoff: Yes.

Joshua Sharfstein: OK, fantastic. So you reached out to talk about the Medicaid program. And we thought it'd be great to have you on the podcast. Tell me a little bit about your interaction with the Medicaid program.

Demi Eckhoff: Yeah, so I've received Medicaid since birth. They provide all my health care—if that's doctors visits, inpatient stays. But they also pay for home and community-based services. So, I have home health care aides, and they pay for that, which is super important to keep me integrated and involved in the community. I live in my own house, and I have full direction of how I want to live and autonomy over how I want to live.

Joshua Sharfstein: People don't necessarily appreciate that part of Medicaid. Medicaid is thought of as something that pays for health care, like you said, and it has paid for health care for you, like if you have to go to the doctor or the hospital. But, through these home and community-based programs, the Medicaid program provides all kinds of services. So, maybe tell me a little bit more about the kinds of things that these services do for you. What do they allow you to do?

Demi Eckhoff: Yeah, so it's quite complicated. So, Medicaid is a federally-funded program, but each state has different waivers. And they're directed by each individual state. So, North Carolina—I'm actually not sure how many waivers they have, but they have a bunch of different waivers. So, I fall under the Innovations waiver, and they cover, whether it's home improvements for accessibility, services—other services that I need. But mostly they cover my caregiving waivers.

Joshua Sharfstein: Got it. So are there any home improvements that have been made through this waiver program in North Carolina for you?

Demi Eckhoff: Yes, they actually did my shower, and they widened the doors to my house.

Joshua Sharfstein: And that helps with, for example, a wheelchair.

Demi Eckhoff: Yes, so I use a motorized wheelchair full time. I have very limited upper body or lower body movement, so I have a roll-in shower. And the doors need to be wider so that my wheelchair can get through the door.

Joshua Sharfstein: And, so, it's basically—Medicaid has made it possible for you to live where you live.

Demi Eckhoff: Exactly, exactly. And it's possible because otherwise I'd have to be in an institution, if I didn't have my home health care aides.

Joshua Sharfstein: Yeah, so tell me about what the aides do for you on a daily basis.

Demi Eckhoff: In my interviews for them, I say—they always are like, “What will I do?” And I'm like, “Well, think of the job as being my hands and feet. So, anything that you do for yourself throughout the day, I need help with, physically.” Whether that's helping me go to the bathroom, preparing dinners with me, feeding me, driving me to appointments, typing—anything that you do, I need help with.

Joshua Sharfstein: Now, I wonder, you've met other people who get home and community-based services through Medicaid, and whether the kind of supports that you get are unique or if it's pretty common for people to get this level of support in the program.

Demi Eckhoff: Yeah, so what I can say is there are other people like me, there are lots of other people like me with these services. But there are more people like me that don't have these services, that are on the waiting list. The waiting list is up to, I think, 19,000 people now in the state of North Carolina, so there are quite a few people that don't have these services that need these services.

Joshua Sharfstein: So there are people who maybe aren't able to live on their own and have a job like you and have the kind of independence that you have because they're waiting. I should point out that these kinds of services aren't required to be covered by states—and we're going to get to this more—they're a state waiver. They're a state option, essentially. It's not quite like covering hospital services. So, what that means is that states can have waiting lists, and states do have waiting lists.

Demi Eckhoff: Correct, yeah. So, yes, a lot of people aren't covered, like you said. But I am fortunate enough to have—and I meant to say this in the beginning—I want to, you know, I realize my privilege in being able to access the table and represent people with disabilities. Because not everyone is able to access the table.

Joshua Sharfstein: Yeah, absolutely. So, let's talk about the Medicaid program. And we've talked a little bit about how much it's meant to you and to other people with different kinds of disabilities. You probably saw the headlines that there's a big piece of legislation that passed that is going to cut Medicaid quite a lot off its current rate of growth. How did you read those headlines?

Demi Eckhoff: So I hear them on my own but also all throughout the close-knit community of the disabled community. And we are all freaking out, I will say.

And we're nervous because each state is determined to make their own cuts differently, and they're all determined to do a budget. And so, North Carolina's budget isn't out yet. I'm going to all the DHHS meetings and, you know, they're being honest and saying that the budget isn't out. So we don't know how it's going to affect us.

