Indiana families are suing their Medicare for the recent drastic benefit cuts that affect disabled children.
Two Indiana families are taking a state agency to federal court, alleging changes to Medicaid reimbursements violate the Americans with Disabilities Act and jeopardize their children's health.
The lawsuit, filed against the Family and Social Services Administration (FSSA), challenges a new policy that will cease payments to family caregivers starting July 1, a move aimed at addressing a $1 billion budget shortfall.
Indiana Families Fight for Reimbursement Continuity
For years, the FSSA has reimbursed parents, guardians, and spouses for providing home care services to children with disabilities.
However, a sudden policy shift will soon halt these payments. The decision comes as part of a cost-saving initiative after the agency significantly underestimated its Medicaid expenses through July 2025.
The lawsuit argues that the discontinuation of reimbursements puts children who require constant medical attention at severe risk. This is a legally complex case about medically complex children, states the complaint filed last Friday.
The plaintiffs seek a court order to compel the state to continue payments to family caregivers.
The American Civil Liberties Union of Indiana and Indiana Disability Rights, along with the Indiana Protection and Advocacy Services Commission, represent the affected families.
Despite requests for comment, the FSSA has remained silent. The state has previously indicated that attendant care services have seen the most unexpected growth in spending within the Medicaid program.
Impact on Rural and Low-Income Families
Families of children with severe medical needs have vocally opposed the changes since their proposal in January.
The lawsuit emphasizes the crucial role Medicaid payments play for rural families who lack access to facilities with trained personnel.
For many parents, the reimbursements are essential as they are unable to work while caring for their children.
The complaint details the extensive care these children require, including gastronomy tube feedings, ventilator operation, seizure monitoring, and medication administration. The FSSA has suggested it will help families find alternative care options, but the lawsuit argues that new reimbursement rates fall short.
The changes could force children needing constant medical attention into institutional care if their parents must return to work. The plaintiffs contend that parents often prefer to provide care themselves to meet their children's unique needs, rather than rely on institutional settings.
Legal and Human Implications
The mothers named in the lawsuit care for a 6-year-old boy with cri-du-chat syndrome and a 10-year-old girl with hypoxic-ischemic encephalopathy, a type of brain damage.
Both children experience frequent seizures requiring continuous monitoring and other intensive care. The 10-year-old previously endured a horrendous experience in a pediatric nursing home, underscoring the plaintiffs' desire to keep their children at home.
According to the lawsuit, the new policy risks violating the ADA's requirement for state and local governments to offer services in home and community settings.
The families argue that the state's failure to provide adequate support infringes upon their rights and those of their children.
As the case progresses, it highlights the broader issue of how Medicaid policies impact vulnerable populations, particularly children with disabilities. The outcome could set a precedent for how states balance budgetary constraints with the needs of their most vulnerable residents.
