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Families raise concerns on attendant care issue, present recommendations to governor

Jennifer Dewitt and other family caregivers speaking outside of the Governor's office.
Brandon Smith
IPB News
Jennifer Dewitt, a mother and caregiver of a medically complex child, said the recommendations would clarify the process, improve communication and address concerns around how the transition is being handled.

With about two months left before a significant change to a Medicaid program for medically complex individuals, some families say the Indiana Family and Social Services Administration has failed to communicate with caregivers and other stakeholders. A grassroots organization of family caregivers met with the governor and FSSA to express its concerns with the change.

FSSA said family caregivers will no longer be able to provide attendant care — instead shifting to the Structured Family Caregiving program on July 1.

The shift was a part of the state's Medicaid strategies in response to the $1 billion Medicaid shortfall. FSSA said the growth of the program is "unsustainable."

Indiana Families United for Care presented Gov. Eric Holcomb and FSSA Secretary Dr. Daniel Rusyniak with nine recommendations for the agency.

Jennifer Dewitt, a mother and caregiver of a medically complex child, organized the meeting. She said the recommendations would clarify the process, improve communication and address concerns around how the transition is being handled.

“We have families that are going days, weeks, and some families at this point a month without any options, without any care, because of the ineffective processes and communications that they are experiencing from FSSA,” Dewitt said.

In addition to FSSA “woefully lacking” communication, Dewitt said the agency is hurting families right now.

Indiana Families United for Care said FSSA is holding approvals for other waiver services "hostage" to lower or stop attendant care hours before the July 1 deadline. The waiver services are for things like necessary home modifications, specialized equipment and generators.

As part of the recommendations, the organization is calling on Holcomb to halt the practice.

“There's no reason why a request for a generator should be held up as a way to force a family to lose attendant care hours,” Dewitt said. “If somebody is requesting a generator for their home, it means they have medical equipment that requires power to run — that should not be held up due to [FSSA] wanting to lower hours before July 1.”

Several of the other recommendations focused on communication and transparency between FSSA and various stakeholders. These included FSSA designating an ombudsman for families, providing written notification to families following a denial of services, publishing public versions of the waivers submitted to the federal government and frequently asked questions on the Medicaid strategies webpage.

The organization also requested FSSA provide families with the evaluation tool case managers use to evaluate which tier of the Structured Family Caregiving program they are in, or at least the release date of the tool.

While the attendant care program paid legally responsible individuals by the hour, the Structured Family Caregiving program provides families with an amount of money per day.

Benefits in the Structured Family Caregiving program are based on a tiered structure. A case manager is responsible for evaluating the individual and placing them on one of three tiers.

However, none of the hundreds of families Dewitt said Indiana Families United for Care reached out to said they had been evaluated. She also said case managers told them they hadn’t received the evaluation criteria.

“There's approximately a nine-step process for us to be able to make that transition from attendant care to structured family care,” Dewitt said. “And right now we're stuck on step one.”

The organization recommended FSSA delay the requirement for personal assistance hours until July 1 due to “lack of communication and notification” to members and other care providers. In a statement, the organization said home care agencies say this is a six- to 10-week long process.

READ MORE: FSSA creates waitlist for Aged and Disabled waiver. Advocates worry it creates barrier to care

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It also asked for FSSA to delay the implementation of the transition by 90 days. The organization said this would allow the agency to “provide clarity” to families, case managers and providers.

Dewitt said these families have been waiting for a chance to speak to the governor for months. When the legislative session ended with little done to address the issue, families picketed outside of a bill signing event in March. Dewitt said that protest helped them get Holcomb to meet with families.

In a statement, Holcomb said he listened to the parents and appreciated them bringing their concerns forward.

“They obviously only want the best for their children," Holcomb said. "Dr. Rusyniak was with me during the meeting, and we’ll consider the issues they raised as well as changes we can make to better communicate with impacted families.”

Dewitt said she hopes to hear from the governor and FSSA within a week on “meaningful steps forward” for families of medically complex individuals.

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

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.