INDIANAPOLIS — It’s a day that families of children with medically complex kids have been dreading. July 1st was the deadline for families to switch from the Attendant Care Program which was under the Medicaid aged and disabled waiver. Now, families have to take part in the Structured Family Care program under the Health and Wellness waiver.
“FSAA has been supporting individuals, families and their advocates who previously received attendant care from a legally responsible individual which is no longer permitted,” Cora Steinmetz, the Director of the Office of Medicaid Policy and Planning for Indiana said.
The mandate came down earlier this year. FSSA had a nearly billion budget shortfall. Families feel FSSA hasn’t been transparent, and the transition has been confusing.
“This transition has been so clunky and there has been so much miscommunication that almost across the board the agencies providing structured family care are scrambling to get schedules up,” Mary McDonald who Cares for her medically complex daughter Olivia said. “People aren’t able to clock in. Today people are trying to connect with their agencies with their case managers to figure out what is happening.”
McDonald was taking part in the attendant care program. She says her medically complex daughter, Olivia, needs around the clock care.
She was paid hourly for that but now that she is required to switch to the structured family care program, she will make flat rate every day. However, she says she was once kicked off the waiver due to not having access to an at home care giver or nurse. Something FSSA says won’t happen.
“The waiver is based on their need not based on the availability of services,” Dr. Dan Rusyniak the Secretary of FSSA said.
FSSA acknowledged that there is a workforce shortage and had a recommendation for families if they are having an issue finding the support they need.
“Families that are looking for resources, there may be additional resources that are available within their community so they could reach out to 2-1-1 which has a list of resources as well,” Dr. Rusyniak said.
However, families say those resources that FSSA is referring to are hard to come by.
“Any of these resources that we are supposed to be finding or be able to rely on are scattered at best or completely missing at worse,” McDonald said.
There are nearly 4,000 people on a wait list with FSSA trying to prove that they need assistance through the health and wellness waiver.
That waiver encompasses the structured family care program. That means people trying to qualify will go without until they are approved.
FSSA says if people have not heard from their care manager they should call the Bureau of Disability Services at 800-545-7763 or send them an email at [email protected].
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