A life-changing reform for families with disabled kids

Opinion editor's note: Editorials represent the opinions of the Star Tribune Editorial Board, which operates independently from the newsroom.

•••

For the Kausel family of Apple Valley, the challenges of caring for Noah, 14, who has autism and language delays, have included paying between $10,000 and $20,000 a year in "parental fees" to access services provided by the state's medical assistance program.

Disability advocates have dubbed it a tax on families with special needs kids. Many other states don't collect these fees, but Minnesota has since 1990, when the state's budget was in the red. While the sum is determined by a sliding fee scale based on family incomes, too many families struggled to meet their obligations or, worse, don't access this care for their children.

The Kausels have made it work, but it hasn't been easy. They've put their fees on credit cards. Their cars have several hundred thousand miles on the odometer. Kelly Kausel wistfully recalls watching other families take vacations but notes that Noah has enjoyed more affordable destinations: state parks.

"We just want to help our son," Kelly Kausel said in an interview. "Instead of focusing on what we couldn't do, for us, we've focused on what we could do."

Thankfully, relief is on the way for families like the Kausels. During the 2023 legislative session, lawmakers eliminated fees for many, though not all, families with disabled children accessing services through the medical assistance program.

The change is expected to help about 10,000 families across the state. It's an under-the-radar reform that merits both praise and a spotlight. Tapping families with disabled children to help balance the state budget was misguided. Compounding that mistake was leaving the fees in place for more than three decades.

Eliminating the fees, especially during a historic budget surplus, is both compassionate and sensible. Families seeking help for disabled children deserve compassionate assistance, not staggering out-of-pocket expenses.

The move also carries a reasonable price tag. Doing away with the fees equates to about $11 million a year in foregone revenue. Because the medical assistance program is jointly funded by the state and the federal governments, the bottom line cost to the state is $5.1 million annually.

A state Department of Human Services (DHS) new release last month heralded the legislation. The change was lauded by the Arc Minnesota, a respected disability nonprofit and support organization.

In a statement, Arc Minnesota leaders said that the fees had "dramatically increased over time" and that many families paid hundreds or even thousands of dollars a month.

"Because of this significant cost, many parents were driven deep into debt — maxing out credit cards or taking a second mortgage on their homes. Others had to forgo services for their disabled children altogether, because they simply could not afford the fees," the Arc statement said. "By eliminating these fees and ensuring access to critical disability supports, the Minnesota Legislature demonstrated bipartisan commitment to creating a state where all children can thrive."

Legislative advocates included Sens. Erin Maye Quade, DFL-Apple Valley, and Jim Abeler, R-Anoka, as well as House Reps. Heather Edelson, DFL-Edina, and Mohamud Noor, DFL-Minneapolis. Arc leaders also praised the work of parents and other advocates who have worked for years on this issue.

Regrettably, not all fees have been eliminated. DHS officials note that "some other parental fees continue based on specific factors such as certain out-of-home placements."

Lawmakers should delve into this during the 2024 session and work to eliminate remaining fees. The state should help families raising disabled kids, not add to their already daunting responsibilities.

In Apple Valley, the fees' end brings new possibilities. Kelly Kausel isn't dreaming of glamorous vacation destinations. Instead, she looks forward to paying off credit card debt . Another wish: a newer but still used car.

She'll continue advocating for those with disabilities, but she appreciates lawmakers' work and hopes other Minnesotans do as well. Said Kausel: "I want the community to understand how important this is."