VOICEOVER: 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.
SPEAKER: Good morning, everyone. I am the new civic engagement director at the Minnesota Council on Disability, otherwise referred to as MCD. I am an African American woman with black hair, wearing a royal blue colored jacket, and black colored top with silver accent jewelry.
Welcome to the Minnesota Council on Disabilities Biannual 2025 Legislative Forum. We at MCD extend a huge thank you to all who are in attendance and those who will be joining us in person or online, which includes the disability community, advocates, the public, the press, policymakers, legislators, state leaders. This is our first live in-person forum since COVID.
So the purpose of this forum is to provide an opportunity for the disability community and advocates to come together with state decision-makers and leaders to collaborate in ensuring a barrier Free Minnesota and to protect the Civil rights of people with disabilities. This forum is also designed to bring awareness to the rights of people with disabilities to disability rights issues, with the ultimate goal of developing policies and legislation that will benefit the lives of the disability community.
We are excited to present a robust yet evolving program to you today. Our event runs from 10:00 AM to around 3:30 PM, but may run a little longer, depending on the schedules of our guests. It is a drop-in style format for participants, both in person and online, so individuals can join at any time throughout the program and based on segments that are of most of interest to you.
The agenda will come shortly, and we also have printed agendas at the table. All Minnesota legislators from the House and Senate were invited to attend or participate in our legislative forum today. However, those legislators who are speaking, sharing remarks, or participating in a panel today are doing so based on their schedule, availability.
Just a few housekeeping items before we start. For those here in person, restrooms are located down the hall to the left, just past the elevator on the main level. The Wi-Fi code is case sensitive and is capital M as in Mary, N as in Nancy, G as in Gary, lowercase u-e-s-t Wi-Fi, and the W for Wi-Fi is capital letter.
Lunch, please take care of yourself. Feel free to move around as needed. Take breaks. Standing if you are able or moving about in the room is just fine with us. We want you to feel comfortable. There is coffee for you on the counter. Lunch will be served around 12:15, but the agenda may change and is flexible.
Accommodations today include ASL is being provided in this room with each recorded segment. For audio description. We have asked each person speaking today to self-describe themselves and their visual appearance. Live captioning is available through stream text link. You can find the StreamText link in the Zoom chat. You may also choose to use the automated captions in Zoom. To use Zoom automated captions, select the Show Captions or CC button. If you need assistance, any assistance at all, please email council.disability@state.mn.us
This event is being recorded. The recording will be available on the MCD YouTube channel soon. This event will not have a live chat or question-and-answer portion, but you will have the opportunity to share your thoughts and questions in our online survey, which can be found on MCD’s website at disability.state.mn.us.
Please stay tuned to the MCD’s website and social media and subscribe to our monthly newsletter to keep updated with policy developments and disability news. We want you to know that we truly appreciate all of you and your support in taking time out of your busy schedules today to join us.
Now, I want to provide you with a summary of our agenda. Program details and times are approximate and subject to change, but we are going to after this, have some legislator remarks and advocate statements. At 10:30, we will have a moderated panel on-demand accessible transportation. Approximately 10:45, we’ll have some more advocate statements. At 11:00, we have a moderated panel on the Damon Leivestad Direct Care Sustainability Act.
At 11:30, we have some public officials that will be speaking. 12:15 is lunch break. 12:45, we have various legislators that will be providing remarks. At 1:30, Tributes to advocates who have passed. 1:50, we have more public officials that will be speaking. 2:15, more advocate statements, and at 2:30, we will conclude with MCD council members and staff and wrap up from there.
We’ll ask that you give your feedback on today’s event at the end of the program. We hope you enjoy our forum. Next, I want to introduce our event MC, Quinn Nystrom. For the past 30 years, Quinn has been sharing her and her brother’s experiences living with Type 1 diabetes with over 300,000 people across North America.
In 2017, Governor Mark Dayton appointed her as a council member of the Minnesota Council on Disabilities where she served two terms. Nystrom is a leader in the Minnesota Insulin for All Chapter, advocating against the high insulin costs in the United States. She has collaborated with four presidential administrations to explore ways to reduce healthcare costs for individuals with diabetes. She has numerous other accolades to her name. Please welcome Quinn.
[APPLAUSE]
VOICEOVER: Please welcome your event MC, Quinn Nystrom.
QUINN NYSTROM: Hi. Welcome, everybody. I’m so excited to be here. I served two terms on the council, and so I know the work well. I’m really passionate about it. And I’ve also learned a lot over those eight years of serving on the council. For me, I was coming in as a person living with type 1 diabetes, sort of an invisible disability that I think sometimes people are like, is that a disability? Is it not?
And so I was able to raise awareness and educate people about what I live with every day. But then I learned so much more from my fellow council members, from staff at MCD, from the experiences that I’ve had over the past eight years. And so I’m excited that I was asked to emcee this event. I think you’ll hear from a wide array of all different types of people and backgrounds, and from different parts of the state.
So I’m going to open my agenda because nobody likes when you’re running behind. So I will do my very best to stay on top of things today and keep people on time and moving along. And I’ve already failed at my job because I need to give my audio/video, my physical description. So my apologies.
I am a female. She/her pronouns. I have long blonde hair. I have a green vest with a black turtleneck. And we will ask other speakers if they can give a physical description as well when they come to the microphone, as we have a lot of people tuning in online.
So I am so excited to introduce our first speaker. And I actually found out last night that him and I are sort of neighbors, a hop, skip, and a jump. I hail from Saint Michael and he hails from a cabin in Rogers, is what I’ve heard. So I’m excited to introduce him, Representative Danny Nadeau.
[APPLAUSE]
DANNY NADEAU: Thank you. Yes, I do. I built a cabin. That’s what I live in. I raised my kids there. I live on a small little island in the middle of a Type 5 wetland. And it’s very different from Saint Paul, I assure you. It’s quiet and there’s a lot of solitude, and there’s been a lot of discussions that have happened out there. So, hopefully, I’ll run into you somewhere out in the district.
QUINN NYSTROM: Hopefully, you will.
DANNY NADEAU: Yeah, I represent Northwest Hennepin– Rogers, Dayton, and Champlin. And I’m just starting my– I’m just starting my second term. So I don’t know anything, hardly. I served the last session. It was very interesting. I learned a lot. I worked for Hennepin County, I negotiate contracts primarily for disabled kids and adults. I do school-based mental health work. I do some criminal justice, juvenile diversion work.
And so that’s the world that I live in. I was chief of staff to a County Commissioner for a number of years, but I want to thank you all for being here. I have spent the last, probably four or five years working alongside you in this industry, and it’s amazing the commitment, the passion that people have to try to make the world a better place, focusing on that very person-centered approach.
And I’m honored to be able to work on it from a legislative side. When we talk about person-centered, one-on-one, or between people, between providers and participants, and then when we try to have that discussion at a legislative level, we lose things. And it’s a challenge because at the legislative level, we’re always talking about– we’re talking about money a lot of the times. We’re talking about aligning licensures a lot of the time, and the challenges that a facility may be licensed under the Department of Health, but the services are licensed under the Department of Human Services. And how do we align those things to make sure that we’re not creating more barriers to people living with disabilities?
AUDIENCE: [INAUDIBLE]
DANNY NADEAU: I enjoy working on those things. And I also have learned that legislators know a lot less than we should. So that’s my focus this year is to try to listen more, lecture less, and that’s why I’m here, and that’s why I’m delighted to be here as long as I can to hear directly from you guys to find out how we can do our job better because I think that’s what it’s going to take.
It seems like our services and our agencies and providers and you, our expectations are changing. We’re moving at lightening speed, and we want to make sure that we’re responsive and respectful, and that we’re providing all those levels of service that we possibly can. So I want to thank you for being here. I want to thank all of you for educating me. I’m looking forward to some of my colleagues, and learning from them as well today. So if you have ideas, thoughts, please reach out. I would love to listen and meet you. So thank you so much.
[APPLAUSE]
QUINN NYSTROM: OK. Thank you so much, representative, for coming. And your cabin sounds a lot nicer than the old development that I live on, a very small pond in St. Michael’s. So I will make a trip over. So next up, and we’ll do this as a reminder throughout the event. But we want to make sure that if you have comments or questions or maybe you have a specific question about something that’s come up in your district or at work, fill in the blank. we want that feedback.
And we know the electeds who have shown up today, and some others also want that feedback right from constituents about where they can help, or maybe a piece of law was passed into law and it was supposed to help you, but there was just something. And I’ll just say this from experience with some insulin bills where we’ve had to go back and work with elected officials to make sure that it works for the people who are in need.
And so if you have that feedback, I know that they’re very interested in getting that. So we would ask and encourage people to maybe if you want to write it on post-its, as you go along through the day, and then there will be a survey sent out where you can submit that information.
And our first segment of advocate statements focuses on transportation, we have them clumped and grouped, and that will be followed by a panel discussion led by the Minnesota Council on Disabilities, you’ll hear us sometimes say MCD, by the MCD ADA Director David Fenley. So we will start with our first advocate video here. And they will be in regard to transportation.
VOICEOVER: Nothing about us without us. Comments from advocates. A message about rural transportation from Lisa Black.
[VIDEO PLAYBACK]
– Hello. I’m Lisa Black. I live with my husband on the farm here outside Gibbon, Minnesota. I’m a fifth-generation American of English and German heritage with brown hair and blue eyes. Today I’m wearing a blue cardigan sweater over a blouse of light blue color with silver dots around the neckline. I also wear glasses with light brown frames.
[SPEAKING GERMAN]
In December 1992, exactly three months after my return from a year of study abroad in Germany, I was in a serious car accident, giving me numerous broken bones and a traumatic brain injury. I was in a coma for five and a half weeks.
