The Families and Social Services Administration (FSSA) in Indiana is facing a lawsuit filed by parents of children with disabilities over changes to attendant care services. The state agency overseeing Medicaid has decided to stop reimbursing family members or guardians for home care starting July 1. This decision was made as part of a cost-saving plan after underestimating Medicaid expenditures by nearly $1 billion. Families of children who require constant medical attention are particularly affected by this transition, and the lawsuit alleges that the health and well-being of these children are at risk.

The complaint filed in federal court states that the Medicaid payments are crucial for rural families who are far from facilities with trained personnel and for parents who are unable to work while caring for their children. Parents of children with complex medical needs must provide constant care, including tasks such as operating a ventilator, monitoring seizure activity, and administering medications. The FSSA has mentioned that it will assist families in finding alternate care options, but the lawsuit argues that the new reimbursement rates are insufficient. There is concern that some children may end up in an institutional environment if their parents are forced to return to work to afford the necessary care.

The lawsuit is being represented by the American Civil Liberties Union of Indiana, Indiana Disability Rights, and the Indiana Protection and Advocacy Services Commission. Families of children with rare genetic disorders, such as cri-du-chat syndrome, and hypoxic-ischemic encephalopathy, a type of brain damage, are included in the lawsuit. These children require constant monitoring for seizures and other assistance, making it challenging for parents to leave them in the care of others. The lawsuit argues that the risk of being placed in institutions violates the Americans with Disabilities Act, which mandates that services should be offered in people’s homes and communities.

The FSSA has stated that the attendant care services are where the Medicaid program is experiencing unanticipated growth in spending, leading to the decision to no longer reimburse family members or guardians. The agency has proposed to work with families to find alternative care options, but the lawsuit claims that the changes could result in children needing constant medical attention being placed in institutional settings. The lawsuit aims to challenge the new policy and seeks to order the state to continue reimbursing parents and guardians for home care services. This case highlights the complexities faced by families of children with disabilities and the importance of ensuring access to adequate care and support services.

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