ANNOUNCER: Minnesota Council on Disability logo, green and white stylized letters M and N on a blue background. Text, welcome to the Minnesota Council on Disability 2025 legislative forum. Our program will begin shortly.
Welcome back. And now our MC, Quinn Nystrom, moderating remarks from state leaders.
QUINN NYSTROM: OK, welcome back, everybody.
[APPLAUSE]
I don’t know if I’m clapping for myself. I’m not. I’m clapping for an excellent second part of the day. So welcome back, everybody. We are going to– I need to just make sure I’m on the right part.
We are going to kick it off with a conversation. As you had heard earlier, all state representatives and state senators were invited to attend and to participate today because it is a legislative forum. So I’m going to be facilitating it. So we will kick it off.
And maybe what I’ll do is, because you are new to the table, Representative Fischer, maybe you can do an introduction. And just so you know, we were also just doing an intro name, where we represent, and then also a physical description of what you look like. We have a lot of people online. So take it away.
PETER FISCHER: OK, thank you very much for allowing me to be here today. I appreciate being able to [AUDIO OUT] Green light here. Let’s try it. Test. Test. Oh, there we go.
All right, let’s try it again. Thank you. For those of you online, my name is Peter Fischer. I represent District 44A. And for those that would like to get an idea of where is 44A located, that is down here in the Metropolitan area.
It is representing two suburbs that are on the Northeast side of Saint Paul. The suburb that’s the largest part of my district is Maplewood. And thank you. I’ve got some constituents out there. It’s good to see Darryl and Nikki here.
And then on top of it, the other suburb I represent is the city of Little Canada. So those are the areas I represent. Thank you. I see somebody from Little Canada over there. Thank you. [LAUGHS]
So in terms of physical description, I’m not used to describing myself. I’m 5′ 10″ male. I am very much bald on top here with a little bit of gray on the sides. I wear glasses.
I am Caucasian. I’m about 190 pounds. So I’m a little bit overweight for my height. So those are part of my description.
And from there, I also wear glasses. I gotta remember that part. All right. Well, thank you for the opportunity to be here.
QUINN NYSTROM: Thank you. And do we want to go right down the line and have you introduce yourself?
KATIE JONES: Sure. Hi. Thank you, everyone, for being here. My name is Representative Katie Jones. I represent 61A, formerly Frank Hornstein seat. So I’m a first-termer to this legislature.
And I represent downtown Minneapolis and the Southwest area. So my physical description, so I am a 5 foot 4 female. I’ve got brown hair. I’m starting to develop some wrinkles underneath my eyes [LAUGHS] and wearing a blue dress today. I’m also Caucasian.
QUINN NYSTROM: Great. Thank you so much. Do you want to reintroduce yourself for anybody who maybe is joining from the after-lunch crowd?
BRION CURRAN: Yes Thank you. I’m pinch hitting today to join you back on this panel. I’m Representative Brion Curran. I represent District 36B, the White Bear Lake Heights area in the Northeast suburbs.
My pronouns are they and she. I am a quite short person with short brown hair, clear glasses. Today, I’m wearing a black blazer and a black T-shirt that supports the elimination of the subminimum wage.
QUINN NYSTROM: OK. Thank you so much. And what we’re going to do is I’m going to kick it off. As you and I were speaking, you were like, oh, I’m so much better if it’s sort of a Q&A or a little bit more conversational, instead of just standing up at a podium, which I think we probably all like better. So maybe if you want to kick it off by starting to talk about some of the work you’ve done and seen, and we can just get the conversation rolling from there.
PETER FISCHER: Certainly. Thank you for the opportunity. And where I want to start off, first of all, is that setting the table a little bit is four years ago, I chaired the Human Services Policy Committee. The last two years before this cycle, I chaired the Human Services Policy committee.
Did I say policy the first time? I meant the four years ago, it was the Behavioral Health Division. Thank you. I’m sorry. So I had Behavioral Health.
Two years ago. I had the Human Services Policy Committee. Currently, I am on the Human Services Policy and Finance Committee. So I’m not chair of that, but I do chair the environment or be co-chair of the Environment Committee starting on Monday.
One of the things I want to mention out there is over the last two years, as being chair of the Human Services Policy Committee, we were able to move a lot of great things forward in this space. And when this work was done, it was all done in a very bipartisan way. I will say that in the human services world, there’s been a lot of opportunities for great bipartisan interaction.
And to give you an idea of how all that worked out is when my policy bills came to the House floor for the last two years, I had 100% support for each year that I had my policy bill come through and very little debate on it. And it’s because this is an area that we all agree. We want to make sure that we’re supporting people out there who are vulnerable; people who, that if we’ve got the right policies in place, are able to live great, fulfilling lives and be very independent. And that’s the goal that we all want to have. And it’s something that Democrats and Republicans share together on.
So I kind of want to set the stage from that side. I think that as I’m looking forward, as we’re going into this new two-year cycle, where I think the challenges are going to be is it’s going to be more around finances. And that is going to be the biggest challenge. And I would say that from some of the colleagues that I’ve talked to so far this year, that what I am seeing is that they wish that we had more dollars available than we do.
We know we’re going to have some challenges out there. And the big challenges are going to be because we don’t know what the federal government is going to do for funding coming across. So what I’m going to say in that space is, I think, it’s going to be very confident that when we finish by the middle of May, that we’re probably going to have our bills, our policy bills, and our funding bills all in place.
And I think in this space that the biggest challenge will be that there’s not going to be enough dollars to address all the issues that we would like to out there. The needs are very great. And we’re just not seeing all the dollars we’d like to.
I do know that some of the great concerns that I always hear is making sure that we’re providing the supports out there so that people who are vulnerable, people who are disabled, our seniors, making sure that we’ve got the supportive services out there so that they can have a great quality of life and be able to live independently in the way they’d like to. And I think there’s a lot of agreement on that across both party lines. And I know Representative Curran and I have worked on a number of bills over the years, and we’ve always felt that very strong commitment. And we want to make sure that continues.
The challenge is going to be is when the federal government decides what they’re going to have for funding going forward. They’re talking about severe cuts to what they would pay to the states. And those cuts may be in the range of $2 to $4 billion. We’re not going to know that until after the session is over.
The likelihood is that we’re going to have to come back in the fall, probably September or October, and we’re going to have to be faced with, how do we balance our budget now that we’re $2 to $4 billion out? Result it means there’s going to be a lot of pain out there. What we’re going to have to do is figure out, where are things that we can try to be more efficient on?
Are there policies we can change that could give us a little bit more flexibility and capacity out there? And so these are things that we’re going to want to keep in mind. So I’ll pause at that point in time and let some of my other colleagues answer.
QUINN NYSTROM: And we’ll break for water.
PETER FISCHER: Thank you.
QUINN NYSTROM: If you would give an overview of the work, I know you said you are in your first term, but maybe what inspired you to run for this office, and then what you’ve seen this session and what you’re hoping to get accomplished in a complicated session, possibly on a federal and state level?
KATIE JONES: Yes, much more complicated than when I first started running about a year ago. But I really come here today because of the– I’m really focused on the ways that we get around. Not everyone in Minnesota can drive. Actually, one out of three Minnesotans can’t drive for one reason or another because of age, ability, accessibility, affordability, choice.
There are a lot of reasons. And I’m so thankful for my colleagues here who can focus on some of the health and housing and other issues that really touch everyone, including people who have disabilities. And one of my foci is really on transportation. For the last eight years, I’ve sat on the city of Minneapolis Infrastructure Committee. And we were an advisory committee making recommendations to the mayor for his budget in Minneapolis.
And we made sure to prioritize sidewalks with curb ramps. And I know this has been going on for the last 30 years since the ADA was passed, but we are still having to fight for that today. And the number of– I think it was– we did the math once, that if we were to keep up with our current spending levels in Minneapolis to reach the current standards for ADA ramps, it was going to take us like 200 more years to get them all in place. And that’s just not acceptable.
So we made sure to put that at the top of our priority list every year that I was there. And so that’s what I’m going to continue to do here at the legislature, but not only for the ramps, but also for transit. My campaign manager actually moved around in a wheelchair, and he opened up my eyes as to how functional buses are compared to trains.
I mean, if you’re getting onto a bus and there’s already a stroller on and there’s a wheelchair on and you’re a wheelchair user, good luck. You’re going to have to wait for the next bus. I personally don’t drive or I don’t frequently drive. I use transit. And I use– and I also bike and walk.
And so I’ve been in those shoes of having to wait another 20 minutes for the bus. It’s not great. It feels like you’re disrespected, that you haven’t been seen, that you’re not valued. And I value all Minnesotans regardless of how we get around.
And so I want to make sure we’re building a transportation system that is inclusive of all Minnesotans, and making sure that system is also providing good quality service. I’ve taken a ride with Metro Mobility. It is a good service, but I know it can also take rather long. [LAUGHS]
And so the way– I think we really need to continue valuing that service. Actually, I met with a constituent who was paraplegic. And his wife was talking about how he had been so fulfilled in his job and his career. He was a therapist, and it was because of Metro Mobility that he could get to his job.
That’s a great asset. And the better that we can make our standard metro transit bus and train system, the faster we can get that going, the more people we can carry, the better that we can serve everyone. And so those are the things that I’ve been pushing for, making sure we have dedicated lanes for buses and trains. That makes it so we can get to places faster. And that gives us all more dignity and equity in our ability to get around.
QUINN NYSTROM: That’s great. Thank you.
[APPLAUSE]
Representative Curran, do you want to touch on a couple of things?
BRION CURRAN: Yeah, absolutely. And thank you for allowing me to come back up on a different panel.
QUINN NYSTROM: Of course.
BRION CURRAN: So as Chair Fischer went into some different policy proposals and financial barriers that we’re facing this session and that we have faced in other sessions. And Rep Jones talked about some accessibility concerns. Before Rep Hicks left today, she and I and others were touching on a conversation surrounding civil rights.
And I think the disability community is right in the middle of some real civil rights issues, not just in Minnesota, but across the country. And so I think it’s important, too, that as we’re having these conversations, we are really pushy about rights in this conversation, because a lot of times it does come down to dollars. It comes down to resources. It comes down to infrastructure.
And that’s where the answers that our community gets are no over and over and over again. But here in the state of Minnesota and in our country, we have rights. And we respect and honor the dignity of everybody, as Rep Jones said. So thank you.
[APPLAUSE]
So I want to make it clear, too, that as we’re doing a lot of the work that folks might see as technical, very legislative, we’ve got a real values-based problem on our hands. And we cannot let the narrative be taken over that our community is expensive, that we don’t have the time, that we don’t have the money, we don’t have the resources, we don’t have the infrastructure. That’s not an answer. It’s not an acceptable answer. But, frankly, it’s just not an answer.
We have heard no time and time and time again on a lot of these issues. And we can debate those back and forth and try to pass policies year after year. But what I will not tolerate, and what I know a lot of us here won’t tolerate, is saying no when it comes to civil rights. That is a deep, deep issue here in this country, and we are not going to go back when it comes to the rights that people are afforded in this country.
And I am disappointed that up until now, the disability community and the rights that folks have hasn’t been highlighted in a lot of our civil rights conversations. I’m also disappointed at the reason why we’re having this conversation of why it’s so important to uplift the rights in the community and expand those rights. Because I’ve been talking to folks here today and had other conversations where accessibility is part of the problem, but it’s just about seeing people as having equitable access.
And again, as our attorney general said earlier, equitable, what is it that you need to achieve the thing that your neighbor is able to achieve without assistance? And that’s not a burden. That is a right.
And so I’m encouraged that folks are coming together and continuing to, as I said earlier, share space together in solidarity and not taking no for an answer and showing up over and over and over again and bringing another friend and another neighbor with you every single time. Because as soon as we start to roll back rights, the other things that we are talking about– policies, accessibility, infrastructure– those will be removed from the table as even a piece of the conversation. Because as soon as people don’t have rights and become less than, what do we have then to include people in the conversation or attempt to accommodate the needs of people?
So I just I want to stress the importance of as we’re talking about all the needs people have, the policy barriers that we have, the financial barriers that we have, we can’t even address all of those things if people start to strip away our rights. And we are not here for it. I’m not here for it. My colleagues aren’t here for it.
We’re here for you. And I know that you’re here with us. And please, keep showing up.
[APPLAUSE]
QUINN NYSTROM: Very well said. A question that I want to kick off, and you guys can decide who wants to take it first, but I know we have a lot of advocates in the room. But we also have a lot of people viewing virtually. I think there was a couple hundred the last that I heard.
And I think you mentioned about how you serve the people. And sometimes I think, like I said earlier, we see elected officials and sometimes we put them up on a pedestal, or we think they’re not accessible to us. And so what I would love to ask the three of you is, what are some of the things that you’ve seen that just everyday people advocates have done that have been very impactful?
Like, is there ways– I grew up in rural Minnesota, almost three hours away from here. I didn’t come down to the capital ever to meet in my state representative’s office. What are ways, what are some methods that people can do to reach out to you about different things, even if they may not even know a bill number, or they may not even know what year we are on the session? So just kind of real layman terms to people like myself who want to do something, but don’t know what and don’t know where to get started.
KATIE JONES: I’m happy to start, partially because you guys have all been here longer, so you may have some more things to say. I’ll say to date, the thing that has been most impactful to me is honestly just individual stories. When I’m sitting down one-on-one, whether it is in person or it is via Zoom or it’s on a phone call hearing your stories, that is what’s motivating.
