Indiana parents of disabled children worried about changing caregivers' law
CHICAGO (CBS) -- Only on 2: A program that allows families to take care of loved ones with special needs and medically complex conditions, is expected to change in Indiana.
A mother in Lowell said the program has been a lifesaver and what's being proposed would be life-changing.
Anna Dickerson and her husband Dave do a daily routine with their 18-month-old son, Miles: changing his trach tie.
"We have to make sure his neck stays dry and clean because a lot of moisture develops under the trach ties."
Miles was born with Noonan Syndrome and cardiomyopathy, requiring a trach vent for his breathing.
"It is essentially his life support."
Dickerson has been able to stay at home and care for Miles through Indiana's Aged & Disabled Waiver Program.
It pays a parent or caregiver to be the main provider of care. Right now, Dickerson is paid $15 an hour, to care for Miles, 120 hours each week.
"It gives us the piece of mind that he is in the right hands at all times," Dickerson said.
Dickerson said as of July 1, the program she's calls a lifesaver, is expected to change. Instead of getting an hourly wage, she would get a stipend through the structured family program of between $30 and $75 a day, instead of $1,800 a week.
Under the new plan, someone else would also be paid to take care of Miles, not his parent.
The program started in 2020 during the pandemic. At that time, $20 million a month was being spent. In 2023, the figure was $120 million each month.
In December of 2023, a $1 billion shortfall in Indiana's Medicaid budget was announced.
Lt. Gov. Suzanne Crouch is calling for a pause to keep the program in place and an audit of the Family and Social Services Administration.
"To determine, are there other, you know, programs where we could realize some cost savings that maybe would help in terms of being able to continue the care at the level that we have it right now," Crouch said.
Crouch said with the upcoming legislative session, she's hoping this issue is addressed and there's a solution.
That's what Dickerson wants that, too.
"My hope is that they are able to figure out a way to still give the parents what we need, to survive," she said.