Advocates say Illinois' system to help people with developmental disabilities needs fixing, funding
CHICAGO (CBS) -- It is time for the state to get serious about caring for people with intellectual disabilities, say advocates are hoping lawmakers will give them $85 million more than what Gov. JB Pritzker budgeted.
The advocates want the money to help stop the exodus of workers providing services for that community. But CBS 2 Political Investigator Dana Kozlov found the problems are bigger than wages.
The state is also in violation of a 12-year-old consent decree – leaving thousands without care.
Jordan Kennedy, 12, can sometimes be all smiles and cooperation. But sometimes, that is not the case.
"It's not uncommon for her to kick, hit, scratch, pull my hair, headbutt me," said Jordan's mother, Kelly Kennedy.
Kelly Kennedy says her daughter's behaviors are due to a brain and rare genetic disorder – which have left Jordan at the developmental age of 4.
Kelly Kennedy, her husband, and their four children moved from Arizona to Elmhurst five years ago for the school services.
"The schools here in Elmhurst are incredible," said Kelly Kennedy.
But that is where services for Jordan stop.
"We do not have services for Jordan like social services," Kennedy said. "We don't get respite through the state. There's no Medicaid for her."
That is because Jordan is stuck on a massive waitlist to receive state services, and has been for five years. She is one of more than 12,000 people with developmental or intellectual disabilities on that waitlist – despite a 2011 consent decree ordering the Illinois Department of Human Services to get people off of it.
"Since its inception, the state has never been in compliance with the consent decree," said Kim Zoeller.
Zoeller heads the Ray Graham Association, a Lisle-based organization providing community services to people with disabilities. She said one reason the state can't move people off the waitlist is because organizations like hers don't have enough staff - about 25 percent of all positions remain unfilled throughout the state.
Zoeller blames that on low, stagnant pay.
"This field literally went a decade without any cost-of-doing-business increases," Zoeller said.
That is why Zoeller and other advocates are asking state lawmakers for an additional $85 million to give direct support professionals, or DSPs, a $4-per-hour raise. That hike was also recommended in the Developmental Disabilities Services Rate Study report from Guidehouse Inc., commissioned by the Illinois Department of Human Services to help fix the ongoing problems.
"We're not talking about moving Illinois to be the best state – we're talking about simply stabilizing our services," said Zoeller. "That's how bad it is."
For the Kennedys, who currently spend tens of thousands of dollars a year on Jordan's care, those services would be life-changing.
"We're exhausted," said Kelly Kennedy. "We are drowning."
In a statement, an IDHS spokesperson defended the state's record - saying it is in compliance with two components of the consent decree, and pointing to a raise given to DSP workers in 2020, along with a proposed $1.50-per-hour raise now.
But advocates say that is just not enough.