INDIANAPOLIS (AP) — Parents of two children with disabilities are suing an Indiana agency in federal court, accusing it of violating the Americans with Disabilities Act and federal Medicaid law.
For years, state agencies that oversee Medicaid have reimbursed parents, guardians and spouses for in-home care costs.
The state will stop reimbursing families and guardians starting July 1. The change was proposed as part of a cost-cutting plan after the state Family and Social Services Administration (FSSA) underestimated Medicaid spending by nearly $1 billion through July 2025.
Families of children who require constant medical care, in particular, say the transition hasn’t been handled properly. The lawsuits argue that the health and well-being of the children is at risk, and they ask the court to order the state to continue paying compensation to parents or guardians.
“This is a legally complex case involving medically complex children,” the complaint filed Friday states.
A spokesman for the FSSA did not immediately respond to an emailed request for comment. The state said nursing care services is the area in which the Medicaid program is “experiencing the steepest unexpected expenditure increases.”
The American Civil Liberties Union of Indiana and Disability Rights Association of Indiana are representing the families and the Indiana Protective and Advocacy Services Commission in the lawsuit.
Families of children with a variety of complex medical needs have spoken out against the change since it was first proposed in January, arguing in complaints that Medicaid payments would help rural families far from facilities with trained staff and are a financial necessity for parents who can’t work while caring for their children.
According to the lawsuit, the parents must provide ongoing care, including feeding the child through a gastric tube, operating the ventilator, monitoring for seizures and administering medication.
The FSSA says it will work with families to find alternative care options, but the lawsuit argues the new reimbursement rates aren’t enough.
The lawsuit says the changes could result in some children who need constant medical care being placed in “institutional settings,” especially if their parents have to go back to work to pay for the care. Parents of these children often prefer to care for their children in person, depending on their individual needs, the lawsuit says.
The mothers named in the lawsuit care for a 6-year-old boy with a rare genetic disorder called crying syndrome and a 10-year-old boy with hypoxic-ischemic encephalopathy, a type of brain damage.
The lawsuit alleges that both children suffer from regular seizures and require constant supervision in addition to other assistance, and that the 10-year-old was briefly placed in an orphanage where he said he had a “horrific experience.”
The lawsuit argues that the risks of institutionalization violate the Americans with Disabilities Act, which requires state and local governments to provide services in people’s homes and communities.