By MAGGIE DOUGHERTY
& TOM O’CONNOR
Medill Illinois News Bureau
SPRINGFIELD — Protesters flooded the rotunda of the Illinois Statehouse earlier this month, urging legislators to increase wages for caregivers of individuals with intellectual and developmental disabilities. The ‘They Deserve More’ coalition — representing advocacy organizations, families and over 90 agencies providing community care — is asking that these direct support personnel, or DSPs, receive at least 150% of Illinois’ minimum wage.
The coalition is also seeking to avoid a cut to state-funded DSP service hours that would result from a provision in Gov. JB Pritzker’s proposed budget for the Illinois Department of Human Services.
In 2021, Illinois ranked 46th in a University of Kansas study of states’ spending on intellectual and developmental disabilities services, though in recent years the state has increased funding, including a $2.50 hourly increase for DSPs in fiscal year 2024. The proposal is one of dozens of budget requests that lawmakers will consider as they work to finalize a spending plan by the end of the May session amid federal funding uncertainties.
Wages
Demonstrators called for support for two bills moving through the Illinois General Assembly, House Bill 2788 and Senate Bill 1690, which propose raising the base wage for DSPs. Both bills failed to clear the legislature ahead of recent deadlines, but matters pertaining to state funding are generally included in the end-of-session budget package.
Edwina Hernandez, a DSP Recruiter at Cornerstone Services in Joliet, says her agency has trouble providing services to disabled residents due to employee retention challenges. DSPs are the individuals who provide daily personal care such as assisting individuals with eating, grooming and dressing.
“We do have a lot of workers out there who have a heart to serve and a heart to help the community. It’s just the pay,” Hernandez said at the demonstration.
DSPs are vital to the wellbeing of people with intellectual and developmental disabilities and their ability to lead happy and meaningful lives, according to the coalition. The work can be physically demanding and emotionally difficult.
Family members and people with intellectual and developmental disabilities also attended the protest, expressing appreciation for the DSPs in their lives.
“We don’t give enough importance in our society to people who take care of other people, and the human touch is very important,” said Lena Grant, whose brother, Michael Jordan, has lived at Cornerstone for the past 20 years. “Our relatives and our loved ones are the most important things in our lives, so the people that take care of them deserve the utmost pay for their work, their effort, their education.”
The proposed budget for IDHS includes a 50-cent hourly increase that would bring the base wage to $21 an hour statewide, approximately 140% of the minimum wage in Illinois. Advocates say this raise is important for rewarding the work of caring for Illinoisians who cannot care for themselves.
House sponsor Rep. Laura Faver Dias, D-Grayslake, said the proposed increase falls short of the state’s 150% target. The target comes from a study prepared by Guidehouse Inc. for IDHS with the intention of bringing the state in line with the Ligas Consent Decree.
The consent decree requires Illinois to provide certain care options to qualifying Illinoisians who request them. Reaching the 150% goal would require current DSP base wages to increase by $2 per hour.
Sen. Chapin Rose, R-Mohamet, a co-sponsor of the Senate bill, agreed the proposal falls short.
“For providers who hire someone who’s going to feed, bathe, clothe one of our developmentally disabled friends and neighbors, you can make more money at McDonald’s,” Rose said in an interview with the Medill Illinois News Bureau for Capitol News Illinois.
Service Hours
The proposed budget would add more money to pay for a salary increase while, at the same time, cutting the number of service hours the state will pay for – which would result in a net lowering of Illinois state funding to DSP workers.
That means the 50-cent hourly increase in the base wage for DSP workers would cost $20 million for fiscal year 2026, which begins July 1, helping meet some of the need. However, coalition research shows that a separate provision in the budget proposed by IDHS will actually lead to the loss of $32 million in state-funded DSP service hours.
The resulting cut in hours will affect the Community Integrated Living Arrangement, or CILA system, which allows individuals with intellectual and developmental disabilities to live in community settings with partially or fully state-funded professional care. The overall result of the proposed budgetary action would lead to a net $12 million loss to DSP providers, according to the coalition.
“It’s like saying to somebody you’re getting a promotion, but we’re putting you down to part-time,” said Ann Morris, chief of communications and external affairs at Little City, a residential care facility in Inverness.
The They Deserve More coalition says the cut arising from the proposed budget amounts to the elimination of 895,000 state-funded service hours, which equates to 430 full-time DSP positions. This would force service providers to either lay off workers or fund the gap, according to Kathy Carmody, CEO of the Institute on Public Policy for People with Disabilities.
“Agencies, they have no revenue stream other than Medicaid,” Carmody said. “You can’t have a bake sale to raise base wages for your DSPs.”
