For families with children who have severe disabilities, finding care for their kids is a constant struggle. That’s why some parents opt to take on that care themselves. In some cases, states will pay parents to be caregivers. But over the past year, at least 11 states have considered slashing these programs, including Indiana.

In Noblesville, Indiana, Jennifer Dewitt gave up full-time work to take care of her 15-year-old twins who have cerebral palsy. Her son Jackson is the most severe. He’s considered blind, unable to eat by mouth, has severe scoliosis, respiratory issues and has seizures every day. 

“You’re always in a high-stress situation because it’s always life or death,” Dewitt said. “When is the next seizure coming? If I feed him this, is he gonna choke on it?”

The family is one of roughly 20,000 in Indiana who receive funds through a state Medicaid program called attendant care. It pays spouses and parents to provide hospital-level medical care for their disabled family members.

Dewitt said there are great home health workers out there, but they’re in short supply. Jackson needs around-the-clock care.

“I think almost every special needs family that I am connected to, all of us have stories of nurses just not showing up,” Dewitt said.

Dewitt’s husband is a truck driver, which means he isn’t always home. As a parent caregiver, Dewitt makes $15 an hour. And the pay from that program helped the Dewitts move into a new, more accessible home. Dewitt has to stay by Jackson all night to make sure he doesn’t pull off his breathing machines. Their old house didn’t have much room.

“I was actually sleeping on the floor in his bedroom to make sure that I could hear him,” she said.

When Indiana officials proposed cutting payments to parents to plug an unexpected budget shortfall of nearly $1 billion, families like Dewitt’s felt blindsided. She’s scared they may lose their house.

“I would have never made the choice to move if I would have known that I was going to lose the biggest portion of my income,” Dewitt said. 

Indiana’s Medicaid program will stop paying parents the same rates as any other registered in-home care provider. Parents could keep providing medical care for their kids, but their take-home pay would be less than half of what it was. That’s because they’d have to work with an agency under a model called structured family caregiving. Some of the caregiving pay would go to the agency.

But Elizabeth Edwards, a senior attorney with the National Health Law Program, said the state is making a budget calculation here.

“If the state is saying that they are going to save money by not allowing families to be paid caregivers, that indicates, to me at least, an assumption that they don’t think the individuals will get that service,” Edwards said.

Some families may have to put their child in a nursing home. And Kate Barrow with the Indiana Governor’s Council for People With Disabilities said some parents have considered other drastic moves so they can keep their pay and keep taking care of their children. Because if they’re still the legal parent, with the proposed changes they wouldn’t be paid at the higher caregiver rate.

“I’ve heard of families who they’re considering signing over their parental rights for their children in order to remain the caregiver,” Barrow said. 

Legislative efforts to quash these proposed changes or increase payments to families failed. Now, the changes could take effect in Indiana as soon as this July.

Meanwhile, at least 13 other states have recently decided to allow parents and spouses to be paid caregivers. And 13 other states already did.