I came out of that coma speaking German, the language of my host country, for 13 months, just three months prior to my accident, and I have no memory of coming home. Thus, I had to be told, Lisa, here you speak only in English, otherwise, no one will be able to understand you. Again, I have no memory of coming home in August, nor of the three months before the accident.
By God’s grace, broken bones heal, and I have learned many memory helpers. One of the many difficulties that I continue to deal with is safe driving. Due to the brain injury, my decision-making is not swift enough to drive safely in heavy traffic. My lack of memory on where to turn or how to get somewhere is also hindered.
One of the nerves in my left eye was severed due to the impact of the accident in 1992. This gives me double vision, meaning I see everything in double or with a shadow, making it difficult to determine how far away traffic is and how quickly it is coming toward me, also a big hindrance in my ability to drive safely in heavy traffic.
There is a park-and-ride service in which I could drive to an outer Twin City suburb, connecting me to a bus transit system. However, these lines or service only on weekdays and the connections are difficult to find and are very infrequent.
In 2018, when I went to the state capital with my county’s volunteer driver service, the Trailblazer Transit, it cost me $180 round trip. I took that transit system two or three times, but this service is no longer available. Today, I would need to use the smart ride service of the Sibley/Mcleod Auxiliary Regional Transit.
At $2.50 a load a mile, it would cost me $525 round trip to visit the capital. County systems need funding in order to operate. Rural transit is lacking in Minnesota. It needs more funding. Please improve transit in Greater Minnesota. Help me get there.
VOICEOVER: Councilmember Myrna Peterson, and friends, from Grand Rapids, Minnesota.
[VIDEO PLAYBACK]
– TIM EDWARDS: Good morning, Grand Rapids. Tim Edwards here on KOZY. It’s a beautiful, brisk morning. It’s only 29 degrees below zero.
MYRNA: Hi, my name is Myrna Peterson. I am a board member on the Minnesota Council for Disability, and I represent DEED’s Region 3, which is Itasca County, going all the way over Northeast Minnesota to Wisconsin and all the way up to the Canadian border.
I’ve been living in Grand Rapids for the past 20 years. I just appreciate the variety of activities here in Grand Rapids to be involved with– the arts, the athletics, the culture, the history, the environment, hunting, fishing. It’s just a little bit of heaven right here in Grand Rapids.
– Hey Adam
ADAM: Good morning, Myrna
MYRNA: Good morning to you.
– Being in a wheelchair, I need accessible transportation, which we’re very limited evenings and weekends. And that’s when many of the social and arts activities that I belong to are happening.
One of my favorite projects was when they were doing a fundraiser to get me a car that I could drive myself. My friend Lee and I had our accidents on the same day. And I said, if I’m going to get a car, I want to get a four wheel drive pickup for my friend Lee. We attempted to see how many wheelchairs we could get rolling in a certain number of minutes. We ended up with 351 wheelchairs rolling in succession for three minutes.
While we were overwhelmed with the number of people, Lee and I went to four different communities within Itasca County to find out. Why don’t we see you in the public? We don’t see you around. The answer clearly was, number one, transportation. Lee and I together formed a nonprofit called Mobility Mania, Accessibility for All, and began to look for ways that we could find transportation to get all of our friends to the activities that they were missing for their quality of life.
It was a perfect opportunity when Michigan May Mobility wanted to pilot project for autonomous vehicles in a cold climate and focus on accessibility. And so we accepted the challenge. And now we have goMARTI. We have five autonomous vehicles. Three of them are ADA-compliant.
ADAM: That’s everything. Looks like we’re good. You’re good?
MYRNA: Yes, I’m feeling secure. Thanks, Adam.
ADAM: All right.
MYRNA: OK.
ADAM: Where are we heading off to?
MYRNA: I’ve got an appointment at the clinic, Adam.
ADAM: All righty.
MYRNA: That’s where we’re headed.
ADAM: Sounds great. Let’s get going.
MYRNA: Anyone can ride it. There’s an app on your phone, or you can call 211 for booking a ride. It’s on-demand, so it works as a transit service, but perfect for literally getting me off the streets.
ADAM: Hello, Kayleen..
MYRNA: Hi–
KAYLEEN: Hey, how are you guys today?
MYRNA: Are you off to work?
KAYLEEN: Yes, I am,
MYRNA: So where do you stop? Where do you stop when you go to work?
KAYLEEN: Stop number 8 at Anytime Fitness.
MYRNA: One of the unique things about goMARTI’s project is that it’s all community-based. When they started the operation, they went to the community and said, where do you want to go? We have now a route of over 17 square miles, but we have 78 stops within that distance.
JUDY: Good afternoon.
MYRNA: Hi, Judy.
JUDY: Hi.
MYRNA: Hi, where are you off to today?
JUDY: I’m headed to Super One North.
MYRNA: Minnesota law requires that there’s an operator, but there’s such a great assistance for me to buckle me in for safety and for my visually impaired people who need some guidance or are elderly population. It fits everyone and totally free to our community.
For me and my family, it has been such an improvement for quality of life. I put about 1,500 miles on my chair every year just going on my own. But now with goMARTI, I don’t have to go out again when it’s 20 below temperature, or in the rain or in the snow. And I have an accessible way of transporting me to activities that improve my quality of life and those of my friends that I advocate for.
ORLIN: [inaudible] Community School. This is Orlin.
MYRNA: Hey, Orlin, it’s Myrna. I like to know what’s going on in my community. So I can help to make it better. Being on the council of disability provides avenues for further engagement. So I can reach out and say, as a representative of the council, how can I help you? Everyone agreed that I should bring it up as an option. I couldn’t do my advocacy work here without the support of the city council. Without the support of the people at the library elder circle. We’ve got a village here that works.
[MUSIC PLAYING]
I have one thumb that works and a mouth that won’t quit. And I’m very proud of it because I’m a dreamer, I’m a visionary, I like to look at the big picture, I want my utopia, and then I start backwards. What steps do I have to take to get to my final dream?
The work that all of us are doing through the Minnesota Council on Disability, the changes that we’re making here, positive changes for people of all ages, of all abilities is going to be impacted throughout our state, throughout our country, and throughout our world.
VOICEOVER: And now, please welcome David Fenley, MCD ADA director, moderating a conversation about on-demand accessible transportation.
DAVID FENLEY: Good morning, everybody. David Fenley here. Like I said, I am the ADA director at the Minnesota Council on Disability. I’ve been here for about 10 years now. We have three panelists. I’ll let them introduce themselves. I am a white male with brown and gray hair. I have a dark blue button-down shirt on, and we are having a conversation on accessible, on-demand transportation.
Before I kick it to our panelists to introduce themselves and talk a little bit about this, I think it’s good to define what on-demand accessible transportation is. I think a lot of folks take for granted their ability to have a car show up, or to hop in their car, or to hop on a bus whenever they want to go, wherever they want. That would be considered on-demand, accessible being you can use a wheelchair with it.
We don’t have a lot of options for on-demand accessible transportation in Minnesota, and that does include the cities too. So with that said, I’ll pass it just to my left here. Let’s start with the representative.
STEVE ELKINS: Hello, my name is Steve Elkins. I’m a state representative. I represent the western half of Bloomington. And I am about 5′ 9″ white male with salt and pepper light-brown hair, wearing a brown herringbone blazer, blue shirt, and paisley tie. And yeah, I’ve been– yeah, go ahead and do the introductions first.
SCOTT DIBBLE: Hello, everyone. Thank you very much for the honor of inviting me and being a part of this conversation. My name is Scott Dibble. I’m a State Senator. I represent most of Southwest Minneapolis, about half of downtown, a little sliver of North Minneapolis. I chair the Transportation Committee. I use he/him pronouns. I’m a white man, and I have blonde hair trending towards gray, a beard that’s pretty much all gray. I’m wearing a matching gray jacket and a gray tie that has flowers on it, and a beautiful print shirt, and very happy to be here. Thank you.
SUMUKHA TERAKANAMBI: Hi, everyone. My name is Sumukha Terakanambi. I’m a– sorry, I think it’s working. OK. Sorry about that. Hi, everyone. My name is Sumukha Terakanambi. I am a public policy consultant here at MCD, and I also work for the Rare Disease Advisory Council. And I’m here today as a self-advocate to share my experiences with barriers to transportation. I’m an Asian-Indian male with glasses, a black beard, black mustache. I’m wearing a blue sweater and black pants, and very happy to be here today.
DAVID FENLEY: Thank you, all, very much. This is David again. Let’s start with Sumukha. I just want to ask you a basic question. What does accessible on-demand transportation mean for you in particular?
SUMUKHA TERAKANAMBI: So, for me, I would say that the way I define on-demand is basically I should have the ability to use one of the TNC apps to book a ride. And within a couple of minutes, a ride shows up. And it’s fully wheelchair-accessible, so I can be tied down to the vehicle and safely get transported to where I need to go.
Basically, the way the system is set up right now is that I have to plan my day way ahead of time around the availability of transportation. If you use nonmedical emergency transportation or Metro Mobility, that is something you have to book way ahead of time, sometimes two days in advance. And so that’s obviously not on-demand.
And so whenever there’s something that comes up that you need to be at or a spontaneous event in the community, whatever it is, really, you don’t have the option of finding that. You don’t have the option of finding that transportation. It’s not available.
And I can also provide just another example of why this is such an important issue. This recently happened about two years ago. I was actually stranded at my local Sports Clips because– so when I went to get a haircut, which is something that everyone does, so something very normal, I went there and my accessible van ended up breaking down, actually.
So what happened is the ramp was jammed and it wouldn’t release, and so there was no way for me to enter the vehicle. Keep in mind, this was happening in the middle of winter, so it’s not like I could walk home or anything like that. It was too cold outside. I was too far away from public transportation.
Like I said, to use Metro Mobility, you have to book it way ahead of time. So that was not an option. So really I was left with no options and there was just a lot of anxiety at that moment, not knowing how I would get home because there was no options.
