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Parents of medically complex children protest Medicaid changes in Indiana

Parents protest Medicaid changes in Indiana

INDIANAPOLIS (WISH) — Parents of medically complex children on Monday said the state Medicaid agency hasn’t taken enough time to understand their needs before ending a reimbursement program.

The Indiana Family and Social Services Administration on Wednesday announced it plans to end several initiatives under the Aged & Disabled Waiver program that have seen rapid increases in program expenses. Among them is a program that reimburses parents and guardians for caregiving expenses.

In response, dozens of parents brought their children, many of whom live with multiple severe medical conditions, to the Statehouse on Monday to protest the decision.

Susan Graham, whose daughter, Paisley, was born prematurely and has epilepsy and cerebral palsy, says the current program allows her and her husband to make ends meet while she focuses full-time on caring for Paisley. She says her daughter has to see anywhere from five to 10 specialists, and they don’t know Paisley’s needs the way she does.

“They don’t know her baseline and because she’s so complex. They ask us to be the experts,” she said. “Having a stranger in our home give her care isn’t an option because they don’t know her baseline, what’s typical for her.”

Family and Social Services Administration officials told state budget writers in December the state’s Medicaid fund faces a nearly $1 billion shortfall due to an accounting error. Agency officials said the changes to the Aged & Disabled waivers are expected to save the agency about $300 million per year. They said they are still taking public comment on the proposed changes. An agency spokesperson told News 8 parents will have the option to enroll in a new program that pays a daily rate.

Graham said losing access to the program would mean she and her husband could not afford to make accessibility upgrades to their home or replace carpet damaged by Paisley’s periodic vomiting. She said the state should instead cover the costs from its budget surplus, something Gov. Eric Holcomb in December said his administration plans to do. She said adding some limits to the program might be a good compromise but getting rid of it entirely goes too far.

The program changes are slated to take effect July 1.

Parents who attended Monday’s protest said they hope to make the protests a weekly event.