SPRINGFIELD, Ill. – If you have loved ones with special needs, you know getting them the support they need makes a big difference in their lives. But, advocates say families face a terrible dilemma when it comes to accessing services once people age out of special education services.
Lack of funding for the Division of Developmental Disabilities has left many in Illinois without adequate support for decades. With budget season in full swing, advocates want state lawmakers to help them with a funding boost next year.
Transitions of Western Illinois in Quincy helps people live in their own apartments or group homes. Mark Schmitz is the Executive Director.
“In other states, there’s an adult service system ready to pick them up,” Schmitz said. “In Illinois, you very likely are going to go on a several year wait list before you even become eligible for something as an adult.”
He says it’s sad to see Illinois fail to properly fund these services when it puts significant amounts of funding towards other areas.
The Division of Developmental Disabilities also faces one of the highest rates of turnover for support staff. Schmitz says that’s mainly due to the fact that many employees are paid minimum wage. Many also don’t want to work their demanding hours without respectable pay.
Now, imagine how children and adults feel when they need help with their most intimate needs.
“Just being able to feed yourself, eat, dress yourself, bathe yourself,” said John Pingo, President and CEO of the Goldie B. Floberg Center in Rockton. “Now, imagine that person is constantly changing. So, you’re exposing yourself to that level which I can’t even imagine.”
Pingo says this situation is heartbreaking. He feels Illinois needs to take bigger steps and “walk faster” towards proper funding. Schmitz agrees.
“We shouldn’t have to be sued and have a court monitor as a state in order to do the right thing. I know that there’s a lot of competing demands for state funding,” Schmitz said. “But, I think most people would agree that caring for the most disabled people in our state is probably one core state responsibility.”
The Illinois Department of Human Services recently told providers the Pritzker administration can now put $122 million towards the developmental disabilities budget thanks to the American Rescue Plan from Washington.
Staff for adult facilities could see a $1 raise instead of the 50 cents proposed in the governor’s budget in February. Still, this doesn’t address those taking care of children with disabilities or those at community living facilities. They wouldn’t get a raise at all.
“I don’t see light at the end of the tunnel at this point,” Pingo said. “And that’s what’s really scary to me.”
Keep in mind, providers hoped to actually receive $329 million for Fiscal Year 2022. The state is still far from the goal – over $200 million short.
Pingo said this is what Illinois gets when the state underinvested in the system far too long.
“It cannot handle a giant system shock. And that’s exactly what the pandemic has done,” Pingo added. “It took a system that was just barely getting by and added a tremendous amount of stress.”
Pingo and Schmitz appreciate that the Pritzker administration understands their concerns and continues to work on solutions. However, Schmitz said it could take years of concerted effort to get to where providers need to be.
“The increase in the governor’s budget is just barely keeping up with the increase in the minimum wage in the state. So, it’s not really getting us ahead in terms of fixing the parts of this that are broken,” Schmitz said. “Those keep coming in front of the court monitors to say Illinois has a broken developmental disabilities system.”