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Family caregivers: FSSA has thrown another '11th hour curveball' in Medicaid program transition

A teenager in a motorized wheelchair at a press event.
Abigail Ruhman
/
IPB News
Family caregivers also said the state has not adequately addressed the concerns their organization brought in front of Governor Eric Holcomb.

Families of medically complex children say the state has thrown another “eleventh-hour curveball,” with less than two weeks before the state implements a major change to a Medicaid program.

The Family and Social Services Administration recently updated a two-month-old document, which will force some families to abruptly shift how they utilize Medicaid services.

The state’s update relates to care provided under two services: Prior Authorization Home Health services and the new Structured Family Caregiving program.

In response to the $1 billion Medicaid shortfall, FSSA said family caregivers will no longer be able to provide attendant care — instead shifting to the Structured Family Caregiving program on July 1.

Now, one paid caregiver will not be allowed to deliver both services.

Jennifer Dewitt is a mother and caregiver of a medically complex child, as well as a member of a grassroots organization of family caregivers called Indiana Families United for Care. She said both services require specific types of training that family caregivers won’t have enough time to complete before the July 1 deadline.

“Many times families were intending on one person doing both, and now they are scrambling to get that second person trained,” Dewitt said. “However, if you are a single parent, you have to choose one or the other. We're left without options to do both.”

In order to be able to provide care through Prior Authorization Home Health services, a caregiver has to be a licensed home health aide. Dewitt said this can require 80 hours of training and in-person clinicals, as well as going through the licensing process.

“This is not something that can happen in seven days,” Dewitt said. “It's not possible, so if you're having to switch people around and try to find somebody else that can do this — it's not just as easy as well, ‘You need to talk to your care manager and come up with an alternative,’ which is what the FSSA had said in their newly released document.”

While the training for Structured Family Caregiving is not as long, Dewitt said it’s still not possible to complete with the time FSSA has given families.

Families are also concerned about how this change will affect their access to the Structured Family Caregiving program.

The program is considered a waiver service, which means it’s the “last resort” payer for Medicaid members. Individuals and families have to exhaust all other options available to them through the Medicaid state plan, including Prior Authorization for Home Health, before they qualify for the program.

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Dewitt said there’s a “long history” of allowing family caregivers to provide care as home health aides or nurses because of ongoing staffing shortages in the industry.

Rachel Mattingly, another family caregiver, said the staffing issues have even led some providers to not take on patients unless there is already someone in mind as a caregiver.

This new change means if families aren’t able to find another caregiver to take on one of the services, they could lose access to Structured Family Caregiving.

“If they don't find an agency that has staffing that can take them on, they can't fulfill that requirement and they risk then being denied for waiver services because they haven't fulfilled that [prior authorization] requirement,” Mattingly said.

The families are unsure how having to adjust their service plans to reflect a change in who the caregiver is will impact the continuous coverage promised by FSSA.

Dewitt said the state “needs” family caregivers to fill the gaps in care the state can’t address, but this move left families and small businesses with “real consequences.”

“None of this was communicated to providers in advance,” Dewitt said. “And providers have spent at minimum, tens of thousands of dollars, if not hundreds of thousands of dollars, training parents to be home health aides.”

She also said this isn’t the first time families have been left without adequate information.

“Families are scrambling once again due to FSSA changing the rules at the last minute, a trend that has continually occurred since the first change was announced on January 17,” Dewitt said.

She said communication has been a “mess” and her group has received contradicting information from state Medicaid officials. She also said families have been contacted by other stakeholders for information because “it's not being effectively communicated by the state.”

The family caregivers behind Indiana Families United for Care also said the state has not adequately addressed the concerns their organization brought in front of Governor Eric Holcomb.

Another family caregiver, Renee Case, said the most pressing concern remains the effective date for the changes.

“With the newest guideline shared just two days ago regarding who can deliver [prior authorization] services alongside structured family care, we desperately request that FSSA postpone implementation of this new stipulation for at least 60 days,” Case said.

Case said this would ensure families have more than “seven business days” to make necessary service plan adjustments.

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

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Abigail Ruhman covers statewide health issues. Previously, they were a reporter for KBIA, the public radio station in Columbia, Missouri. Ruhman graduated from the University of Missouri School of Journalism.