I’m going to take an example, just recently from the Homeless Day on the Hill. And a woman was telling me her experience where she had a– she did all everything right. Like, even when you’ve done everything right and you end up in a situation that is untenable, that I will not forget her story.
I don’t want to open up her whole story here, but like, those are the things I’m getting chills right now thinking about Angélique. And that’s what’s going to continue driving me and thinking because– so I’m an engineer. I like to get into the details. I like to wonk out.
But I’m going to be doing it for her, and I’m going to be doing it for my campaign manager, because he’s told me his stories of how he ended up in his situation and moving about in a wheelchair. And so it’s like when we can see and hear and feel that there’s another human who’s experiencing this, we feel it deeply. And it’s when we feel that, that’s how we can take the best action.
QUINN NYSTROM: Thank you.
BRION CURRAN: Absolutely, well said, Rep Jones. And I would just add that, as representatives, when we’re at these tables and have a microphone in front of us and are able to take the space to share stories, and we try to personalize it as much as we can. And sometimes that includes telling our own story to try to get some empathy on an issue and things like that.
But as much as we might have lived experience as legislators and why many of us chose to do this work, it is still the most powerful story coming from you. And it is easy for people who work in the political space to ignore or dismiss the lived experience of a legislator or somebody in government. But it is not easy to dismiss the neighbors, constituents of folks who are serving you. It’s not easy to dismiss your story, and it shouldn’t be either.
So any time that you’re able to share your personal story, I know that’s vulnerable. That is difficult. And if you need some assistance in crafting that message, please reach out.
I know even if someone’s not your legislator, if you make a connection, even with somebody on the Human Services Committee, like those of us who sit at that table, we can help you. And we can help you deliver a powerful story. And those are the kind of things that legislators, that people who make decisions, that has the greatest impact.
And so I would say in the national landscape as well, what we’re seeing that’s very effective is frequent and consistent messaging from everyday people just like you, and talking about how the power that we hold has a significant impact on your life. That is huge. And then, again, the more that folks are sticking together and showing up in spaces together, when we see a crowd of folks at the Capitol, it makes a difference. And even if we are debating a bill or talking about a bill that we know isn’t going to pass this year or even next year, when we can look at the crowd of people who stand up and make themselves known at the Capitol with a powerful message, that resonates and it sticks with us. So please, keep at it.
[APPLAUSE]
PETER FISCHER: And I’ll add just a little bit more. I think my colleagues have covered most of it very well. When reaching out, it’s much easier today than it used to be in the past. We’ve got advances in technology that has really helped is when I first started 13 years ago, Zoom wasn’t an opportunity. Doing something remote like that did not exist.
We have that today. And all of us here at the table, and most of our colleagues are just as happy to meet with people by Zoom as they are in person. And meeting by Zoom is still just as effective. And it’s to the point where we’re even starting to do that in committees, making Zoom opportunities in committee.
And so if you’re ever interested in testifying before a committee, besides sharing your stories with your individual representatives, if you’re feeling comfortable enough, and there’s an issue that you would like to make sure you want to be heard, come down either to a committee. Or more importantly, if you see a bill’s going to be there and you can’t be there physically, but you have the time to remote in, ask for that opportunity. I think that’s one of the things that– I’m of an age where it’s hard for me to always remember, oh, yeah, I’ve got that Zoom capability.
And so I know it’s not easy to always remember what’s there in technology, but keep those in mind, because with what is happening, at least for in the House of Representatives, as we get a new building, we’re going to have much better capabilities than we’ve had in the past. And we’re going to have a space that’s much more welcoming. So I think the model that we all have is please engage, please reach out to us, please share with us, whether it’s by in-person, whether it’s by Zoom, email, phones, all available.
We love to hear from you. That’s the most effective way. Thank you.
KATIE JONES: And sorry, if I can add one thing, I think, the other reason to reach out to us is that I would rather hear from you than from paid lobbyists. They are asking for our time, [LAUGHS] and it is much easier for me to say, oh, I’m sorry, I have a constituent meeting. So, please keep that in mind.
QUINN NYSTROM: And I can assure you that is very true. When a bunch of us diabetes advocates were working to get the Alex Smith Emergency Insulin Act passed, one of the things we did, which we didn’t realize at the time, was to the representatives and the Senators who were working on that, we put together just a Word document of people, a little bio of their story, where they were from, and if they were willing to testify. And we gave it to the electeds who were working on it, so that when a hearing came up, they could say, hey, could we get person 1 and 4 to testify?
Of course, we were more than willing to do it. And so it was then always they had different stories that all the different committees we had to go through. And of course, the pharma lobbyists were always there with their prepared remarks. But I think it wasn’t just my own bias, but we always came off as better, more authentic because we had the lived experience.
And even though pharma has a lot more money than us just advocate volunteers, we won, and they lost. So hopefully that’s encouraging to everybody. And again, even if you don’t know a bill number, even if you don’t know what you even want to specifically ask, I know that the representatives up here and at the Capitol, they just want to hear from their constituents.
They want to hear what’s going on. They want to hear, are you a federal government employee? Even if you think, oh, well, that’s a federal issue, our state representatives and state senators were set up so that you have more access. And they can help you.
If there’s an issue with employee discrimination, if there’s– this should be a contact for everybody. And so hopefully, we can lessen that intimidation factor because you all seem very nice [LAUGHS] and very approachable, and that you would rather hear from one of us than one of the paid lobbyists. So we have about just two minutes left to wrap up here. So if you’d each like to either say what you are looking forward to in this session, if there’s, again, a specific issue, or if there’s really just any note that you’d like to close on, or if you’re looking for constituents about a certain thing to put a call to action out to the people in this room, and then also the couple hundred people online.
BRION CURRAN: I can start there. I’ll keep my comments brief. I’ve said this multiple times on this panel. I said it on the other panel. Keep showing up. Stay engaged.
We hear you. We see you. Some of us share in community with you. So don’t go anywhere. And please, let us know how we can help you at every step of the way.
PETER FISCHER: I will say that what I’m looking forward to is continued input, not just now, but when we have to start making tough decisions in a couple of months after this session is over, it’s going to be critical for your guidance and input to make sure that as we’re having to make some tough decisions, as what can we tweak to make better. And what are we going to have to sacrifice a little bit? The best way that’s going to inform me is to hearing from individuals like yourself because otherwise I’m taking a guess and I can tell you, I’m going to get it wrong, because I don’t live with the challenges and barriers that you folks do every day. And I need to hear that experience from you folks to be able to reflect, to make sure we get it right for you.
KATIE JONES: I’m going to talk about transit. [LAUGHS] So the governor had proposed a $32 million general fund cut in transit, and we are trying to get that restored. He’s using the argument that we passed a lot of, so a sales tax increase in the metro here to now take care of the transit issue.
And that was supposed to be expanding our transit service, not cutting it. So, please get in touch with me, if you care about transit. We will be having hearings on that in the next couple of weeks here and would love your support.
QUINN NYSTROM: Let’s give all three of them a big round of applause for taking time out of their busy schedule, for wanting to listen to the stories, the advocates. And again, at the end of today, there will be a survey that is sent out. So if you are interested in getting into contact, or if you are interested in testifying at one of those hearings, please put that on there, because we want to use this as a connector.
And the mission here at this legislative forum for MCD is to bring policymakers together with the disability community. And how do we bring us all together and continue those relationships after today, I think, is the real important thing. So let’s give one more round of applause. Thank you so much for coming today.
PETER FISCHER: Thank you for the opportunity.
[APPLAUSE]
QUINN NYSTROM: (WHISPERING) Thank you so much. Thank you. Thank you. Yeah. I appreciate it.
And now shifting gear, this is a really special treat and a real honor to get to tee this up. But for this year’s legislative forum, we have put together some special tributes to incredible advocates in the disability community who have left such a big impression. And I’m sure you will recognize many.
But this is the time where we’re really going to pay tribute to the groundbreaking work that they did and the long lasting impact that they will make here in the state of Minnesota, and probably all across the country from what they did and what they stood for. So let’s take a moment to look up at the screen or to continue to look at your screen. And let’s watch all three of them.
ANNOUNCER: The Minnesota Council on Disability honors the life and optimism of Master Hinkle.
DAVID FENLEY: Hello. My name is David Fenley. I’m a staff member here at the Minnesota Council on Disability. Just over a year ago, the world lost one of its fiercest humans.
Master Hinkle was a family man and an athlete. He had the heart of a lion and a smile that could melt steel. He was also really freaking strong, I mean, like, pop your head up with his arms strong. Bu that would never happen. because kindness and empathy flowed like a river from his soul.
I remember a time we were at the State Fair. This was probably six or seven years ago. And we wanted to get on probably what is one of the most inaccessible rides there. Watching him literally wheel his wheelchair up five abnormally steep steps with just brute force was a sight to behold.
Master had a fight in him that was not only palpable, but inspirational. Here at the Council on Disability, we knew Master through his disability advocacy. And through that, we learned so much about how to lead with strength, compassion and joy. There would be no impactful policy changes that improve the lives of people with disabilities if it was not for folks like Master.
There’s this silly notion in society that people with disabilities are broken or not normal. In fact, it’s quite the opposite. We are the norm. Disability is a natural part of being alive.
Watching Master interact with strangers, instantly disarming them of their preconceived notions and stereotypes that society has instilled in all of us, was, again, a sight to behold. We miss you, Master. And we were better humans and policymakers because of you.
MASTER HINKLE: I’m Master Hinkle. I’m 30 years old. And I have a spinal cord injury. I’ve been in a wheelchair since I was about three years old.
Deep down, up under all the metal and straps and everything, we’re just people that want to do things that people get to do. You can’t always do, but you can always try. I think that’s the biggest thing I want to get across to people.
ANNA HINKLE: Hi. My name is Anna Hinkle. I was married to Master for about 15 years and we were together for 20 years. I am a white woman wearing a black shirt with pink fingernails and brown glasses.
Master showed people that you can be and do whatever you are meant to be despite having a disability. He taught me that in so many ways when we first met. He also just gave off an energy that was infectious to people.
He was always willing to show the world what he could do, not what he couldn’t do. Five words that describe master were resilient, determined, funny. He was an extrovert. And he was a superhero.
Master loved his partnership with the Minnesota Council on Disability. He loved seeing everyone at the fair, especially. He was always so good at talking to people promoting disabilities. He shared his story with anyone and everyone. He was always full of ideas for anyone with a disability on how to make a life a little easier for them.
People say he was such a great coach. I think the reason he was a good coach is because he hated to lose. He was very competitive. He pushed athletes to be as good as they could be.
Master was strong, and I mean strong. He lifted a crazy amount of weight, known to bench press about 250 pounds. He was also spiritually strong because of his relationship with the Lord. He prayed and prayed all the time.
In a lot of ways, Master was bigger than life. We were together almost 20 years, so there were a lot of good stories to tell. The ones that stick out the most were any time he was playing basketball. This is where he shined and loved to be.
The one that I will never forget was a game in college that the Alabama men’s team played the University of Texas. He and his whole team, they poured their heart and soul into this game. That was one of the best games that he had ever played.
He was also a die-hard Alabama fan. Roll Tide. If you knew him, you knew he always wore something with Alabama on it.
We adopted three kids, and this was the sweetest memory of the day that we found out that we were going to be there forever parents. He never thought he was going to be a dad. So hearing this brought tears to the big guy’s eyes. Thank you for helping me remember Master Hinkle.
ANNOUNCER: The Minnesota Council on Disability honors the life and influence of Bud Rosenfield.
[MUSIC PLAYING]
NARRATOR: Partnerships are critical to how MCD makes good public policy for people with disabilities. Bud Rosenfield was a partner’s partner. He stood firmly in his belief that every person has value and deserves to be happy and healthy.
He was a reliable legal scholar, mentor, educator, and compassionate ally to the wider disability community– tenacious, whip smart, committed, forceful, articulate, authoritative. In his own words–
BUD ROSENFIELD: When we’re asking questions about what’s important to the person, we should ask the person themselves and not the guardian, not the family member, not the case manager. Any individual should be allowed to express their own ideas, their own opinions. They should be able to answer questions as they deem fit. They don’t need a guardian’s permission to say, this is what is meaningful in life.
ANNE HENRY: Hello. My name is Anne Henry. I’m a 76-year-old female with glasses and short hair, wearing a black top under a light green jacket. I retired after 42 years as an attorney at the Disability Law Center at Mid-Minnesota legal aid.
I’m joining you today to honor and remember Barnett Bud Rosenfield, a treasured colleague at the Disability Law Center for nearly 25 years and an outstanding leader in the pursuit of civil rights for persons with disabilities. Bud passed away unexpectedly in July of 2023 at the age of 57. We are remembering him at this crucial time because he provides inspiration to all of us to do as much as possible to protect disability rights and services.
Bud’s impressive work includes lawsuits and appeals, which challenged the use of abusive, aversive restraints; long waiting lists for community-based waiver services; and the denial of essential medical assistance services such as deafblind interpreter services, private duty nursing, assistive technology, and equipment. Bud’s work in leadership led to reforms in Minnesota’s residential and employment support services, guardianship, disability access, self-direction, individualized housing supports, and key due process rights to appeal. He was also a dedicated teacher and presenter on the rights of persons with disabilities locally, statewide and nationally, and a respected supervisor and mentor for many colleagues and an untold number of advocates from disability organizations.
