Fees strain middle class families with children who are disabled

Children with disabilities and families that make too much money to qualify for Medical Assistance can still receive MA services, but their parents have to pay monthly fees based on income. And those fees have exceeded what many middle-class families can pay, advocates told the House Health and Human Services Finance Committee Wednesday.

Hundreds of dollars a month in fees can force parents to choose between forgoing the supports their children need or risk destroying their savings and going into debt, said Rep. Roz Peterson (R-Lakeville).

Rep. Roz Peterson

HF1182 would cut the parents’ required contributions in half, not only providing relief to families using the service, but also increasing the number of people who can access those services to begin with, said Peterson, the bill’s sponsor.

It was held over for possible inclusion in a potential omnibus bill. A companion, SF807, sponsored by Sen. Jeff Hayden (DFL-Mpls), awaits action by the Senate Human Services Reform Finance and Policy Committee.

Lisa Juliar, the mother of four children, including a teenager with Crui du Chat Syndrome, said that services obtained through the state, including speech therapy and support from a personal care assistant, have served as a “lifeline” for her son and family, but that the fees are “staggering” and “overwhelming.”

After Juliar was unable to find a job with the flexibility she needed to meet her son’s needs, she started her own business. But the strain of juggling her son’s needs, bills and the monthly contribution payments drive her to think about quitting work completely, since it seems like the only way to make ends meet, she said.

Rep. Dave Pinto (DFL-St. Paul) said that past attempts to balance the state budget led to the fee increases currently straining families with children who have disabilities.

Rep. Laurie Halverson (DFL-Eagan) stressed that as the Legislature sets the state budget for the upcoming biennium, human services priorities “absolutely have to be part of the discussion” when setting targets and making decisions.

“I feel like health and human services has served as an ‘also and—’ for far too long,” she said. “It’s time for us to keep our promises.