For the 12,000 on Medicaid waitlists, advocate says keep and track consistent contact with FSSA

Thousands of Hoosiers continue to wait for home- and community-based services through Medicaid. One advocate says families should keep consistent contact with the state while they wait.

More than 12,000 Hoosiers are still on waitlists for the Pathways and the Health and Wellness waivers. Indiana implemented the waitlists as a part of its response to the $1 billion Medicaid forecasting error in 2023.

Kim Dodson, CEO of the Arc of Indiana, said one of the most important things people can do is keep in contact with the Family and Social Services Administration.

“Make sure that you are on that waiting list,” Dodson said. “You should be making contact with them at least every three months. If anything in your life changes, contact them.”

READ MORE: How do I join Health and Wellness, Pathways Medicaid waiver waitlists? Here’s what you need to know

In addition, Dodson said keeping track of that communication is vital.

“Make sure that you are keeping a record of everything, every piece of communication you get from the state,” Dodson said. “Start a binder, whether that's an electronic one or a physical one.”

Dodson said this provides people with proof of communication if something were to go wrong. She also said there are a lot of resources and groups available to lend support so families don’t have to go through this alone.

“Sometimes families just need to vent and share their frustration,” Dodson said. “Hopefully you can learn from other families who have experienced similar things and get some guidance there.”

READ MORE: FSSA launches Medicaid waiver waitlist dashboard, lawmakers want more information from the agency
 

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By building these networks of other families and advocacy groups, Dodson said people can determine what other resources are available for them to use while they wait for these Medicaid waiver services. She said families can also help maintain conversations around what is happening with the waitlists.

“There are conversations taking place about lawsuits and suing the state because of this,” Dodson said. “Stay engaged in those conversations.”

Indiana's Medicaid director said there may not be enough slots open to accommodate everyone on the waitlist this fiscal year.

Abigail is our health reporter. Contact them at aruhman@wboi.org.