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Proposed changes to Medicaid waivers would end certain payments to caretakers

Posted at 7:20 PM, Jan 19, 2024
and last updated 2024-01-29 07:33:37-05

INDIANAPOLIS — The state of Indiana has proposed to change Medicaid waivers or home and community-based services.

Some children or adults require around-the-clock care because of a disability.

“I have to have eyes on my son 24/7,” Caysee Anderson said.

Anderson cares for her son, Dallas.


“He is deaf. He has cerebral palsy. He has seizures and he is fed by a G tube,” Anderson said.

Anderson is paid through the state’s Medicaid Aged and Disabled Waiver services. It’s considered an option instead of nursing facility care.

However, those checks and benefits could end soon.

This week, the Family and Social Services Administration proposed ending payments to parents, spouses or legal guardians getting paid to take care of their disabled loved ones.

“It’s not fair. It’s not fair to us, it’s not fair to the children. It’s just not fair,” Anderson said. “I’ve been really impacted by this. I just got my 401k and now I’m going to lose it.”

In Dec., the state announced a nearly $1 billion budget shortfall for Medicaid health coverage and waiver services.

The ARC Indiana says part of that shortfall was from unexpectedly high enrollment and utilization of aged and disabled waiver services.

Anderson says paying families is necessary due to frequent doctor visits, therapy and care.

People on the program average $13 to 15 an hour, according to the ARC Indiana.

"Thousands of families have been able to stay at home with their kids and still have an income to provide. That's one of the biggest things," Anderson said.

Another mom says it's impossible to work because of the high demand care.

Eric Deitchman, with Tendercare Home Health Services, says other caretakers could still qualify for the waivers, but not those considered a spouse, parent or legal guardian.

“No more parent caregivers. Nobody who is legally responsible for the individual can provide care for their family member,” Deitchman said.

Instead, parents, spouses or legal guardians will be placed in a "family structured" program that will result in a daily payment of around $35.

Anderson says that means more parents will have to find other caretakers because they won't be able to afford staying home to tend for their children.

“Putting his life into somebody else’s hands is just nerve wracking to me,” Anderson said. “A lot of families will be impacted by this, and it’s going to be catastrophic because there’s going to be families who can’t get somebody to come into their home. The family member may even have to be put into a facility.”


A rally on Monday hopes to prevent this from happening. Families are planning to pack the statehouse at noon.

“It’s going to really hurt a lot of families,” Deitchman said. “I would encourage all legislators to reach out to Medicaid and ask if there are any other things they can do. Can we pass a law in the short session to stop this? It doesn’t need to happen this way.”

This is the link to watch the Intellectual & Developmental Disabilities Task Force discussion on Monday.