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Caregivers say FSSA has made another change ahead of Structure Family Care changes

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Posted at 10:32 PM, Jun 20, 2024

INDIANAPOLIS — Families who are caring for their medically complex children have 11 days before the program they use through the state undergoes dramatic changes.

Now, there is another change that these families must navigate.

Earlier this year, the Family and Social Services Administration (FSSA) announced a nearly billion-dollar shortfall in their budget. Because of that shortfall, they had to make budget cuts.

Changes to the Medicaid Attendant Care Program are something that FSSA decided to do. In the months since, families have have rallied at the statehouse and met with Indiana Gov. Eric Holcomb.

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The Attendant Care Program allows families to earn a living by caring for their medically complex kids.

Come July 1, they can no longer take part in the program. They now are required to switch to the Structure Family Care Program instead.

"We need to be realistic about whether or not that program can actually put food on the table for families that have to make those difficult choices about their children,” Jennifer Dewitt, who cares for her son, said. “Or don't have access to any other care sources."

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The Structured Family Care Program changes parents from an hourly rate to a daily stipend, drastically cutting their income compared to what they were able to earn under the Attendant Care Program.

Under the Structured Family Care Program, parents were able to serve as the primary care giver and a home health aide through prior authorization hours, allowing them to earn more income. But on Tuesday, families say FSSA made another change saying someone else now must provide that home health aide care.

“These families are required to go to these agencies and say, 'I need to try to seek PA hours for my child what do I do,'” Rachel Mattingly, an attendant caregiver, said. “They will ask if you are going to get trained and work these hours yourself or do you have staff to bring to the agency."

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That's because there is a massive shortage of home healthcare workers in the state.

Parents are getting home healthcare certified so they can do the work themselves, which isn't an easy task when taking care of a child with special needs.

"It would often be me staying up late into the night while they were sleeping to get some of these things done,” Mary McDonald, a caregiver who got home health certified, said. “To follow through all of the teaching sessions the interactive portions to take the quizzes."

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Now, these families say they must find another person to do that portion of their child's care. Families we spoke with feel is an almost impossible task.

"What are they supposed to do in seven days,” asked Dewitt. “Like we are literally setting these families up for failure and it didn't have to be this way. It didn’t.”

We reached oout to FSSA and the governor's office for clarification on why this change was made.


The governor’s office did not reply but FSSA did. The following statement is what they had to say on the matter.

There has been no change in policy. 

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.

FSSA has committed to being responsive to questions received from waiver members, their families and their advocates. The additional FAQs published this week were in response to questions and in an effort 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.

In response to that statement, Indiana Families United for Care said the following.

“Our families are living this nightmare in real time. These experiences aren’t figments of our imagination,” Dewitt said. “ We are still waiting for FSSA to do the right thing by waiver recipients.”


They also state that structure family care and home healthcare are not the same. The guidelines can be found here.