ANNOUNCER: And now the Minnesota Council on Disability honors the life and advocacy of Damon Leivestad.
[MUSIC PLAYING]
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 LEIVESTAD: 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 homecare services since 1992.
The shortage of homecare workers is growing at a staggering rate, which has had a tremendous impact on those of us who rely on homecare services. The time, energy and difficulty of finding workers leaves people with disabilities feeling very vulnerable, burdensome, and at times, with little hope. There’s thousands of other disabled Minnesotans are in similar situations.
As a result, I have become increasingly active in advocating for changes in the homecare services that I feel are needed to address the home care crisis. Together, I hope we can find a solution to make homecare work a desirable career opportunity with sustainable wages and benefits to attract quality, reliable homecare workers. Thank you.
[MUSIC PLAYING]
NARRATOR: For years, Damon told lawmakers, decision makers, the press, anyone who would listen, “We have to act. We have to solve the homecare 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 homecare 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 LEIVESTAD: I just don’t think they really understand how difficult it is to work when you’re disabled. In order to be on medical 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 care, 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 homecare crisis. In June of 2024, Access Press recognizes Damon’s legislative work, writing, “Progress was made on homecare 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 life’s stud, 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 homecare 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 breadth 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 in 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 try 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 were 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 a 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.
[MUSIC PLAYING]
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.
[MUSIC PLAYING]