Normally, people could book an Uber or Lyft. And it would come within a few minutes, and they could get home in cases like this. But, of course, I did not have that option because wheelchair-accessible vehicles is a gap in the on-demand system right now. And so I basically had to wait at the Sports Clips for several hours while my dad, who had taken me there, tried to get the van fixed.
And there was a lot of uncertainty, and luckily things worked out well where it was able to get fixed. But, of course, the question is what would have happened had there not been– had it not been able to be fixed? The possibility of me being stranded for a more prolonged period of time, and potential safety concerns too, had I not been able to wait inside.
Luckily, it was in the afternoon so the Sports Clips was open. But it’s possible that if I’d been stranded outside, of course, winter that’s an issue. So I think it’s not just about making sure people can go where they want for fun or for social activities, but there can be a real safety issue as well.
DAVID FENLEY: Thank you, Sumukha, for sharing that. So this has been persistent in Minnesota for many, many years. And it’s been worked on at the legislature for probably just as many years with little to no progress, not because of either one of you. You’re both transportation leaders. You’re both leaders when it comes to making sure that bills that support folks with disabilities move through the House and the Senate. Representative Elkins, can you speak to a little bit about some solutions and things that you’re working on?
STEVE ELKINS: Yeah. Thank you. I’ve been working with the Council on Disabilities for several sessions now on a bill that would assess a surcharge on shared mobility rides in order to create a fund that would allow the shared mobility, the transportation network companies to acquire a fleet of accessible vehicles. It’s the big problem that people who need wheelchairs have is that hardly any vehicles in the shared mobility fleets are wheelchair-accessible.
So this bill would create a fund that would allow the TNCs to buy– a little closer, yeah, OK– a fleet of accessible vehicles specifically to handle the needs of people with wheelchair dependency, and we haven’t gotten it back. We were really hopeful actually that last session.
That is part of the negotiations over raising the pay of the shared mobility drivers, that we would be able to get this on as a writer. And we were really disappointed last year when that didn’t happen. But we’re keeping keep trying. And Senator Jim Carlson in the Senate is the Senate author on that bill, and we’re plugging away at it.
DAVID FENLEY: Thank you for that. I do remember that from five or six years ago. It’s been ongoing for quite a long time. Can you speak to what’s going on in the Senate. You can also speak more broadly to accessible transportation. I know, you’ve been an advocate for especially public transportation. When your party is in power, you tend to chair the Transportation Committee in the Senate.
SCOTT DIBBLE: Well, thank you. Thank you so much for the question. And allow me to go a little more broadly as well. But first let me speak to the proposal that’s in front of us. Senator Jim Carlson, as Representative Elkins said, is carrying the Senate companion and is a very hard at work trying to figure out the best approach. He’s talking with the variety of stakeholders.
We were scheduled for a hearing a few weeks ago, but apparently he withdrew the bill from consideration pending further conversation and trying to figure out what makes the most sense. I appreciated Sumukha’s story. The same story that many of you have probably heard is shared by probably a number of you. But Joan Willshire, of course, has an almost identical story where her car broke down.
And if I remember the details correctly, it was in the middle of a pretty outrageous snowstorm, and her car needed to be towed. And able-bodied people would just hop into the cab of the tow truck or walk home or whatever, and it’s like, no problem. She had zero options. There she is, Downtown Minneapolis, in her wheelchair, and obviously can’t hop up into the cab of the pickup, of the tow truck. No TNC, no Lyft or Uber is available to her. There were actually police on the scene who were frantically trying to figure out a solution, none of which were really feasible.
She has a motorized wheelchair. There’s really nothing to be done with it in terms of their car’s ability to handle it. And she certainly wasn’t going to have them pick her up and put her in their squad, so she just motored home. She didn’t live too far away, but had to motor home in her wheelchair in the falling snow. She got a police escort. So just it’s unimaginable to many of us to be caught in a circumstance like this. So this is very, very compelling. I have a lot of urgency.
I feel a lot of urgency around this, and in close conversation with Senator Carlson on the progress of his conversations so that hopefully we can get something done. It’s just so frustrating that we haven’t had it across the finish line quite yet. I did want to just mention briefly, the dreaded metro mobility.
We did, of course, have heard many of the stories that come from the Council on Disabilities as well as our constituents. We all get numerous calls every year, every month about service failures at Metro Mobility.
We did commission an investigation, what we call a program evaluation by the legislative auditor last year, and the results were presented, or I should say, the year before last. The results were presented last year, and the findings were, of course, distressing but not surprising around some of the systematic issues that give rise to all of the service failures that we cite in Metro Mobility.
We did hold off on wholesale change to that service, pending the outcome of a pilot that we had passed in 2023 that was sponsored by Senator Marty. I don’t know who were the House author of the pilot. And that had to do with–
OFF-SCREEN: Representative Moller.
SCOTT DIBBLE: Oh, Kelly Moller, who is here waving her hand in the back, was the– and so some of those were very promising, some on-demand elements to it, expansion of service hours. And maybe Representative Moller can help remind us of some of the other details. So now we need to look at those and bring some of those initiatives to scale.
Metro Transit, Met Council also had some pilots that they wanted to have a chance to work out as well. We did just have a convene a discussion among a number of senators who really have some energy around this space.
Again, Senator Marty, Senator Johnson Stewart, who is my vice chair, Senator Fateh, myself, and we are interested in, at a minimum, making sure that we pass some provisions that hold the third-party contractors more to account for their on-time service there, the accuracy, their dispatch, et cetera, because it was found that the complaint system just didn’t work, and without data and information, there’s no way to improve the service.
And some of the financial incentives were being provided regardless of the standard of care and some of the financial incentives in terms of sanctions for failures were not being adequately followed or enforced.
So some of those playing around the margins, I admit, we will enact this year just to hold Metro Mobility more accountable, but we are going to try to get the TNC piece done. We are going to continue– I saw a little bit of the tail end of the video presentation around micro transit to provide some on-demand neighborhood scale accessibility, solving some of the last mile issues that we have, connecting people to places where they need to go or regular route scheduled transit service, those sorts of things.
I think micro transit is going to be a big part of the picture. And then you might have heard, of course, that folks who qualify for Metro Mobility in the metro area can access regular transit without any free or fare. And that was a pilot that I think we’re going to bring to scale and make that more permanent.
So when a trip that you need to take can be made by regular transit and is appropriate to your circumstance, in that particular situation, you can just board the bus or board the LRT without paying any fare. So that’ll be something we do this year as well.
DAVID FENLEY: Thank you all. So, clearly, it has the potential of being a life or death situation. We’ve already heard two stories. I’m sure there are a lot more stories out there from folks who face these barriers. There are pockets I know around Greater Minnesota because this is not just a Greater Minnesota thing. It’s a problem in both the Metro and in Greater Minnesota.
We do have pockets. As we saw in the video, we do have pockets of on-demand transportation in Greater Minnesota. Usually, ours are limited and it really depends on what part of the state you live in. But would this solution be statewide? Can any of you actually speak to solutions that might be statewide as opposed to focusing on public transit here in the Twin Cities?
SCOTT DIBBLE: I’ll speak briefly to it. That reminded me of another initiative that we’re awaiting the results from, and that was the dynamic transportation study/pilot that Senator Westrom was the chief author of that was passed, and taking a look at exactly that in greater Minnesota. He’s, of course, a greater Minnesota legislator.
So the short answer to your question is that would be my aspiration that we provide this kind of on-demand transportation access mobility service to anyone who lives anywhere. I think that’s a minimal expectation. I view it as a fundamental human right. And it just we’re smart people and it’s about priorities and values and resources, so let’s do it.
STEVE ELKINS: I think the goMARTI demonstration project was what we just saw on the screen. It was very heartening as a possible model. So we want to see more of that. And autonomous vehicles, I mean, it was noticed that– mentioned that the current law in Minnesota requires an attendant. And I think with the vehicles that are available right now, that would pretty much be required, anyway.
I attended the annual technology legislative forum in LA in December, and there were actually several vendors of autonomous vehicles there, including several promising-looking shuttle type vehicles. But when I talk to the companies about their products and ask them, are these going to be suitable for the use of people using wheelchairs without an attendant? They all said, well, we’re not quite there yet. We’re still going to have to have attendants. So we may be waiting a little bit, but there’s a lot of promising technology advancements happening at the same time.
DAVID FENLEY: Sometimes it feels– It’s like not working. it’s not working. Let’s do this. I know with this topic and many others, a lot of times, it feels like folks with disabilities are an afterthought. I think self-driving vehicles, folks with disabilities stand to benefit probably the most out of any group in our society from self-driving vehicles. And I know in Minnesota we have been pushing to keep accessibility at the top. So it’s not the early adopters. We want folks with disabilities to be early adopters. Can any of you speak to that?
STEVE ELKINS: I have a constituent named Patsy Murphy. Some of you may know her. She’s a self-advocate for the Brain Injury Alliance, and she still talks about this to this day. But there was a day a couple of years ago where VSI Labs, which is an autonomous vehicle research company based in St. Louis Park, had one of their demonstration vehicles at the Capitol.
And I was able to take Patsy on a ride around the Capitol complex in this VSI car. And it just felt– I mean, even though it’s not something that’s going to be out there today. Just having that experience and being able to envision what this would eventually mean to someone like her, she still talks about that every time I see her when she comes by the Capitol.
DAVID FENLEY: Thank you. How are we doing on time? We got three minutes. Sumukha, maybe we can finish with you. Can you speak to other barriers you may face when it comes to finding accessible transportation? Or pretty much whatever you want to talk about. Any particular thing you want to add to this?
SUMUKHA TERAKANAMBI: Yeah, I mean, the only other barrier that I’ve faced, and this is not necessarily having to do with on-demand transportation, just transportation in general, one of the issues so– one, I’ve used non-emergency medical transportation that’s paid for by the waiver. I’ve had issues where the amount of funding that I received through the waiver did not cover transportation to and from the location that I was going to.
