Noblesville mom Jennifer Dewitt, pictured here addressing reporters in April 2024, is one of several parents decrying a new FSSA change implemented days before a deadline for the Structured Family Caregiving transition. DeWitt and other parents of medically complex children say the state has made several last-minute changes ahead of the program rollout. Photo by Whitney Downard for Indiana Capital Chronicle.

By Whitney Downard
Indiana Capital Chronicle

INDIANA — Several parents of medically complex children raised alarms Thursday about a new barrier implemented by the state government for personal attendant hours, part of the ongoing struggle between the groups over changes to government support for families.

The assembled group, part of Indiana Families United 4 Care, contend that the Family and Social Services Administration added a new condition for families on Tuesday, just 11 days before qualifying Medicaid recipients and their caretakers must make the transition to the Structured Family Caregiving program.

“Families are scrambling once again due to FSSA changing the rules at the last minute,” said Jennifer Dewitt, a mom whose son has complex medical needs. “These last-minute decisions have real consequences for Indiana families and the small business owners that this is impacting…”

FSSA, however, said there have been no policy changes.

“FSSA has not told waiver members and their families that the same individual could be both the paid principal caregiver of Structured Family Caregiving and the paid provider of Home Health Services. Medicaid has never allowed the use of taxpayer dollars to pay the same person twice for delivering essentially the same service,” the agency said in a release.

Previously, the families said certified parents could fulfill home health aide or skilled nursing services for their children for a set number of hours and still participate in the Structured Family Caregiving program, the latter of which compensates parents for unskilled caretaking like bathing or feeding.

But parents say the new guidance from the state agency bars the same family member from providing both skilled care hours and Structured Family Caregiving starting July 1.

Dewitt said that providers and FSSA had assured families they could retain their skilled care coverage and certification for such services, which requires hours of training to obtain, and also use Structured Family Caregiving. Parents also said that FSSA didn’t announce the change explicitly, but rather updated a two-month old document.

In a statement, FSSA said additional information had been shared in an FAQ earlier this week, part of ongoing efforts “to make sure waiver members and their families were aware of the existing policy.”

Dewitt and families fired back at the agency in an evening statement, saying, “Our families are living this nightmare in real time—these experiences aren’t figments of our imagination. We are STILL waiting for FSSA to do the right thing by waiver recipients.”

How Did We Get Here?

Following a December meeting that revealed a nearly $1 billion shortfall in the state’s Medicaid forecast, FSSA implemented a series of cost-savings moves — including a major change to attendant care services for families.

Previously, FSSA paid parents an hourly wage that included benefits through an attendant care program for unskilled services they provided to their medically complex children. In January, the agency announced that families would move to Structured Family Caregiving, a program that pays a fixed per diem at a far lower rate.

Later, the agency revealed that the attendant care program included few guidelines on maximum hours worked and that some families had received hundreds of thousands of dollars for the services they provided.

Parents rallied at the Statehouse repeatedly, hoping to convince lawmakers to protect the program but legislators punted in the last hour. Since the General Assembly concluded the 2024 session, families have coalesced to bring their concerns to FSSA en masse and coordinated advocacy efforts.

Six moms met with the Holcomb administration in April, sharing ten requests in advance of the July 1 transition. The families said all but one of these concerns were either outright denied or “minimally addressed,” including the sharing of key criteria guidelines for receiving pay under Structured Family Caregiving.

What This Leaves Families

The latest news was another blow for families making the transition from attendant care to Structured Family Caregiving, both of which are designed to compensate for unskilled care.

But Dewitt noted that families often perform the skilled tasks they’re not paid for under those programs, such as administering certain medical treatments or inserting a gastrostomy tube, a type of device that brings nutrients directly to the stomach. But she said they can be paid for those tasks as home health aides, licensed practical nurses or registered nurses.

Having parents trained and licensed also relieves the statewide nursing shortage, which families say prevents them from hiring a nurse to perform those skilled duties. Dewitt said that her son is approved for 45 hours a week but she can only secure staffing for 25 of those.

Additionally, families not using their approved skilled nursing services could lose them and potentially lose access to the Structured Family Caregiving waiver, which is designed as a last resort option for families.

The Mattingly family found out about the change while waiting for their son’s open heart surgery in Cincinnati, pivoting to license the father under Structured Family Caregiving before the deadline.

The lives of medically complex children are already uncertain. Unplanned hospitalizations can dim a child’s future prospects while a revolutionary treatment can extend dismal life expectancy predictions. Families like Dewitt have gone bankrupt trying to provide care to their children and the state’s attendant care program provided a rare opportunity for financial stability for many while it existed.

She concluded by saying families needed a steady program, something that wasn’t “constantly… in flux” and that also acknowledged the need to pay parent caregivers a living wage.