Families call on Holcomb administration to pivot on attendant care transition

Five of the six moms who met with Gov. Eric Holcomb and FSSA Secretary Dan Rusyniak to discuss changes to the state's attendant care program on April 29, 2024. (Whitney Downard/Indiana Capital Chronicle)

Six moms of medically complex children pressured Gov. Eric Holcomb to reform his administration’s approach to transitioning families from attendant care to another caregiving program in a private Monday meeting at the Statehouse.

The parents, appearing on behalf of Indiana Families United 4 Care, shared their requests for action in a media scrum outside the governor’s office. They represent the roughly 1,600 families of children with complex medical needs whose monetary benefits will be substantially cut on July 1 as Indiana amends its attendant care program.

But the group said the loss of care is already happening and the state agency in charge is “woefully lacking” in terms of communication.

“We’re here to try to make the best decisions we possibly can for our children and there’s approximately a nine-step process for us to be able to make that transition from attendant care to structured family care. And right now we’re stuck on step one,” said Jennifer Dewitt, a mom whose son has complex medical needs. “… all of that is at a standstill because, quite frankly, there’s not effective communication coming out of FSSA. But we hope that sharing this information today will enable them to get us that information quicker.”

Dewitt said the administration agreed to update families on their response within the week.

The coalition formed roughly four months ago following an announcement from the Family and Social Services Administration (FSSA), that parents would no longer be eligible for an hourly stipend and would move to a lower per diem benefit in response to a projected $1 billion shortfall in the state’s Medicaid budget. 

The July 1 date is also when the state’s Aged and Disabled Waiver, under which the families currently get services, will transition to the Health and Wellness Waiver while Hoosiers over 60 on the waiver will move to PathWays for Aging.

A list of “requests”

The parents met with Holcomb and FSSA Secretary Dan Rusyniak, and presented nine requests crafted from a survey of providers and care managers along with more than 250 families. 

Holcomb’s office released a statement after the meeting, saying, “I listened carefully and appreciated the moms bringing their concerns forward. They obviously only want the best for their children. 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 afterward that “most of the care managers that we are speaking with, honestly, they don’t know what’s going on and they are frustrated by the lack of information that they are getting and they feel that it’s very difficult to help and guide our families.”

She added that FSSA had already taken action to reduce attendant care hours paid out to parents, such as holding approvals “hostage” for things such as home modifications, specialized equipment and generators for medical devices. The group asked FSSA to halt that practice. 

“… some families are having either part or all of their attendant care hours cut. There has been a previously unannounced requirement that you have to have prior authorization hours through the Medicaid state plan before you are allowed to use attendant care hours,” Dewitt said. 

“… 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. 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.”

Other requests include: designating an ombudsman for families, public versions of the waivers submitted to the federal government, written notification within five business days of notifying a case manager following a denial of services and publishing an FAQ (or a frequently asked questions document) of previous questions from parents.

Another request from families is that FSSA reconsider the attendant care program for Legally Responsible Individuals, usually parents, with certain guardrails, such as limits on hours paid out by the state. The state previously shared that costs from the program jumped from $9.3 million two years ago to $172 million.

Dewitt said none of the proposals are more important than the others but all intertwine. 

A key difference between the current attendant care program and Structured Family Caregiving — other than payments being hourly rate or per diem — is that benefits are granted based on a three-tier structure following an evaluation by a case manager. 

But the moms said none of them and none of the families they’d contacted had been reviewed — and case managers told them they hadn’t received the evaluation criteria. 

“To our understanding, there is not a tool available to adequately evaluate our children from what tiered level they’re supposed to be on,” Dewitt said, noting there are just over 60 days before the transition date. “Quite frankly, I would’ve expected at this point that we would have that evaluation tool ready and that our care managers would be able to start doing those evaluation processes with the Medicaid members.”

Sharing the evaluation tool, or its release date, is another request from the families. 

Dewitt said that without action from the Holcomb administration by the end of the week, families around Indiana will continue to struggle.

“That is the main point that we came here today with, is that families are suffering. 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. 

However, the moms acknowledged that their advocacy has “a long road ahead” with the term-limited Holcomb set to leave office. His successor will likely be the winner of the six-way Republican primary next week, one of whom — Holcomb’s second-in-command, Lt. Gov. Suzanne Crouch — has been vocal about her support for families.

Her office, which previously called for an audit of FSSA in response to the budget shortfall and ensuing attendant care changes, sent a statement Monday sharing her reaction to the meeting and offering her help. Previously, her campaign released an advertisement on the topic.

“Careful consideration of these recommendations is the least Gov. Holcomb and FSSA can do at this point. There are 62 days to make necessary adjustments to help give some of these families not only the hope but the help they need. I sincerely hope that these families can get answers by this Friday on the recommendations submitted to FSSA,” Crouch said. “We in Indiana will be judged by how we care for the most vulnerable among us.”

Dewitt said that the lack of supports for families like theirs was hurting not just them but also Indiana as a whole.

“Between the six women standing in front of you, we have 10 college degrees and 18 professional licenses and certifications. We are a talented part of the workforce that, unfortunately, is having to work as caregivers because we don’t have adequate supports elsewhere,” Dewitt said. “We love our children. We know that moving forward, we’re going to have a lot of advocacy efforts ahead to hopefully be able to work with members of the General Assembly and to work with … the incoming administration.”

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