Certain family caregivers could be allowed to provide attendant care through Indiana Medicaid again under a proposal from the state. But whether or not families qualify would depend on how the state chooses to define “extraordinary care.”
If someone’s care meets the definition of extraordinary for a certain program, then a legally responsible individual — such as a spouse or parent of a minor — can be paid to provide the service. Extraordinary care refers to care that falls outside of what a spouse or parent would provide to a non-disabled individual.
Advocates raised concerns that FSSA’s proposed definition of extraordinary care for attendant care services is too restrictive.
Holly Wimsatt with FSSA said the definition is only supposed to allow a small group of people to have legally responsible individuals provide the service for them.
“The reason we are looking at that attendant care service is really to address what has been elevated to us, for individuals who have family members with complex medical needs,” Wimsatt said.
Following the 2023 Medicaid forecasting error, FSSA announced legally responsible individuals could no longer provide attendant care as of July 1, 2024. As a result, many parents of medically complex children had to scramble to adjust to the state’s decision.
FSSA said the state didn’t have the authority under the waivers to allow legally responsible individuals to provide the care. So they created the Structured Family Caregiving program allowing parents and spouses to be paid caregivers. However, families and several lawmakers said the program wasn’t adequate.
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. FSSA said it was unsure how much money made it to caregivers in the attendant care program, but reports from families indicated that it was less than half.
Attendants are only able to provide “unskilled care,” meaning attendants aren’t allowed to do things like deal with complex medical needs. For legally responsible individuals, that means if they need to provide that care they have to clock out to do it.
Structured Family Caregiving pays caregivers per day using a three-tiered system based on an evaluation of the Medicaid member. While it does offer less support, it is designed to work more with how a parent or spouse would provide care, allowing them to shift between “skilled” and “unskilled care” without having to clock in and out.
Structured Family Caregiving also requires an individual’s needs to qualify under a definition of “extraordinary care,” but the definition is different and more broad than the proposed attendant care definition.
Wimsatt said the extraordinary care definition for the Structured Family Caregiving program is not changing. Medicaid officials said that it is still one of the other options available if someone doesn’t qualify for attendant care.
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FSSA has been collecting public comment on the proposed definition for the attendant care program. Wimsatt said the agency has requieved quite a bit of feedback.
“A lot of suggestions around other care needs that commenters would like to see added, including seizures, G-tubes, ostomy, catheter, dialysis,” Wimsatt said.
Under the proposed definition, someone qualifies for extraordinary care in the attendant care program if they require “intensive nursing care.” That includes “continuous ventilator care,” tracheostomy care and Total Parenteral Nutrition or TPN. It also includes other “comparable nursing services” approved by FSSA.
Several advocates raised concerns about the definition being too narrow and too vague.
Kim Dodson, CEO of the Arc of Indiana, said she appreciates Indiana is trying to make some movement, but said there are a number of changes she’s hoping to see.
“I do hope you get rid of the word continuous on the ventilator care,” Dodson said.
Jim Wiltz, with the Indiana Association of Behavior Consultants, said the need for extraordinary care seems to not match with the fact that attendants are allowed to provide skilled care.
“It does seem a little ironic to me that you have this definition that requires these skilled components, and those are the very components that you have to clock out for,” Wiltz said.
FSSA officials said attendants aren’t allowed to provide skilled care because that’s how the federal government defines the service. But, in order to qualify for a legally responsible individual to provide the care, there has to be a reason that a parent or spouse providing the care is necessary. For medically complex children, that reason could be trying to limit the number of people around the child.
Wimsatt said the vagueness of the definition, particularly the “other comparable nursing services” portion, is necessary.
“If there is a list or if we are too prescriptive that will limit further who can access attendant care provided by [legally responsible individuals],” Wimsatt said.
Advocates also proposed including the definition of “ordinary care” so people can more easily understand what care goes beyond that.
Wimsatt said FSSA received public comments concerning the income needs of families. She also said there was no public comment against legally responsible individuals providing paid care, like attendant care.
Wimsatt said there will be more opportunities for public comment. Medicaid officials said the proposed definition is subject to change as the state receives and reviews more feedback.
Abigail is our health reporter. Contact them at aruhman@wfyi.org or on Signal at IPBHealthRuhman.65.