Bud was guided by his passion for disability rights and justice, which grew out of his deep commitment to see that his older brother Paul, who has disabilities, was living his best, possible life. In December 2021, Governor Walz and Lieutenant Governor Flanagan appointed Bud as our state’s ombudsman for mental health and developmental disabilities, saying Mr. Rosenfield is a dedicated public servant with a proven track record as a passionate advocate for justice. In addition to all of his impressive accomplishments, Bud was a down to Earth, kind, very funny, father, husband, and avid sports fan, a truly wonderful human being. He lived a life of integrity and purpose.
We can all honor Bud’s work by engaging in sustained, vigorous advocacy as we face cuts to critical services, limits on civil rights, and outright attacks on persons with disabilities participation and inclusion in our communities. We each have a very important role in working to move forward, not backward, on disability rights. Thank you.
ANNOUNCER: The Minnesota Council on Disability honors the life and legacy of Margot Imdieke Cross.
[MUSIC PLAYING]
NARRATOR: Margot. this determined, influential, successful changemaker was a woman of integrity. Margot was tough, tender and tenacious, fierce, firm, and forthright. She was wise, humorous, authentic, kind, smart, loyal, generous, respected, and yes, even friendly.
REPORTER: In rural Stearns County, a leader was born.
GREG LAIS: She was a farm girl.
REPORTER: Margot first used a wheelchair as a toddler. And longtime friend Greg Lais says that stopped her from nothing.
GREG LEIS: She went out to the rockpile with her brother, and she said, it’s all rocky. And he said, you’re going to have to get here on yourself. And she said, well, how am I going to do that? And he said, just figure it out. [LAUGHS] And she did.
NARRATOR: Margot never, and we mean never backed down when institutions, cultural norms, governments, businesses, stadiums or anyone or any entity created barrier after barrier to access.
MODERATOR: Next, we have Margot Imdieke Cross, who’s had the title of accessibility specialist since 1987 with the Minnesota State Council on Disability, where she has worked for over 28 years. In this capacity. Ms Cross, a certified access specialist and wheelchair user, provides technical assistance, training, and community insight on state and federal access requirements, emergency preparedness, civil rights issues, and disability awareness. Most notably, Margot served as a Minneapolis Civil Rights Commissioner for 11 years, served on the Board of Directors of Access Press for seven years, and served as a member and Chair of the Minneapolis Advisory Committee on People with Disabilities for 20 years. Margot was also the first recipient of the Charley Smith award.
NARRATOR 1: Her steadfast resolve led to her being a highly respected disability rights advocate and renowned ADA building code expert. She routinely outsmarted discrimination and beat back ableism. She educated and argued, spoke out, and influenced. She changed minds.
Margot received awards for her work on so many things. One she was particularly proud of was the Twin stadium, at the time, the most accessible stadium in the United States plus the great reward it was to see the Twins play joined by her family and friends. What a day!
Another huge personal and professional accomplishment for Margot was her dedication and work on the Help America Vote Act. She worked with secretaries of state Mary Kiffmeyer, Mark Ritchie and Steve Simon. And true to her way in the world, Margot helped America vote. No tribute to Margot would be complete without a roll through the ADA moments.
NEWS ANCHOR: Margot was at the forefront of the disability rights movement, attending the historic signing of the Americans with Disabilities act in 1990.
MARGOT IMDIEKE CROSS: And so many of us experienced such injustice in just trying to live our lives. We have to safeguard our rights.
NARRATOR: Margot’s longtime friend Claudia Fuglie on Margot getting the protests and organizing done.
CLAUDIA FUGLIE: I knew Margot before accessibility was even known. Things were just not easy for anybody. Margot basically said, that’s it. We have got to get our equal rights.
This was before society even knew what equal rights were. They didn’t even know what accommodations were, or if they did, they totally ignored it. She gave us the call to say, it’s time. It’s time for us to speak out. And she coordinated a lot of the rallies, the protests.
And one thing that always stuck in my mind was she always would say, you fight for your rights. Don’t be afraid of what you’re doing, and you’re doing it for everybody. And don’t back down.
NARRATOR: And back down, she did not. It was a momentous day, July 26, 1990, Margot and her mentor, Justin Dart, attended the signing of the ADA in Washington, DC. The work had paid off.
GEORGE H. W. BUSH: Let the shameful wall of exclusion finally come tumbling down.
NARRATOR: In closing, we thank Margot. And of course, in true Margot style, she thanks the ADA.
MARGOT IMDIEKE CROSS: Thanks to the ADA. And congratulations to the advocates and supporters who work so hard to make our country more accessible to people with disabilities. The future is in front of us. We need to help shape it.
NARRATOR: But we can’t leave you without a classic Margot moment.
MARGOT IMDIEKE CROSS: It’s nice that folks are looking after each other, and that’s a really, you know? But again, just put in the curb cuts. I’d rather do it myself, but then I’m kind of an ornery ol’ cuss.
[PADDLE SPLASHING IN WATER]
[LOONS CALLING]
QUINN NYSTROM: What amazing tributes those were, and what incredible human beings. I know that I knew some of them. I hadn’t met others, but what I do know is their work and their passion has impacted my life as a Minnesotan. And so many of those things that I think we probably don’t even think of going to Target Field or all the hard work, all the meetings.
And again, what I love is Master, Bud, Margot they’re all just regular people. And each one of us has the power to make a difference and to change our world and to make it more accessible for every single one of us. And as one of the video people said, “The best way that we can honor all of them is by living out their memory of working together to create a more accessible state for all of us.”
And so with that, our next guest is Secretary Simon. He certainly knows Margot and all the work that she and others put into accessible voting. And like Margot, he believes voting is our superpower. And I will let him take it away. And give a big, warm welcome to Secretary Steve Simon.
[APPLAUSE]
STEVE SIMON: Thank you, everyone. I’m Steve Simon, Minnesota Secretary of State. I am a white male. I am about 5′ foot 8 inches tall. I have sandy-colored short hair.
And I’m wearing a blue blazer or sport coat over a white-patterned shirt. It’s a pleasure to be with you here today. Thank you to Quinn. Thank you to the Council of Disability. This is an important time.
You may know that in our office, the Office of Secretary of State, we have a lot of responsibilities. We have a lot of duties. They are either in the Minnesota Constitution, or they are otherwise at Minnesota State law.
But there is no question that the duty of ours and our office that gets the most attention, the most interest, and yes, the most scrutiny is elections. We oversee the Minnesota election system. Now just to level set here, let me tell you what we don’t do.
We do not count votes in our office. We never have. We probably never will. Vote counting happens in thousands of places across Minnesota at the township, city, and county level by your friends and neighbors. These are folks who stand up and step up and do the job of being election judges and poll workers.
So we don’t do that, but we do so much else in the realm of voting and democracy. For example, way before anyone votes, we do things certify the elections equipment for use in Minnesota. And way after everyone votes, we do things like post-election reviews to make sure that the math lines up, that the numbers add up, that everything ties together. We check the work.
And in the middle, like right now, when we’re in the legislative session, we spend a lot of time in the Capitol with legislators trying to tweak and change and perfect our election system. So as a result of all that, I like to say that we and I are in the democracy business. And it is one heck of a time right now to be in the democracy business.
You may know this, but even if you know it, it’s fun for me to repeat. Minnesota is a champion of voting. We are literally, most years, champions of voting, number one in the country in overall voter turnout. I’m sad to report that this last election, we missed being number one by 2/10 of 1%.
The worst part is that Wisconsin beat us. So it’s a border battle. We’ll get them next time. But the silver medal is just as shiny as the gold.
But we want to take our rightful place next time as number one in the country. But we know we have work to do because not every community, either geographically or demographically, votes at the same sky-high numbers as the state overall. So we know we have work to do.
And in our office, when it comes to the disability community, we have tried to do our part. For me, it’s somewhat personal. I have a son with special needs. So I always have him in mind when I’m advocating, along with so many people in this room, online, or not even with us here today, for people’s rights when it comes to voting and democracy.
So I wanted to tell you about just a few examples of what we’ve together been able to accomplish over the last few years. I should tell you, as a baseline, that one of the things we’ve done for many years in our office is we have a disability advisory council. There are people in this room who have attended those meetings.
We have a quarterly meeting that we convene. People can show up in person, or we do it via Zoom or Teams, where we invite stakeholders from all over Minnesota to come in, participate, tell us what we’re doing, also tell us where we can improve or maybe what we’re doing wrong when it comes to access to democracy for all Minnesotans, regardless of ability, regardless of background, regardless of zip code. But let me just talk about a few accomplishments that we can all be proud of in terms of how we’ve tried to level the playing field for everyone in Minnesota.
One has to do with the ability to vote from home. You may know that a decade or more ago, we passed a bill in Minnesota that allows everyone who’s eligible to vote, absolutely everyone to vote from home. You no longer have to have a doctor’s note or an excuse or an explanation. We just said, if you’re eligible to vote, you can vote from your couch. You can vote from your kitchen table. And it’s no one’s business why you want to vote that way.
And in Minnesota, an increasing number of people have taken advantage of that. In the last election, just a few months ago, 39% of Minnesotans did not vote on election day of those who voted. 61% did, but 39% chose to vote either from home or otherwise by mail or in person by absentee. So it’s growing in popularity.
But here’s the special piece that we’re particularly proud of. For years, there’s been a federal law and state laws that allow overseas and military voters to have certain privileges when it comes to voting. And probably the biggest privilege is that if you’re a military or overseas voter– this is for decades– you can have your ballot sent to you electronically, your blank ballot.
We had the idea, working with so many of you, to extend that privilege, to extend that shortcut, if you will, to Minnesotans with disabilities so that they can receive that ballot, that blank ballot, electronically instead of having to make it paper. That’s one thing that we were able to do in the last couple of years, which will make voting even better and even smoother for a lot of people. But we understand that doesn’t get to everyone, that doesn’t address everyone’s needs. So there’s always more work to do.
Let me give you a second example. Until about four years ago, believe it or not, even in Minnesota, where we pride ourselves on good laws and good culture when it comes to voting, even in Minnesota, there was a bad law on the books. Usually we’re about getting good or better laws on the books, but here was an example of a bad law on the books.
And this law that we had in Minnesota said, for many years, that if someone wants to assist another person in a polling place for whatever reason, it could be by reason of a person’s disability, it could mean an English language barrier, it could mean anything, if you wanted to assist someone else in the polling place, you were limited to assisting three people. A fourth would be illegal. So you could assist three people.
So my late father later in life had a severe disability. He had Parkinson’s disease. And flowing from that, he had some mobility and balance issues. So I used to bring him to the polling place every election. And I could assist him in the polling place.
Now that’s the only one I would assist. If two other people asked me to, I could. If a third in addition to my father did, I would be breaking the law. So there was this arbitrary limit.
So we went to court, and we initiated litigation. And we had great help from the disability community. And we said, this is a violation of the federal Voting Rights Act, the epic, famous 1965 Voting Rights Act, which said and still says that a voter can have the person of his or her choice help them in the polling place. That’s what the Voting Rights Act said.
It didn’t say, you can have anyone help you want unless they’ve helped three other people. It said, you can have anyone. They don’t even have to be an eligible voter. They don’t have to be a resident of the state. Anyone you want– it could be a 10-year-old.
That’s what the federal Voting Rights Act said. And after some protracted litigation, we won. And now that law has been stricken from the books in Minnesota. So–
[APPLAUSE]
–as many of you who have been around the capital know, this is a good example of the fact that sometimes when it comes to public policy, it’s about going on the offense, passing bills. But sometimes it’s about defense, getting rid of or blocking things that are there, either proposed legislation or laws that you need to get rid of.
A third example I want to tell you about is one that did not require legislation. We didn’t have to go to the legislature and ask for anything, including money. It’s just something we decided to do because there was a need.
We saw the need. We met the need, not alone, but with the active help of many people in this room and otherwise in the community. And that is starting a couple of elections ago, we started up an ASL– American Sign Language– call center at election time, which means that in addition to the normal call center that we always stand up in the weeks before an election, which gets thousands and thousands and thousands of phone calls on everything from where someone’s polling place is, how they should vote absentee, how they should go to ballot to their child out of state in college and the like, we knew that phone setup would exclude certain people. So we stood up with the help of so many, an American Sign Language call center, which has been a huge success, which has gotten national recognition–
[APPLAUSE]
–and more importantly, has enabled people who otherwise wouldn’t have the chance to get their questions answered in a language that connects and makes sense for them. I get asked a lot, given my job, why I think it is that Minnesota does so well in voting year after year after year. People will say, well, you say you’re in the democracy business. You must have a theory.
You must have an idea about why it is that Minnesota does so well. Why are we most often number one or number two or number three in the country? What is it?
Is it luck? Is it coincidence? Is it something in the water? What is it? And I always say, I think it boils down to two things.
One, good laws. And two, a good, pro-voting culture. And there is no limit to what we can do together operating in those two worlds, the world of legislation and laws and the world of just a pro accessibility culture. There is no limit to what we can accomplish, not just in the democracy business, but in every business. That’s what we’re seeing here today.
So I want to thank you for your time and for your attention. There’s more work that we can be doing. There’s no question about that. But Minnesota, really, over the last number of years, has led the way in showing the rest of America what it means to be as accessible as possible, to make sure that our democracy truly works on a day-to-day basis for absolutely everyone in Minnesota.
That’s the goal. That’s the vision. That’s the dream, and we’re going to keep on chasing it. Thank you very much. Thank you.
