Families 'welcome and beg' for discussion with governor on attendant care issue

Families of medically complex children want to protect a Medicaid program they say contributes to the well-being of their children. Several families protested the attendant care cuts Thursday outside of a bill-signing event hosted by Gov. Eric Holcomb.

The families said they have been asking to meet with the governor for months to address the concerns they have about the shift from attendant care to the Structured Family Caregiving program set for July.

Rachel Mattingly protested with other families outside of the event. She said she doesn’t understand why the governor can make time for an event to celebrate legalizing happy hours, but can’t find time to respond to families about the “attendant care crisis.”

“We are still knocking on the door, just asking for a moment of time to please work with us collaboratively,” Mattingly said. “Quite literally, our kids’ well-being and safety and our families are all depending desperately on that.”

READ MORE: Session ends with little done on attendant care, some FSSA transparency language sent to governor

In January, the Family and Social Services Administration announced it would no longer allow Legally Responsible Individuals, typically parents or spouses of people with disabilities, to act as attendants. The announcement was in response to last year’s $1 billion Medicaid shortfall.

The program became popular due to a shortage of home health workers. FSSA would pay a provider, who would then pay caregivers an hourly rate to provide care that might otherwise be provided by home health workers.

Holcomb said that his office has been involved with the issue on a “daily” basis and is following it “intimately.” He also said his office will continue following it.

“We want to make sure that folks that are receiving services get them, that they may be in a different way,” Holcomb said. “But we have to make sure that the program is sustainable and that we can provide those services down the road.”

Holcomb said the shift to the Structured Family Caregiving program would take care of everyone who needs care.

The program pays legally responsible individuals (LRIs) a certain amount per day. Families have already raised concerns about the Structured Family Caregiving program not providing enough financial support for medically complex children and their caregivers.

“If he believes that, I would welcome and beg an open discussion with him about our very real concerns about Structured Family Caregiving, and about the appropriateness and feasibility of that program for our families,” Mattingly said.

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Mattingly said parents were crushed by the “lack of action” taken by the Indiana legislature. Lawmakers took some action on FSSA transparency concerns, but only passed one provision that could improve support under the Structured Family Caregiving program. The language requires FSSA to set a minimum percentage of money given to caregivers from providers and report how the agency will improve transparency.

In February, FSSA said it was unsure how much money made it to caregivers on the attendant care program, but reports from families indicated that it was less than half.

Holcomb said the FSSA has been meeting with providers for months, and he is open to speaking with families.

Abigail is our health reporter. Contact them at aruhman@wboi.org.

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