A Legacy of Advocacy
At the 2025 MCD Legislative Forum, the disability community honored the life and legacy of Damon Leivestad, who passed away in October 2024. Damon dedicated his life to addressing the persistent shortage of personal care assistants (PCAs). Those who knew Damon described him as a “brilliant, kind, smart, and beloved individual who gave everything he had and who lived and died with Spinal Muscular Atrophy.”
Like many Minnesotans with disabilities, Damon faced significant challenges finding reliable PCA staffing. At the 2023 Legislative Forum, he highlighted the urgent issue: “The shortage of home care workers is growing at a staggering rate, significantly impacting those of us who depend on these essential services. The time, energy, and difficulty involved in finding reliable home care workers leave people with disabilities feeling incredibly vulnerable and burdened in times of uncertainty.”
Damon advocated strongly for Minnesota to “make home care work a desirable career path by offering sustainable wages and benefits to attract and retain dedicated, quality workers.” He recognized that improving financial stability for both home care workers and people with disabilities was essential to creating a more sustainable system. On WCCO News, he explained how outdated asset limits for Medical Assistance discouraged people with disabilities from pursuing rewarding careers, even as they remained reliant on critical supports. For Damon, ensuring financial security—for those who provide care and those who receive it—was critical.
The Damon Leivestad Direct Care Sustainability Act
Through his deep knowledge of human services and effective solutions for addressing the home care crisis, Damon gained widespread respect among state legislators. In his tribute, Senator John Hoffman reflected, “We gathered all the initiatives you’ve been striving for and compiled them into your act. It includes every bit of work you accomplished, the work you wanted to do, and the work we need to continue.” In February 2025, Senator Hoffman, alongside Senator Erin Maye Quade, Senator Paul Utke, and Senator Jim Abeler, introduced SF 1127, known as the Damon Leivestad Direct Care Sustainability Act. The legislation aims to:
- Provide enhanced pay rates for home care workers supporting individuals eligible for 10 or more PCA hours per day, based on total approved hours and workers’ professional experience.
- Eliminate the premium for Medical Assistance for Employed Persons with Disabilities (MA-EPD).
- Remove the asset limit for individuals age 65 and older who previously qualified for MA-EPD.
Carrying Damon’s Vision Forward
The respect legislators had for Damon was evident in other parts of the forum. Representative Kim Hicks expressed her determination to advance parts of the legislation, even if passing the full bill proves difficult. “Let’s try to move some of these pieces forward.” Representative Brion Curran reinforced the importance of creating career opportunities in the home care sector. Their goal is to ensure that dedicated supervisory staff receive the compensation they deserve.
Damon Leivestad’s advocacy and dedication continue to inspire the disability community in its ongoing efforts to build a Minnesota where every person with a disability receives the necessary support to thrive.