[APPLAUSE]
Thank you. Sure. If you’d like to.
QUINN NYSTROM: All right. I just asked him if maybe I could ask him a couple questions because we were running ahead of time. And why not? So one of the questions I was going to ask was, when we had the legislators here earlier, it’s a lot of advocates and people who are a part of the disability community.
And the legislators were giving us different ideas of how we could contact them and tell them our stories or be of help. So in your office, how would you best recommend people in the disability community, if maybe they’ve had a voting thing or like, I’m sure your new phone bank came about from hearing from feedback, what are things and ways that– and I can just step away, and you can use this mic. What are ways that people can be impactful for the line of work that your office does every day and so that Minnesota can get the gold in 2026?
STEVE SIMON: Well, thank you very much. Great question. First, let me say, I loved seeing the legislators say what they do. And if I can just piggyback or add on to what they said, before I was in this job, I was in the Minnesota House of Representatives for 10 years, representing Hopkins and Saint Louis Park. Is anyone here from either of those places? OK, because I was going to be extra nice to you, if you were.
Here’s what I can say. And this is a happy and good thing about advocacy at the legislature and also in our office. I think it’s one and the same. You look at that big, white, beautiful, marble building as imposing and big and grand as it is, and it’s very easy when you look at those giant marble pillars to picture in your mind, layers upon layers of insulation, blocking elected officials from everyday people. It’s easy to do.
You look at that building, and it looks heavy and big and large and impressive. I’m here to tell you, as I hope you saw today, that these legislators and these public officials, myself included, are shockingly accessible to you. That’s the good news.
I will tell you, it is easier than you think to get the attention of an elected official. That doesn’t mean you’ll get their vote necessarily. That’s a different story. But you absolutely can get their attention, and it is easier than you think it is to do.
So the test for me always was in the legislature and now if I would then and now get an email from a handful of people on an issue in a close period of time, so not spread out over a month, but if five or six or seven or people emailed me on a particular issue, no matter how obscure, it could be a bill about changing plumbing regulations or something like that. But if three or four or five or six people emailed me within one or two or three days, I’m going to take notice of that. It doesn’t mean I’ll come over to their point of view necessarily. Maybe it will, maybe it won’t, but it will get my attention.
It will get the attention of your legislators. Trust me over there with the legislature, I know having served there, everything from the way the mail is sorted to the way the staff is trained rewards exactly this kind of outreach. So just understand that it’s easy to get the attention of public officials.
So, as to our office in particular, I mentioned that on a quarterly basis, we have what we call our Disability Advisory Council. Some of you have attended that. I urge you to, either remotely or in person, where we have really frank discussions, not just about what’s going on in the legislature, but what’s going on out there in all 87 counties in terms of accessibility of polling places and other issues.
So contact our office. If particularly you have an idea or feedback or pushback or criticism, our tender feelings will not be hurt, I promise you, if you have a criticism about the system, about our office, about how something is being handled. Out there, we have thousands and thousands of polling places in Minnesota.
They’re not all equal. They’re not all equally accessible. And so we want to hear from you. So I would say, contact our office, whether it’s through our Disability Advisory Committee or not. Contact our office, shoot us an email, send us a letter, make a phone call, whatever it is, you’re going to get my and our attention. That’s the best way I can put it.
[APPLAUSE]
QUINN NYSTROM: And I’m sure that we can, as a follow-up, make sure that we put that information so that people are online and here and they’re like, what is that email or what is that phone number, that they will have it. So looking ahead to 2026, what are things– I know we all know because we’re taking in the news and a lot of news and a lot of different things on social media, what are things that you guys are looking ahead for 2026 to making things accessible, to making sure that we all have access to a fair election?
What are some of those things, as you’re continuing to improve, continuing, like you said, if our military veterans had access with an electronic ballot, why couldn’t we do that? Things like that. What are some things that you guys are looking forward to, and then also making sure maybe things that are going to stay in place?
STEVE SIMON: Well, as I mentioned, when it comes to public policy, it’s about both offense and defense, getting good stuff done and blocking the bad stuff. And there’s some of both, as I look ahead to 2026. So one of the things that a number of states are talking about doing, and that we in the past have looked into, is allowing for certain voters, not only the electronic transmission of a blank ballot, but allowing the electronic transmission back of the completed ballot.
Now, that’s a very hot topic and a controversial topic because you have to make sure it’s secure. You can only want to do it if it’s secure. There’s some talk of some new technologies that would make it more secure than it’s been in the past. So that’s a discussion among all the states, not just Minnesota, about whether and how we can make that happen. So that’s an offensive piece.
I would say there are a number of defensive things as we look ahead to the next, under two years now, 20 months, let’s say, until the 2026 election. There is a piece of legislation circulating at the federal level, which should give us pause, in my opinion. It’s slated for a vote sometime this spring at the US House of Representatives. It’s called the SAVE Act– S-A-V-E.
And the SAVE Act would impose a requirement all over America for all federal elections that in order to register to vote or register to vote, you would need to show documentary proof of US citizenship. That means a birth certificate or a passport. The problem is, 69 million American women don’t have the current last name that they did at birth. So that would mean for them, presumably, they would need to find a birth certificate and some sort of marriage record.
21 million Americans have neither of those things. They have no proof of citizenship. They don’t have a birth certificate. They don’t have a passport and the like.
In the one state that has tried this, the same way that they’re proposing here– that was the state of Kansas 10 years ago– they’re not doing it anymore. And my counterpart in the state of Kansas is willing to tell the world that it was a disaster in Kansas. So that’s just something I want to warn folks about. It’s not even necessarily specific to the disability community, but that’s something coming down the pike, speaking of offense and defense, that we want to make sure doesn’t happen, at least in the form that’s being talked about right now.
One other just technical point I should make, part of the work of our Disability Advisory Council, working with the Disability Law Center and others, is doing surveys of polling places. Now we have 3,000 polling places in Minnesota. We don’t have the people power to go ahead and do 3,000 at once. But we’re doing it chunk by chunk, piece by piece, taking advantage of special elections, primary elections, and general elections to do an inventory of as many polling places as we can in Minnesota to make sure that they are compliant with everything from bathroom access, to door widths, to parking proximity, to elevators, to the surface, the voting surface, to the presence and functioning of elections equipment meant to be assistive voting devices.
So we’re doing that work little by little by little all across Minnesota. And that’s going to continue between now and 2026. Thank you.
QUINN NYSTROM: Thank you so much. Appreciate it.
[APPLAUSE]
Clearly, math was never my forte. So thank you for correcting me on that. We’re in 25, and we have an election next year. So I’m not in 2024 anymore.
And I’ll say, like Secretary Simon said, our electeds are a lot more accessible than I think a lot of us realize. I walked in a parade with him in 2014, in my hometown in Brainerd. The same guy I met there who was nice and approachable also sent me a text on the day that I got married congratulating me. And so not only do I respect the work that he does, as he says, he’s in the democracy business. And yes, he is.
But he’s also in just being a good human. And like he said, if you have a criticism, he has a big job, a big role in our state. He wants to hear that.
He doesn’t have a thin skin. It doesn’t hurt his feelings. He knows he’s a good person. It’s our jobs to relay that information to our electeds.
But on a personal level, I have a lot of respect for Secretary Simon and just know that his office, as well as so many others, really want our feedback. And that doesn’t mean just you’re so wonderful. You’re so great. It could be, I tried to vote at this spot, and this was inaccessible.
So thank you so much for taking time. I know what a busy and wild world it is right now for you. So thank you. And keep on doing the good work. And let’s all work together to get the gold medal back from Wisconsin next year.
[APPLAUSE]
We are going to now go into our next segment of more incredible advocates that we’re featuring. So this segment actually has various different issues that they’re going to talk about. And then we’ll see, are you as curious as I am about maybe what issues that they’re going to highlight? So I’m going to say, let’s roll the tape.
ANNOUNCER: And now, nothing about us without us. Comments from advocates continue. To get us started. Steve Reinardy on metro mobility issues.
STEVE REINARDY: Oh, hello. My Name is Steve Reinardy. I live in Inver Grove Heights. I am a white male. I go by he or him.
My hair is brown. I have green eyes. And I wear a black shirt with colored stripes. I do talk slower, slower than others so I can be understood better.
I am legally visually impaired, and I cannot drive. It has been that way since I was very young. I do rely on services for transportation to get me around.
I mainly take Metro Mobility which has its challenges. They are state funded and are short staffed and use outdated tech. It has been that way for many years.
Metro Mobility, however, is a door-to-door service, but it is not always reliable. There have been many times when my Metro Mobility rides were very late, did not come at all, or I was on the Metro bus for many hours. And this is when it’s not weather related.
I work about 16 miles from my home. There are times it takes just under two hours to take me 16 miles from my home to work. I understand if things go a certain way occasionally, but this happens to me and many others several times a month.
I like the service in concept, just not in a practice. I just want to get to my work most or all of the time so I can pay for what I need and want. We have a good foundation here in the metro area for transportation. If we can just improve it a bit more, you will have an expanded workforce to fill in the gaps, fill in the gaps in employment that we need right now.
Please do not take that away or limit it. The disability community is a huge, mostly untapped resource of good, loyal, hard working people that we cannot afford to ignore. Thank you for your time.
ANNOUNCER: Next up, Jonathan Murray on Crip Time and the Disability Time Tax.
JONATHAN MURRAY: I’m Jonathan Murray. I’m white, non-binary, with long brown hair in a ponytail, glasses, wearing a purple dress shirt. I use any pronouns.
I work with non-profit strategy and social return on investment in disability policy. I’m also multiply disabled and autistic. We often hear about pulling yourself up by your bootstraps, but for disabled people, this ignores the reality of the disability tax.
This hidden tax, combined with the impacts of crip time erodes our financial security and social capital. Crip time refers to how disability impacts our experience of time. The system demands we conform to a rigid schedule, leaving us constantly behind.
The disability tax compounds, hitting some harder. Femmes, people of color, queer folks, rural communities, and those of us mandated to live in poverty to get health insurance face greater costs. We need solutions that address this compounding effect. Disabled people must lead in crafting and enforcing disability policy, policies without our input fall short, leading to fractional value, inefficient services, and budgets that limit us. Those who live the barriers see them best.
In Minnesota, social capital can be a weakness. If you’re a mayor or governor, your street probably gets plowed first. This makes it harder to grasp the experiences of friends who can’t get their power wheelchairs over ice to get on the bus.
This isn’t about handouts. It’s about being our active allies in powering our resilience, innovation, adaptability, and problem solving. It’s about sharing power and building together on our journeys, handing off so the torch never hits the ground during our crip time.
Our curb cuts help move your loads. Without us doing things differently out of necessity, your journeys get longer and harder. Envision a world where we recognize the disability tax.
And it’s automatically reimbursed. We run disability co-ops to group-by supports that fit us. Employers and service providers understand crip time and offer flexible schedules and accommodations.
What will the world look like when we teach the next generation not to leave each other behind? Let’s build a world where disability is a strength, not a burden. Our resolve to leave no one behind can build a world where no one is left behind.
ANNOUNCER: Alicia Lane on deaf and hard of hearing issues.
ALICIA LANE: I’m Alicia Lane, a white Hispanic woman with dark, wavy hair. I’m wearing a black jacket, a black shirt, clear glasses, and a bird medallion necklace. My pronouns are she/her.
I’m communicating in American Sign Language, and you’re hearing the voice of my interpreter. I serve as the Government Relations Director for the Minnesota Commission of the Deaf, Deafblind and Hard of Hearing. We at the commission are growing increasingly concerned about the political discourse that we’re seeing around disability.
Some federal officials are using words such as threat, burden, and parasite. Disabilities are a natural part of the human experience. Most will experience a disability at some point in life. Half of Americans aged 75 and older have a hearing loss.
I myself became deaf from a disease that today can be prevented with a new vaccine. But diseases are evolving too, and new vaccines continuously have to be developed. A world that is evolving biologically, geopolitically, and technologically means disability is here to stay. The sooner we embrace disability as a natural part of the human experience and recognize the strength of our adaptability, the healthier we will be as a society.
This year, our rights are more at risk than ever. We at the commission have been talking with legislators about codifying into state law, the rights of Minnesotans who are deaf, deafblind, or hard of hearing. We are working to support Minnesota’s aging population and to improve data collection on language acquisition for all children. We are also closely monitoring policymaking on emerging technologies such as artificial intelligence, telehealth, and video remote interpreting to ensure that they are being applied appropriately.
Now back to ability. This is exactly the strength that we and other disability groups bring. I call upon legislators to reach out to the commission early for anything having to do with communication, access, or hearing loss. We and other disability groups are accustomed to not only thinking, but living outside of the box. With our creativity and adaptability, your policy solutions will strengthen society by embracing disability as a natural part of the human experience.
ANNOUNCER: Dani Marie Indovino Cawley on AAC, Augmentative and Alternative Communication Devices.
DANI MARIE INDOVINO CAWLEY: Hello. My name is Dani Indovino Cawley. And I’m a 41-year-old white woman with long, dark brown hair worn in a side ponytail, auburn brown eyes, and bright red glasses. I’m wearing a V-neck dress with blue and white stripes.
I’m a self-advocate and a disabled mom of two kids with disabilities, Mabel who’s six, and Tony who’s four. I’m here to talk about augmentative and alternative communication devices, or AACs. AACs are devices or tools that help someone to communicate. It can be as complex as a speech generator or as simple as a laminated board with pictures.
