SPEAKER: Medical Assistance for Employed Persons with Disabilities.
MYRNA: I am Myrna Peterson, a retired educator and an MCD council member from Grand Rapids, Minnesota, representing Region 3. I’m a white woman with short, dark brown hair, wearing a bright red cape. I respond to the pronouns of she/her. I have limited use of just one arm and hand to operate my power wheelchair, as an outcome of a spinal cord injury 27 1/2 years ago. I am coming to you from my home office with a blurred background. I am very thankful that we are able to bring this event to you today virtually, because with this weather, I’d have a hard time getting to the cities.
On that note, I am pleased to represent the out-state Minnesota disability community here in Grand Rapids, the home of goMARTI, our self-driving vehicle project. This project is part of the Governor’s Council on Connected and Automated Vehicles, of which I am also a member.
I’m afforded these work opportunities because for 26 1/2 years, I have been a recipient of MA-EPD, Medical Assistance for Employed Persons with Disabilities. It is my pleasure to introduce to you our final segment on this MA-EPD program, a conversation with citizen advocates Brittanie Wilson, Rob Wudlick, and Julianne Nelson, plus Senator John Hoffman and Senator Jim Abeler. I’ll hand it off now to Jillian.
JILLIAN: Good afternoon, everyone. I’m Jillian Nelson. I am the Community Resource and Policy Advocate at the Autism Society of Minnesota. I’m a white woman with teal hair in a bun, wearing a black sweater. I am also an autistic adult. And my pronouns are she/her.
I am here, like Myrna said, with my friends and colleagues, Brittanie and Rob. And we’re here today before you in our roles because of an amazing program called Medical Assistance for Employed People with Disabilities, or MA-EPD. This is a program that allows individuals with disabilities to continue to access MA for services and supports after their career paths take them away from income-based qualifications.
Participants pay a monthly premium based on their wages. And this program has allowed so many people to achieve their career goals and still get the important support they need. However, this program hasn’t been adjusted since it was first put in place. And we’re working as part of a team on reforming a few pieces of it to improve access for our whole community.
I am a newer participant to this program, just in the last two years. I’ve always believed that if I worked, I wouldn’t qualify for benefits. And because of this, I went from crisis to crisis and really struggled maintaining stability, and a stable living situation. When I got MA-EPD, it meant that I could have the supports I needed.
I have my PCAs, I have sensory support, and more. My life literally changed, and so did my ability to be a great employee. When I got the support I desperately needed, the crisis stopped, and I was able to show up to work every day and put my best foot forward.
For me, though, accessing this program means I make choices. People with disabilities often make lower wages. Myself, I work for a smaller non-profit, because that’s where I find the support I need in a job I love. It also means I’m not rich. It also means that paying a percentage of my wages every month is an incredibly large added expense, and it means I need to make hard choices.
If I’m waiting for a reimbursement check from the county, I can’t pay my MA-EPD premiums and my car payment, or my MA-EPD premiums and my rent, or my MA-EPD premiums and buy necessities. I have to choose every month, and something always gets put off till late. And it’s never my premiums, because I can’t go without those supports. The cost of living increases and wages have not grown proportionately, yet the percentages of premiums of MA-EPD have stayed the same. And this means that every year, my purchasing power decreases, and yet I still have this commitment to pay if I want to remain stable.
One of the pieces we’re asking for in reform is to lower the premiums for individuals that are within income limits that make that financial stability more precarious. This program was designed to help people with disabilities reach the same starting line as everyone else. But with a significant financial burden, that starting line is harder and harder to reach. And with changes to premiums, hopefully we can remove some of those challenges.
I’m going to send it on over to my good friend, Rob, who’s going to talk a little bit about some of the challenges of the asset limits and how we’d like to improve that.
ROB: Hi. My name is Rob Wudlick. I go by he/him. I think I’m blonde. I’m kind of a dirty blonde white guy. Rough beard, short beard, with a wood background, wearing a white-collared orange shirt.
I’m a quadriplegic. I had a spinal cord injury 11 1/2 years ago. I’m a C4 quad, which means I have a hard time moving my arms and hands and legs and body. I’m in a power wheelchair. I require almost 24-hour assistance, seven days a week. Usually from family members, but that’s another story. And I currently work at the University of Minnesota in clinical trial project management, helping advance spinal cord injury research. And I am working and starting my own company. We’re trying to reduce the risk of pressure injuries by sensing pressure and providing awareness to users and clinicians.
