Advocates want $246M for developmental disability services in Illinois

Providers across Illinois appreciated the historic funding for their services last year. But...
Providers across Illinois appreciated the historic funding for their services last year. But they also argue lawmakers should approve a $246 million investment this year to meet the state's obligation for those most in need.(Mike Miletich)
Published: Mar. 9, 2022 at 6:40 PM CST
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SPRINGFIELD, Ill. (WGEM) - More than 28,000 people in Illinois receive some type of help for intellectual and developmental disabilities.

The state invested $170 million toward the services in the Fiscal Year 2022 budget, but Gov. J.B. Pritzker only proposed $94.8 million for next year.

Providers across Illinois appreciated the historic funding for their services last year after decades of underfunding. But they also argue lawmakers should approve a $246 million investment this spring.

Pritzker’s proposed budget calls for specific funding for rate increases for direct support professionals. Yet, his plan would only cover a $1 wage increase for those workers. Many of the working-class people on the frontlines in this industry say they barely get by with the current wages. Worker pay also was an issue during budget negotiations last year.

It’s a major concern as providers continue to see state leaders celebrate extra revenue for the state this year.

State seeing higher revenue

Josh Evans is the president of the Illinois Association of Rehabilitation Facilities. He is excited to see Illinois report the unexpected revenue boost, but he’s worried too many people are focused on the governor’s proposed family relief plan. Pritzker hopes to provide Illinois families $1 billion in tax relief, addressing concerns with gas, grocery and property taxes.

“If the state is in the financial position that it’s in where it is as healthy as we are, why aren’t we investing those dollars back into those commitments that we’ve made to families, to our service array?” Evans asked.

Evans says every agency in his network is dealing with the same problem right now - a massive worker shortage. Many are leaving the industry for less-demanding jobs with higher pay and better benefits.

Providers say direct support professionals should receive 150% of the state’s minimum wage. The decision could affect more than 30,000 direct support professionals and any future workers in the field.

“If we do not recruit and hire DSPs, train them, we will no longer have the supports needed to continue to support intellectual and developmental disabilities in the state of Illinois,” said Helen Blackburn, VRS executive director of Centerstone.

Blackburn started as a DSP in Southern Illinois 20 years ago. She said there was never a question of whether or not that could be a career. But with wages so low in 2022, Blackburn said it’s difficult for anyone to make ends meet.

Extended waiting lists

Still, another area of concern is the fact 14,000 people are still on a waiting list to receive these services. Blackburn explained without more workers, agencies can’t open more slots for people in need.

“We’re missing out on an entire population of people who want to be involved in our community who can work and are valuable members of our community,” Blackburn said.

Pritzker’s budget proposal could help put nearly 700 people into less restrictive or community home settings. Still, Lacey Eaton with Transitions of Western Illinois says that is not nearly enough.

“It’s very difficult to look at these families who are desperate for help and say, ‘I’m sorry, it’s at least five to seven years before your loved one is going to have funding so they can get the services that they need,’” Eaton said.

Cindy Drieselman’s sister lives in a group home through Transitions. She’s not sure what her family would do without the daily help from direct support professionals.

Drieselman says lawmakers need to put themselves in someone else’s shoes to understand why these services are critical for her sister and thousands of other Illinoisans.

“We owe it to them to have a respectful life and be taken care of, just as human aspects,” Drieselman said. “It’s just not to look at their budget lines or whatever. This is beyond that. This is people’s lives.”

Eaton said the need for funding is dire and the situation is an injustice for people in Illinois with developmental disabilities.

“We need to have something in place where they can continue to receive care, training, and integration from the day they leave high school and throughout the rest of their adult lives. They need that support,” Eaton said. “As a state, we are doing an injustice to them if we do not invest more money in them to provide the same care and equality that a non-disabled person would have.”

This push for additional funding is coming during legislative crunch time. State lawmakers hope to have their budget introduced and passed by April 8.

“We know what the cost is. We know we’ll get at least 51% if not more on every dollar we spend back from the federal government,” Evans said. “Why not now? Let’s do this. The longer we drag this out, we’re just spreading costs out over multiple years that will never go away. It will only increase over time.”

Still in committee

The appropriations proposals, House Bill 4832 and Senate Bill 4063, have both received bipartisan support but have not moved out of committee. Meanwhile, lawmakers are also working on separate proposals to address worker pay and disparities within the industry. Senate Bill 3607 and House Bill 4616 call for a $3.50 wage increase from the amount in place on June 30, 2022. House Bill 4647 requires the Illinois Department of Human Services to gather data on wage rates, workforce demographics, and turnover to help inform lawmakers and stakeholders for future policy.

“My coworkers and I really do love what we do with our clients,” said Marlin Thomas, a DSP and president of AFSCME Local 486. “We deserve a fair wage. We deserve to make sure that the language is passed through where the funds will go directly to the workers. We’re there day-in and day-out. We support our clients very well. It’s much needed because a lot of the funds the state gives the agency are not passed on to the workers.”

Rep. Lakeshia Collins (D-Chicago) knows firsthand what that fight is like. She worked as a health care employee in long-term care facilities for years before taking office. She said these workers should not be shortchanged any longer.

“I’m still fighting and advocating for us,” Collins said. “I know that without us, there is no workforce. There is no one that is going to be able to go into these homes and take care of the most vulnerable population and give them the quality care that they deserve like you.”

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