Parents of medically complex children decry newest FSSA barrier
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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 (FSSA) 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.
“Changing the rules at the eleventh hour and burying the changes in a two-month old document and not directly notifying providers is unconscionable. Parents are trying to manage an already difficult and complex situation, and having a state agency that can’t seem to decide on the rules we have to abide by creates unnecessary pain, anxiety and confusion,” Dewitt said.
“This latest curve ball is going to harm these families; there is no good faith left with us when it comes to the Holcomb administration’s FSSA. What they are doing has zero to do with what is best for these children, and they have little concern for what the shabbily planned changes do to families,” Dewitt continued. “Simply put, they are balancing the budget on the backs of the most medically complex children in Indiana.”
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.”
“FSSA has been directly communicating with waiver members, their families, and advocacy organizations through webinars, newsletters, direct phone calls from FSSA representatives and through meetings to share information and receive questions and feedback so that the members have the supports they need to make decisions, if they are transitioning to Structured Family Caregiving or to a new attendant care provider. Additionally, families continue to be encouraged to reach out to their care managers for support and information and can also contact FSSA,” the agency said.
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.
“There are things that you are compensated to do as a home health aide, an LPN or an RN that are not covered under the structured family care per diem,” she said. “We’re still allowed to do it, but we can’t technically be compensated for that or, quite frankly, (for) any of the other skilled care we do.”
“Really, what it comes down to is paying us less to do a whole lot more,” she continued.
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 single-parent families who are trying to meet all these requirements at the same time, they’re put in this position of saying, ‘Now I can’t do both structured family care and be the one to work (as a home health aide). But I don’t have anyone else,’” said Rachel Mattingly, another parent of a medically complex child. “So how do I fulfill that (skilled nursing) requirement to be able to utilize waiver services? There’s so many other waiver services that the families need — like home modifications — even if they weren’t going to use structured family care.”
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 surgery) happened to get canceled, which has bought us now a week and a half of extra time to get my husband trained, because we were planning on being in Cincinnati for probably three weeks with this surgery,” Mattingly said. “I’m fortunate that my son’s surgery got canceled and rescheduled for July 2 so that I can rush to get my husband trained for something that he should have had since January to do.
“Because we should have had all the pieces to the puzzle from the very beginning, and we didn’t.”
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.
“This is a massive change; this isn’t just something small. And it’s going to impact these families in such a negative way,” Dewitt continued. “… We’re literally setting these families up for failure and it didn’t have to be this way.”
The Indiana Capital Chronicle is an independent, not-for-profit news organization that covers state government, policy and elections.