Proposed trims to Minnesota’s disability waiver program concern people reliant on services
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For the Perry family, Minnesota’s disability waiver program is a lifeline.
“The waiver system has been amazing,” said David Perry.
Perry’s 18-year-old son, Nico, is autistic and has Down syndrome. Through the waiver system, Nico has an aide that gives him support.
“She’s just extraordinary. She works. She picks him up, she takes him to therapy, she works with him on her own. But also they get to play. They get to go to the pool, into the park, and to go shopping, to movies, and just do the things that teenagers get to do,” Perry said.
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The disability waivers system — linked to the state’s Medicaid program — allows people to access care such as an aide, transportation or other support. That way people can live more independently and not in an institutional setting. Around 70,000 people were on disability waivers in 2023.
Fast-growing costs have come under the microscope and are a potential target for budget cutters.
The Perry family moved to Minneapolis from Illinois in 2017, in part because they felt Nico would get better support and independence through the state.
“The bottom line is that my son should be able to do everything that any other teenager can do,” Perry said. “He needs support, and Minnesota has been providing it, and we’re really grateful.”
In his two-year budget released earlier this month, DFL Gov. Tim Walz proposed slimming costs. Among those costs, Walz wants to limit growth in disability waiver costs to 2 percent per year.
“No one’s going to be cut. We are going to remain the most generous state,” Walz said. “There is going to be no waiting list and nobody is going to be kicked off. But we’re saying is we shouldn’t have automatic six percent each year for inflation.”
Minnesota has some of the most generous disability waivers in the country. The Minnesota Department of Human Services says the average payments for those on disability waivers was $6,621 per month in 2024. That’s up more than $2,000 a decade earlier.
State estimates are that, without any change, expenses from disability waivers would increase by more than a half a billion dollars in the coming two years. Total expenditures for disability waiver programs are on course to rise from around $5 billion to $8.5 billion between 2024 and 2029.
“If we don’t do it, that one area will account for an eighth of the entire state budget by 2029. By 2035 it will be half the state budget. We can’t do all these other things we want to do if we don't address this,” Walz said in a recent interview with MPR News.
Trevor Turner is public policy director for the Minnesota Council on Disability. He expected the budget to focus on cutting program costs. But he doesn’t see how changes can be made without affecting people.
“When you don’t have the automatic inflationary adjustment, then you’re basically just balancing the budget on the backs of people with disabilities,” he said.
Turner says the state should focus on making sure providers aren’t making large profits from the Medicaid program. He also thinks there is plenty of room to cut costs on the state’s repetitive, unproductive systems for making sure people qualify for the waivers.
“I personally would like to see more focus on eliminating the bureaucratic red tape that costs a lot of money and puts a lot of work on people with disabilities to maintain their services with constant renewals every year,” he said.
Many organizations that provide care are concerned that the curbed spending will give them less of an ability to give people competitive wages in an already short-staffed job market.
“Right now, that competitive work force factor is still funded about 10 percent below where we should be,” said Tom Gillespie, the president and CEO of Living Well Disability Services and a board member of ARRM, an organization of service providers.
He said even if today’s rates aren’t affected, the longer-term model won’t be sustainable.
“What they are doing is they're cutting and they're suffocating the future of our services by taking away these investments," Gillespie said.
While the Walz budget proposal was welcomed by some budget hawks, others are raising concerns.
Sen. Jim Abeler, R-Anoka, is a long-time advocate for the disabled at the Capitol.
“These are people with very severe needs in many cases, and some require care 24 hours a day, which they cannot get,” he said. “And the changes like the governor suggests are only going to make it more difficult to serve these individuals. So my advice is: Find somewhere else to find the money.”
Jillian Nelson, the policy director at the Autism Society of Minnesota, said she plans to advocate against the cost cutting measure this session.
“This isn’t just my community that I’m paid to represent and that I’m paid to support. This is personal,” said Nelson, who has autism and several other disabilities. “This is my own supports and my own benefits and the things that allow me to get up every morning, have the support I need to make it to this office, to make it to the Capitol and to be able to do the work I do to support my community.”
The Legislature will spend the next few months trying to strike that balance — achieving needed cost savings without setting the most vulnerable back. Disability advocates say they’ll be watching.
David Perry is nervous about how things might change for Nico.
“It’s a terrible precedent to address our budget deficit by beginning to cut away at the most marginalized, or some of the most marginalized in our society,” he said.