So this happened when I was still in college. Because of limited funding, sometimes on certain days I would get transportation to my college campus, but then my parents would have to pick me up. And then other days I could get transportation to and from. So it kind of depended. So I know that that’s an issue where reimbursement for providers is a barrier and something that can affect the availability of transportation.
I did talk a little bit already about the fact that I have to plan. My schedule has to be pretty set for me to get transportation. So that’s kind of the situation I’m in right now where my parents have to really fill in that gap of transportation. So that’s a broader issue.
And then I think, like Senator Dibble mentioned, Metro Mobility is– I know there’s a lot of challenges with Metro Mobility, particularly with timeliness and reliability, especially for people who are employed because if you’re employed, you have to be at work at a certain time. And so that can be impacted by a lack of transportation as well.
I’m trying to think what else I wanted to add. Yeah, I guess the last thing I’ll add is in terms of the TNCs is the fact that other cities and states have seemed to figure it out. So in other cities, you can get wheelchair-accessible vehicle through the app depending on which city you live in. So some cities, I believe you can do that. And then even states like California, for example, they have established a fund to enable on-demand transportation.
So there are examples around us and even other countries as well. I’ve been to Europe before, and when I was in Paris. I could get accessible taxi on-demand, so I’ve seen it. Actually, in my own personal experience, I’ve seen it happen. And so, hopefully, in the next couple of years, Minnesota can look to those examples and join those examples and be a state that prioritizes people with disabilities in transportation. So, hopefully, we can get there.
DAVID FENLEY: Thank you. Thank you, all. We are at time. I know we’re just trucking right along here. Transportation, specifically accessible on-demand transportation, I think is extremely important, probably a keystone when it comes to independence and freedom to values that we hold quite close to ourselves here in this country. So I think this is something that should have happened a while ago, but I’m glad that we have leaders and advocates who are pushing on this. I’m going to pass it back to Quinn. Quinn, come on down.
SCOTT DIBBLE: Oh, yeah.
DAVID FENLEY: One more thing, hold on real quickly.
SCOTT DIBBLE: I just want to say thank– I just want to say thank you. And just my final benediction is please remain in communication and relationship with your elected senators and representatives. It helps us do this work when we’re hearing and getting pressure from our colleagues, because they’re getting pressure and engagement and hearing your stories. There’s no substitute. So please, please, please continue to call, visit, and email your legislators. Thank you.
[APPLAUSE]
QUINN NYSTROM: Thank you so much. I think that was a really great lively discussion. And I couldn’t have said it better myself than what Senator Dibble said. I think sometimes people feel like they can’t reach out directly to their elected because they’re like their elected official and they’re nervous or it seems intimidating.
But as an advocate, and I’m glad the Senator reminded all of us, they want to hear from you. We are, in a way, their bosses, and so they don’t know how to vote, or maybe what piece of legislation to work on, or like I said, even if a bill is passed into law, they may not know then how does it actually work once it’s into law and it’s an everyday thing, and maybe there’s just some writing that got kind of messed up a little bit.
And it’s, I think, our jobs as the constituents to reach out to them. And so that is regardless of political party. They represent you and your district, and we need to make sure that we keep a relationship, and that we reach out to them. So I thought that was great that he said that.
So next up we have a couple more advocate statements, and these are kind of clumped in the category of direct care and other related services. So look above, or if you’re online, just continue looking at your screen and take it away.
VOICEOVER: And now nothing about us without us. Continuing comments from advocates. Thabiso Rowan shares some thoughts about medical assistance reform.
THABISO ROWAN: Hi, my name is Thabiso Rowan. I am a male. I have African and European ancestry, and I use he, him and his pronouns. I have black hair, caramel skin, brown eyes, and I use a wheelchair. I identify as a person with a disability. I sustained a T9 through T11 spinal cord injury at age 25, 13 years ago. And I’m paralyzed from the waist down.
My life drastically changed, and I became more dependent on supports and services because our society and communities don’t always support physical and other disabilities. I started having to pay for medical supplies just to go to the bathroom, including my catheter supplies.
The cost for medical is so expensive that I became reliant on Medical Assistance. Because of my injury, I lost my job, home, car, and more. I had to start my life over again. I went back to school and started a new career in disability services. School was no picnic either. Trying to find accessible education settings is another story for another day. Straight MA would have not allowed me to work because there are income and asset limits for the program.
Because I choose to work, I am able to qualify for medical assistance for employed persons with disabilities. Now, I still could not save more than $3,000. That is until the program was updated with legislation that reformed the program just last year.
Let’s face it, saving for our future is extremely important to a person’s health. My health, independence, and to be able to meaningfully contribute to my life, instead of relying on systems for financial security.
Keeping people trapped in a cycle of poverty isn’t good for the systems, and it’s not good for people, for me either. Many of my friends have been saving for the years, contributing to their financial security.
Just in the last year, I was able to start saving for retirement, my son’s college fund, and other ventures that are important to me. These programs, like MA, may not impact you, but they impact me. And my family. All I want to do is work, support my community and family, and live a comfortable life, which I think we can all agree on and aspire to.
I live in Ramsey County. One extreme issue that I would like to address is the inefficiency of the county’s Human Services department. I have been denied medications and antibiotics while sick because of regular and reoccurring glitches in the system. I can’t tell you how many times me and many of my disabled friends and colleagues get kicked out of the system, even though I, we pay premiums on time and in full,
It’s usual for me when I’m trying to reach out to Ramsey County Human Services for assistance to rectify the mistake the system made. Not my mistake, that 8 out of 10 times on average, I get an automated message that they are busy and to call back later. It’s usual that I don’t get a call back.
Marginalized peoples, including elders, people with disabilities, and people of minority are more reliant on these programs. And when calling to get their food support, child support, and medications, they get an automated message to call back. Is this because we don’t matter?
I’m asking my legislators to please speak up and support us. Please protect those of us that need assistance to be able to support ourselves, our loved ones and our lives. I may not be able to go hiking on the Appalachian Trail or play soccer or enjoy disk golf like I used to, but I still want to enjoy the things that give me meaning in life, like having good health care, the opportunity to work, save money and support my family, contribute to all my communities, my spiritual community, my disability community, my friends. So, please don’t take away what I have left to live for.
VOICEOVER: Susan Kane, PCA Services & Travel.
SUSAN KANE: Hello, everyone, I’m Susan Kane, female from Lake Elmo, Minnesota, wearing a pink top. I’m the mother of Hannah Kane. Having grown up in the ’60s and being aware of how people with disabilities were treated living in institutions, one of the many fears we had when we realized the gravity of our daughter’s disability was like all parents, where and how would she live after we were no longer able to care for her?
That concern of where and how she would live became secondary to the many, many more pressing, immediate concerns as she and we negotiated doctors, therapists, educational systems, and so many other challenges as she grew to become the vibrant, outgoing young lady we know today.
We have encountered and dealt with many hurdles, both expected and unforeseen, and now we find ourselves facing head on in very real time our initial fear of what’s to become of Hannah after we’re gone. One of, if not our biggest concern, is housing. We thought Hannah’s housing was dealt with. Hannah lives in her own home. We planned. We worked very hard to save and pay for her home. She has staff that come in to assist her with her essential life functions and ensure she is safe.
To accomplish this staffing, we were forced to switch from the Developmental Disability Waiver, or DD Waiver, using the Consumer Directed Community Supports, known as CDCS, option to the DD Waiver using Individualized Home Supports, known as IHS. One of the unintended consequences of that change is the reason for bringing this to the attention of the legislature.
We have discovered that according to the law, Hannah cannot get the support she needs if she is to travel out of state. Previous to this change, she was able to bring staff with her when she traveled, and she was free to travel with staff, with or without her family. We always paid for her. We always paid for staff travel expenses. The waiver paid for wages for staff via CDCS, the same as they would if she was simply sitting on her own couch in her own home.
For Hannah to live a fulfilled life, it is important that Hannah is able to travel to visit her many cousins and friends that we have fostered relationships with throughout her life. We have done this knowing seeing her friends and family makes her happy and fulfilled. And we believe being connected to the people she loves will make her future happy.
When we are no longer living, it is our goal to have these relationships, cousins, to help give her added natural supports. This is only achievable by being able to travel. It seems obvious the IHS service was missed as the many other DD Waiver services allowed for out-of-state travel. Frankly, the way the ruling is worded, IHS disallows Hannah to go to Wisconsin for lunch with her staff, which is a mere 10 minutes from her Minnesota home.
In short, our fear and our greatest concern will be that she is trapped in her own home, isolated from the people that love her and care for her, just as in previous generations, she may have been trapped in an institution. We do not believe that was the intent of the law when it was written, and indeed it contradicts the freedom to travel freely that we all take for granted. Instead, it discriminates against people with disabilities living in their own homes to travel with the supports they need. We respectfully request the law be amended so that Hannah and all her peers can live the life they deserve, travel if they wish with the support staff, and not be restricted by any of the waiver programs. Thank you for listening.
VOICEOVER: Lance Hegland on the PCA shortage.
LANCE HEGLAND: Senators and representatives, thank you for hearing our voices. My name is Lance Hegland. I’m a middle-aged white male with very short, gray speckled brown hair, sitting in my motorized wheelchair in my bedroom at a group home in Brooklyn Park.
For over 15 years, I lived independently, recruiting and managing personal care assistants while working and earning an MBA degree focused on disability and aging services. However, due to our severe shortage of support workers, I was forced to move into a group home, losing my autonomy, privacy, and access to the accommodations I depend on for a healthy, safe, and dignified life.
What would you do if after years of independence you were forced into a broken system that stripped you of your dignity and safety? I had built a life where I controlled my care, my environment. And my future. But in November 2021, I had no choice but to leave my accessible apartment and enter a group home where I became a number, not a person.
