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Attorneys trying to preserve attendant care services for two Hoosier families appeared before U.S. District Court Judge Tanya Walton Pratt on Tuesday, urging her to order an injunction that would halt their transition to structured family care.
An injunction would apply only to the two families named in the suit, though it’s possible the injunction could be expanded in the future. The family members of E.R. and G.S. are the only two families in the state still receiving attendant care payments as legally responsible individuals while roughly 1,600 other families have moved away from the program.
As part of legal proceedings, the families would get payments for attendant care services from the Family and Social Services Administration (FSSA) until Sept. 1, though other families transitioned on July 1. Pratt, a federal judge for the Southern District of Indiana, said she would issue a ruling by the end of the month.
The families, represented by Gavin Rose of the American Civil Liberties Union of Indiana, argued that both medically fragile children require 24/7 care due to rare health complications and that other available services don’t meet that need.
Rose said that without that care, families would be forced to seek institutionalization — which would violate the U.S. Supreme Court’s 1999 decision in Olmstead, specifying that people with disabilities should be in the least restrictive setting possible.
“If (mothers Jessica) Carter and (Heather) Knight are not allowed to continue providing care services, they will be forced to return to work outside of their homes to support their families,” Rose said. “Because they cannot leave their children with another … not trained to meet their children’s medical needs — and because they do not have the sort of nursing services capable of meeting those needs — they will have no other option…”
Harmony Mappes — an attorney with Faegre Drinker Biddle & Reath, the firm retained by the state — said Indiana erred in granting attendant care payments to legally responsible individuals and allowing payments to continue wouldn’t be “fiscally sustainable.”
“What plaintiffs are asking for does not exist. We acknowledge that it was approved, previously. That should not have happened,” Mappes said. “… there’s nothing in the Medicaid framework that allows these two mothers to be paid a different rate than everybody else.”
Additionally, while the state acknowledged the children’s health issues, it said that adequate services existed to avoid institutionalization.
Arguments from both parties
The structured family caregiving program pays at a lower rate than attendant care, which families say diminishes their quality of life. But the state reports that some families made six figures under the attendant care program, which had few restrictions on the number of hours claimed.
Legally responsible individuals — usually parents, but sometimes spouses — were hired by outside home health agencies and reimbursed by the state under the previous version of the attendant care program. Agencies kept a portion of the funding.
The state argued that the families in this case were questioning their reimbursement rate, something the court shouldn’t weigh in on. Mappes said that the families in this case had “no incentive to actively pursue other arrangements or other providers when they are currently receiving roughly a six-figure salary to be a paid caregiver” — a claim Rose refuted.
“This case is not about money,” Rose said, adding that he didn’t know the amount families earned.
Rather, he said it was about the state’s failure to provide other options, leaving family members as “the only persons who are capable of providing care.”
One of the children had a serious seizure months ago and stopped breathing, only to be revived by his mother’s intervention. The child “would not be here today if he was in the care of anyone else,” Rose said.
Additionally, local school districts for the children indicated they didn’t have the nursing services available to provide care during the day.
But Mappes said that attendant care, by design, isn’t supposed to provide the skilled nursing care that plaintiffs need. Rather, attendant care pays for caregiving tasks like bathing and feeding — not the administration of medication or tasks related to being fed through gastrostomy tubes, the latter of which both children have.
“It would be like saying, ‘I really need someone who is a licensed pilot to pilot an airplane, but I’m going to ask the court to provide me with someone licensed to drive an automobile. Surely, this court should not enter an order requiring the state to pay the driver to fly the plane,” Mappes said.
But Indiana has a shortage of skilled nurses to provide that care. During the pandemic, the state expanded its attendant care program recognizing this shortage — only to pull back after costs ballooned, contributing to the state’s projected $1 billion budget shortfall for Medicaid services.
Rose said that costs could be otherwise mitigated.
“The state’s projections assume that every single person receiving services from their (legally responsible individual) will continue to do so — that has never been our position,” Rose said. “… The state’s failures (to provide services) are papered over by the fact that our clients’ mothers, and many others like them, have been willing to provide care.”
He said families with a second income source, another parent or in other circumstances might be able to weather the transition to structured family care.
Majority of families have transitioned to Structured Family Caregiving
Attendant care services provided by other family members, such as aunts or uncles, and family friends are still covered by the state. Mappes said that 68% of the roughly 1,600 families previously using attendant care to care for minor children had transitioned to structured family caregiving and that others had found alternative solutions.
It is unknown if any of the other families have opted to place their medically frail children into one of the state’s two licensed pediatric nursing homes — which are located in Shelbyville and Logansport. Other families, especially ones who have banded together to lobby the state, have reported issues with the FSSA’s transition, saying families were being “forced to accept care that falls far short of the quality their loved ones deserve.”
“While every situation, like every person, is unique, all of these (families) are similarly situated in that all of the children that we’re talking about all meet nursing facility level of care. This means they have a substantial or complex medical leave that’s required to be eligible for this waiver in the first place and they have all transitioned to this new program,” Mappes said. “… we think, like the rest of the waiver population, that plaintiffs will be able to find services in the existing Medicaid plan that meets their needs.”
Though the preliminary injunction only applies to the two families, Mappes said others could join and the two exceptions don’t fit in the existing Medicaid framework. Offering attendant care to families like the plaintiffs was a fiscal concern and FSSA had to revisit its approval process and service plans, Mappes said.
“Are these two plaintiffs different from everyone else?” Mappes asked. “The court should not create a new service for these individuals … there are services that are available to them that they can utilize; let’s see what happens. They should be able to find services that meet their needs like everyone else.”
Because all other waiver recipients are getting that same category of services, an Olmstead claim shouldn’t apply, she argued.
Arguing that the state can’t provide such attendant care because it isn’t in its current waiver, which can be amended, amounts to a circular argument, Rose responded. Additionally, families were on waiting lists with nursing agencies for services, he said.
“The question is: do we have services available to us that will enable a trained or skilled caregiver to be there when my client’s mothers return to work?” Rose asked. “The answer to that — despite the fact that the state keeps saying, ‘We’ll figure something out’ — is no. I think if either of my client’s parents were here today, they would tell you that the state can’t understand what they’re doing because they’re the only ones who can do it.”
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