When Becky Miller’s 7-year-old son Jackson was diagnosed with autism three years ago, she enrolled in a public health program that pays for speech and behavioral therapy sessions that aren’t covered by her employer’s health insurance.

But the financial burden soon became overwhelming and the Millers, who live in Breckenridge, had to forgo the much-needed therapy. Like dozens of other families across the state, the Millers could no longer afford the thousands of dollars in fees associated with a Medical Assistance program known as TEFRA, which covers health care for children with disabilities.

“It feels like we’re being punished for having children with disabilities,” said Miller, a nurse, who was paying $9,000 a year out of pocket.

Miller is among a growing number of Minnesota parents voicing alarm about high and rising TEFRA fees. At legislative hearings Monday and Tuesday, a long line of these parents, many in tears and with children in tow, testified in support of legislation that would reduce the portion of fees paid by parents by 50 percent. The bill, they argue, could enable hundreds of children with disabilities to access services, such as personal home care and speech therapy, that are meant to help them live more independently in the community.

The TEFRA program was created so that parents who earn too much to qualify for Medical Assistance could still obtain the broader array of services covered by public insurance. Statewide, nearly 3,000 children with disabilities are enrolled in the program. But the income-based fees have risen steadily over the past decade, putting the program out of reach for many families. Some parents pay more than $1,000 a month in TEFRA fees, on top of their regular private insurance premiums, and are forced to deplete their savings and go deeply in debt to stay in the program.

“It’s unconscionable that children in our state are not receiving the health care and therapies that they need because of these parental fees,” said Steve Larson, senior policy director at Arc Minnesota, a disability advocacy organization in St. Paul.

An early fiscal note prepared by the Minnesota Department of Human Services estimates the cost of halving the TEFRA fees would total $9 million over the next biennium.

Sarah St. Louis of Shorewood is among the concerned parents. In February 2013, her son Ezra suffered severe brain damage when a vehicle driven by his day-care provider slammed into a light pole. Ezra, then just 20 months old, was thrown against a passenger door. The TEFRA program has paid for physical, speech and occupational therapy — services that have been instrumental in his recovery, enabling him to attend mainstream classes.

But in late 2015, the hundreds of dollars in monthly fees became too much, and St. Louis had to drop out of the program. Now she battles regularly with her insurance company over basic health expenses for her son.

“These children already have a difficult life ahead of them,” St. Louis said. “Why make it worse?”


Twitter: @chrisserres