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Gavel and Scales of Justice

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INDIANAPOLIS – Families of several medically complex children filed a federal lawsuit Friday seeking to block planned changes to Indiana’s attendant care program.

Filed on behalf of two families with children who have multiple severe medical problems, the lawsuit asks a federal judge to block the Family and Social Services Administration (FSSA) from making parents ineligible to take part in the attendant care program beginning July 1.

“FSSA has failed in its duty under federal Medicaid law to ensure that the individual plaintiffs and (Indiana Protection and Advocacy Services’) other constituents receive skilled services that are necessary to ensure that their medical needs are met and that they are able to continue residing safely and securely in the community,” attorneys wrote.

The filing marks the latest twist in the controversy surrounding the attendant care program. The program provides reimbursement for people who care for medically complex individuals. Under the attendant care program, Medicaid service provider agencies are reimbursed at a rate of a little over $34 per hour and split that amount with the people who provide care to the patients themselves. Currently, parents can receive reimbursement under the program. Beginning July 1, parents will instead have to enroll in the structured family caregiving program, which reimburses at a rate of at most $133 per day. Parents would have to turn over day-to-day care for their children to a nurse or other practitioner if they want to continue using the attendant care program.

Families of medically complex children have lobbied for months to prevent the change from moving forward. Parents told News 8 earlier this year the attendant care program has allowed them to provide 24-hour care to their children while still supporting their family. Many have said turning over day-to-day care to a nurse doesn’t work because their children often require live-in care and they would have to retrain personnel on their children’s needs if a nurse left for another job.

The lawsuit claims FSSA violated the Americans with Disabilities Act because the agency’s actions would effectively force parents to institutionalize their children. The plaintiffs also say the FSSA’s rule prohibiting users of the structured family caregiving program from using attendant care services is a denial of medically-necessary care.

FSSA officials said the agency does not comment on pending litigation.