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, 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– 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. Yeah.
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 Venice 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’m still hopeful for is the MAEPD 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. What 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 lines, so the only way to actually access Social Security is going to be on the internet on a website that doesn’t meet basic class 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, and 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 Quaid 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.
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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.
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And it will stand regardless of what happens on the federal level, because it will be in our Human Rights Act.
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And I think it’s the first in the country. 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 Elliot Engen, Representative Marion Rarick, Representative Terry Strier, 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 you know 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.
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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’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, 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 cannot only 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 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 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.
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.
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. This is the reason. It’s 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 the ultra wealthy and 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.
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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. If we’re 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.
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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.
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