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Families scramble as Indiana caregiving program winds down

Families scramble as FSSA cuts care program

JACKSON COUNTY, Ind. (WISH) — For Landon Johnson, even a simple cough is impossible.

Several times a day, his mother, Bethany, uses a machine to momentarily blow air in and out of his lungs to clear out any mucus. Then, she hooks the 15-year-old back up to his ventilator at their home about a 90-minute drive south of downtown Indianapolis.

It’s the same for any other function. Landon has Type I spinal muscular atrophy. Bethany says Landon’s brain functions normally but he cannot make any movement beyond blinking to indicate “yes” or “no.” Bethany has to feed him through a tube, change his body position and clean him. She says doctors originally did not expect him to live past age 2.

Since 2020, Bethany says, she has used the Indiana Family and Social Services Administration’s attendant care program for legally responsible people, a category that includes parents and guardians. The program pays an hourly rate to care for relatives who have significant disabilities. Bethany originally signed up to be paid for 50 hours of care a week and later bumped that up to 70.

“It’s taken a big burden off of our shoulders financially,” she said. “If my husband was laid off, we don’t have to worry, we have other income. If our refrigerator goes out, it’s no longer ‘What are we going to do? Where are we going to find this money?'”

Last month, the Family and Social Services Administration found its attendant care program expenses had roughly doubled from $60 million per month last June to $120 million in December. Agency officials say this meant they faced a $900 million Medicaid shortfall through July 2025. To help close the funding gap, agency officials say they will end the existing program on July 1.

Johnson says she and her husband have spent the past two weeks scrutinizing every bill and paycheck they have to look for every expense they can cut.

“I was up at 3 o’clock this morning unable to sleep, thinking, ‘OK, what can go? What can we do away with?'” she said. “‘Is there a cheaper (phone) plan? Is there any kind of things that we do now that we’ve signed up for and we can go back and say, we can cancel that now?'”

The decision has brought families to the Statehouse to protest for the past two weeks. It also has drawn criticism from lawmakers and from Lt. Gov Suzanne Crouch, a Republican candidate for governor who chairs the Intellectual & Developmental Disabilities Task Force.

At the end of a virtual meeting on Monday, Crouch said she wants the Family and Social Services Administration to pause any further implementation of its plan while both it and lawmakers investigate options.

Family and Social Services Administration officials on Wednesday said program users will have the option to either continue attendant care services with someone such as an in-home nurse or switch to a structured family care plan, which would pay a daily rate rather than an hourly rate. Johnson says neither are good options. She says Landon already has a nurse who goes to school with him every day, but Johnson once went through a period of several months where she was not able to find a nurse.

“Every time that a nurse decides to quit, it’s starting all over from scratch,” she said. “I have to train her all by myself. So how do I miss work while that’s happening, even if I did have a nurse?”

As for the per diem structured family care plan, Johnson says, it would be better than nothing but it still doesn’t provide anywhere near the financial security the current program does. She says she understands the state’s need to cut Medicaid costs, but the agency shouldn’t do so at the expense of the most vulnerable.