The last two parents of medically fragile children receiving state payments for attendant care will transition to Structured Family Caregiving with everyone else following a Friday court ruling. But the federal judge presiding over the attendant care lawsuit ruled that FSSA must “arrange” for families to receive in-home skilled nursing services on top of that program.
During a court hearing in August, the American Civil Liberties Union of Indiana argued on behalf of the Indiana Protection and Advocacy Services Commission and two medically frail children that families needed more services than what the SFC program provides. Prior to July 1, the state paid parents as Legally Responsible Individuals for attendant care provided to their children, a form of unskilled care that includes feeding, bathing and more.
Attorneys representing the state said Indiana erred in allowing parents to participate in that program, which supporters say pays a “living wage” instead of the flat, per diem amount granted under SFC.
Late Friday, U.S. District Court Chief Judge Tanya Walton Pratt issued a preliminary modified injunction which would transition the families to SFC and away from attendant care. However, the state was instructed to “take immediate and affirmative steps” to arrange in-home skilled nursing services to both families.
In August’s hearing, all parties acknowledged a statewide nursing shortage that made such services difficult to obtain. It wasn’t immediately clear how the two children at the heart of the suit would obtain that care following Friday’s ruling.
Timeline and relevant details
The Family and Social Services Administration, which oversees the state’s administration of Medicaid programs, expanded its waiver program for attendant care to include legally responsible individuals — often parents but occasionally spouses. Such family members could provide unskilled care and be reimbursed by the state through a participating home health agency for the first time.
The families of over 1,600 children signed up for the program, which did not include guardrails like a cap on hours or payments and some families had more than one person participate as an LRI. Payments for some care exceeded $100,000 for one child, of which providers took a portion.
In December, FSSA revealed a shortfall of nearly $1 billion and later implemented various cost-cutting measures, including a plan to transition families from attendant care to Structured Family Caregiving. Families repeatedly rallied at the Statehouse, saying that SFC didn’t pay enough money to caretakers and petitioning lawmakers for relief.
In the Friday ruling, Pratt notes that attendant care was reimbursed at $34.36 per hour, of which 60% or less — $20.62 and under — went to families, depending on the home health agency. Comparatively, SFC pays between $77.54 and $133.44 per day, of which families receive between 65-70%, or between $50.40 and $93.41.
The General Assembly added some oversight requirements for the state agency earlier this year but ultimately allowed the transition plan to succeed.
The SFC transition would occur as FSSA resigned its waiver program, splitting the former Aged and Disabled Waiver into a Health and Wellness Waiver for the state’s disabled population and a PathWays for Aging Waiver for those aged 60 and older. Both changes occurred on July 1 with the exception of the two families who sued for relief.
The families of E.R. and G.S., the minors at the heart of the lawsuit, claimed in court that the substantial care needs of their sons necessitate round-the-clock care. E.R. has cri-du-chat syndrome, a rare genetic disorder, which is related to several of his other diagnoses and symptoms, including chronic respiratory issues, epilepsy, partial deafness and partial blindness.
G.S. has hypoxic-ischemic encephalopathy, a type of brain damage that affects the central nervous system, as well as Lennox-Gastaut syndrome and a severe form of dysautonomia. He has routine seizures as well as cardiac and respiratory issues.
Both children also use gastronomy tubes to eat. Due to their care needs, families worry they would need to be institutionalized if their mothers weren’t paid to provide their care because the parents — who are the sole caregivers — would need to secure outside employment.
Both families testified about their unsuccessful efforts to secure staffing for the hours they already had approval for under the Medicaid waiver. It is unclear how the two boys will get access to nursing services following the judge’s ruling, which was acknowledged in Friday’s filing.
Pratt, the federal judge, concluded that, “Looking at the factors presented by (plaintiffs) and the history of services FSSA has actually provided to the Individual Plaintiffs, as a result of FSSA’s changes … E.R. would lose 112 hours a week of services from a trained provider, and G.R. would lose 84 hours a week of services.
“The loss of these services is sufficient to show that the Individual Plaintiffs are at serious risk for institutionalization.”
More from the ruling
Pratt’s ruling includes a requirement for FSSA to “arrange” in-home skilled nursing services for E.R. for a minimum of 40 hours per week and for G.S. for a minimum of 80 hours per week.
“It is not enough for the Individual Plaintiffs’ needs to be met eventually; they would need to be met immediately following this Court’s ruling,” Pratt continued. “It is undisputed that there is a nurse shortage in Indiana and that nurses are unable to provide skill(ed) nursing services for the number of hours G.S. and E.R. are approved for…”
Pratt concluded that if an injunction were denied and both parents returned to work, “there would be no one to provide” the care required for G.S. and E.R. The decision to modify the injunction protects the access to Medicaid services for everyone else, Pratt said, rather than granting the preliminary injunction initially sought by plaintiffs. Granting an injunction that allowed plaintiffs — and potentially other families — to utilize attendant care as used under the Aged & Disabled Waiver would violate the state’s waiver plan filed with the federal government and could potentially jeopardize funding.
However, Pratt notes that such a violation only occurred because FSSA didn’t include such a program under its waivers. Notably, other states allow families to access attendant care, but have limits on hours claimed and payments and definitions for “extraordinary” levels of care.
“The possibility of a permanent injunction is strong. A permanent injunction would not violate Medicaid law because FSSA could be required to outline criteria for extraordinary versus ordinary care,” Pratt said.
Pratt additionally dismissed budget concerns from FSSA, noting that if families could find a more distant relative to provide attendant care then costs for the agency would be the same.
“Alternatively, if the mothers are unable to find a non-Legally Responsible Individual provider of (attendant care) and rely solely on the in-home nursing service they have been approved for, the cost to the State would be almost identical…,” Pratt said. “Moreover, if the State is unable to find a nurse to provide services and the Individual Plaintiffs need to be institutionalized, that would certainly come at a greater expense to the State.”
More than two thirds, or 68%, of families previously utilizing attendant care moved to SFC, though some secured someone else — such as an aunt or uncle — to provide attendant care. Other families rely on a combination of other services, such as home health aides and respite care.
By Whitney Downard — The Indiana Capital Chronicle is an independent, not-for-profit online news organization that covers state government, policy and elections.