Family members of individuals with intellectual and developmental disabilities said the cut would be painful.
“Our direct service professionals are more than just workers, they’re part of the disability community family,” Hernandez said. “They come alongside each client and they help them live and work in the community… So the turnaround is like taking a family member away from them.”
The hours cut would also interrupt the consistency of care that individuals with intellectual and developmental disabilities receive, according to their family members. Lena Grant’s brother is autistic and nonverbal, meaning that having staff he knows at Cornerstone is crucial to his care.
“It’s very important that the people who care for him are there consistently, because he can’t speak, he can’t communicate his needs, so the people that work there get used to him and understand him and know what his behaviors and his body language and all that means,” Grant said.
Employee turnover means repeatedly training new people on his needs, according to Burneva McCullam, who shares guardianship of their brother with Grant. “That’s hard on Cornerstone, that’s hard on us,” McCullum said.
The governor’s office and IDHS both said this is not the intention. “Providers will never be told ‘you’ve reached your hours limit’ or be forced to lay off support workers,” the governor’s press secretary Alex Gough said in an email. “The global hours total is part of a funding model with multiple parts, designed to fairly and equitably distribute limited resources.” IDHS sent an email using identical language.
Gough said there is no limit on the number of hours providers can employ DSPs, but the coalition argues that cuts in state funding for service hours will reduce the state help providers receive and add pressure to an already strained system.
Budget
Representatives on both sides of the aisle expressed frustration with the proposed IDHS budget during a meeting of the House Appropriations Committee on Health and Human Services in April.
“We’re telling you that the (developmental disability) community is our priority, and yet we’re going to start cutting from them,” said Rep. Terra Costa Howard, D-Glen Ellyn, addressing IDHS Secretary Dulce Quintero and staff. “And so where are our priorities within this budget? I’m not sure if they’re actually reflected.”
Rep. Nabeela Syed, D-Palatine, asked IDHS whether DSP providers were consulted when deciding to reduce service hours in favor of higher wages. Quintero replied that providers were consulted during the Guidehouse study and that it “has been a very transparent process.”
However, providers in the They Deserve More coalition told Capitol News Illinois that they did not feel included in the decision-making process.
“I’ve been in every meeting, there’s not one that I missed,” Carmody said. “There was no consultation.”
A reduction in DSP service hours was first proposed in late 2023, but Carmody maintained there was an agreement that the current 28.5 million DSP hours would remain in place. She says the proposed budget cut amounting to 895,000 state-funded service hours came as a surprise.
“Why on earth would we have fought for over a year to stave off these cuts only to agree that it would only be a temporary measure? It’s preposterous. It’s counterintuitive,” said Carmody. “That was not the understanding. The understanding was that the community system would retain 28.5 million hours of DSP services.”
Carmody said some impacts on funding for DSPs were expected in future fiscal years, but not this year or to this extent. She also acknowledged the budgetary challenges of this fiscal year and said the current administration “hands-down” has done more than past administrations.
“Our administration has a very open, ongoing dialogue with the DD service providers and the trade associations who represent them,” said IDHS Director of Communications Rachel Otwell in an email. “We aim to be creative, dedicated partners with every organization working to empower people with disabilities to achieve their full potential.”
Rose accused Pritzker of failing to ensure those with intellectual and developmental disabilities were appropriately prioritized in the budget.
“The governor has never, never in six years made the developmentally disabled a priority,” Rose said. “He can say all he wants in speeches, when the bottom line is, his budgets don’t prove that out. In a budget, it’s ‘put your money where your mouth is.’”
The governor’s office and IDHS said that the proposed budget demonstrates the strength of Gov. Pritzker’s commitment by allocating $3 billion in funds to those with intellectual and developmental disabilities, more than has ever been committed in the past.
“As the federal government dismantles and disinvests in disability services, we are committed to stabilizing and strengthening supports for people with disabilities in Illinois,” Gough said in an email. “The FY26 budget proposal moves us in that direction.”
As lawmakers work to hash out the details of the budget, the They Deserve More coalition encourages community members to keep pushing their legislators to support bills HB 2788 and SB 1690.
“We were told at the outset of the budget season this year that this was going to be a very tight budget, but we always remain hopeful that our voices will be heard,” Morris said.
Maggie Dougherty and Tom O’Connor are graduate students in journalism with Northwestern University’s Medill School of Journalism, Media, Integrated Marketing Communications, and fellows in its Medill Illinois News Bureau working in partnership with Capitol News Illinois.
Capitol News Illinois is a nonprofit, nonpartisan news service that distributes state government coverage to hundreds of news outlets statewide. It is funded primarily by the Illinois Press Foundation and the Robert R. McCormick Foundation.