Instead of safety, I encountered neglect. Instead of respect, I faced prejudice and discrimination. Instead of care, I endure trauma– not always, but enough to be alarming. One morning, there were no staff members in the group home for nearly 90 minutes. I was left stranded, unable to move in excruciating pain.
Medication errors. Twice, I was given a roommate’s ibuprofen instead of my prescribed potassium, an error I only caught afterwards because I and my girlfriend looked into the situation. In November 2023, a staff member misunderstood my instructions, causing a serious knee injury. Just months later, I was dropped into my bed, leading to painful back and hip injuries.
These are not isolated incidents. They are a pattern of symptoms of a failing system, long overdue for reform. I have a long list of neglect and abuse examples from other Minnesotans. Christine Mulcahy’s sister, Dennis Prothero, Randy Whitaker, among many more. I have a long list of fraud examples too. Why is this happening?
Underfunding has led to severe workforce shortages, forcing providers to lower hiring and training standards. My funding was slashed 41% over three years. Now, many people without proper training or genuine commitment are responsible for our vulnerable lives.
Dedicated workers are exhausted, burned out. Safety nets are overwhelmed and tattered. Case managers, 901, emergency rooms, hospitals, adult protection, licensing, and enrollment are only responding to the most severe cases, leaving many vulnerable Minnesotans in dangerous situations unprotected.
Oversight is weak. When I reported medication errors and injuries, the responses were dismissive. Law enforcement has refused to intervene in dangerous situations, leaving my roommate and I unprotected, even when facing immediate jeopardy to our health and safety.
How many other Minnesotans are at risk? How many more lives will be lost before action is taken? We must confront this reality with transparency and urgency. If resources are limited, we must provide those suffering with compassion and dignity. Increase funding to ensure sustainable care and fair compensation for workers. Strengthen oversight by mandating independent investigations of provider complaints.
We have decent staffing and training standards but we can’t afford to implement them, and we certainly are not enforcing them. We could be preventing harmful errors and injuries. We must also fairly compensate emergency responders so that law enforcement, emergency rooms and hospitals are able to adequately intervene in dangerous situations.
Again, this is not just my story, it’s the reality for thousands across Minnesota. We have the power to fix this. We must fund real care, enforce real oversight, protect real lives. As Franklin D. Roosevelt once said, the test of our progress is not whether we add more to the abundance of those who have much, but whether we provide enough for those who have too little. Minnesota prides itself on wisdom, interdependence, and compassion. It’s time we prove it. We must act now. Thank you.
QUINN NYSTROM: All right. These advocate statements are so powerful, and I loved– Myrna Peterson’s a good friend of mine, and I was telling her how much I loved her video, and I loved the line where she said, I have a strong thumb and a strong voice or a loud voice, and I loved it.
[SIDE CONVERSATION]
QUINN NYSTROM: OK, we’re just going to do a little adjustment on the schedule. So I’m going to first– so I don’t forget this part though, I want to thank, we have some state representatives in the room who showed up today, who just wanted to sit and listen and hear people’s stories, but I think it’s important that we thank them for coming because I know how busy your schedules are.
[APPLAUSE]
The first one is Representative Kelly Moller, who represents District 40A. And for a lot of us like myself who’s like, I have no idea where that is, I googled it, Mounds View and Shoreview. So that is what she represents, and she is a passionate advocate and has been a passionate advocate her whole life. So thank you for being here.
And then we also have Representative Robert Bierman here. He is from District 56A, and Google told me Apple Valley. And him and I have gotten to work on some things, and again another incredible advocate. And they wanted to be here today to take part in the event. So thank you so much.
Now switching gears. This is an easy gear for me to switch to. I’m going to be introducing our attorney general, Keith Ellison. He is here to speak on some things that he’s very passionate about, the work that he’s done.
I know I consider him a friend, an advocate, somebody I know in the diabetes community who has fought tooth and nail to get insulin affordable so that nobody in Minnesota has to die because they can’t afford insulin. So I have a lot of respect for his work. I’m excited to hear what he wants to share with everybody today. So I’ll welcome him up.
VOICEOVER: And now please welcome Attorney General Keith Ellison.
KEITH ELLISON: Let’s give a hand for Quinn, everybody. Come on now. Thank you, Quinn. It’s such an honor to be here with you. Thank you for the invitation. Please know that the Minnesota Attorney General’s office is here to help you. We want to be able to assist you. We want to be able to be your ally in your struggle for human inclusion and equality. And that means we got to be talking and we got to be working together.
We, I want you to know, right up front, don’t know everything. A whole lot of things we have to learn, but we’re willing to learn those things, and we want to do it in partnership with you. I believe in an inclusive society where everybody is recognized as for what they can do, what they can share, and who they are. And that means that we’ve got to be working together to advance that cause, the cause of the rights of people with disabilities.
But the truth is, I’ve met a lot of people in my life. About half of all of us are going to have a disability at some point in our life. And so really, it’s something that we all share. We all love somebody or in family or ourselves are facing some form of a disability. So it’s really not somebody else’s problem. It’s all of our problem. We’re not allies of the disability community. We are intrinsically connected to the community, and that’s how we should operate all the time.
Look, I want to talk to you about some things that I’m working on right now that do impact people with disabilities, which is either our neighbors, our friends or ourselves or our family members, and I want to talk to you about the importance of belonging. It is the central idea and vision in our country. Liberty and justice for–
AUDIENCE: All.
KEITH ELLISON: That’s a statement about belonging. It’s in the words that we’ve all heard so many times. And this idea of liberty and justice for all has no exceptions. There’s no comma except for trans people or immigrants or people with disabilities. It’s just liberty and justice for all. Period. Stop. And I love the elegance of that.
And we know our country hasn’t always lived up to this. And let me just give us a little historical reference setting. When our country was founded, it was not nearly good enough to be a white male to vote. You had to have property, you had to be Protestant in many times, and you had to be 21.
And so there were– so since that time, our country has expanded inclusion and opportunity year by year by year. It’s never been easy. But what we’ve done as a nation, as we’ve said again, liberty, and justice for all, all means all. And so this is an idea that we cannot just state, and it is. We got to fight for it and establish it every single day because the idea is contested.
And so I want to talk to you about the effect of some of the executive orders that we’ve seen from Washington. This is not a partisan speech. I’m not here to bash or criticize anyone, including the president. I just do want to make it clear that some of these executive orders will impact the rights of Minnesotans, and I want you to know what’s going on, and I want you to know what we’re doing about it.
And I want to be very clear, I am more than happy to join with anybody of any political persuasion to protect the rights of Americans. This is not about party. This is about these specific actions that I think are not good for Minnesota, and so I have gone to court on several occasions to stop them.
They are, in fact, causing chaos and confusion across the country. I’ve been to many town halls, and I’ve heard Minnesotans express concerns on a wide range of things, including on how this is going to affect people with disabilities. But my office has received literally thousands of calls from concerned Minnesotans.
We’ve gotten more calls on this issue than at any time since George Floyd was killed. We got a bunch of calls then, like a spike, and now we got another spike. And so I want to talk a little bit about this matter.
So the funding freeze. The funding freeze, which you all know about, I might refer to it as impoundment, but what I mean is when Congress, no matter who’s in the majority, when they pass laws, that appropriation, they pass laws to spend money. That money is meant to go where it is intended and written to go. And it is not the prerogative of the president after certainly– not after signing the bill into law to simply reverse these things, and so we found ourselves in court.
So one of the first actions that was taken in this administration was to freeze payments on federal grants and other government programs. These are essential funds that states like ours rely on for health education, law enforcement, disaster, and other essentials. This freeze hit people with disabilities, particularly hard. That first morning, Medicaid portals in all 50 states stopped working. I don’t know, is anybody aware of this? Yeah, I see many nodding heads. And the fallout just kept coming.
Disability organizations and programs face uncertainty about their federal funding and some and to lay off staff. They had to close entirely. Minnesota schools with legal mandate to provide special education services were scrambling to figure out how to pay for these services without any federal money.
And so here’s the thing. Minnesotans already paid for these programs, Congress already allocated these funds. These are our tax dollars, and the president is not authorized to simply void these decisions. And it doesn’t matter what party the president is from, the president can’t do that. And we don’t live under a king or a monarch. We live in a three-pronged system of government with a legislature, which is co-equal in power to the president, and a judiciary, which is co-equal in power to the president and the legislature.
And so we sued. And along with 21 other attorneys general, we took the administration to court to stop the illegal action. In February, the federal court ordered the administration to release the funds. But even though some funds started flowing, others, there was a lot of foot dragging, and I was getting calls from various agencies saying, they’re still not opening the portal.
I need you to let me know if you encounter this because I will go right back to court and sue them again and let the court know that they’re in– that they have– that the administration is not abiding by the order. But I can never know as much as you know– thank you so much– who are fighting on the front line on these issues? So can I ask you all to let me know if you see money getting frozen that’s supposed to be unfrozen?
AUDIENCE: Absolutely.
KEITH ELLISON: OK, great. I like that. And so we went back on March 6, just the other day and the court issued a preliminary injunction. Now, some of y’all may not know what a preliminary injunction is. Some of Y’all do know what it is. Should I explain it?
So look, in a regular lawsuit, and I’ve been a lawyer for 35 years in a regular lawsuit, one side, the plaintiff sues the defendant and the court says, OK, you guys, here’s a scheduling order. You have to trade information. You got to do that by a certain amount of time. Then we’re going to bring motions to dismiss where they’re going to do that, and then we’re going to have a trial, then there’s that. And that’s how trials generally go. Now, there are some situations where what the defendant did to hurt the plaintiff– you follow me? Everybody following me?
AUDIENCE: I follow you.
KEITH ELLISON: Good. Well, what the defendant did to hurt the plaintiff is an emergency. And in that situation, the plaintiff can ask the court to immediately stop the actions of the defendant. And in that situation, the first thing that you ask for is something called a TRO. Everybody say TRO.
