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Families of medically complex children 'lost trust' in FSSA during attendant care transition

The Family and Social Services Administration is implementing a significant change July 1 to an important Medicaid program for medically complex children, in response to last year’s $1 billion Medicaid forecasting error. Family caregivers said they’ve lost trust in the agency based on how it is handling this process.

As of July 1, family caregivers of medically complex children will no longer be able to provide attendant care. This means they have two options: transition to the Structured Family Caregiving program or stay in attendant care with someone else providing the service.

The attendant care program paid providers about $34 an hour, regardless of the assessed need. The providers would then pay Legally Responsible Individuals a portion of that.

Structured Family Caregiving pays caregivers per day using a three-tiered system based on an evaluation of the Medicaid member. The daily rate for level one is about $77, level two is about $100 and level three is about $133.

Erica Hunt, a mother and family caregiver to a medically complex child, said being able to provide attendant care as a family caregiver gave her and her family a chance to breathe after years of navigating complex care without support.

“Now we're going really backwards and it's going to be adapting again, which we'll figure that out,” Hunt said. “We always do, but it's frustrating and it's discouraging that we have to really add this extra hardship onto what we're already dealing with everyday.”

FSSA has allowed family caregivers to serve as attendants for years as a way to address the staffing shortages in the home health industry.

Hunt’s youngest child, Ella, requires very specialized types of care. Ella is on a ventilator and can’t move or swallow. Hunt said the care is so complex that it was difficult to even find home care nurses that were equipped and trained to manage her care.

Hunt said she hasn’t been able to work for nearly 13 years because of the complexity of that care. Before they were on the attendant care program, her husband, Dan, had to work three jobs to allow them to have a “stable home system” for Ella’s medical care.

Once they began receiving home and community based services through the Aged and Disabled waiver, Hunt said they were able to provide the care themselves through attendant care and build a team of people to support her and her husband.

However, in January, the agency announced this would no longer be an option for families.

Hunt said there wasn’t actually a choice between the programs for her family. Her daughter’s care is so complex that it requires more than one person. She said Structured Family Caregiving isn’t set up for the type of care Ella requires.

“It forces us into a one caregiver system,” Hunt said. “Everything falls then on my shoulders, and that's just not a life that we can continue to maintain.”

Ella often requires at least two people to assist in her care. Hunt said they have multiple attendants that provide care, in addition to her and her husband.

“We're hoping we have our attendants,” Hunt said. “We've put a schedule together and we hope we can use them. We hope we have the help we need.”

Hunt and her husband will “sacrifice” the financial support that comes from them providing attendant care as Legally Responsible Individuals. She said she hopes the state allows them to do that, but she doesn’t have confidence in FSSA.

“I don't know what we can trust right now,” Hunt said. “I'm not sure that we've really been given a ton of clear direction.

She said she’s concerned that what resources families have access to will continue to change.

“We don't know when the last day will be with our child,” Hunt said. “I think that we're all going to fight to help give them their best life while we have them here.

Hunt said that she lost trust in the state and FSSA because of a lack of communication and transparency.

“This was not handled well,” Hunt said. “It just wasn't. I don't believe that there's even anybody in FSSA that would say that this has been handled well.”

Family caregivers have been asking for clearer communication from the state for months.

Last week, Indiana Families United for Care, a grassroots organization of family caregivers, said the state threw another “11th hour curveball.”

With less than two weeks before the state implemented the major change, FSSA updated a two-month-old document. The state’s update relates to care provided under two services: Prior Authorization Home Health services and the new Structured Family Caregiving program.

The state said one paid caregiver is not able to provide both services. Families said this was not communicated to them until there wasn’t enough time for them to adjust.

Structured Family Caregiving 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.

READ MORE: Lawsuit alleges FSSA 'failed' its duty to provide medically complex children care

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Jennifer Dewitt, a mother and family caregiver of a medically complex child, said many families have already been planning on one person providing both services and had to “scramble” to get a second person trained. However, it isn’t as easy as just having a second person to provide the care because both services require specific types of training that caregivers have to complete.

Dewitt said her group has heard contradicting information from Indiana Medicaid officials, but providers have already been paying to get family caregivers trained for both programs.

“There is no good faith left with us when it comes to the Holcomb administration's FSSA,” Dewitt said. “What they are doing has zero to do with what is best for these children, and they have little concern for what these shabbily planned changes do to families.”

Heather Dane, the chief program officer of FSSA’s Bureau of Disabilities Services, said the update to the document was not a policy change.

“Guidance was issued after FSSA learned that home health services were being offered to families that were not consistent with the current definitions at home health,” Dane said.

Dewitt and other families requested FSSA to delay the implementation of the change, but that request was not fulfilled.

“It's these medically complex individuals and their families who are paying far too high a price for governmental incompetence,” Dewitt said.

FSSA announced it will update the Medicaid strategies webpage with any additional information. It will also continue to host webinars every other week through July to provide additional information to individuals and families.

Individual and Family Bi-Weekly Webinar

July 10, 2024, 3-3:30 EST

Microsoft Teams link

Individual and Family Bi-Weekly Webinar

July 24, 2024, 3-3:30 EST

Microsoft Teams link

Abigail is our health reporter. Contact them at

Copyright 2024 Indiana Public Broadcasting

Abigail Ruhman