You know, I’m in a situation where I don’t want to have to choose between losing my benefits and–I don’t want to–you know, a lot of us hide money, that are successful–not–it’s all legal, but it’s not–it’s not the way that I want to do things. And right now we’re limited with a $20,000 asset limit. And granted, yeah, we’re on–people like me, and a lot of other people are on a different spectrum than Jillian. And I was there once, when I started working. I didn’t–wasn’t–just trying to figure out how much I can work with my disability. And it’s a tricky situation.
But with $20,000, and with the job that I have, I want to be able to contribute back to my community, I want to be able to work–continue to work and be successful at it just like everyone else and have the same opportunities. This program really has been a great asset. But there’s–since 1999 when it was incepted, it really hasn’t been changed. And, you know, we’re looking at something where, you know, what’s a down payment on a house? Well, we can’t really save up to afford even a down payment, so we’re kind of limited on a lot of things that were there. You know, really it’s about building stability and equal opportunity to get us to the starting line and getting us out of the basement.
So, you know, our goal is to kind of work this session and create some reasonable solutions to help improve employee paaid benefits for people with disabilities.
Thank you. And here’s my good friend, Brittanie.
BRITTANIE: Thank you, Rob. Hello, everyone. My name is Brittanie Wilson. I am the Equity and Justice Director at the Arc Minnesota. My pronouns are she/her. And for a visual description, I am a Black and Hispanic woman. I have shoulder-length dark brown curly hair. I’m wearing a lavender sweater and disability empowerment themed earrings.
I am honored to be here today to speak about MA-EPD, a program that I have been on for ten years. I was born with a joint and muscle condition and navigate life using an electric wheelchair.
And like so many others in my community, I grew up with an understanding that if I made too much money, I would be kicked off of Social Security and state services that I need to live, including the CADI waiver and PCAs. Because of this, upon graduating college, I didn’t look for a job like all of my other peers. About two years later, I learned about the disability hub and made a call that would change my life. I learned that on MA-EPD, I could work while earning a competitive wage and still get the help that I needed. I was informed that I also needed to apply for Medicare, and I was accepted into both programs. I started working, and as I grew professionally, my wages increased.
One day, I received a letter explaining that I would need to start covering my Medicare Part B premiums in addition to my MA-EPD premium. At this point, I was barely making it by, and everything additional that I made went to my health care premiums. Another two years of successful employment went by, and I was notified that I would need to start paying for my Medicare Part A premium. There was no way that I could pay over $700 a month for my health insurance and still be able to afford the basic things like rent and food. It became clear to me that I would be forced to quit my job and apply for all of the services that I had been working so hard to stay off of.
When I called my county financial worker and told them my story, they said that there was nothing that they could do, and offered to give me food bank information. I was so frustrated, and most importantly, terrified for my future, but I refused to give up because working meant everything to me. I kept going up the chain of command, telling my story, and begging for someone to hear me and to understand the position I was in. After a few weeks and many phone calls, I finally got to someone who had the power to make a decision. And their decision allowed me to stay on MA-EPD without Medicare so I could keep working.
I’m not sure how many Minnesotans have been put in a similar situation who weren’t successful in solving that problem. But no Minnesotan should ever be forced to choose between working and relying on the system for health care. I hope that we can work together and gain your support for MA-EPD reform, which would allow folks to be reimbursed for Medicare premiums, among other equitable changes. MA-EPD is such an important program because it allows people with disabilities to work and live just like everyone else. It’s been a little over 20 years since this incredible legislation was passed, and many disabled Minnesotans have the benefit of thriving because of it.
Twenty years has also allowed us to find the gaps and barriers that stop people from living their full potential, that make people choose between the impossible. Reform is overdue.
Thank you, Senators Abeler and Hoffman, for being here. I would like to turn it over to you now for your thoughts on this important reform.
JIM: Go ahead, John.
