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CTF Illinois CEO Tony Barrett warns of a —tsunami— of unmet IDD needs, outlines expansion and outreach plans
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Summary
Tony Barrett, president and CEO of CTF Illinois, told a community meeting the agency serves about 700 people statewide but that roughly 10,000 people remain on the waiting list; he urged lawmakers to fund Medicaid matches, described staffing and transportation pressures, and invited families to a May 29 open house in Orland Park.
Tony Barrett, president and CEO of CTF Illinois, told a community meeting that the agency operates about 40 facilities across Illinois and supports roughly 700 individuals, "200 of which are home based," while the state's waiting list for services remains large.
Barrett said the agency's Orland Park campus, which now houses a DMV in a former St. Xavier building, has helped raise public awareness of CTF's work. "We actually have 40 facilities throughout Illinois," he said, and described day programming, training and a packaging facility that provides employment opportunities for people with intellectual and developmental disabilities (IDD).
Why it matters: Barrett argued the gap between available services and demand is driven by funding and workforce constraints. He cited multiple figures during the presentation: about 11,000 people live in CILAs statewide, 13,000 receive home-based services, and "on the puns list, ... approximately 10,000 folks" wait for placement. He said the agency relies heavily on Medicaid — "90% of how we get paid is through Medicaid" — and described federal-state matching as roughly 51/49, meaning state underinvestment can leave federal matching dollars unused.
Barrett and other CTF staff framed low pay and high operating costs as central barriers. "We will pay more if they go to an Amazon warehouse," he said of direct support professionals (DSPs), and described the work they perform — administering medication, assisting with breathing devices and daily personal care. He noted a recent legislative 60-cent raise for some workers but said it still leaves the job difficult to sustain.
On care settings and costs, Barrett contrasted institutional and community models. He said state-operated developmental centers (SODCs) can cost about $350,000 per person per year, while community ICF placements range from about $128,000 to $250,000 a year, and argued that community CILAs are more cost-effective but harder to arrange for people with severe behavioral needs.
Families at the meeting pressed staff on placement logistics. Barrett explained the role of an ISSA worker in coordinating paperwork and suggested families ensure their ISAs send packets to providers to improve placement chances. CTF staff described a process of matching small groups of residents to a home (typically three or four people) so they can "mesh together well," and said the agency prefers established, safe neighborhoods.
Barrett and staff also highlighted outreach tools and events. They urged families to consult the IDD Navigator website (described at the meeting as a comprehensive resource developed with support from the Coleman Foundation) and invited attendees to tours and a May 29 open house at 18230 Orland Parkway, Orland Park, where a mobile DMV will provide state IDs and programming staff will be available by RSVP.
Barrett closed by acknowledging widespread frustration and urging continued advocacy. "It appears through the data that we have a tsunami of issues coming at us in Illinois," he said, and invited families to follow up for tours, paperwork help and more detailed case assistance.
The agency said it will collect contact information from attendees and follow up with program leads; no formal vote or board action was taken at the meeting.
