The Indiana Disability Rights Association and the American Civil Liberties Union of Indiana (ACLU) filed a complaint against the state on Friday, alleging that changes to the care program threaten the safety and welfare of medically complex children.
“Children with medically complex conditions often require near-constant care and supervision, and for years parents and families have pooled together a variety of services and caregivers, including paid caregivers themselves, to ensure their children have what they need to live safely in the community,” said Melissa Keyes, executive director of the Indiana Disability Rights Coalition. “Now the FSSA is disrupting those plans without ensuring that appropriate alternatives are in place.”
Indiana’s Family and Social Services Agency (FSSA) previously allowed parents to be paid an hourly rate as legally responsible individuals through its assisted care program. In January, the agency announced it would transition families to structured family care after it said ballooning program costs contributed to nearly $1 billion in Medicaid projection errors.
The changes mean families will be paid less than the per diem they received under the long-term care program, which had few limits on how much families could be paid, and the FSSA said some parents were billing for more than 100 hours a week. But families say they have few options, with a shortage of other providers to fill the gap.
Families have until July 1 to transition. Prior to the announced changes, there were no structured family care providers offering the kind of pediatric services needed to cover the roughly 1,600 children affected.
Kim Dodson, CEO of the disability advocacy group Arc of Indiana, applauded the motion in a statement.
“The Arc of Indiana is deeply grateful to IDR and the ACLU of Indiana for taking this important action. Part of IDR’s mission is to advocate for and advance the rights of people with disabilities. This work to protect medically complex children is essential so they can continue to live safely at home with their families. We support and applaud their efforts,” Dodson said.
Plaintiff Details
Friday’s lawsuit was filed on behalf of two children with complex medical needs under the Elderly and Disabled Exempt Caregiving program, which, effective July 1, is being split into a Health and Wellness Exemption for Indiana residents with disabilities and a Pathways to Aging for older Indiana residents.
Families encouraged by recent FSSA changes regarding care transitions
The 6-year-old boy from Mitchell, Indiana, suffers from a rare genetic disorder called crying syndrome, which causes chronic lung disease, severe respiratory problems, and epilepsy. In addition, he is partially deaf, partially blind, non-verbal, and non-ambulatory.
He was unable to find a long-term provider “able and willing to provide care”; one nurse worked for six months before moving out of state.
“…the ER is currently approved (and has been for some time) to receive 40 hours of skilled nursing services per week, yet is not actually receiving these services,” the application states.
The family’s case manager suggested they enroll their mother to provide services on their behalf in 2022. Her sister, now 19, also provides support services “at night so (her) mother can sleep,” but wants to leave caregiving to attend college or “start her adult life.”
Currently, her mother is compensated for 112 hours of care per week and her sister is paid for 56 hours per week.
The other child, a 10-year-old boy, is also in his mother’s full-time care. GS has hypoxic-ischemic encephalopathy, a type of brain damage that affects the central nervous system.
His family, including three minor siblings, moved from Kentucky to Indiana to be closer to Riley Hospital for Children in Indianapolis, which performed open-heart surgery to repair the defect and stop blood leaking into his lungs.
However, due to the previous injuries, GS has Lennox-Gastaut syndrome, which causes recurring attacks, as well as chronic lung disease. He is also non-verbal and has a hearing impairment.
In January, families rallied for the second straight week at the Indiana State Capitol 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)
He is entitled to 80 hours of care, but the nurse who was previously caring for him also moved out of state, and his mother “made the difficult decision” to place him in one of the state’s two pediatric care facilities for several months in 2020.
“Unfortunately, this placement proved to be a terrifying experience,” the lawsuit states.
The family said his mother was worried that GS’s quality of life was declining and that staff were not prepared to care for him, and they also had concerns about neglect and abuse.
The care service allowed the family to live independently together, rather than with adult roommates, and the mother receives 86 hours of pay each week, allowing her to receive 9 hours of respite care, during which she can do grocery shopping, run errands, and have someone else care for GS.
Both families say caregiving is their only source of income because they are unable to look for work outside the home due to the care of their children, and both families say structured family caregiving alone is not enough to meet their basic needs.
Grounds for action
The 34-page complaint, filed in the U.S. District Court for the Southern District of Indiana in Indianapolis, cites a landmark U.S. Supreme Court decision, Olmstead v. LC (1999), as the basis for their argument. The ruling states that people with disabilities should be placed in the least restrictive therapeutic environment possible. Without aides, the lawsuit says, the plaintiffs would have to rely on institutional care.
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“The Americans with Disabilities Act and the Olmstead decision are clear: children with disabilities should have the opportunity to live and thrive in their communities, not be forced into institutions,” said ACLU Senior Attorney Gavin Rose. “We are committed to keeping these children safe and healthy at home with their families.”
The lawsuit alleges that the FSSA “covered up” its shortcomings by failing to ensure medically necessary care was available locally around the clock and by allowing parents to perform unskilled tasks such as dressing and bathing.
The FSSA has previously said it does not currently have the authority under the federal exemption to continue making payments to parents through the care program. Structured family care divides families into three levels of care, each with a set per diem payment amount.
“This policy not only ignores the critical needs of these medically complex children, but also the incredible dedication of their parents who have become experts in caring for their unique circumstances,” said Tom Crishon, legal director for the Indiana Disability Rights Coalition. “We are filing this lawsuit to ensure these children can continue to receive the care they need in their homes and communities.”
01 – Complaints
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