May 17, 2024
FOR IMMEDIATE RELEASE
Media Contact:
Michelle Wickham, 317-419-7595, mwickham@indianadisabilityrights.org
Joel Weyrauch, 317-217-0298, media@aclu-in.org
Lawsuit challenges policy that deprives Hoosier children with medically complex disabilities of essential support
INDIANAPOLIS – Indiana Disability Rights (“IDR”) and ACLU of Indiana filed a federal complaint today challenging the Indiana Family and Social Services Administration’s (“FSSA”) changes to the Aged and Disabled Medicaid Waiver Program (“A&D Waiver”) that threaten the safety and well-being of medically complex children. The policy change will prohibit parents of children from serving as paid providers of “attendant care” services through the waiver program. The lawsuit alleges that FSSA’s policy change, set to take effect on July 1, 2024, will deny these medically complex children access to the critical in-home care they need, putting them at risk for institutionalization.
“Children with medically complex conditions often need near constant care and supervision. Parents and families have for years been able to cobble together a patchwork of services and caregivers, including serving as paid caregivers themselves, to ensure their children have what they need to live safely in the community,” said Melissa Keyes, Executive Director at Indiana Disability Rights. “Now, FSSA is throwing a wrench in those plans without ensuring there are appropriate alternatives available.”
The lawsuit filed today in federal district court in Indianapolis is brought by two minor A&D Waiver participants with complex medical needs who receive attendant care from their mothers, and the Indiana Protection and Advocacy Services Commission. This lawsuit asks the court to direct FSSA to ensure that the state provides the care necessary for medically complex individuals to remain in the community. Plaintiffs say relief is urgently needed to both named plaintiffs and hundreds of similarly situated Hoosiers. The lawsuit argues that FSSA’s actions violate the Americans with Disabilities Act’s integration mandate, the Rehabilitation Act, and numerous Medicaid rules, including choice of services provisions.
"The Americans with Disabilities Act and the Olmstead decision are clear: children with disabilities deserve the opportunity to live and thrive in their communities, not be forced into institutions," said Gavin Rose, Senior Staff Attorney at ACLU of Indiana. "We are committed to ensuring these children can remain safe and healthy at home with their families."
“This policy not only ignores the critical needs of these medically complex children, but it also disrespects the incredible dedication of their parents who have become experts in caring for their unique situations,” said Tom Crishon, Legal Director at Indiana Disability Rights. “We are filing this lawsuit to ensure these children can continue to receive the care they need in their homes and communities.”
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Indiana Protection and Advocacy Services (IPAS) Commission oversees the work of Indiana Disability Rights. Indiana Disability Rights (IDR) is the designated Protection and Advocacy System and Client Assistance Program for the State of Indiana. IDR’s mission is to uphold, promote, and advance the rights of individuals with disabilities through empowerment and advocacy to achieve a more equitable society. For more information, visit www.IndianaDisabilityRights.org.
ACLU of Indiana is the state’s guardian of liberty, working daily to defend and preserve the individual rights and liberties guaranteed by the Constitutions and laws of the United States and Indiana. Using education, advocacy, and litigation, we work to protect the rights of all and to extend rights to communities that have historically experienced injustice in the U.S., including Native Americans and other people of color, women, LGBTQ+ individuals, prisoners, people with disabilities, and the indigent. We are nonprofit and nonpartisan, and we never charge for our services. Member dues and contributions and grants from private foundations and individuals pay for the work we do.