Many people with all different types of disabilities will need some form of AAC to communicate. In many ways, it’s to expressive language what a hearing aid is to receptive language. Both of my children had speech delays, but my son’s persisted a lot longer than my daughters, and eventually he was diagnosed with autism level two.
The summer before preschool, he had less than 50 single words to communicate his needs. This led to meltdowns, tantrums, and an overall stressed out, frustrated kid. He couldn’t tell me what he needed. So I felt like I was failing at my most basic job as a mother, helping him feel safe and cared for. It was infuriating for both of us.
Over that summer, we used image flashcards to communicate with each other, but he had more to say than single images could offer him. So the frustration continued. His speech therapist suggested we try a computerized AAC device, often called a talker. It looks like a tablet and acts like an interactive picture board with more options and opportunities for complex language.
My son could use a variety of noun, verb, and adjective options to create sentences that the device could then speak out loud. It could be his voice. Finally, we could connect the way we both want it to.
However, when the therapist put in the prescription, my insurance denied it outright. I appealed, and they informed me that regardless of medical need, my policy precluded any coverage for AAC devices. It felt impossible.
Why wouldn’t insurance cover a tool that could help my child talk? One of the most basic human needs. Why would they pay for years of speech therapy, but not the device that could help him actually progress?
I dug out my policy, and there it was under the list of exclusions any augmentative and alternative communication devices. Through discussions with other families and providers, I’ve learned that AAC devices aren’t just for kids with autism, like my son, but are used by children and adults with cerebral palsy, with Parkinson’s disease, ALS, dementia, brain injury, stroke recovery, locked-in syndrome, apraxia and more. If a person has receptive language or the ability to understand and use language, but not the physical ability to create it with their body, whether through speech or sign, an AAC could work for them, yet they’re almost always excluded from private insurance policies.
One family I spoke to said that even when they paid out of pocket for their children’s device, their insurance would not pay for the speech therapist to teach her child how to use it. My speech therapist suggested we get our medical assistance or a waiver to fund the talker. And while we wait to get through the tougher process, Tony was finally able to tell me that he loved me and has said it about 100 times a day since.
We’re lucky that he’s been able to speak without a device. But every day, someone in the state has a stroke, gets a TBI, receives an ALS diagnosis, or learns they’re autistic. They’re told there’s technology that can help them to communicate, but in order to access it, they either need to pay astronomical prices or wait months to get disability benefits.
In Minnesota, we already recognize the importance of being able to communicate with those around you. Our legislature saw to it that if you have insurance, you have access to hearing aids. This should be no different. I ask you to support bill SF 1101 and its upcoming house companion bill, to ensure that all Minnesotans health insurance plans, private or public, cover AAC devices and the therapy to use them because everyone deserves the right to tell their mom, I love you. Thank you for your time.
ANNOUNCER: A message from Jillian Nelson on subminimum wage.
JILLIAN NELSON: Hi. My name is Jillian Nelson, and I am the Policy Director at the Autism Society of Minnesota and an autistic disabled adult. I am a white woman with teal hair wearing a teal sweater.
Here in Minnesota in 2025, we still have 3,493 individuals with disabilities being paid less than minimum wage for their workplace contribution. Their average hourly rate is only 410 an hour, and these workers rarely work more than eight hours a week. This is hardly a livable wage.
Presently, Minnesota still uses a program called Section 14(c) or subminimum wage that allows businesses, such as day programs or vocational programs to pay people to do certain types of work for less than minimum wage. In 2020, a group of self-advocates began this legislative fight to end this injustice and ensure that people with disabilities are paid equal wages to the rest of society. This work led to the legislative task force on eliminating subminimum wage, which brought together a talented group of self-advocates, professionals, and providers to create a plan to support programs and people in moving away from this antiquated practice.
In 2023, the legislative body put most of that plan into action, except actually ending the use of subminimum wage. Now, in 2025, the Coalition for Disability Wage Justice is more than 36 members strong, including the cities of Minneapolis and Saint Paul, many counties, advocacy organizations, and some of the state’s largest unions. This session, we are asking our elected members to finally finish what the disability community started and set an end date for the use of subminimum wage.
All people with disabilities deserve all of the same rights as people without disabilities, including wage equity. We are capable of participating in our community and our economy, and have more to offer society than limited work in sheltered settings. Ending subminimum wage will open up space for all people with disabilities to find employment that meets their needs and their interests. This conversation is headed to human service and labor committees. We hope that you will join us on this journey and tell your elected representatives how important this issue is.
ANNOUNCER: Sumukha Terakanambi has something to say about medical assistance.
SUMUKHA TERAKANAMBI: My name is Sumukha Terakanambi. I’m 26 years old, and I live in Lakeville, Minnesota. I am an Asian-Indian male with black hair, a black beard, and a black mustache. I’m wearing glasses, a gray T-shirt with a Champion logo over a black long sleeve shirt. I am sitting on a black and gray power wheelchair.
When I was four years old, I was diagnosed with Duchenne muscular dystrophy, a rare neuromuscular disease that causes muscle deterioration over time. As a result, I require assistance with most physical tasks, including acts of daily living. I also use a power wheelchair for mobility.
Just like anyone else, I have the desire to work and be active in my community. I currently work as a Public Policy Consultant with the Minnesota Council on Disability and the Rare Disease Advisory Council. I also serve on the Minnesota governor’s council on Developmental Disabilities and the Dakota County Disability Advisory Council as a self-advocate.
At this moment, it feels like the disability community is under attack. Every , day I am bombarded by news reports, advocacy action alerts, and social media posts about threats to special education, civil rights, health care, rare disease research funding, and inclusion initiatives. As an advocate, it is overwhelming to address multiple issues at once. One issue that is especially top of mind for me is Medicaid. It is unfortunate to see proposals being considered by lawmakers to make cuts to such a vital program for people with disabilities.
Right now, I’m on the CADI Waiver, which is paid for important services such as personal care assistants for acts of daily living, transportation to get to work and into the community, home modifications to make my home more accessible, durable medical equipment to assist with personal cares, and assistive technology to support my employment. These services have provided me with independence and have greatly improved my quality of life. Losing any of these services would cause significant hardship for me and my family. It would cause my health to decline and would prevent me from making contributions in my community.
Hearing about possible cuts to Medicaid at the federal and state level has caused a lot of stress and anxiety for me. I am constantly thinking about how I and others would function if there were restrictions of eligibility or reductions in benefits. While advocacy is extremely important, it is mentally and physically taxing to always have to fight for our basic needs to be met.
This ongoing fight is making it harder to focus on work and my other engagements in the community. I urge both state and federal lawmakers to think about how their decisions affect people with disabilities. We must all work together to protect disability services. It is important that our state prioritizes the needs of people with disabilities, and ensures that we continue to build on the progress that has been made. Thank you.
QUINN NYSTROM: Push the green button. OK. [LAUGHS] Another amazing round of advocates, and I think an amazing way that their stories have come to life. And I know I’m learning a lot. That’s what I love also about this legislative forum is learning from other people’s lived experiences that may differ from mine.
And so it really opens my eyes to seeing the challenges, also the opportunities that we have as advocates to help support all the different issues that we’ve been speaking about. So we are now going to move to our official Minnesota Council on Disability section. It’s near and dear to my heart, having served two terms on the Council with Disabilities.
We are going to hear from the Executive Director, David Dively. We’re going to hear from other staff members to let you know about current projects that they’re working on. We’re also going to hear from the formidable chair of the Minnesota Council on Disabilities, who I’ve had the honor of working with, and other council members who are doing amazing work throughout the state. And remember, keep those comments, questions written down so that when you get that survey at the end, you can just slide them right in so that we can make this an even more impactful day. So with that, I am going to introduce David Dively, MCD Executive Director.
[APPLAUSE]
DAVID DIVELY: Thank you. Welcome, folks. Sound check briefly here. Everything sound OK? Wonderful.
Hello, everyone. My name is David Dively. I am the Executive Director here at the Minnesota Council on Disability. I am a tall, white, bald man with a blue polo on with a Minnesota Council on Disability logo here.
It’s really my pleasure and my honor to be here. This event would not be possible without many, many folks who are working here right now, from people on our staff to the iDream.tv team and others. So just a quick thank you and appreciation for all of you.
One thing we wanted to talk about was how events like this or forum tie directly into the work that we do at the legislature with and for folks with disabilities just like yourselves. The legislative forum, as you’re seeing today, really is a powerful opportunity because it brings together the folks with disabilities, our communities, directly into contact with lawmakers and decisionmakers in our government. And sometimes at MCD, that’s one of the most powerful things that we ever do is just really closing that gap between people who make the laws and people who have to experience them and bringing them together.
But we also do more. As you heard, we talked, people have been sharing different concerns for transportation, special education, a little bit, human services and waivers, so on and so forth. And those are all just some of the topic areas that we work on at the legislature.
But even more so is events like today, later on at the State Fair, maybe Twin Cities Pride county fairs, wherever you see us, people are sharing their stories with us, just like you heard today. And they’re filling out surveys. What that does is it allows us to collect some information about what’s going on right now in our communities, and then over the course of the summer and fall, try to figure out how that can align with whatever’s happening politically in the world at the time and what would make sense in our budget, all that sort of good stuff.
And then it feeds directly into our legislative proposals that we bring to our council members, our board, who oversees the strategic direction of the work we do. You’ll hear from our chair in a little bit here and former council member emceeing today, Quinn, and then Myrna as well. So lots of folks here, wonderful faces.
After the council receives that and hopefully says good job, you’re reflecting the needs of our communities, we get to work on that. And as you heard our legislators say, your stories are the most important thing that we can bring to lawmakers. We are facing some really significant challenges, both at the state and national level. There’s a lot of uncertainty.
There’s uncertainty around if our federal attorneys that represent our civil rights will enforce our civil rights. There’s a lot of questions on the level of funding we will have at our state from the federal government around things like Medicaid or in Minnesota, we call it MA, to our own state level budget, where we have to have our lawmakers make some difficult choices. And we want to make sure that folks with disabilities are not shouldering those cuts.
There are many things all happening at the same time. That’s not even talking about the 504 lawsuit in Texas v. Becerra. This is a time of profound uncertainty. I really mean that.
And what that really draws to my attention is that while it’s really difficult right now to be in our communities and to be living through the difficulties we’re seeing, it also means that our stories are even more important because when it comes time to cut something or change a law or change a budget, we don’t want it to be a number on a page or a policy bill number. We want it to be a person’s face that they’re thinking about that’s not going to get services, not going to get employment supports, so on and so forth. And so I really want to challenge all of you that even though right now it is quite difficult, it really is.
We want to be able to give you guys better reassuring news than we can. But I can tell you that we need your stories. We need you to show up, whether that’s today. And thank you all for being here and those of you online. But also just right down the street here at our Capitol and our legislature, they need to hear from you.
So with that, we’re going to briefly switch over here to talk about or bring up our chair, excuse me, Nikki Villavicencio. But I also just briefly want to mention that this event here, our legislative forum, one of the leads on it is one of our newest employees at Minnesota Council on Disability. Would you stand up?
[APPLAUSE]
Doing a tremendous job. It’s events like this that– what we’re doing is we’re trying to say we only have 6, 8, 10, 12 people that work at MCD. And we have a wonderful council that’s about 13 to 15 folks at a given time. But we have the largest voting block in the state of any community group that can go out and vote, can make their voices heard, can make sure that they’re counted for the census.
And that’s the kind of work that our civic engagement director is leading for us, because mobilize and self-advocating people make the world better. It makes it more powerful than what we can be on our own. And so with that, I believe I’m throwing it to– no, I am not throwing it anymore–
QUINN NYSTROM: Linda.
DAVID DIVELY: To Linda, yes. Excuse me. I knew that. So with that, I’m going to turn it over to Linda Wolford, who’s going to talk a little bit about how your input and community feedback on our policy issues has been put into action.
ANNOUNCER: Please welcome Linda Wolford, MCD Government Affairs Director.
LINDA WOLFORD: Hello. I am Linda Wolford, Government Relations Director and the newest staff member at the Minnesota Council on Disability. I am a white woman who uses a power wheelchair for mobility and have very limited arm movement.
I have medium length, blonde streaked hair, and I’m wearing a burgundy colored sweater and a colorful scarf. My pronouns are she/her. I am here to discuss one of MCD’s latest initiatives, which is guardianship.
Guardianship in Minnesota is a legal process used when individuals with cognitive or developmental disabilities, and those who are elderly, are deemed unable to make their own decisions. Under this system, a surrogate decisionmaker is appointed, often resulting in a near-total loss of personal autonomy, affecting choices about medical care, living arrangements, and everyday activities. While the law requires that less restrictive alternatives be considered first, in practice, guardianship is frequently overused, especially among individuals with intellectual or developmental disabilities.
Testimony collected during legislative hearings about guardianship highlighted that approximately 6% of Minnesota adults experience serious cognitive challenges, with older adults being particularly at risk. With Minnesota’s aging population, the number of guardianship cases is expected to rise, placing further strain on our already overburdened court system. A key alternative discussed is supported decisionmaking, a framework that provides tailored assistance while preserving an individual’s decisionmaking rights.
However, the current lack of reliable data on guardianship cases complicates efforts to evaluate the true scope and cost of the system, as well as the potential benefits of less restrictive approaches. While specific data is hard to track, it is safe to say that Minnesota has one of the, if not the, highest rates of guardianship in the United States. That is why legislation was passed in 2024 to establish a task force on guardianship.
