INDIANAPOLIS — March 21 is World Down Syndrome Day. It’s a day to raise awareness about the disability.
For families in Indiana who are caring for loved ones with down syndrome, this year the day may be hard to celebrate.
Hundreds of Hoosier families are staring at a July deadline to lose financial support from a program they've relied on to help care for their loved ones.
Lucretia Buford cares for her 29-year-old daughter, Raiesha, full-time. Raiesha has severe down syndrome.
"I do it all for her,” Buford said. “If she has to go to the bathroom and she needs some assistance, I am right there, 'Come on let’s get you cleaned up, you tell me what you want to do today.'"
Buford says she tried for years to find her daughter adequate at-home care but couldn’t. She even considered a group home but heard too many stories of negligence and was concerned about her daughter's well-being.
She was eventually able to care for her full-time through the attendant care program.
"It's going to be a heavy pay cut,” Buford said. “Now, certain things are limited. Things that she is used to doing, she is not going to be able to do as much."
The state's Family and Social Services Administration is cutting the program due nearly $1 billion in budget shortfalls.
There were efforts at the statehouse from lawmakers to save the program, but those efforts fell short in the last day of session.
"Even putting forth some guidelines, we just couldn't convince legislators that it was going to do the trick,” Kim Dodson, the CEO of The Arc of Indiana, said.
The Arc of Indiana advocates on behalf of people with disabilities at the statehouse.
There was legislation that passed out of the house that would have laid out strict guidelines for the attendant care program. It would have allowed families with the most severe medical complexities to stay on the program.
It would have also created a fourth tier for the structure family care program. That program would have allowed for a higher daily reimbursement for families that switched to the program who didn’t fit the definitions laid out to stay on attendant family care.
Lawmakers denied that legislation on the last day of session.
The Arc of Indiana says FSSA has told them that as of right now, 50% of families currently taking part in the attendant care program have already transitioned to the structure family care program. As for the other half, those benefits will still end in July.
Dodson hopes they are preparing for what is to come.
"If they are holding out hope that something is going to change, I hope that's not the case,” Dodson said. “They really need to plan for as much of a transition as they can as soon as possible."
Under the attendant care program, a legally responsible adult gets paid hourly to care for their loved one. Under structured family care, those caretakers get a daily rate.
For families like Buford's, she has a message for lawmakers.
"Help people,” Buford said. “Assist people."
Lawmakers did pass legislation that will require FSSA to deliver a report to lawmakers on how the nearly $1 billion shortfall happened. It is due by Nov. 1.
In that report, FSSA will also have to share how many people transitioned to the structured family care program and how many are looking for at-home help.
