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Families of kids with disabilities and critical illness rally at statehouse to protest FSSA cuts

A billion-dollar shortfall in the Medicaid budget has caused FSSA to announce potential cuts to the to the aged and disabled waivers.
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Posted at 9:53 PM, Jan 22, 2024
and last updated 2024-01-22 21:53:19-05

INDIANAPOLIS— Families who have kids with complicated medical issues are worried about the future of the medical care they'll get. A billion-dollar shortfall in the Medicaid budget has caused FSSA to announce potential cuts to the aged and disabled waivers.

 

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"It definitely makes a big impact,” Alexander Davis a person living with disabilities said. “Right now my dad is not able to work due to a foot injury and back injury so really that program was our only source of income. "

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Davis is talking about the Medicaid attendant care program. His mom Anastasia is able to collect an income by caring for her son. She says finding a nurse for her son can be difficult. Which is why she started taking part in the program.

 

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"We would go on a list for nursing we would go on a list for attendant care but before this program we were on a list for 7 years and never got any help,” Anastasia Davis a Waiver Recipient said. “So this program changed our life and took just a little bit of stress off our family. "

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The Family and Social Services Administration has proposed ending the payments they make for families. For the Clements, those payments have been life changing. Before the payment, Sy Clements was working multiple jobs to make ends meet. He would only get four hours of sleep a night and would often times sleep in his car between his shifts.

"This has allowed just in the last 9 months since we've gotten it I am back to only one standard full time job,” Sy Clements said. “I am finally able to support my wife and help give more support to my daughter, increase her therapy, we have actually been able to have the time and means to get out and go to the zoo! "

 

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Care givers are able to make anywhere from 10-15 dollars a hour. These families hope the FSSA will continue to fund the program and that lawmakers will understand for some families this is their only option. Rachel Scott says her husband is the one who receives the waiver. They have been fortunate enough to now afford a home they consider a farm. Something she says they will have to sell is this funding goes away.

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"We would have to sell our house and everything that we own,” Scott said. “We would be really hurting financially we would not be providing the life that our children would need.”

 

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As of right now if the cut happens, it will go into effect on July 1st. Parents plan on being at the statehouse throughout this session to talk with lawmakers and urge them to find a solution.

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