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Indiana Disability Rights and the American Civil Liberties Union of Indiana (ACLU) filed a complaint against the state Friday alleging that changes to an attendant care program threaten the safety and well-being of medically complex children.
“Children with medically complex conditions often need near constant care and supervision. Parents and families have for years been able to cobble together a patchwork of services and caregivers, including serving as paid caregivers themselves, to ensure their children have what they need to live safely in the community,” said Melissa Keyes, the executive director at Indiana Disability Rights. “Now, FSSA is throwing a wrench in those plans without ensuring there are appropriate alternatives available.”
Indiana’s Family and Social Services Administration (FSSA) previously allowed parents to be paid hourly wages as Legally Responsible Individuals through an attendant care program. In January, after the agency said ballooning program costs contributed to a nearly $1 billion Medicaid forecasting error, FSSA said it would transition families to Structured Family Caregiving.
That change would pay families a per diem below what what they received under the attendant care program. Under the latter, families had few guardrails on payments and FSSA said some parents charged more than 100 hours weekly. But families said they had few options with a shortage of other health care providers to fill the gaps.
Families must transition by July 1. Prior to the announced change, no Structured Family Caregiving providers offered the type of pediatric services needed to cover the roughly 1,600 children who will be impacted.
In a statement, Kim Dodson, the CEO of disability advocacy organization The Arc of Indiana, praised the filing.
“The Arc of Indiana greatly appreciates IDR and ACLU of Indiana for taking this critical action. Part of IDR’s mission is to uphold and advance the rights of individuals with disabilities. This effort to protect medically complex children is critical to their ability to continue to live safely at home with their family. We support and applaud their efforts,” Dodson said.
Plaintiff details
Friday’s lawsuit was filed on behalf of two children with complex medical needs served under the Aged & Disabled Waiver attendant care program. That waiver will split into the Health & Wellness Waiver for disabled Hoosiers and PathWays to Aging for elderly Hoosiers as of July 1.
One six-year-old child — from Mitchell, in southern Indiana — has cri-du-chat syndrome, a rare genetic disorder. Due to his syndrome, E.R. has chronic lung disease, severe respiratory issues and epilepsy. In addition, he is partially deaf, partially blind, non-verbal and non-ambulatory.
His wasn’t able to find a long-term provider “capable and willing to provide care.” One nurse lasted six months before moving out of state.
“… E.R. is currently approved (and has been approved for some time) to receive 40 hours each week in skilled nursing services, even though he does not actually receive these services,” the filing reads.
The family’s case manager suggested his mother register to provide services instead in 2022. His older sister, now 19, also provides attendant care hours “during the nighttime hours to allow (the mother) to sleep” but would like to stop so she could attend college “… or otherwise start her adult life.”
The mother currently is reimbursed for 112 hours of attendant care while the sister is paid for 56 hours each week.
The other child, a 10-year-old boy, also receives full-time care from his mother. G.S. has hypoxic-ischemic encephalopathy, a type of brain damage that affects the central nervous system.
His family, which includes three minor siblings, moved from Kentucky to Indiana to be closer to Riley Hospital for Children in Indianapolis. The hospital performed open heart surgery to repair a defect and stop blood from leaking into his lungs.
However, the prior damage means that G.S. has chronic lung disease in addition to Lennox-Gastaut syndrome, which is characterized by repeated seizures. He is also nonverbal and deaf.
He is approved to receive 80 hours of care but his old nurse also moved out of state. His mother “made the difficult decision” to place him in one of the state’s two pediatric nursing homes for several months in 2020.
“Unfortunately, this placement proved to be a horrendous experience,” the suit states.
The family states that his quality of life suffered and the mother was concerned that staff were unprepared to care for G.S. She also worried about neglect and abuse.
Attendant care allowed the family to live independently together, rather than living with an adult roommate. The mother gets paid for 86 hours each week and gets nine hours of respite care — the time when she can grocery shop or run errands and still have others care for G.S.
Both families say that attendant care is their only source of income, since caring for their children keeps them from seeking outside employment. Each say that Structured Family Caregiving wouldn’t be enough to keep their basic needs met.
Grounds for the case
The 34-page complaint, filed in the federal Southern District of Indiana court in Indianapolis, cites a groundbreaking U.S. Supreme Court ruling as a basis for their claim — the Olmstead v. L.C. (1999) decision said people with disabilities should be in the least restrictive treatment settings possible. Without attendant care, the suit said, plaintiffs will be forced to turn to institutionalized care.
“The Americans with Disabilities Act and the Olmstead decision are clear: children with disabilities deserve the opportunity to live and thrive in their communities, not be forced into institutions,” said Gavin Rose, a senior staff attorney with the ACLU. “We are committed to ensuring these children can remain safe and healthy at home with their families.”
The suit alleges that FSSA failed to ensure that round-the-clock and medically necessary care was available in communities, “paper(ing) over” the shortcoming by allowing parents to fill in as providers for unskilled tasks like dressing and bathing.
Previously, FSSA said it didn’t currently have the authority under its federal waiver to continue paying parents through its attendant care program. Structured Family Caregiving would divide families into three tiers of care, each with a set per diem payment.
“This policy not only ignores the critical needs of these medically complex children, but it also disrespects the incredible dedication of their parents who have become experts in caring for their unique situations,” said Tom Crishon, Legal Director at Indiana Disability Rights. “We are filing this lawsuit to ensure these children can continue to receive the care they need in their homes and communities.”
The Indiana Capital Chronicle is an independent, not-for-profit news organization that covers state government, policy and elections.
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