INDIANAPOLIS – Parents of two children with disabilities are suing an Indiana agency in federal court over changes to care services that they say violate the Americans with Disabilities Act and federal Medicaid laws.
A state agency that has overseen Medicaid for years reimburses parents, guardians and spouses for home care.
Starting July 1, the state will no longer reimburse family members or guardians. The changes were proposed as part of a cost-cutting plan after the agency — the Family and Social Services Administration or FSSA — understated its Medicaid spending through July 2025 by nearly a billion dollars.
Especially families of children who require constant medical attention say that the transition is poorly managed. The lawsuit alleges that the children’s health and well-being are at risk and asks the court to order the state to continue reimbursing parents and guardians.
“This is a legally complex case about medically complex children,” said the complaint filed Friday.
An FSSA spokesperson did not immediately respond to an emailed request for comment. The state said care services are where the Medicaid program is “most acutely seeing unanticipated growth in spending.”
The American Civil Liberties Union of Indiana and Disability Rights of Indiana are representing the families and the Indiana Advocacy and Protective Services Commission in the lawsuit.
Families of children with a range of complex medical needs have spoken out against the changes since they were first proposed in January. The complaint says Medicaid payments help rural families who are far from facilities with trained staff and are a financial necessity for parents who cannot work while caring for their children.
Parents must provide constant care, including gastronomic tube feedings, operating a ventilator, monitoring seizure activity and administering medications, the complaint says.
FSSA has said it will work with families to find alternative care options, but the lawsuit alleges the new reimbursement rates are not sufficient.
The complaint states that the changes could result in some children who need constant medical attention being placed in an “institutional setting,” especially if their parents need to return to work to pay for their care. Direct care for your child to meet their individual needs.
The mothers named in the lawsuit care for a 6-year-old boy with a rare genetic disease called cri-du-chat syndrome and a 10-year-old boy who has hypoxic-ischemic encephalopathy, a type of brain damage.
According to the lawsuit, both children have routine seizures that require constant monitoring, in addition to other assistance. The 10-year-old was admitted to a pediatric nursing home for a period of time, but had a “horrible experience.”
The lawsuit claims that the risk of being placed in institutions violates the Americans with Disabilities Act’s requirement that state and local governments provide services in people’s homes and communities.
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