Joshua Sharfstein: Let me see if I have this right. The states are facing Medicaid cuts, so they each have to come up with their own budget. And high of mind for you is whether they're going to change the programs that support home- and community-based services, like the ones you rely on.

Demi Eckhoff: Exactly, exactly. And that's fear within the disability community. Or, one of the fears, I should say.

Joshua Sharfstein: Yeah, and I was reading that some people think that that fear is misplaced, that states could just cut medical services, like the rates paid to hospitals and doctors, and not touch services for people with disabilities. How do you respond to that reassurance?

Demi Eckhoff: Yeah, so I hear—I'll be honest, there's a lot of misinformation out there, so we don't know, really, who to listen to, but I feel like a lot of people aren't being transparent with the disability community. Which is hard, yeah, because we don't know.

Joshua Sharfstein: In other words, it hasn't been decided, but when it does get decided, you're worried that there could be an unpleasant surprise there.

Demi Eckhoff: Yes, and we want to be prepared, I should say.

Joshua Sharfstein: You mentioned you're going to a bunch of meetings. What are those meetings about?

Demi Eckhoff: They're mostly about the budget and, you know, there's some grassroot efforts, there’s some with the DD—the Developmental Disability Council—there's some with the Department of Health and Human Services. So it's mostly like policy and budget and how we can all come together to unite and raise our voice.

Joshua Sharfstein: So it's good that you are able to go to those meetings and participate.

Demi Eckhoff: Exactly, and I realize my privilege in being able to, again, access the table.

Joshua Sharfstein: Yeah. But the result, you're waiting to hear. How is the community of people with disabilities coping with the unknown?

Demi Eckhoff: We are angry, we are upset, we are frustrated. There's a lot of confusion. But we are ready. We are ready to come together, unite and fight, and do whatever we have to do to keep our services.

Joshua Sharfstein: As you look forward, you mentioned the huge waiting list that exists in North Carolina. Are there changes to the Medicaid program that you would like to see?

Demi Eckhoff: Oh goodness, yes. Yes, I would like the waiting list to—obviously, the dream would be to not have a waiting list and for everyone to have services. Yes, I think it's so important to have people living in the community and not in institutions because that affects people's health overall—being a part of the community and living in houses and apartments.

Joshua Sharfstein: Right, and are there other policy changes besides additional funding that would help make that possible?

Demi Eckhoff: Ultimately—what I really want to do for my dissertation is—so, right now, every state is in charge of the state's waivers. So, because I have a North Carolina waiver, I can't just move to X, Y, and Z state if I want to because I have to start all over again on the waiting list, which is up to 20 years. So for my dissertation, I want to ultimately make it possible to have a portability law that allows people to be able to be on waivers and move state to state.

Joshua Sharfstein: Wow, so in a sense, you really couldn't easily leave Durham, North Carolina, to go to school somewhere else.

Demi Eckhoff: Correct, correct. Which is why the Johns Hopkins program is so perfect because it's online.

Joshua Sharfstein: Got it. Portability makes a lot of sense. And I'm looking forward to reading your dissertation before you've even written it, before you've even started a class. 

Demi Eckhoff: So am I. Trust me.

Joshua Sharfstein: Well, you have brought this issue to life for me. I mean, we read the headlines, but it really is a question about how this is going to affect people. What do you think? Last question, what do you think is at stake here?

Demi Eckhoff: Oh gosh. Our independence and autonomy. And even giving us a voice and empowering us. Because living in the community brings me a sense of empowerment and autonomy and independence. And I think that that's really what is at stake is our autonomy and independence and our voices to be heard.

Joshua Sharfstein: Well, you have a very powerful voice. So glad you shared it with us today. Thank you so much, Demi Eckhoff, for joining me.

Demi Eckhoff: Thank you, Josh.

• —New York Times
• —Disability Scoop
• —The Assembly
• —Public Health On Call (March 2025)

Guest:

, MPH, is a disability advocate, a registered dietitian, and an incoming doctoral student at the Johns ��ѻ��ý.

Host:

Dr. Josh Sharfstein is vice dean for public health practice and community engagement at the Johns ��ѻ��ý, a faculty member in health policy, a pediatrician, and former secretary of Maryland’s Health Department.