AUDIENCE: TRO.
KEITH ELLISON: And TRO stands for Temporary Restraining Order. Temporary Restraining Order. Now, that’s Temporary.
AUDIENCE: Restraining Order.
KEITH ELLISON: Temporary Restraining Order. And to be fair, that’s only in place for a few weeks. Then you got to come back and the court has a bigger, fuller hearing to get more evidence in. And then what is– then the court can either rescind the TRO or can give a preliminary injunction. If the court feels that the plaintiff is right, that there is immediate, irreparable harm that could happen, they can issue that preliminary injunction.
So when the court issued a preliminary injunction, that’s a big deal. That’s a big deal. So I just wanted you all to know we got that preliminary injunction in that funding freeze case. So the money should be flowing. If it ain’t, I need you guys to give me a call. And you said you would, so thank you very much. All right.
[APPLAUSE]
Now, cuts to research. Cuts to research. Now, look, we believe in scientific inquiry, trying to learn new things, to figure out how to help more people. One of my loved ones has multiple sclerosis, and we are always trying to figure out what’s the latest to see what good can happen.
Many of you may be doing the same thing. You follow along with different research things that can help therapy. It can help cures. And so when the administration, their next big cut was to cancel direct reimbursement at every research institution in the country. That happened.
AUDIENCE: No more cuts and no more cuts [INAUDIBLE].
KEITH ELLISON: Right. So the administration, these reimbursements are to help to pay for essential life-saving, life-changing research. Without these funds, our country is less able to fight chronic illness, less able to help Americans be healthy, less able to support the disability community. These cuts in some cases stop clinical trials that were already in progress, leaving patients abandoned and confused.
These cuts were abrupt, meaning they happened suddenly. They were arbitrary. They weren’t like, OK, we’re not going to do this one because we don’t think that’s good, but we’re going to do that one. They’re like, we ain’t doing none of these. They just cut. And they were dangerous and they were illegal.
So we went to court. We sued under something called the Administrative Procedures Act. With a bunch of other AGs, we sued. We stopped it. And just over a week ago, a federal judge granted another preliminary injunction. And now we all know what a preliminary injunction is, right? And so we got another one of those. And the fact that we got the preliminary injunction is evidence that this judge deems this is a very serious emergency and illegal and cannot be allowed to stand.
Then there were the mass firings. Now, we’re on our third thing I’m talking around. So the mass firings, so Trump attacks are not just about funding. He’s coming directly for people’s jobs. And I just want to say the money is one thing, but the person who’s actually giving you assistance and care and doing the job is really important.
The administration fired tens of thousands of federal workers. These layoffs hit disability communities especially hard. Many disabled workers make their way into the federal workforce through schedule A, which gives agencies special leeway to directly hire people with disabilities. Who’s familiar with Schedule A?
Schedule A is an important program, and you should look into it if you haven’t heard of it. It helps people with disabilities get work. Since Schedule A employees start new roles with a two-year probation period instead of a one year, many disabled workers were caught up in these mass firings in their probationary periods. And many of them had in their discharge papers that they didn’t do a good job. But that wasn’t true. That wasn’t true. So we sued them.
We went to court. I believe in Schedule A. I believe it levels the playing field to give people with disabilities a fair shot at a career. And look, just because you may not be able to walk very well doesn’t mean you can’t do a computer. It doesn’t mean you can’t do the phones. It doesn’t mean you can’t manage and organize a department. Just because you don’t see well doesn’t mean that there’s a lot of other things you can do. And so Schedule A is trying to emphasize people’s abilities, not their disabilities.
One of the reasons why disability discrimination is a prejudice is it’s not really asking the question, what can you do? It’s making an assumption that because you can’t do one thing, that you can’t do anything, and that’s wrong. We got to stand against that.
[APPLAUSE]
That’s why it is a prejudice. It is unfair. And so we went to court and we used the law to move forward. And so we are taking them to court and we are fighting on this, and we’re asking the court to reinstate every unlawfully fired employee. And I think as of tonight, the court of last night, the court did grant our motion to reinstate a lot of federal workers.
Now, on the issue of diversity, equity and inclusion– I see I got five minutes left to go– friends, there is nothing illegal about diversity, equity, and inclusion. Nothing nothing, nothing.
[APPLAUSE]
It is against the law, under the 1964 Civil Rights Act, to tell somebody that they cannot have a promotion, they cannot have a job, they cannot have opportunity because of their race, because of their disability, because of their sex, because of their national origin. That’s discrimination. Jim Crow. That’s discrimination.
Having a program that says, we’re going to create a welcoming, inclusive workplace in which no one will be discriminated, but everybody will be encouraged to reach their full potential, is not discrimination. And it is wrong to say that it is. And I’m telling you that I am absolutely opposed to that wrong interpretation.
And so let me just walk through it for a second. What’s the opposite– I need audience participation. What’s the opposite of diversity? Homogeneity. Just one group of people gets to participate. If you don’t like diversity, then you’re saying no, not diversity, just one. Which one? And if you don’t like equity, then are you for inequity? If you don’t like inclusion, what are you for?
AUDIENCE: Exclusion.
KEITH ELLISON: Exclusion. So I’m for diversity, equity, inclusion. And I suppose those guys over there are for singularity, homogeneity, inequity, and exclusion. And the problem is some of our leaders in our society don’t have the guts to stand up and say that the administration is wrong about this, and they obey in advance. And I don’t want us to obey in advance. So that’s why he got sued on this one, too. And there is an injunction against them.
And so we’re fighting that, and we’re also putting out guidance on DEI. Please don’t quit. Don’t let anybody tell you the lie that somehow white males are not a part of DEI. They are. Anybody with a disability. Anybody who lives in a rural community. Anybody who’s a veteran. Anybody who has a story to tell and has a barrier to their full participation is a part of DEI. And so don’t let anybody bully you out of believing that.
AUDIENCE: Don’t let anyone tell you that you can’t vote either.
KEITH ELLISON: That’s right. You can vote for sure and you need to vote. So let me just tell you this. My office is prepared to stand up with you, to stand up for our country, to stand up for a multicultural, multiracial, multiability democracy where everybody gets to be a part of it. We’re not in favor of a country where opportunity is limited based on what sex you are, what race you are, what ability level you may or may not have. We believe in an inclusive society and friends, we got to fight for it.
And so I just want to say that I’m very proud to be here with you. I’m so proud that you and we just had a little discussion about how we’re going to work together to make sure that people with disabilities have rights, are included, and can reach the full measure of their ability and happiness. And so with that, I’m going to thank you for listening to me and see you soon. Bye-bye.
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QUINN NYSTROM: All right. always wonderful to hear from the attorney general. And I loved how he said– how it emphasizes abilities and not disabilities. I liked how he framed that. And I know when I was meeting with him a month or so ago, we were doing a press conference, and he invited us into his office ahead of time.
And he was saying one of the reasons why he decided to not run again for Congress, but run for the attorney general of the state, is because he was meeting people from around the state who were having different issues, one of those being Nicole Smith-Holt with her son not having access to insulin, but other advocates who had approached him. And he realized that he could be very– I’m trying to remember this, Keith.
But you had said meeting Nicole Smith-Holt and meeting others, you felt very inspired to run to be the attorney general because he wanted to be the people’s attorney, and he wanted to be able to be boots on the ground in this state, and make sure that laws not only are being enacted, but implemented. So we’re so grateful for him and for his leadership in this state.
Thank you, everybody. I didn’t do any filler because I was told that would not be helpful. That would make it a longer pause if I was talking as they were trying to get that. It’s very important for the Minnesota Council on Disability that every event is fully accessible to every single person in Minnesota. That is part of their mission and their values. And so they are looking at every angle to make sure that anybody who wants to participate can and will and have full access to all the information that is being said and up on video here today.
All right. Now to our next segment. So speaking of powerful advocates, this next section centers around the Damon Leivestad– Did I get it right?– Direct Care Sustainability Act. Damon passed away in October of 2024 during his long fight to address the critical personal care shortage. He fought tirelessly to change the system of personal care in the State of Minnesota. We are here to honor him today. I know that his parents and his best friend are also joining us.
VOICEOVER: And now Minnesota Council on Disability honors the life and advocacy of Damon Leivestad.
NARRATOR: MCD honors Damon Leivestad, who passed away in 2024. He was 51. At Damon’s celebration of life, his brother Derek offered this comforting quote, “spinal muscular atrophy can take away all of my physical abilities. It cannot touch my mind. It cannot touch my heart, and it cannot touch my soul.”
Damon’s soul, his essence, that which activated his amazing smile and his intellect lives on. His strength of commitment, which he poured into solving the home care worker crisis not only for himself, but for everyone that needs home care to survive, is why we honor Damon today and every day.
The time, energy, and difficulty of finding workers leaves people with disabilities feeling very vulnerable, burdensome, and at times, without hope. Engineers solve problems. An engineer with a disability inspires hope. In his own words from the 2023 legislative forum.
DAMON: I’m a 49-year-old mechanical engineer from Plymouth, where I live with my parents, David and Diana. I was born with a neurological disorder called spinal muscular atrophy, and have been in a wheelchair since I was 10 years old. I’ve been using PCA home care services since 1992.
The shortage of home care workers is growing at a staggering rate, which has had a tremendous impact on those of us who rely on home care services. The time, energy, and difficulty of finding workers leaves people with disabilities feeling very vulnerable, burdensome, and at times, without hope. It’s easy to see why they disappeared. Many are in similar situations.
As a result, I have become increasingly active in advocating for changes in the home care services that I feel are needed to address the home care crisis. Together, I hope we can find a solution to make home care work a desirable career opportunity for sustainable wages and benefits to attract quality, reliable co-workers. Thank you.