Specifically, this task force charged its members with looking at the following eight topics. One, find more good guardians and make sure they are paid fairly. Two, figure out long-term funding to pay for guardianships and other support options. Three, look into creating a system to certify or license guardians. Four, create training for guardians.
Five, make it easier to report problems with guardians. Six, find ways for people to stay in their communities and make decisions without a full guardianship. Seven, ensure that guardianship is only used when necessary. And finally, eight, protect the rights of people under guardianship, including their right to fair treatment.
Task force members include people with disabilities or family members of people with disabilities, individuals from state agencies, members of the Minnesota Senate and House of Representatives, attorneys, representatives from nonprofit organizations. Individuals currently or previously living under guardianship, judges, professional guardians, social service organizations, elder advocates, and disabled advocates. MCD is partnering with Wilder Research to administer the task force.
The Guardianship Task Force had its first meeting on February 26, with 21 task force members present, 7 MCD Wilder Research staff, and 7 members of the public. The Guardianship Task Force will operate with three subcommittees. One, least restrictive option subcommittee focusing on expectation for judges, attorneys, social workers, education professionals, health care professionals, and others in identifying and implementing the least restrictive option.
Two, self-direction subcommittee, focusing on the options a person and their trusted supporters can exercise to change or end guardianship or alternatives, including the support or follow-up they can expect from providers and administrators. Three, guardians and supporters subcommittee, focusing on training for guardians and supporters, professional certification and licensure processes, pay reimbursement recommendations, and recruitment opportunities and strategies.
After this first meeting, we asked participants what they hoped the task force will accomplish. Here are three direct quotes from participants. One, quote, “Of course, the least restrictive option that an individual can succeed with is so important. Second is helping the parents. And third is the professionals out there. What can we do to assist them and so they are protected as well as get the proper training?” unquote.
Two, quote, “I want the task force to identify concrete changes that can be made to the structure of guardianship, and our systems. Policy language can change, but that doesn’t trickle down to material changes. I hope the task force is concrete about what we need to change and plans for how that can happen.” And three, quote, “What I hope this task force accomplishes, the system of guardianship becoming person centered and user friendly,” unquote.
In summary, the Guardianship Task Force is urged to invest in better data collection and to promote supported decisionmaking as a viable alternative, ensuring that guardianship is reserved only for cases where it is absolutely necessary. This approach will not only protect individual rights, but also relieves pressure on our judicial and care systems. This task force is a great example of how people’s voices about a particular situation can be heard. And instead of just talking about the issue, action is actually being taken.
Thanks so much to many advocates who spoke out and to the legislators who listened and created this task force. We are encouraging continued input as we develop suggestions that aim to make the guardianship system in Minnesota better for everyone. To learn about task force membership and make either voicemail or email comments, please visit MCD’s website and look for the Guardianship Task Force Section.
Task force meetings are open meetings. The schedule for meetings and how to be involved are also listed on that website. People who want to attend meetings are encouraged to do so through the virtual option.
Please stay informed about the Guardianship Task Force by following the Minnesota Council on Disabilities website at disability.state.mn.us. Thank you. And have a great day.
ANNOUNCER: Welcome Nikki Villavicencio, MCD Council Chair, and David Dively, MCD Executive Director.
NIKKI VILLAVICENCIO: Hello, everyone. I am Nikki Villavicencio. I use she/her/sha pronouns. And I have the pleasure in honor of being the Chairperson of the Minnesota Council on Disability.
I am a disabled Filipinx. And I have long brown hair, green eyes, and glasses. Today, I am wearing a black shirt.
Our council members participate in a lot of activities, including disability and community events, like conferences or outreach opportunities on behalf of the agency. We speak to legislators and often testify at legislative hearings. Council members are connectors between our local communities, the agency staff, and the legislature. We advocate for our community’s needs, and we ensure our voices are heard.
I am passionate about a lot of different disability rights issues, including being a disabled parent. Being on the council helps me to make change and influence our systems in Minnesota. The council only has so many staff, so when council members support the agency’s activities by bringing the perspective of our local community, it’s a good partnership, and it really expands our capacity to do the work. Now, I’d like to turn it over to our Executive Director, David Dively.
DAVID DIVELY: Thanks, Nikki. Hello. I’m David Dively, the Executive Director of the Minnesota Council on Disability. I’m a bald white man wearing a blue polo with the MCD logo.
I’d like to share with you a brief overview of our work and how our staff, together with our governing council, drives our mission forward. At the core of our agency is a commitment to ensuring that every Minnesotan with a disability can live with dignity, independence, and full inclusion in all aspects of community life. We do this through advocating for public policy and offering technical assistance in a variety of areas, from accessible public spaces to disability parking to voting, to give state agencies, legislators, and our local communities the tools they need to break down barriers to accessibility.
Our many successes result from the combined dedication of agency staff and our governing council. The council brings together experts from across Minnesota. Their diverse perspectives are invaluable, and they play an important role in shaping resources and policy recommendations that are technically sound and reflect the real-world experience of Minnesotans. I see firsthand how this partnership fosters innovation and responsiveness, whether it’s addressing current challenges or refining long-term strategy. This collaborative work is essential for finding solutions that genuinely improve the lives of people with disabilities across our state.
ANNOUNCER: Once again, MCD Council Chair Nikki Villavicencio.
NIKKI VILLAVICENCIO: Thank you all for being here today to discuss an issue that affects families across Minnesota, ensuring that parents with disabilities have the services and supports they need to raise their children without fear of discrimination or unnecessary child welfare involvement. Despite the protections of the 14th Amendment, the Americans with Disabilities Act, and the Olmsted Act, parents with disabilities remain the only distinct community in the United States that must actively fight to retain custody of their children. As Jonathan Young of the National Council on Disability stated in 2012, “This is a fundamental civil rights issue.”
Here in Minnesota, the numbers tell a troubling story. Between 2000 and 2009, parents who had a disability label in their school records were more than three times more likely to have their parental rights terminated than those without such a label. They were also more than twice as likely to be involved in the child welfare system.
Let me be clear. This is not because parents with disabilities are less capable of raising their children. This is because of systemic bias, lack of access to adaptive parenting supports, and the simple fact that parenting with a disability often comes with added economic challenges.
Instead of addressing these challenges with support and services, our system too often penalizes parents for having a disability. The biggest difference between parenting with a disability and parenting without one is not a parent’s love, commitment, or skill. It’s economics.
Parents with disabilities face higher rates of unemployment, additional health care costs, and barriers to securing the adaptive equipment and/or personal care assistance they may need to care for their children. If we provide these supports, just as we do for other parents facing economic hardships, we can prevent unnecessary family separations. We must stop treating disability as an automatic risk factor and start recognizing it as simply another aspect of human diversity.
Thanks to the Minnesota legislature’s commitment to disability justice, we now have a system that prioritizes support over separation. The Commissioner of Human Services was tasked with, one, studying the feasibility of supportive parenting services and adaptive parenting equipment under Medicaid. Two, developing recommendations for eligibility, service design and cost.
Three, providing a legislative framework for ensuring these services become reality. And now we are seeing the real impact of that legislation. With over 60″ families so far accessing these services, children who might have been placed in foster care are instead growing up with their parents, in their own homes, with the support they need.
Minnesota’s success is not just a victory for our state, it’s a model for the entire country. Other states have passed similar laws, but few have implemented services as effectively as we have. Our next step is to ensure this pilot program becomes a permanent, fully-funded initiative. We have proven that these services work. Now we must expand them so that every parent who needs support can access it.
While the progress we’ve made is worth celebrating, we know that our work isn’t finished. Too many parents still lack access to the resources they need. And too many families still live with the fear of losing their children simply because they have a disability.
That’s why this year, we’re fighting for the next step. Representative Peter Fischer is leading the charge as chief author of the new bill that will expand and strengthen supportive parenting services in Minnesota. This bill directs the Commissioner of Human Services to seek a federal waiver amendment to allow home and community-based services to deliver supportive parenting services and supports under Medicaid.
Minnesota has taken a bold and necessary step toward justice, but our work isn’t finished. We must build on this momentum and ensure that no parent in our state fears losing their child simply because they have a disability. Let’s be clear, this bill isn’t about special treatment. It’s about fair treatment. It’s about recognizing that disability should never be a reason to separate a family, and that every parent deserves the right to raise their child with dignity and support.
By passing this bill, we ensure that parenting supports become a permanent part of Minnesota’s Medicaid system. Families get the services they need before a crisis occurs. Parents are empowered, not penalized, for seeking help.
This bill is a game changer, but it won’t pass without your voices. We need to keep the momentum going. Here’s how you can help. One, call or email your legislators. Tell them why this bill matters. Tell them that families deserve support, not separation.
Two, share your stories. If you or someone has benefited from these services, let the world know how they make a difference. Three, show up and advocate. Attend hearings, write letters, and make sure our leaders know that this issue isn’t going away.
Minnesota has already set an example for the nation by recognizing and supporting parents with disabilities. But the fight isn’t just about one bill or one program. It’s about changing the way we think about disability and parenting altogether.
We have the opportunity to create a future where every parent, regardless of ability, has the support they need to raise their child, a future where fear of discrimination is replaced with the promise of inclusion and empowerment. Let’s get this bill passed. Let’s continue the fight.
And let’s make sure that every family in Minnesota has the chance to stay together, thrive, and succeed. Thank you. Now, I’d like to turn things over to some of our other council members so they can tell you more about the things they are working on.
ANNOUNCER: Welcome Council Member Ted Stamp from Marshall, Minnesota.
TED STAMP: Hey, everybody. My name is Ted stamp. I have salt and pepper hair and beard, and I’m wearing glasses and a turtleneck sweater. I’ve been an independent living advocate for the Southwestern Center for Independent Living in Marshall for 18 years now. And I’ve been a member of MCD representing District 8 for eight years.
I’ve greatly appreciated my time on the council, mostly because it provides a unique opportunity to regularly collaborate with other talented advocates from across the state in order to improve the lives of people with disabilities. In addition to what I have to share today about transportation access, I’m happy to introduce to you my long time friend and colleague, Shelly Pflaum, Mobility Administrator from United Community Action Partnership in Marshall, who’s going to share with you how low special transportation service reimbursement rates are affecting the entire transportation landscape. You’ll hear from her in a minute.
My purpose today is to provide a brief update and follow-up regarding statute changes made to the Minnesota personal care attendant for PCA program during the 2023 legislative session. More specifically, this update concerns the bill passed into law that session, which brought about these changes, titled Reinstating Community Access for the PCA Program. This bill passed into law in June 2023 with bipartisan support, amending certain statutes governing the Minnesota PCA program so as to allow the PCA of homecare agencies to drive their clients while on duty. This bill received its federal approval that November, and it officially became effective as Minnesota law the first week of February 2024.
So after six, hard-fought years of work for these results, a lot of us advocates breathed what we felt was a well-deserved sigh of relief as we eagerly anticipated the potential changes that might follow as a result at homecare agencies statewide. Specifically, we imagined individuals formally resigned to sending their PCAs to the store to shop for them being newly enabled and thereby empowered, if they wish, to have their PCAs now drive them in their own vehicles to and from the store to join the experience, or to church or work or a family event or medical appointment.
Not only that, this important change would thereby simultaneously relieve some of the burden on our congested statewide transportation system, especially more rural areas where transportation options are already very limited, especially during evenings and on weekends. We had dreamed big, and it appeared we had good reason to believe that critical, practical results were on the way.
Unfortunately, however, after nearly a year since this bill became effective as Minnesota law, the disheartening reality is that even this necessary change in statute language has not proven sufficient to enable the outcomes for which we all hoped and fought. Although it’s uncertain at this point to what extent this is true statewide, it’s already become clear from the limited feedback some of us have received that there is a general reluctance among homecare providers to implement policies allowing PCAs to drive their clients while on duty. This isn’t because they disagree with the intention of this new change in law.
From the little we know so far, their concerns are not unreasonable, some of which advocates anticipated well before the bill became law. The following are a few of the chief practical concerns that have been raised so far. First and foremost, liability, namely, how an accident involving PCAs driving clients on duty could affect not just the individuals involved, but the very viability of the agency.
Two, lack of sufficient staff to supervise and monitor the documentation necessary to monitor such a program for both PCAs and clients, for example, tracking the ongoing status of driver’s licenses, driving records, insurance, vehicle maintenance, et cetera. Third, the additional responsibility of having to monitor multiple clients use of their allotted homecare hours to ensure individuals not use too many for driving, thereby leaving themselves without enough time to have their most critical needs met. Four, state-designated reimbursement for PCA services remains the lowest reimbursed service, further challenging providers to hire and retain valuable workers while simultaneously having to implement all the added requirements of the program.
And finally, on top of everything else, five, the additional challenge agencies are now facing in being mandated to transition from the traditional PCA program to the consumer-first services and supports or CFSS program, which, though a temporary phase, is already proving both formidable and time consuming. Whatever you may think about concerns like these, all of which require and deserve further scrutiny and discussion, the fact is, each one is a real and substantial obstacle currently standing in the way of on-duty PCAs being allowed to drive their clients, despite state law being on their side. Therefore, each of these issues needs to be addressed, if change is going to happen in this respect.
