At a meeting of the Intellectual and Developmental Disabilities Task Force on Monday, Lt. Governor Suzanne Crouch and three current legislators publicly called on the Family and Social Services Administration (FSSA) to pause proposed program cuts for parents with medically complex children.
In response to a $1 billion shortfall in the Medicaid budget, the FSSA announced a decision to restrict the use of care allowances for legally responsible individuals (LRIs), typically parents. During the COVID-19 pandemic, the FSSA allowed parents to receive compensation for care typically covered by visiting nurses, an area that was and still is suffering from staffing shortages.
But after a specially convened meeting to go over a list of several proposed changes to Medicaid, stakeholders and families appeared unhappy with the agency’s explanations and called on the FSSA to halt the cuts.
“What I’ve just heard is that we’re working on further clarification. I’ve heard we’re trying to get information. I’ve heard we’re going to make adjustments. I’ve not heard the data,” Crouch said at the end of the hour-long meeting. “At this point, we’re asking the FSSA to pause the timeline for implementing this program by July 1 until these questions are answered, and we’re asking the General Assembly to assist us and work out how to make that happen.”
Crouch is one of six Republicans running for governor.
Growth of nursing programs
Kelly Mitchell, director of disability and rehabilitation services at the FSSA, acknowledged that the agency has been inundated with calls and emails from concerned families using the program. She said the agency is not responding to them individually but is actively soliciting feedback.
Mitchell examined the FSSA’s decision to analyze the increased demand for key programs behind the $1 billion Medicaid shortfall announced in December, particularly services such as care for the elderly and disabled waivers.
“…Since July (of 2020), we have seen a significant increase in enrollment. In particular, note the difference between the first month, when expenditures were approximately $20 million, and the last month, when expenditures were approximately $120 million,” Mitchell said.
1102 Task Force_Special Meeting_Medicaid 2024 01 29
The growth of pediatric programs has been unexpected, especially in contrast to the state’s aging population, she said.
The increase, from $20 million to $120 million between summer 2020 and December 2023, includes care for all age groups, according to a chart shared by the FSSA.
Child care will reach $2 million around May 2022, when enrollment will be around 1,250. By December 2023, when enrollment will be around 2,250, total care costs will be just under $16 million, less than 13% of total care costs.
But the explosive overall growth isn’t just due to increased use of the long-term care program, which serves fewer than 40,000 Indiana residents, including seniors and people with disabilities. Spending has surged following Medicaid rate hikes enacted by the state Legislature last year, ballooning from just over $60 million in June 2023 to more than $100 million in August of the same year.
This 2% fee index has now been “suspended,” another change announced at the same time as the proposed cuts to LRI services.
“We want to create a sustainable pathway for parents and spouses to support exempt individuals, but going forward, we will support them through structured family caregiving rather than assisted care,” Mitchell said. “This caregiving model is ideally suited to support LRIs, who are legally responsible adults who are being paid to care for their loved ones.”
Mitchell argued that this would benefit Indiana residents because many parents are able to handle complex caregiving tasks but cannot pay LRIs to provide skilled nursing care, and currently parents are “clocking out” from LRI duties to perform tasks such as tracheotomy, catheters and ventilator care.
There are too many unknowns
But Crouch and other members of the task force, which includes lawmakers and disability advocacy groups, pushed back, noting that provider reimbursements for structured care, which range from $77.54 to $133.44 per day, aren’t paid directly to families, which typically amount to about $30 to $70 per day.
Meanwhile, payments to LRIs as caregivers can go up to a “living wage” of $15 an hour, depending on location.
“We’ve had so many comments from families about the shortage of nurses and skilled nursing staff, and they’re telling us they’re paying caregivers because they can’t find nurses to come into their home and provide care,” said Kim Dodson, CEO of The Arc of Indiana.
Asked about staffing shortages, Mitchell said the FSSA is “focused on improving and enhancing our capacity to attract and retain a quality direct service workforce,” but did not offer any further response about families who will need immediate care when LRI benefits expire in July. Families who apply after Jan. 17 will be directed to structured family care, which provides care allowances for adults other than the parents.
I find it almost unacceptable that we are in a situation where the lives of Indiana citizens, the lives of their families and their livelihoods are at risk.
– Lieutenant Governor Suzanne Crouch
Rep. Ed Clare, a Republican from New Albany, said he has tried repeatedly to get details from the FSSA, such as how many households would be affected by the LRI changes or the proposed savings, to no avail. An online release indicates the package would save $300 million overall, but doesn’t break it down by program or provide an estimate of how many households would be affected.
“In terms of transparency, we are waiting days for the figures to be available. I believe the figures should have been available before the FSSA decided to take these specific measures,” Clare said. “Where is the data?”
Mitchell said the FSSA was working to “gather information, share it with the public and be as open and transparent as possible”.
Crouch questioned the budgeting process that overlooked the $1 billion shortfall in Medicaid, saying, “(If) the Legislature had that information, we may have looked at the $1 billion in funding (for the Indiana Economic Development Corporation) differently and the $1 billion in funding for (school) vouchers differently.”
“It’s almost unacceptable that we are in a situation where the lives of Indiana citizens, the lives of their families and their livelihoods are at risk,” Crouch continued.
Reaction from family members
About a half-dozen families gathered again at the state Capitol on Monday, vowing to rally weekly to oppose the FSSA’s proposed changes. They openly wondered whether divorce or removing one parent’s legal guardianship would help them navigate the quagmire of new child support restrictions.
“Before this happened, we were struggling,” said Krista Dooley, whose 4-year-old son, Jacob, has cerebral palsy.
Families rallied at the Indiana State Capitol for the second straight week to protest cuts to Medicaid services that cover the costs for parents who serve as caregivers for children with severe disabilities. (Whitney Downard / Indiana Capital Chronicle)
Dooley, who was recently featured on WTHR, recently upgraded to a larger van so he can fit all the medical equipment Jacob needs. Other parents are relying on the payments to help pay mortgages and fund much-needed accessibility improvements.
Monday’s meeting was held virtually and parents were not given a chance to testify — instead, parents and carers posted their personal stories and anger in a livestream chat box, urging officials to reconsider.
“Increased enrollment and utilization rates show the needs of Indiana families, and we should be looking to meet those needs, not turn our backs on them,” YouTube user Mary McDonald said.
The change would allow friends, neighbors and other family members (including stepparents) to receive pay as caregivers, but not biological or adoptive parents. Parents say the nursing shortage will force many to continue providing unpaid care because they have no other options.
“I’ve already called over 40 organisations and not a single one has staff members, plus I live in the country, which makes it even harder,” said Sarah Saylor, another user.
Get morning headlines delivered to your inbox
subscribe