NARRATOR: For years, Damon told lawmakers, decision makers, the press, anyone who would listen, we have to act. We have to solve the home care crisis. My life and the lives of others depend on it. Damon stayed at it, receiving an Exceptional Advocate Award from the Minnesota Council on Disability, awarded for being a champion for people with disabilities and caregivers in Minnesota, creating several bills to combat the home care crisis in Minnesota.
In November 2022, Damon, interviewed by WCCO News, told viewers he was pretty frustrated with lawmakers not understanding how difficult it can be to work and stay approved to get needed services to sustain life.
DAMON: I just don’t think they really understand how difficult it is to work when you’re disabled. In order to be on government assistance, you have to be very asset-poor.
NARRATOR: In August of 2023, Damon and others told the Minnesota Reformer that home care workers are amongst the highest in demand in health, but are the lowest paid. The inequity of that reality affecting his ability to work. In 2024, Damon addressed the Commissioner of Human Services, offering solutions to the home care crisis,
In June of 2024, Access Press recognizes Damon’s legislative work, writing, “Progress was made on home care worker issues championed by advocate Damon Leivestad. A big win here is that direct care staff can now provide services when a client is hospitalized.”
The truth is, some of us will die before we see that which we’ve been fighting for come to pass. Such is the case for Damon Leivestad, a brilliant, kind, smart, loved person who contributed all he had, who lived and died with spinal muscular atrophy. A person deeply thankful for those who provided the home care he needed to live. A person who never stopped fighting to achieve what he felt is a fundamental human right. The support he and others need to contribute meaningfully to the people he loved, to his family, friends and his community.
JOHN HOFFMAN: Hi, I’m Senator John Hoffman, I’m chair of Human Services. And Damon, this is actually about you and for you. I’ll never forget the first time I met you. There was an interchange of emails, and I went out to Plymouth to a coffee shop. And here you came in with your staff, and we got coffee. And the minute you opened your mouth, I realized this guy’s an engineer. And sure enough, you are an engineer. And that’s what I found out.
But the breath that you had and the knowledge of human services wasn’t just on a, how are you doing? Good to see you. You’re looking good. Family’s OK. We care about those people. But rather you got into the intricacies of how systems intertwine with one another and how it works, not from the top level, but on the level that people are getting the services. I’ll never forget that.
Immediately when you opened your mouth, you started talking about overnight staff, and the staff being available or not being available, depending upon cost factors, depending upon why aren’t we doing it this way or why aren’t we doing it that way? And I sat there and I listened. I didn’t do all the talking. That’s the first time in the history of me as a Senator that I actually sat and listened, put that one into the books.
Second thing is, I’ll never forget that my staff, my committee administrator, who was sitting there having a discussion about some of the bills that you had sent, these were early on bills and the Bills that you had sent and how in depth they were. And he was trying to figure out, and he was looking at this piece of paper and he paused for a second. And I’ll never forget this moment. His eyes got really wide, and he looked at David and he said, I now understand what Damon’s trying to do.
And because of that, what Damon was trying to do, we decided to put together all those things that you are trying to do and tried to do, and we created your act. And there’s every bit of work that you had done and work that you wanted to do and work that we needed to do, we put into this act, and we’re going to get this done. We have to keep working on it because that’s what you would do. Keep working.
Even when you are in bed laying there. During the negotiations, I understand you were on the phone putting your input into what negotiations should look like. That’s commitment. So I’m glad I got to meet the engineer, and I’m glad I got to have you part of my life because not only the work that you do and changed my life, but it changes a lot of other people’s lives. So thank you, Damon.
NARRATOR: In 2025, Senators Hoffman, Maye Quade, Abeler, and Utke introduced a bill, The Damon Leivestad Direct Care Sustainability Act, in his honor, again bringing forth critical legislation addressing all that Damon fought for, to do something about the home care shortage crisis.
VOICEOVER: A conversation on the Damon Leivestad Direct Care Sustainability Act, moderated by David Fenley, MCD ADA director.
DAVID FENLEY: You will only have to see me one more time after this, I promise. That was gut-wrenching, but this is real. This is about life and death. AG Ellison set up this conversation very nicely, talking about what’s going on at the national level.
We have two representatives here. I will let them introduce themselves. They’re going to talk about, I think, at least three, possibly four bills, one of which that was just dropped, I think yesterday or today, that will attempt to fill in some of the gaps that we’re seeing happen to keep people alive and live independently with dignity.
So, Representatives Curran and Hicks, will you please join me up here? I’m not going to do much more talking because you two have been in this space for such a long time, not just at the legislature, but also in your personal and professional lives. So please introduce yourselves and help us understand what’s going on at the state level.
KIM HICKS: Hi, everybody. I am Kim Hicks. I am from Rochester. I represent northwest and northeast Rochester. I am a white lady who’s really pasty because we have not hit real spring in Minnesota yet. I have blonde hair. I wear big blue glasses and I’m wearing a black flower shirt. I also identify as a person with a disability. So I have dyslexia and ADHD and some chronic medical conditions as well. And I grew up knowing that I have a disability.
And I share that because for folks in the disability community, I think many of us know that that’s a different experience if you’ve been othered since you were little. So I grew up knowing I had a disability. I’ve used accommodations most of my adult life, and I also have children with disabilities.
And I actually got my start in the disability world working at a center for independent living. I was a program director doing a ton of advocacy work, and my passion for disability, civil rights and disability advocacy is why I’m here. In 2018, 2019, I became increasingly frustrated with the lack of lived experience in the legislature for people with disabilities, and so I decided to run for office in 2020. I did not win. I lost and got cancer, so it was sort of a weird time.
And then in 2020, I did win, and I won again in ’24. And I have spent my entire legislative time really focused on disability issues as sort of my– sometimes I will be told that I’m a one-trick pony. It’s not an untrue statement. And so a lot of the work that I did interacted a lot with Damon. He would email me pretty frequently, and had lots of feedback. And I’m really proud of a lot of the work that we have accomplished, but we’re not done.
So for those of you that don’t know, I was the chief author on the ableism bill for education, the first in the nation. I was also the chief author on the MA-EPD bill that relieved premiums and was supposed to relieve assets– relieved assets, and was supposed to relieve both, but here we are.
I was also the chief author on the pay increase for PCAs in the last biennium. That was the largest that has ever happened. I was also a direct support worker for 19 years, and so I do really understand how we do those things. But I also really understand that at the moment, the world feels like it is trying to delete us by cutting the things that are necessary for us to stay on the planet.
And so I want to thank you all for being here and for hearing that, and I hope today I can talk about some of the things we are trying to do to support that, and some of the work that I think still needs to be done, and where I hope we can go together.
BRION CURRAN: Hi, everyone. Thank you so much for having us here today. My name is Representative Brion Curran. I use they and she pronouns. I have short brown hair. I wear clear glasses. Today I’m dressed in black, and I am also wearing a T-shirt today that supports the elimination of subminimum wage.
I too am a person who identifies as someone with disabilities. I live with PTSD and ADHD. I represent the White Bear Lake and Vadnais Heights area in the northeast metro. For 20 years before I came to the legislature in 2022, I worked in the disability services field in my community for a provider of group homes for folks with developmental disabilities.
Like Representative Hicks, I came into the legislature with disability services at the top of my list to ensure that voices were not lost in the rooms where we make very important and critical decisions. I’m really, really– I feel really lucky and honored to come in at the same time as representative Hicks. It is because representative Hicks and myself and others came into this work together that we were able to get so much done in the last two years.
And with Representative Hicks’ advocacy at the helm of a lot of this and the support of others and her ability to get our team on board, that’s why we were able to get a lot of the work done that Damon and others had worked so hard for. I also serve on the Human Services Committee with Representative Hicks. It is my intention that as long as I’m a legislator, I will continue to serve on that committee. I think I’ll leave it at that, and we can get into maybe some bill discussion.
DAVID FENLEY: By all means, please do.
KIM HICKS: So I want to start with the bill that Senator Hoffman is carrying in the Senate that really exemplifies what Damon worked so hard for. Some of the things in there that I am still hopeful for is the MA-EPD premium component and the increase for wages and tiering in CFSS. I think those are things we can do. And if we can’t do all of them, I’d like to do parts of them. Let’s do something. Let’s try to move some of these pieces forward.
The truth of the matter is, and I know Attorney General Ellison spoke about this, the Medicaid cuts are terrifying. I don’t know if they will happen. I don’t know what they will look like, but they are terrifying because they will blow a massive hole in the state’s Medicaid budget, and that will affect all of us in profound ways.
And so I am frustrated with that process because you’re going to hear people say things like work requirements won’t affect people with disabilities. They’re going to leave that out. The part of the sentence that they’re not going to tell you is that they’re going to define disability by Social Security status. And anyone who’s ever gone through a Social Security process knows how long that takes.
And so work requirements for the space in between a disability that has led to the inability to work and determination is where low-income MA for adults frequently finds itself.
And if we can’t get through Social Security because they are cutting half of the staff and they are eliminating the phone line, so the only way to actually access Social Security is going to be on the internet, on a website that doesn’t meet basic CLAS Standards, and in person, in buildings that are being shut down and don’t have access to transportation for them. It is absolutely a way to attempt to minimize access to medical assistance for people with disabilities. Full stop. That’s what they’re doing. And we should acknowledge that. So I’m going to say that part out loud.
The other part that I do just want to share is we dropped a bill, and Representative Nadeau left, but he is my Republican co-author. So if he is in your district or if you know him, please send him a thank you. And Erin Maye Quade dropped the Senate Bill. And on Tuesday, we will be publicly announcing at a press conference the Minnesota Disabilities Act, which is 504 for Minnesota.
This act will enshrine section 504 like protections in the Minnesota Human Rights Act, and ensure that individuals with disabilities will be able to receive reasonable accommodations in any institution, public or private, that receives state funds.