Perhaps more importantly, I think, it’s vital to our success moving forward to once again remind my fellow advocates of what they likely already know, that homecare agencies are not against us. They are, in fact, for us. In the face of unprecedented staffing shortages and a rapidly aging population needing care, they are battling the best they can just to keep their clients, including many of us, out of nursing homes. So we mustn’t blame them or think of them as part of the problem, but must rather seek to dialogue with them as partners as we pursue viable solutions to these barriers.
I wish I had better news, friends, but this is where things presently stand in this regard. So we need to regroup and rethink our strategy on this one. And just like the first time around, widespread collaboration among a variety of resourceful partners will be essential for lasting success.
Though your frustration, disappointment, and even disillusionment is justified and understandable, complaining that things aren’t the way they should be doesn’t get us anywhere. On the contrary, our energies will be much more usefully channeled in resolving not to give up, but to once again redouble our efforts with a view to achieving not just victory this time, but actual, practical, implementable results. Thank you for your time and attention.
ANNOUNCER: Welcome Advocate Shelly Pflaum from Marshall, Minnesota.
SHELLY PFLAUM: Hi. My name is Shelly Pflaum. I’m a white female with graying, curly brown hair. And I’m wearing a red and black stripe sweater.
I’m the Mobility Administrator and the Lead Staff for the Regional Transportation Coordinating Council at United Community Action Partnership in Southwest Minnesota. I’ve worked in transportation for almost 17 years. A big part of what I do is help people find transportation. And I’m honored to speak to you today about the effects inadequate reimbursement rates are having on transportation access.
I’ll apologize in advance, because I know I won’t touch on everything or answer every question. Let me start by giving you a little bit of background. Reimbursement rates for the Department of Human Services to non-emergency medical transportation providers are set in statute.
There have been no changes to these rates in 10 years. Yet, in those 10 years, the cost of everything has increased exponentially. Since DHS reimburses only for miles with a person in the vehicle– we call these loaded miles– the problem is felt acutely by providers in rural areas.
For example, if the closest driver is 35 miles from a passenger who has a four-hour appointment, there are at least 70 vehicle miles and five hours of staff time that are not billable for that trip. No matter if the passenger’s appointment is 30 miles from their home or 3 miles, the loaded mileage, plus a minimal standard pickup fee, is what the provider receives to cover the cost of that trip. This creates an especially big problem for Special Transportation Services known in the transportation world as STS.
STS provides specialized door-through-door services to people whose needs cannot be met through other forms of transportation, typically, people who use wheelchairs or need to be transported on a stretcher. Efforts to increase these rates have been brought forth unsuccessfully every year. The most recent effort came in January of 2023, with the introduction of House Bill 435 and its companion bill, Senate File 316. These bills seek a roughly $1 per mile increase, which is equivalent to $0.10 per year.
There has been little movement since the bill’s introductions. In the meantime, many people are struggling to get where they need to be. Wheelchair accessible transportation has always been the thing most people need help finding. Over the last several years, this need has increased.
Providers across the state have shut down or significantly reduced their service area in an attempt to avoid shutting down. Others have simply cut ties with DHS. This has left many people, including some with regular need for dialysis, scrambling for alternatives.
But what we need isn’t necessarily alternatives, if we adequately support the resources currently available. It’s true that not every need for transportation is covered by DHS. But especially in rural Minnesota, the consistency of need for DHS transportation may be enough to ensure providers can stay in the area to meet other needs. There isn’t a single form of transportation that can meet every need. But when every form of transportation is there to do its part, everyone benefits.
ANNOUNCER: A few words from former Council Member Quinn Nystrom, Saint Michael, Minnesota.
QUINN NYSTROM: Hello. My name is Quinn Nystrom. I’m a white female with long blonde hair. And my pronouns are she/her. I’m currently wearing a black turtleneck with a green dress, and I’m holding an insulin vial.
Nearly 30 years ago, my brother Will was diagnosed with type-1 diabetes just a month after his fifth birthday at St. Joseph Hospital in Brainerd. In an instant, our family’s world changed. Will’s reality shifted when his pancreas stopped working through no fault of his own, leading him to manage daily insulin injections, finger pokes, food counting, and regular doctor visits.
I faced my own diagnosis 2 and 1/2 years later, at the age of 13, marking the moment when I became a person living with diabetes. Though devastated and hopeless, I drew strength from seeing Will persevere. If Will and I had been born 100 years earlier, our diagnosis would have been a death sentence. Yet, due to the discovery of insulin in 1922 and remarkable advancements, countless individuals with diabetes now thrive into their 50s and beyond. However, survival rates remain a challenge compared to those without diabetes.
This chronic illness is unique in that we are entrusted with administering insulin injections and making critical dosing decisions for a life-sustaining drug. These life or death choices require our vigilance multiple times a day without the aid of a doctor. Consider the gravity of this scenario.
Registered nurses must have a second registered nurse confirm the insulin dosage before administering it to a patient. Meanwhile, many of us have been managing our doses from a young age. A single drop more or less of insulin can alter our fate. The margin for error is razor thin.
On top of this, we carry the mental burden of constant stress, anxiety, and emotional strain inherent in managing this chronic disease. It is a relentless 24/7 responsibility– monitoring blood sugar levels, adjusting insulin doses, adhering to dietary restrictions, and grappling with the persistent fear of complications, like hypoglycemia. This can lead to feelings of overwhelming burnout and depression, directly impacting our quality of life, even when our blood sugar levels are well managed.
Now imagine living in the world’s wealthiest, most developed country while your body can no longer produce the hormone, everyone else generates, insulin. The silver lining is that insulin was discovered over a century ago. But the unfortunate reality here in America is that three insulin manufacturers and our health care system have attached a price tag of $380 per vial for this life-saving medicine that costs only $3 to $6 to produce.
Since my diagnosis, the cost of insulin has risen astronomically by 1,200%. This stark reality places a price tag on the lives of my brother, myself, and the other 399,700 Minnesotans, roughly 9% of our state population who also live with diabetes. Insulin is not optional. It is our lifeline and our life support.
Each year, approximately 26,200 people in our state receive this new diagnosis. In our state, we are leading the way with groundbreaking legislation to protect individuals with diabetes. I am grateful for these significant wins, even as they represent stepping stones towards more lasting solutions for the health care challenges faced by many in the Minnesota disability community.
Our diabetes advocates fought tirelessly, leading to the passage of the Alex Smith Emergency Insulin Act in the summer of 2020, which established the Insulin Safety Net Program, named in honor of Alex Smith, who tragically lost his life after rationing insulin because he couldn’t afford the price tag. This new law allows any Minnesotan to walk into a pharmacy, complete a simple, one-page application, and receive an urgent 30-day supply of insulin on the spot for a $35 co-pay. Then there’s the Continuing Need Program that mandates that insulin manufacturers provide insulin to eligible individuals for up to one year, with the possibility of annual renewal at a co-pay of no more than $50 for each 90-day supply.
In its first year alone, over 1,100 Minnesotans seized this opportunity. I know I was one of them. I utilized this life-saving program, and it made an incredible difference in my life.
Despite a lawsuit filed by pharmaceutical companies the night before the law took effect, attempting to derail our progress, our fight continues. This is why we must rally our legislative leaders to ensure this essential law persists, emphasizing that we prioritize humanity over pure profit. Last year, we celebrated another monumental piece of legislation that was passed, and it’s a law that just took effect on January 1, that all state health plans can no longer impose co-pays exceeding $25 for a one-month supply of prescription drugs for chronic diseases that includes diabetes, but also asthma and severe allergies.
There is also a $50 per month limit for supplies like syringes, insulin pens, and pumps. A fellow advocate, Leah, shared that her family will save nearly $2,000 annually on her daughter’s diabetes medications and supplies. Despite facing pushback from the health care industry, our courageous legislature moved forward, ensuring that insurers comply with this important law.
I urge all members of our government, including our governor, to continue their steadfast support for these life-saving bills. Let us stand together for a future where no one has to choose between their health and their financial security. Together, we can create change and inspire hope.
ANNOUNCER: Welcome Council Member Rob Wudlick from Excelsior, Minnesota.
ROB WUDLICK: Honored guests, advocates, and legislators, thank you for giving me the opportunity to speak with you today. My name is Rob Wudlick. I’m a white guy wearing glasses and a red and blue checkered shirt. I’m sitting in a powered wheelchair.
I am an entrepreneur, an engineer, a community leader, and a quadriplegic from a spinal cord injury. I’m also deeply committed to advocating for disability policies, because they are the daily realities that we and the disability community face every day. These policies make the difference between living a successful life, a sustainable life, and staying alive or not for our community. Often we find that common sense solutions are within reach, yet the system designed to help us remains imperfect and continuously changes.
Today, I want to highlight some of the most pressing issues affecting myself and our community. First, medical assistance for employed persons with disabilities, also known as MAEPD. Second, coverage of non-covered, health-related services. And third, preserving and enhancing homecare and access to critical health care needs.
First, the topic of MAEPD. MAEPD allowed me to rejoin the workforce as a biomedical engineer and create a company that develops assistive technology after my spinal cord injury. We need equal incentives and opportunities to work with a disability, while retaining critical benefits.
Last session, we eliminated the asset limit. However, there is much more work to be done in terms of readjusting the premium rate or eliminating it, especially for those on the lower end of the income bracket. We also need reform that allows individuals 65 or older who work to stay in this program. We also need to increase awareness and support for individuals who want to join the program and reduce the individual administrative burdens that we face.
Many don’t know that this transition is difficult, as individuals living with disabilities commonly have to turn down other support benefits and navigate a complex web when they begin working again. I have friends in the disability community that have had no safety net, who have been forced to make tough decisions on whether to buy food or pay their MAEPD premium bill when they decided to take the leap into starting their careers. Additionally, my friend Bob is getting older and he has a spinal cord injury.
He continues to work in his career and has no plans to retire soon. However, he may be forced to retire at 65 for him to be able to maintain his benefits. MAEPD supports individuals with disabilities to not have to choose between working or turning away life opportunities that most people take for granted, contributing to society, or receiving critical health care benefits or building their dreams and sustainable wealth, or receiving homecare that helps them get out of bed in the morning.
Next, let’s discuss coverage for non-covered health services, such as adaptive fitness. Adaptive fitness has helped myself and many of my friends. For instance, I require specialized training that has significantly improved my life, helping me move my arms, manage my blood pressure, improve my mood, prevent kidney stones, hospitalizations, and so much more. New therapies and treatments, like transcutaneous spinal cord stimulation offer promising functional benefits for individuals living with spinal cord injuries.
Additionally, proper inpatient rehabilitation and education are critical. However, many individuals are discharged early without adequate preparation or resources. To address these needs, we need mandated coverage for adaptive fitness for individuals living with disabilities, better support for individuals and inpatient rehabilitation settings, education and services for them to help transfer back to community living, especially for those who are experiencing a transition in their health that impacts their way of life.
I recently heard of a young woman who was tragically injured in a car accident and suffered a permanent spinal cord injury, making her dependent on a wheelchair and much more. She only had three weeks of inpatient care before the insurance company and Medicaid cut her off and sent her home. Think about this.
This doesn’t allow the individuals to build a ramp to access their homes, mentally cope and readjust for the new life ahead of them, learn many complex health-related skills, or how to even take care of themselves. It doesn’t allow for individuals to get proper equipment, become medically stable. This puts so many individuals in dangerous situations away from critical health care access, and commonly leads to more severe health care consequences and rehospitalizations, compounding medical expenses and complications down the road.
Finally, and most importantly, we need to preserve essential health care services for individuals living with disabilities. This is critical for my well-being and many, many others. This is a choice that we must make together.
Ask yourself, what are American values? What are Minnesotan values? And what are your values? We have a societal choice that we must face. We can either cherish and preserve a community that supports and takes care of one another, especially those in the greatest of need, or succumb to self-centered instincts, where we only look out for ourselves and take advantage and neglect our most vulnerable people.
We understand the need for fiscal responsibility, but at what point do we decide to abandon humanity and our values? It is important to recognize that most people will experience a disability in some form, whether temporary or permanent, at some point in their lives. Bipartisan support across the aisle for our most essential Medicaid and disability services and benefits is critical now more than ever, as we face potential budget cuts.
We need to preserve essential services, such as access for homecare and critical health access for individuals living with disabilities. Without access to proper homecare, I would lose the ability to participate in my community and contribute and live a dignified life. Homecare is not only the morally right thing to do, but it is also cost effective compared to institutionalized care.
Here are some proposed solutions. Maintain essential services that provide community-based homecare and access to health care for individuals living with disabilities. Enhance wages and benefits for home care workers.
Continue support for the Direct Care Student Service Corps that incentivizes students to engage in homecare with a stipend. Provide easily accessible accreditation certificates, and training for lower educated home-care providers to perform complex tasks. And ensure that homecare is community care, and not just limited to the home.
In conclusion, I want to express my sincere gratitude to the Minnesota Council on Disability advocates and legislators. I look forward to working with all of you. It takes all of us to help each other.
We need our elected leaders to understand our stories, struggles, and to be seen. I encourage each and every one of you to reach out and meet directly with your elected officials, especially if you have a disability and an issue. Your voice is needed now. Without community representation and communication, your issues will go unheard. Thank you.
ANNOUNCER: Welcome Council Member Jen Foley from St. Cloud, Minnesota.
JEN FOLEY: Hello. My name is Jennifer Foley. I’m a woman with short brown hair in a wheelchair wearing a bright blue pullover. I have served as a member of the Minnesota Council on Disability governing council since 2021.
