Don’t balance the state budget by targeting those who are most vulnerable

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In 2017, we packed up our lives in Chicago and moved back to Minnesota. It wasn’t an easy decision. I gave up a full professorship at a local university and my wife left a food science position at a major international corporation. But I married a St. Paul girl and we always knew she’d want to go home. Moreover, our son is autistic and has Down syndrome, and we wanted him to become an adult in Minnesota, a state we believed would do better at supporting his independence and autonomy than Illinois could. As I told MPR at the time, we knew Minnesota wasn’t perfect, but we thought the fight would be much more winnable here.

And it has been, so far. In the 2023 legislative session, disability advocates celebrated “life-changing” reforms as the DFL-run Legislature and Gov. Tim Walz collaborated to eliminate fees for families accessing services, while increasing pay for those providing services for disabled kids and adults alike. These changes offered clear, measurable improvements in our life and justified all the upheaval we faced in moving back here. Which makes it all the more painful that last week Walz proposed balancing the budget by undoing so much of that progress.

Walz is focused on “Medicaid home and community-based service (HCBS) waivers,” programs designed to provide alternatives to “placing Medicaid-eligible people in hospitals, nursing facilities or intermediate care facilities.” These programs, in other words, allow people like my son — as a minor or eventually as an adult — to live at home or independently rather than being institutionalized. This is important because large-scale institutionalization is a form of incarceration. Since the abandonment of mass institutionalization around the 1960s, life expectancy for people with Down syndrome has rocketed up from an average of 12 to 60, at least in part due to the better living conditions and care (causality is hard to prove here). But it also saves the state money. A national Kaiser Family Foundation study found, for example, that HCBS users cost $36,275 compared to institutionalization’s $47,279.

Walz’s proposals include capping annual cost-of-living increases for the waiver program to 2%, regardless of inflation, threatening to undermine the very changes that he helped enact in 2023. For disabled adults, direct service professionals make it possible for many to live in their own homes, work, move about the community, live full lives. It means parents can choose to stay home and care for their disabled kids, or that we can work and afford to hire aides to provide the support they need. But only if budgets keep up with costs. Walz’s proposals, if enacted, means that it will be harder to hire aides, or we will have to cut back on hours of support, and just overall, being told that as life gets more expensive, our resources won’t — by design — keep up.

There are, of course, inefficiencies in the system. We were denied support initially because an assessor wrote the word “mild” instead of “severe,” forcing us to spend a year documenting how disabled our son really is — to tell people about his “worst day,” a dehumanizing experience and one I deeply resent being forced into. Now with a waiver, we have to re-prove Nico’s disabilities every year, filling out piles of paperwork (all actual paper forms — there’s no online “refill information from last year” option) and go through multiple visits in our home. These cost time and money. Nico has Down syndrome. It’s in every cell in his body. It’s not going away. We are given an annual budget, but have to use some of our budget to hire a third party to write our budget plan to send it back to the state (actually a private contractor) who approves it and then it goes to yet another private company that provides fiscal administration, but gets to charge for the service. I’ve never understood why the state couldn’t just do this all internally, but recognize that there are no short-term savings to be gained here. The system is messy and streamlining it is a long-term project that absolutely should take priority.

But mostly, how dare the governor try to balance our budget by cutting away the supports that make life better for the most vulnerable? Will DFLers in the Legislature agree? I noticed that the GOP quickly made a statement against other Walz proposals, like his expansion of the sales tax to include “wealth services,” but has said nothing yet about disability services. The change from a 6% cost-of-living increase to just 2% will make life more difficult, but it’s not a disaster. The message, though, is that to balance the budget, it’s OK to target the vulnerable. If this goes through, I worry it won’t be the last time.

When Walz’s statement came out, it was noisy in my house. Nico was in the family room with his aide and a music therapist. He’s got quite the voice and can sing loudly, but we’re working on breath and pitch control, rhythm, stopping and starting, and a whole host of other skills that are — in collaboration with lots of work from his whole team of teachers, therapist, friends and family — transforming his ability to communicate. He’s “functionally nonverbal,” but he understands so much, and in just the past few years he’s been developing new communication skills that are transforming both his life and ours. He answers questions more reliably. Sometimes he’ll say what he wants instead of just miming it and hoping we figure it out. When I heard his voice soaring as the therapist covered Ed Sheeran’s “Thinking Out Loud” and they both sang, “We found love right where we are,” I teared up as I heard my son sing the final, fully articulated and mostly on pitch, word. The aide, the therapist, the world we’ve been able to create around him since we moved here, has been made possible by his Medicaid waiver.

The world of disability services always feels precarious, a ladder propped up on wobbly foundations. I need Democrats to shore up the supports, not whittle them away.

David M. Perry is the associate director for undergraduate studies in history at the University of Minnesota — Twin Cities. He’s the co-author of “Oathbreakers: The War of Brothers That Shattered an Empire and Made Medieval Europe” and the newsletter Modern Medieval.