Parents of two disabled children are suing an Indiana agency in federal court over modifications to attendant care services, claiming they violate the Americans with Disabilities Act and federal Medicaid requirements.
For years, a state body that oversees Medicaid has reimbursed parents, guardians, and spouses for in-home care.
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Beginning July 1, the state will no longer repay family members and guardians. The Family and Social Services Administration, or FSSA, underestimated Medicaid spending through July 2025 by about $1 billion, prompting the proposal of the modifications as part of a cost-cutting strategy.
Families of children who require regular medical attention, in particular, believe the transfer was mishandled. The complaint asserts that the state’s actions jeopardize the health and well-being of children, and it requests a court order to continue paying parents and guardians.
The Friday-filed complaint stated, “This is a legally complex case about medically complex children.”
An FSSA spokeswoman did not immediately respond to an email request for comment. The state has stated that attendant care services are where the Medicaid program is “most acutely seeing an unanticipated growth in spending.”
In the action, the American Civil Liberties Union of Indiana and Indiana Disability Rights represent the families, as well as the Indiana Protection and Advocacy Services Commission.
Since their initial announcement in January, families of children with complex medical requirements have voiced their opposition to the modifications. According to the complaint, Medicaid payments benefit rural families who live far from skilled worker institutions and are a financial need for parents who are unable to work while caring for their children.
The complaint states that parents must give constant care, which includes feeding through a gastronomy tube, running a ventilator, monitoring seizure activity, and administering medications.
The FSSA has stated that it will work with families to locate alternative care options; nonetheless, the complaint claims that the increased reimbursement rates are insufficient.
The complaint states that the modifications may lead to the placement of some children who require regular medical attention in a “institutional environment,” especially if their parents return to work to finance the care. According to the lawsuit, parents of children with such difficulties frequently want to care for their children directly in order to meet their individual needs.
The moms listed in the complaint care for a 6-year-old boy with a rare genetic illness called Cri-du-chat syndrome and a 10-year-old with hypoxic-ischemic encephalopathy, a type of brain injury.
According to the lawsuit, both children have routine seizures that require constant monitoring in addition to various forms of support. A pediatric nursing home admitted the 10-year-old, leading to a “horrendous experience.”
According to the complaint, the Americans with Disabilities Act requires state and municipal governments to provide services in people’s homes and communities, not in institutions.