I currently live in St. Cloud with my parents, who serve as my primary caregivers. In my past life, or what I like to call my past life, I spent 25 years as a Sports Information Director at schools across North Carolina, Iowa, and Minnesota before moving over to be the Director of the Applied Research Center at St. Cloud State in 2008. I had the honor and privilege to represent the Minnesota Council on Disabilities on the legislative task force on aging this past year.
We were a small task force comprised of just eight members, but we were given a big job. We were tasked with reviewing current aging-related governmental functions, programs, and services across all state agencies, to look at current public and private strategies to support family caregivers for older adults, define and support quality of care and life improvements in long-term care and homecare, and how to sustain neighborhoods and communities for an aging population. Our goal was to determine the governmental entity best suited to plan, lead, and implement our recommendations for aging Minnesotans across the state.
And most importantly, we needed to ensure that all aging-related state policies are inclusive of race, gender, ethnicity, culture, sexual orientation, abilities, and other characteristics that reflect the full population of the state of Minnesota. Over the course of 16 months, the task force held 20 public hearings on a wide range of topics affecting Minnesota’s aging population. And at every step, I made sure that the disability voice was heard.
As a numbers nerd, at our very first meeting, we learned a fun fact from the state demographer. In 2024, Minnesota hit two milestones. First, the number of adults living in the state of Minnesota over the age of 65 topped 1 million for the first time ever.
But more interesting to me is that there are now more Minnesotans over the age of 65 than kids in school, kids K through 12. By 2030, that number over 65 will grow to 1.16 million and stay at that level through 2050. And that is why this task force was so important to me. I will be one of those 1.16 million by 2030. And with a disability, it was important to have a voice at the table.
Another number that is important. There are 307,000 older adults who currently live with a disability in Minnesota, not to mention those that will age into that category. And I was representing them all. We heard testimony that impact health and aging and community from different agencies and researchers, both public and private.
We held presentations on health care, caregiving, transportation services, housing, nutrition programs, care providers, social programs, financial security, older adults in the workplace, just to name a few. And that is just naming a few. We had presentations on built environments, whether aging at home or long-term care facility or senior living community.
Additionally, the task force invited representatives from Pennsylvania and Colorado to present on their aging-related government structures and planning processes. Pennsylvania’s Department of Aging was well established and has been in existence since 1979, while Colorado’s was much like Minnesota, realizing they had an aging population and needed to adjust to that reality. At every meeting, members of the public were invited and even encouraged to speak to offer their concerns and suggestions.
To me, that was the most impactful and informative part of each meeting. Fellow council member Myrna Peterson officer testified on the fantastic GoMarti Rideshare program in Grand Rapids. Former MCD Public Policy Director Trevor Turner testified on the lack of accessible transportation, not just for the aging community, but for all disabled folks.
Trevor had one of my favorite quotes among all testifiers. “Aging, for most people, is simply acquiring a disability over time.” And that is so true.
My work on the task force allowed me to branch out and work with many groups in the St. Cloud and Minneapolis area to make sure I was hearing from as many voices as I could. I met with members from Age Friendly Minnesota and the Central Minnesota Council on Aging. I went to the Whitney Senior Center, the CentraCare senior care facility, and I met with Elder Voice Advocates in Minneapolis.
I made it a mission to make sure I was hearing the concerns from as many people as I could. As a person who uses a wheelchair with complex medical needs, requiring long-term care. I’m very concerned about ending up in a long-term care facility, if and/or when my parents or family members can no longer care for me. I want to make sure Minnesota seniors age with dignity, receive the services they need in the setting they so desire, whether it’s the home they’ve always known, a senior living community, or residing in a long-term care facility.
After 16 months of testimony, we finalized our recommendations just before Christmas and submitted our final proposal to the legislature in January. Our recommendation would be to create a new cabinet-level office on aging, housed within the Minnesota Management and Budget, under the direction of the governor’s office, much like the newly created Department of Children, Youth, and Families that just celebrated its first year. This new cabinet would eliminate perceptions of bias and create a clear line of authority and responsibility, and have the power to direct and coordinate aging policy programs and services across multiple state agencies.
This entity would be tasked with developing a multi-sector state plan on aging that would implement and steward that plan to ensure state government works towards dignified and healthy aging across the lifespan in livable communities with social and economic opportunities. The entity would advance policy grounded in public health, economic empowerment, and ensuring livable communities. I ask that each of you here read our final report and recommend passage to your legislator.
In addition to my work on the Disability Council, I also serve as an at-large commissioner on the Greater Minnesota Regional Parks and Trails Commission. This past year, Minneapolis hosted the National American with Disabilities Act conference. I am lucky enough to serve with 12 commissioners from around the state on the Parks Commission, who saw what a phenomenal opportunity it would be to send our executive director and system plan coordinator to the conference.
There, they attended sessions on accessibility in parks and on trails and accessibility in playgrounds, and realized that many of our parks and trails were not as accessible as we thought. The commission has since partnered with one of the accessibility specialists from the conference to create a value statement for inclusivity for our parks system, and are working with him on improving accessibility in all our regional parks. He recently worked with the city of East Grand Forks on the design of their new fishing pier and their new park, and is working with a few other parks on the grade and surface of new trails.
We learned a commonly asked question when designing a park. How many picnic tables need to be ADA accessible? Why not all of them? Same with playgrounds. All playground areas should be accessible for all ages, all abilities, all the time.
Our commission is totally committed to making all our parks and playgrounds not only accessible, but beyond the ADA minimum standards. We have purchased accessible, all-terrain track chairs now for five of our parks and is expanding. The DNR has the track chair now in 13 parks, and these are all free to use.
Now, one of my favorite things I get to do on the Council for Disability is work at the MCD booth at the State Fair. It’s there that I get to meet and talk with people from around the state and hear amazing stories of people and families thriving with disabilities. But we also talk with a lot of people who need help and didn’t know we existed, and we are able to direct them on where to go for more information and help. And that is rewarding.
Last summer, for the first time, I got to do a county fair. I was working with Michele Severson, the Access Consultant for MCD. We had a little downtime after getting set up, so we went over and toured one of the area parks that was listed as being a fully accessible playground. While I was there in my chair, there was little I could access, so I could only imagine a kid in a chair was not going to be able to use many of the cool things in the playground.
Michele now has been working to create a master list of all accessible, inclusive playgrounds in the state of Minnesota. She probably has one of the most complete lists in the state. You should ask her to see it sometime.
For me, it has been exciting to see the overlap of my two board and commission assignments. I find that working on the various commissions challenging and rewarding. It is truly an honor to serve with the many other members of the Council on Disability.
I can tell you that working with them and the MCD staff, Minnesotans will find no better advocates for the disabled. They truly care and are there to help. Thank you.
ANNOUNCER: And now a message from Trevor Turner, former MCD Public Policy Director.
TREVOR TURNER: Hello, Minnesota. My name is Trevor Turner, and I’m a white male wearing a blue sweater, and a tie. I’m the former Public Policy Director for the Minnesota Council on Disability.
It was an incredible honor to serve Minnesotans with disabilities for the past 4 and 1/2 years. As many of you may know, prior to my time with MCD, I worked in international development, serving people with disabilities and diverse communities around the globe. I now have the opportunity to go back to that work advocating for hearing health care for people with hearing loss, like me all around the world.
But I have to say, it is a bittersweet feeling going back to the work I love, but leaving the incredible work I have done with the disability community in Minnesota. While I’m continuing to be an advocate for people with disabilities, working in state government holds a very special place in my heart. The biggest lesson that I have learned, and something I want to talk about that has been at the core of my work at MCD is the importance of people with disabilities serving in government, shaping the policies that affect all of our lives.
When I first assumed this role, I knew that disability advocacy and government wasn’t just important. It was essential. Policies are being written every day that impact our access to health care, education, employment, transportation, and community living. And too often, these decisions are made without any Minnesotans with disabilities in the room.
That’s why I’ve been so passionate about this work, because when people with disabilities lead, when we serve in government, when we advocate, we change the conversation. We bring lived experience. We bring expertise, and we bring a perspective that is far too often missing. It is not enough for the experiences of people with disabilities to be acknowledged by state leaders. We need a seat at the governing table.
I know that government work, whether an advocacy, public service or policy, can sometimes feel intimidating. Many of us grow up in a world that tells us we don’t belong in these spaces, that leadership is for someone else. But I’m here to tell you, we not only belong, we should lead.
Not only is leadership from public servants with disabilities good for this disability community, it benefits everyone. The unique perspective of empathy, adversity, and compassion that so many people with disabilities have makes for incredible and effective government leaders. And there are so many ways to get involved in government.
Maybe you want to work in a state agency, advising on policy or pushing for better laws. Maybe you want to serve on a local commission, helping your city or county make decisions that include the disability community. Maybe you want to run for office yourself. Or maybe your role is showing up at the Capitol, testifying, telling your story, making sure our elected officials hear directly from the people their decisions impact.
Whatever way you can serve in government, do it. Rise up, speak out, and lead because your experience is powerful. And when we show up, we don’t just advocate for ourselves. We make things better for the entire state.
I’ve seen firsthand how change happens. I’ve seen bills passed because people with disabilities showed up and demanded action. I’ve seen policy shifts because we made it clear that access, equity, and inclusion are non-negotiable.
As a community, we always say, nothing about us without us. But perhaps it’s time to start saying if it’s about us, it’s led by us. So I want to end by saying, thank you.
Thank you to my colleagues at MCD, to the disability advocates, elected official, and to every person who has ever written an email, made a call, testified at a hearing, or simply spoken up for what’s right. Your work matters so much to me. And let’s make sure that every space, every decisionmaking table, every policy discussion about us is led by us. Thank you.
ANNOUNCER: To wrap us up today, Quinn Nystrom, MC; and MCD Civic Engagement Director.
QUINN NYSTROM: Thank you all so much for staying through this, I think, an incredible forum that the Minnesota Council on Disability put on. I think we can give a big round of applause for every single person.
[APPLAUSE]
I know I was continually inspired. I know from Myrna saying in her video about she has a strong thumb and a loud voice to somebody on Damon’s tribute video, saying his brain and his heart remain strong. I know myself as a little kid, when I was diagnosed with diabetes, I thought, well, I’m just this small town kid. What could I really do to impact this issue?
But what I realized is I just started knocking on doors and telling my story. And so I believe each one of us here in this room and online has the power to make change. We’re the only ones who can do it. We’re the only ones who can tell our personal story, our personal experience. And we can never lose hope of that.
And so I know today I feel reinvigorated, even though I know the advocacy work can be exhausting. At times, it can be a little demoralizing. But if we don’t continue to stay in, then who knows where things will go? So I’m just a cup-half-full kind of girl. And I believe with all of our collective voices, we can continue to make change and continue to make Minnesota one of the leaders in this country for people with disabilities, but for all Minnesotans.
So remember to reach out to your elected officials, your state reps, your senators, Secretary of State, the attorney general. Let them know if you’ve ever wanted to testify in a committee. Send them a message just saying what your story is.
If you’re intimidated about writing a letter to the editor, I promise you most offices, they will write it for you and have you review it. And you just put your name on it. When you testify, there’s people that can help you write what you would put together. So don’t ever count yourself out. Know that all voices and all people need to be at the table.
So I appreciate every single one of you. I’m grateful that I was asked to be part of this. And I will turn it over to […], who is responsible for putting on this amazing event.
[APPLAUSE]
SPEAKER: Quinn, thank you for the excellent facilitation, for the personal touch, for the heart that you put into facilitating today. Can we give Quinn Nystrom, our MC, a round of applause.
[APPLAUSE]
Thank you. Thank you. Well, this event was put on by a lot of people. There was a tribe. So just know that it wasn’t just me.
But today, our program has come to a close. We truly hope you enjoyed our legislative forum. A big thank you to everyone that supported and attended today, including all of our online and in-person attendees, our legislators, state leaders, ASL and cart service providers, our IT team, and for all the hard work of our MCD staff and, idream.tv our production company.
And really a very special Thank you to all of our advocates. You’re the heartbeat behind what we do. And an honorable mention to those who took time out of their busy lives and schedules to go into the studio and do pre-recordings about their impactful lived experiences and stories that we all saw on the screen today.
And also, I really want just speak to the family members and loved ones of those who have passed from the tributes that we did. We honor and truly appreciate you. Thank you for the legacies that have been left.
We ask that you complete our survey please online, which is linked in the chat for our online audience. And for those in person, please visit our website at disability.state.mn.us and complete it. We also have QR codes sheets printed in the back of the tables with QR codes as well that you can link to the survey. We really want to hear from you.
And if you have any questions or feedback again, for legislators, we also want to remind you to keep in touch with us. And subscribe to our newsletter. Visit our website.
We just really want to show a level of appreciation for all of you. Before you leave, please grab some MCD swag at the back of the table. So we do have bags and some really cool items.
And I just want to speak from my heart for a moment and just share that each of us has the power to change our world, even if one life at a time. Love is truly the most powerful driving force to effect change in our world. So let’s show love and kindness to each other.
But also, just please be kind to yourself. So be kind to yourself. So again, thank you for spending the day with us. And have a great weekend. MCD thanks you.
[APPLAUSE]
ANNOUNCER: Please stay in touch on social media via Facebook or on our website at disability.state.mn.us, by phone at 651-361-7805, or email at council.disability@state.mn.us. Thank you for joining us for the MCD 2025 Legislative Forum. Please complete our legislative forum survey. The survey will be available on our website at disability.state.mn.us.