[APPLAUSE]
And it will stand regardless of what happens on the federal level because it will be in our Human Rights Act.
[APPLAUSE]
And I think it’s the first in the country.
[APPLAUSE]
However, this is my plea for help. I need to get it out of the House Judiciary Committee. So if anyone knows or lives in Representative Peggy Scott, Representative Walter Hudson, Representative Matt Bliss, Representative Bidal Duran, Representative Eliot Engel, Representative Marion Rarick, Representative Terry Stier or– and I have all of our Democratic colleagues support and they have committed to voting it out of committee. So those are the Republican folks on that committee that I need their support.
If any of those folks live in your district or any of them, or you have relationships with any of them, please send an email because I believe that having section 504 in our state laws does a couple of things. One, it protects us from any possible federal changes. But the other thing that it does is it says we matter.
It says our human rights matter. It says accommodations are not something to be ashamed of or something to be considered a burden. They are part of creating a community where everyone counts. And so if you agree with me, I would love for you to send emails voicing your support for that.
[APPLAUSE]
Brion, did you want to share any legislation?
BRION CURRAN: Yeah, I can. Thank you so much, Representative Hicks, for that. I think this is a clear example of as things happen on the federal level, the burden of the state government to be proactive in ensuring that cuts to programs, elimination of programs, that we are protecting Minnesotans. And in this space, Minnesotans with disabilities, we are doing every single thing that we can to limit the effects of any federal government moves on the people here in the state of Minnesota.
And while it’s really encouraging and amazing that we have a legislature here in Minnesota who is paying attention and is working on enshrining protections for our community, I hope that once again, Minnesota will be a beacon of hope for other states, and that they will see what folks like Representative Hicks and I are doing at the state level because we need this to be happening across all 50 states.
And so it is my hope that as we introduce legislation like this, that other states will do the same and that it will hopefully start sending a message to the federal government that things like this are not welcome in our states and that they’re damaging and that we’re taking it seriously, and that we’re proactively looking for solutions to keep our residents safe and healthy.
A few of the other things that we’re working on in this space, we honor Damon and others by doing every single thing that we can to uplift the voices of people in the disability community and those that commit their lives and careers to providing services for those of us in that community. We know that through barriers in the system, every single one of us, regardless of our disability status, we all incur barriers to the systems currently in place already.
And then we have folks in the disability community, and again, folks like Damon who had added layers of difficulty that make it difficult to get to the capital to provide testimony, to access legislators, to access experts. And through all of that, the work that Damon was able to get done is incredible. There are people living without any sort of physical restrictions or restrictions of their disability that haven’t done and/or haven’t been able to get the amount of work done that Damon did in his lifetime. And that is, again, incredible.
And so the more that we can do to eliminate barriers so that more people can have access to do this great work, that’s the kind of things that we are looking at doing in the state of Minnesota. One of the related bills to the work that Damon was working on, he had mentioned in the video that we saw that we really need to make disability services a desirable career path and make sure that we have, that we’re offering livable wages for people.
And one of the ways that we do that is not just by increasing direct support and PCA wages, which clearly is something that needs to continue. But we need to make sure that there are opportunities for people to grow and thrive in this field. And one of the bills that I’m carrying is working to address the wage disparities for somebody who does really well in this career and takes an opportunity to move up and become a supervisor, only to find out that the folks that they’re supervising might be making higher wages than they are.
And then in my time in 20 years in the provider side, the last five years I spent in human resources, and I worked with a lot of folks who were so amazing at providing excellent service to our community of people with disabilities. And we were so glad to give them a promotion that they earned and deserved, only to have difficult conversations of the reality that their family needed those extra dollars that they could get by demoting themselves.
And so then we end up in this cycle where we have amazing, dedicated people who want to do this work and move up and move through and lead from their heart. And we are– our systems the way they are keeping people from moving up in that process. And when we have people who move through and move up, we pave the way for others to join us in this work and see ahead what their career could be like and strive to get there.
And if we don’t make changes that allow people to earn those promotions and lead from the heart and work further up in this career to do such great work, we’re further limiting the workforce. And so one of the bills, again, like I said, that we’re working on is to address that one disparity. But other things that we need to continue to do, especially in the face of federal and state impending budget cuts, is we need to protect the wins that we have already had.
And I know that this community had great concerns that I know Representative Hicks and I both share. When the governor’s budget proposal came and we saw the anticipated cuts to Human Services, not only can’t we– we can’t afford those cuts, not just from a budget perspective. People living with disabilities cannot afford to lose good care that they’re receiving and to lose access, and that’s what budget cuts would do.
So as we continue this work, we are going to do everything we can to defend the wins that we’ve already made, all the gains that we’ve already made, but we’re still coming from behind. And so we need to make sure that we’re doing everything we can to protect that work.
A few other things before I kick it back to Representative Hicks, I know we have a few minutes left. I’ll be carrying a bill this session to on the MnCHOICES assessments. I know that’s a huge barrier for folks, and it lends to an extended waiting period to access services and the frequency of MnCHOICES assessments and the length that they are reliving trauma in many cases that people should not have to do to go through.
We’re working on making sure that MnCHOICES assessments are not getting in the way of people who need these services. So if we can reduce the frequency of these assessments, of course, we’ll stay within federal law, will we do that? But I think that’s going to be a key in making sure that we get folks the services they need as soon as we can.
We’re also working on adaptive technology, assistive technology, remote services, all the things that– technology that continues to change. We want to make sure that people can still live as independently as possible. And these are the kind of things that help not only with independence, but it also helps with our workforce shortage. So we need to continue the work there as well. And we are continuing that work.
And, of course, providers know that background studies can still cause some issues in the workforce area, and so we’re still working to address issues where background study, the length of time it takes for employees to clear background studies or the number of times they have to clear the same exact background study within even the same month as they’re applying for jobs, we’re trying to figure out how we can remove those barriers.
So, again, lots, lots, and lots of work that we are continuing to do, that we are honored to do this for you, and I hope that you stay with us in solidarity over the next few years as we face some difficult challenges together.
[APPLAUSE]
KIM HICKS: I do want to just talk a little bit about civil rights for just a moment. And that’s a little bit broader of a topic, and there aren’t specific bill numbers and those things. But I want to remind everybody that we’re really new to having rights. Our existence in society has been real recent, like real, real recent, which means we need to actively work to defend the rights we have and advance the process we currently have.
In the state of Minnesota, I’m working on a draft right now, but in the state of Minnesota, voc rehab is facing a $19 million shortfall that is going to lay off VR counselors. Laying off VR counselors means we’re going to struggle to find work. I’m in the process of trying to drop a short stopgap measure to try to solve some of those issues. But that’s a civil rights issue. Access to employment is a civil rights issue.
And we are going to have to continue to have those conversations. And I would encourage us to stand together in those conversations, because the picture that’s being painted of our community, in my opinion, is one that we are a drain on the system. We have been on the federal level, we have heard some awful statements about what some folks believe people with disabilities are to the system.
But even locally and on the state level, we have heard us be blamed for any financial trouble. It’s long-term care. It’s special ed. It’s all these. This is the reason. The people with disabilities, that’s why we have the deficits. That’s why we’re concerned. And I think as a group, we need to stand up and say the fact that we require support does not make us less than and does not make it our fault that there are needs.
And our budgets speak to our values, and our budgets should value those with needs first. And we should pay for those needs by making sure that the ultra-wealthy and those– the ultra-wealthy corporations pay their fair share to make sure that everyone gets what they need to continue to live in community, and that is a full-stop situation.
[APPLAUSE]
Because the truth of the matter is, if we can’t be in community, if we are forced to live without services, if we are forced to go without PCA support, if we are forced to rely on natural supports that not everybody has, and we are forced to not be able to access transportation, as was discussed earlier, if we are forced to not be able to ask employment supports as is what is coming with the voc rehab cuts, if we’re forced to not be able to access health care because our health care is expensive, forced to not be able to afford our lives because of our needs of service, then we’re just institutionalized in a different way.
And I think we have to start saying that stuff out loud, even though it’s hard to say. It’s true. If our kids with disabilities can’t go to school and get reasonable accommodations and access to special education support, then what happens is they get put in a school, but they’re in a separate classroom because there aren’t any paras. That’s not integration, that’s segregation. And we need to call it what it is. And we have to stop tap dancing around it and say it out loud. The lack of funding for the services and supports that we need leads to segregation. And we should never sit idly by and allow that to happen again.
[APPLAUSE]
DAVID FENLEY: I don’t think I have anything to add to that, but thank you for continuing– sorry, I’ve been getting choked up here– continuing what is Minnesota’s long legacy of supporting disability rights. Thank you both very much.
[APPLAUSE]
Passing it back to Quinn now. Quinn, come on up.
QUINN NYSTROM: OK. I am the only thing standing in your way of a lunch break, so I will make this super quick. I hope you’ve all enjoyed the first part of the day today. We’ve had passionate advocates, elected officials, I think just amazing tributes to Damon and showing how people, regardless of the cards that they’ve been handed in life, when we advocate, I love this saying, we don’t celebrate, we advocate, and that, I think, is so true to the work that we’re doing.
So we are going to– yes, and so as I had said earlier, we want to make sure that people are writing down any comments or questions that they have that you can put in at the survey at the end. That’s going to be really important for staff, but also for electeds, different people who are working on various bills, maybe laws that have been enacted.
So we are going to break, and I want to say thank you to Representative Hicks, because I wrote myself a post-it as you were speaking, that I am in one of those representatives’ districts. So I wrote myself a post-it to call his office today so that I can have a sit-down meeting with Representative Hudson. And I’ve been on his radio show before, so I’m sure he’ll be thrilled to see me again.
Let’s all move to lunch. We have until–the time that I had was about 12:45. We will reconvene in here, back online for everyone who’s watching virtually.
So, we can take a break. For people who are here, I believe Linda is going to take it away. And for everybody online, have a good break.