JOHN: Thank you. Thank you. Thank you, Senator Abeler. Thank you, Brittanie. Thank you, Rob. Thank you, Jillian. And thank you, Myrna. Did I get that–Myrna? [indistinct speech]
I’m a little upset to hear of just the barriers that exist within our system, and so bear with me. I’m John Hoffman. I represent Senate District 34, Coon Rapids, Champlin, Brooklyn Park, Dayton, and Rodgers, Minnesota. I’m wearing a gray suit with a white shirt. I got brown hair–I think it’s still brown. And then I’m in a conference room, and I’m sitting in a black chair. And I’m in beautiful downtown “Ramtucky,” Minnesota. so if anybody’s ever been here, it’s the gateway to the West.
Real quick, last year, Senator Abeler–and you heard Carla Nelson talk about it just earlier on, just a few minutes ago–he was the chief author of a bill that was a workforce bill regarding, you know, caregiving support, stabilizing workforce, right, and this whole thing. That’s a prime example of something that we need to finish this year.
But in addition, Brittanie, there are so many gaps, and you just shot them out there. And Rob and Jillian too. We need to fix this.
On one hand, we have this low unemployment rate in Minnesota. But yet, on the other hand, we’re saying, “Well, if you work too many hours.” And I can give you lots of stories. S&L Team Clean out of Saint Paul, 40% of their workforce are people with disabilities, and they’re already starting to cut down hours because their person is maxing out where they should be. It’s like, why should that “should be” be there? And so thank you for your stories.
I am committed to bring–Senator Abeler, as a matter of fact, as the bill jacket gets up, you’re looking at two people that are gonna be absolutely there, championing this across the board. And with that, Senator Abeler.
JIM: I’m glad you can all be here, and Senator Hoffman, I’ve passed the tor–, the gavel on to him, but not the torch. We’re both carrying the torch for all this stuff. And it makes no sense at all to not let everybody work the most they possibly can to have everything good happen to them.
And so the Senate has–on a bipartisan basis, has been supportive of that. And Senator Murphy offered the amendment in our committee, which I worked with her on to find the money. And I don’t know how it got snagged up at the end, but we have to fix this, and I’m all in. And I’m so pleased for the leadership John Hoffman’s gonna show and as we work together to make a difference for all of you guys. So thanks for having me.
ROB: All right. Thanks for your response. Jillian, do you have any questions, or–
JILLIAN: I’m–again, I just want to thank you both so much for championing this issue. I remember this came up last year, and Senator Abeler’s autism council had a town hall on transition, and John came to the table and said–he tasked me and Maren Hulden with bringing him a bill on this.
JOHN: I did.
JILLIAN: You did. You said, “Come back and get me a bill.” It was right before a special session. You wanted it for a special session. So we went, we worked really hard, and we handed you a bill. And it didn’t go anywhere in the special session, but then we took off running come the regular session last year.
I am really curious as to what the message you would like for your fellow colleagues and–the House of Representatives, and fellow senators on what the importance of this bill is and what you would like to see them do when this crosses their desks and when this crosses the floor in just a couple of weeks here. Because we have a chance to change some real lives and make a profound impact on the workforce with this bill.
JOHN: Thanks, Jillian. You know, and Jim, if I could just–I’ll just add a real quick anecdote to that. I just met with Bentley from the Minnesota Chamber of Commerce. To me this is a workforce issue, period. Right? We desperately need people working in the state of Minnesota. There’s–the unemployment rate’s low. Companies, major companies, anybody, they’re saying bring us the workers, right? But if we’re putting barriers up that exist because of some old system, guess what? It’s time for reform. I heard that question. And so I think your allies in this are gonna be what we would consider in the Minnesota Chamber, and we’re actually–I’m gonna connect you to Bentley from the Minnesota Chamber, because he sees this across different other sectors as well. But you guys have an option to fix this. Let’s fix this. Senator Abeler?
JIM: Yeah, and just to be brief, I–some kind of message, like, “Would you let us work?”
JIM: And so, you know, there’s different compartments here meeting today, but Connect 700, this thing, some of the waiver programs, the exploration with the day services programs, and so on. But it’s all the same thing, and so forget the compartments. Let’s just make it work, and, you know, we’ve gotten snagged up before. I think now having probably a better chairman, maybe he can get something accomplished there. So go, John. And I’ll help you.
MYRNA: Okay. Thanks, everyone. We’ll need to wrap up. Thank you, Brittanie, Rob, and Jillian, and Senators Jim Abeler and John Hoffman for this robust conversation. We believe things will improve if we all work together.