INDIANAPOLIS – It’s a typical Tuesday at the Ruzic home. Jesse and Olivia are caring for their son Archer. He has what’s called Kabuki syndrome.
The umbrella illness has caused him to have 27 other life-threatening diagnoses. He requires around the clock care.
"Nurses are really the only option and there is just such a shortage, a dire shortage, that there is nobody else at this point that can come in the home and meet these needs,” said Jesse Ruzic.
Jesse takes care of his son’s medical needs. He doesn’t get paid for that portion of his son's care but he does for other needs, like bathing and dressing. He and his wife are both able to work full-time caring for their son through the Attendant Caregiver program, funded through the aged and disabled waiver.
Their son suffers from seizures and can’t eat on his own. Both have taken training to be able to provide this care. They both clock 40 hours a week like a normal job.
"We have been trained by these agencies, yes we do have to show what we are doing,” Olivia Ruzic said. “Yes we have to be careful to clock in for only the amount of hours that FSSA has approved for us. “
Providing this critical care for their son is something they say has been life changing.
But come July, the compensation they receive for their work could go away. A billion-dollar shortfall in the Indiana Medicaid budget has caused FSSA to propose getting rid of the program.
Under the Family and Social Services Administrations proposal, caregivers could be paid 50 dollars a day, something the Ruiz family says could cause some families to become homeless and lose all possibility of income, since many people taking advantage of the program can’t work normal jobs.
“If a private employer said 'you know, we messed up. We made a billion dollar error so what we are going to do, we aren’t going to fire you but you can make $50 a day or you can find another job'," Olivia said. “Heads would roll if that happened in the private sector but because this is tax funded money its being presented to the media as parents are just going to lose their payments and their benefits. It's not being presented as parents are losing jobs that they were trained for, and honestly jobs that put their critically sick children at risk if they don’t have them.”
On Tuesday Lt. Governor Suzanne Crouch, who is also running for Governor, reiterated her support to pause the cuts and called for an outside audit of FSSA to make sure that this budget shortfall doesn’t ever happen again.
“It’s taxpayer money. So first of all, we need to be ensured that it’s being spent properly,” Crouch said. “But we need to be sure that these kinds of programs don’t have a five-fold increase in the cost over a three year period of time and no one catches it. Then all of the sudden we are in the position we find ourselves today, where parents are grasping and grappling with the fact of how they are going to get the care if they themselves can’t provide it.”
FSSA has yet to share how many families take advantage of the Attendant Care Giver program. Lt. Governor Crouch says she has asked questions of the agency and has yet to receive answers. For families like the Ruzic’s, they are hopeful that an audit will provide transparency.
"I just think that we all want transparency because the only way that we are going to ensure that our kids get the care they need is if there is transparency,” Olivia said.
We reached out to other gubernatorial candidates to see if an audit of FSSA is something they support. Some of them sent statements you can find below:
Brad Chambers (R)
“Having lived with a family member with disabilities, I can tell you firsthand how important this issue is to me. It’s critical that FSSA explain the factors and data that led to this point, then take time to develop and fully communicate a thoughtful and compassionate plan moving forward, minimizing impacts where possible and ensuring families have ample information and time to prepare for any changes that may affect them.”
Eric Doden (R)
”Our highest priority should be protecting our most vulnerable. As this debate continues to provide much-needed transparency and accountability to a taxpayer-funded program, any solutions that come out of the Statehouse should meet the needs of Hoosiers with disabilities and the family members who care for them.”
Curtis Hill (R)
"The state makes a $1 billion blunder in Medicaid budgeting, and their answer is to take money from vulnerable families in the dependent care program. This is unacceptable."
"Lawmakers in Indianapolis - in the legislature and the executive branch - have made an error and are now forcing hardworking Hoosiers to foot the bill. There should be an audit into this, but blame lies at the feet of politicians and bureaucrats in Indianapolis who have mismanaged our state's resources. It is one thing to call for action; it is another to lead and take action."
Dr. Jennifer McCormick (D)
“Since becoming public, I have been calling for our state lawmakers and office holders be held responsible for the budget shortfall and FSSA’s performance. Republicans have been in charge for decades and now must own the problem and create a well thought out and transparent solution. Waiting until this moment is irresponsible and unacceptable. As Indiana’s next governor, I will lead prioritizing our most vulnerable knowing they and their families deserve better. We cannot be reckless with their owed services and lives.”