NOBLESVILLE, Ind. (WISH) — Families and advocates for medically complex children on Monday said Indiana officials did not clearly communicate who would qualify for a pair of cost-reimbursement programs through Medicaid.

Beginning July 1, parents will no longer be eligible to take part in the attendant care program, which reimburses caregivers of people with serious disabilities at a rate of $34 per hour. If parents wish to continue to be reimbursed directly for caring for their medically complex children, they will have to sign up for the structured family caregiving program, which pays up to $133 per day. Jennifer DeWitt, whose son has several severe medical conditions and who has become a key advocate for such families, said some families also have begun signing up for the state’s home health aide program. Then last week, the state Family and Social Services Administration (FSSA) issued guidance that clarified one person can’t participate in both programs.

“For a family that already has a whole lot of anxiety due to their kid’s medical conditions in their life, to have this additional anxiety put in there of not every knowing when FSSA is going to pull the proverbial rug out from underneath them, you know, it’s not necessary,” she said. “They should have had their plans specified when they made these changes.”

FSSA officials said their agency has never allowed one person to sign up for both structured family caregiving and the home health aide program. The same family can receive both programs, but the same person cannot be signed up to be the designated caregiver for both. Officials said they updated the FAQs on their website last week to better communicate that in response to families’ questions.

DeWitt said agency officials should have made that clearer to families. She said the rule makes things especially difficult for single parents, who have to choose which program best fits their child’s needs and their financial situation.

Even families who do have both programs say it will be a struggle. Susan Graham’s daughter, Paisley, has several conditions including cerebral palsy and intractable epilepsy. She still uses a feeding tube. Graham said her husband signed up for home health aide while she signed up for structured family caregiving. Still, she said, the loss of the attendant care program will hurt her ability to save for college for her two older children. It also will make it harder to buy Paisley a new wheelchair. Graham said the current one doesn’t fit her daughter well, and Medicaid only covers one new wheelchair every five years.

“I really feel that FSSA has harmed my family. They’ve harmed my daughter by adding that stress that we don’t need,” she said.

Graham said she plans to continue to lobby lawmakers to make changes to the program. Lawmakers return to the Statehouse in January for the 2025 legislative session. The session will include the state budget.

• Premiums return for Indiana’s HIP, CHIP Medicaid enrollees