It is well beyond time for all of us in the state legislature to finally do right by people with intellectual and developmental disabilities.
Our state ranks 49th in the country for funding and support of the estimated 300,000 Illinoisans with intellectual and developmental disabilities and their families, who deserve an opportunity to live safe, full and meaningful lives. Forty-ninth out of 50 states — that is unconscionable. We are nowhere near funding community agencies at an adequate level to support our people in need.
We are nearing the end of the state legislative session and for many, the budget still feels like a black box. The disabled community — families and care providers — has made a very strong case for a $4 per hour wage increase for frontline staff who feed, bathe, help with daily medications, take community-home residents to outings and jobs and much, much more. Our direct support professionals (DSPs) can, sadly, make more money at an Amazon warehouse or driving for Uber, and many have reluctantly made that choice just to feed their own families.
In fact, we just found out our beloved Illinois House page, who has a developmental disability, makes more money in his supported employment than his DSP ($17/hour vs. $15.50/hour) We were stunned.
Considering these dismally low wages, it’s no wonder Illinois’ community support system has been mired in a staffing crisis — and out of compliance with a consent decree — for years. That $4 per hour increase would bring state-funded wages to 150% of the minimum wage for these 24/7/365 difficult but very rewarding jobs. This wage increase is the primary recommendation from the state’s own independent study of what is required to stabilize the community system.
There are thousands of pressing budget needs, so we recognize the challenge in a $4 per hour increase. But we must take ownership of a community support system on the verge of collapse.
Non-compliance with consent decree, thousands on waitlist for services
Our underpaid DSP workers make up the core of this system, a workforce that is 87% women and 53% people of color. Simply put, this isn’t just a line item in the budget. This decision on funding deeply affects people, families, frontline workers, and their circles of support in every corner of Illinois
The state is a full six years out of compliance with the Ligas Consent Decree, which mandates that persons with disabilities living at home or in state-run institutions have the right to live in their communities. Community agencies want to provide at least a living wage to workers so they can respond to the profound need, but inadequate state funding means community homes are closing, consolidating, and unable to take new clients.
Meanwhile, the waitlist for services is 14,933, with 5,548 people eligible for community-based services today with no place to go.
Here’s a stark example: The state spends $48 million to run the Choate Mental Health and Developmental Center and now wants to relocate more than 190 residents of state facilities into community living. Those underfunded community homes don’t have enough staff to accept more residents. It’s remarkably easy to see what’s wrong with this picture, and yet year after year, we don’t fix it.
The good news: Never have we had such broad support among state lawmakers to adequately fund the community system that supports people with disabilities. We must work tirelessly to do just that and carry this responsibility over the finish line this week, including the governor’s signature on the budget containing this increased investment.
Thousands of people in our state with intellectual and developmental disabilities and their families depend on daily quality support to live independent and vibrant lives. It is our obligation as a state to make that possible and we are letting them down. Let this be the year we change that.
State Rep. Lindsey LaPointe represents the 19th District; State Rep. Lakesia Collins represents the 9th District; State Rep. Nabeela Syed represents the 51st District and Celina Villanueva is a state senator who represents the 12th District.
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