Minnesotans with disabilities say state's proposed budget cuts would 'bring us backward'

Sumukha Terakanambi's disability services waiver paid for the lift the Lakeville resident uses to get out of bed and the care that allows him to live in his family's home.

For Steve Reinardy, whose eye disorder keeps him from driving, his waiver covers the transportation he needs to get to his job or doctor's appointments.

Tim Gross has seen his son Ben, who has Down Syndrome, develop life skills using waiver-funded training that allows him to remain in his own Duluth apartment.

They are among the Minnesotans pushing back against Gov. Tim Walz's proposed measures to reduce state spending on the Medicaid waivers that support tens of thousands of people with disabilities. The governor's recent proposal, paired with fears over the Trump administration's next steps on Medicaid, has many of the state's most vulnerable residents and the people who care for them on edge.

"The uncertainty is incredible," Gross said, who fears what the future holds for his son if government officials scale back services and he's no longer around to help. "We have to count on decisions made in St. Paul and in D.C. that truly affect us immediately."

Threats to Medicaid services have prompted a flurry of local and national action. Disability advocates are meeting to discuss the governor's proposal and developing plans to push back, and service providers are sending messages urging lawmakers to oppose waiver spending cuts. Meanwhile, national advocacy groups are warily awaiting President Donald Trump's next moves as U.S. House Republicans eye Medicaid cuts.

Whether Minnesota lawmakers will support the DFL governor's proposed changes remains unclear. Senate Human Services Chair John Hoffman, DFL-Champlin, quickly decried Walz's plan, saying it threatens to undermine the state's progress on serving people with disabilities and aging residents.

"These measures do not align with the Minnesota way — a way that prioritizes compassion, equity, and support for those who need it most," Hoffman said in a statement. "Balancing the state budget is a necessary responsibility, but it cannot be done at the expense of those who have no other safety net."

Underlying Walz's proposals are a looming budget deficit in 2028 and Medicaid spending on disability services that is far higher than other states' and growing faster than anticipated.

"We are not changing that Minnesota is a generous state," Walz said when he debuted his budget, but warned that spending on those services would balloon to one-eighth of Minnesota's budget in 2029, and half of the budget by 2035. "This one has to be addressed and this budget does that. It does it responsibly, it does it morally, it does it ethically."

But several people who run disability service programs have a very different description of Walz's plan: They said he is balancing the budget "on the backs of people with disabilities."

Disappointed in spending cuts

Some in the industry also noted that Minnesota has prioritized waiver services that allow people to live more independently at home or in the community and said other states likely have more people living in larger institutions, which wouldn't be reflected in Medicaid spending data.

Terakanambi, who is 26 and a policy consultant for the Minnesota Council on Disability, which advises policymakers and the public on disability issues, said he is disappointed Walz is considering what he and others describe as cuts.

He has Duchenne muscular dystrophy and uses a wheelchair to get around the Lakeville home where he lives with his parents. His waiver has helped cover ramps and technology to make the space more accessible.

"It would compromise the quality of services people with disabilities receive," Terakanambi said of the governor's plan. "It's concerning to see that these kind of proposals would bring us backward."

Walz's biggest proposed disability service change would cap inflationary increases for waivers at 2% a year.

Kathy Ware and her son Kylen use a waiver to pay for full-time caregivers to come into their home and provide Kylen's daily needs. He has a rare genetic disorder that has left him with profound disabilities: He uses a wheelchair, needs a feeding tube for food and water and can never be left alone. He has a seizure disorder as well.

Ware fears that limiting increases to 2% a year means eventually she won't be able to pay enough to attract quality workers.

"They'll leave and they'll go do something else that's much easier, much less isolating, that doesn't involve changing a grown man's diaper," Ware said. "This is not a barista at Caribou. This is in the trenches, helping people when they need it, you know? And it's not a glorious job."

Even the governor's budget documents spell out that potential problem, stating that the inflationary cap could affect people's ability to find and keep quality direct care workers, and noting that the growing demand for care as baby boomers age may exacerbate the problem.

A couple of Walz's disability service proposals are tied to 2020 recommendations from a state commission that looked for health and human services cost savings. They aim to prevent service providers from receiving excess revenue. One would reduce the number of days providers can bill for residential services from 365 to 351 days a year; the other decreases how much money daytime service providers receive to cover client absences.

"If you are a provider, you are going to lose out," said Sue Schettle, CEO of the Association of Residential Resources in Minnesota, which advocates for home and community-based disability services.

Robin Harkonen, president of another association, Minnesota Organization for Habilitation and Rehabilitation, said some large daytime service providers would see an annual cut of around $500,000, hurting wages and staffing.

Gross worries his son Ben will be affected by a piece of Walz's budget that would halve the number of hours someone can receive individualized home support services with training, to eight hours a day. While he could add a personal care assistant to help make up the difference, Gross said they wouldn't offer the same level of support that has helped his son grow, and said finding and training new workers is difficult and expensive.

"It sounds good on paper," he said. "But in reality, if anyone has spent any time watching the care for my son, you know that it would be a backwards proposition."

Possible federal budget cuts

A spokeswoman for Walz said in a statement that his budget "will maintain Minnesota's nation-leading status in providing services to vulnerable Minnesotans, while also eliminating inefficiencies and slowing unsustainable cost growth."

"However," she added, "Minnesota cannot afford the Trump administration's threats to gut federal spending and the governor has vigorously criticized President Trump's threats to do so."

Trump said relatively little about Medicaid during his candidacy and early days in office — until last week, when he said his administration would "love and cherish Social Security, Medicare and Medicaid," according to news reports. He added that the administration will only do something to the services if they find waste or abuse, and "the people won't be affected. It will only be more effective and better."

However, congressional Republicans floated a document last month that outlined $2.3 trillion in potential Medicaid cuts.

Advocates for aging Minnesotans are also worried about what state and federal changes could mean for them.

Kari Thurlow, president and CEO of LeadingAge Minnesota, an association of more than 1,200 organizations that advocate for older Minnesotans, said the governor's plan to scale back services makes no sense.

"One in four Minnesotans will be 65 or older by 2030, and 70 percent will need some type of long-term services and supports," she said. "Coupled with what we are seeing at the federal level, we see a devastating impact for seniors in Minnesota."

She said Walz's budget cuts would slash funding for nursing homes by $200 million while also proposing mandates that amount to $250 million in additional costs.

"We are not meeting our obligations to this generation," Thurlow said.