Burdensome fees to parents of children with a disability could be eliminated

In Minnesota, children with disabilities are eligible to receive in-home supports and services through Medical Assistance as a supplement to their parents’ private insurance. Parents are charged on an income-based, sliding scale.

But those fees can cost families hundreds of thousands of dollars each month, compelling parents to burn through their savings, mortgage their homes, go into debt, and quit their jobs to ensure their children have the care they need, Rep. Alice Mann (DFL-Lakeville) told the House Health and Human Services Policy Committee Tuesday.

Rep. Alice Mann

Mann sponsors HF748, which would eliminate these parental contributions. It was approved as amended and referred to the House Ways and Means Committee.

A companion, SF480, is sponsored by Sen. Jerry Relph (R-St. Cloud) and awaits action by the Senate Human Services Reform Finance and Policy Committee.

Blake Kelly of Edina has three children, the youngest of whom has a rare condition that impacts his brain development. The 12-year-old cannot walk, talk, or feed himself and has daily seizures. He’s also a great kid who loves school, music, movies, fireworks, and his iPad – even if he isn’t as big a fan of legislative hearings, Kelly joked.

Support from Medical Assistance has allowed Kelly to get a wheelchair, ramp, and accessible bathroom for her son after he became too heavy to carry, as well as help from a personal-care attendant so she can work. The program has been “a great help.”

The cost, however, “is devastating,” with monthly parental fees greater than $800, private insurance costs around $1,300 a month, and a $7,000 deductible, she said. Her ex-husband, who lives in California, pays $1,800 a month in parental fees.

“It sounds insane and yet we can’t go without it,” Kelly said. “It means we have no savings, no college, funds, no retirement,” and live in constant fear of unemployment.

Authorized in 1988 as the Tax Equity and Fiscal Responsibility Act – or TEFRA – the option was designed to help parents whose income exceeded the Medical Assistance eligibility income limit, but who needed help to afford home care, personal care attendants, medical equipment and supplies, and hospital services, said Ryan Anderson Pascual, a senior advocate for The Arc Minnesota.

These services are “critically important because they allow children with disabilities to live at home with their families” stay in communities, attend school, and avoid more intense medical interventions in institutional settings, he said.

But families have consistently struggled to afford the cost of the fees, even after a reduction authorized by the 2017 Legislature, Anderson Pascual said.

Rep. Tina Liebling (DFL-Rochester) asked about the tremendous hurdles parents have to deal with in order to access the program, including unclear directions and an arduous reapplication process prone to administrative errors.

Mann said these concerns are addressed in another bill, HF930, sponsored by Rep. Mary Kunesh-Podein (DFL-New Brighton).