It’s no secret Illinois government does a lousy job of supporting people with intellectual and developmental disabilities.
It’s been that way a long time. The question is how much longer we’re willing to put up with that.
An oft-cited study from the University of Colorado ranks Illinois 47th among states in funding community-based services for this vulnerable group. About 18,000 people are on a waiting list for services.
They have autism, cerebral palsy, Down syndrome or other disabilities. But, with proper support, most can live fulfilling lives with varying degrees of independence.
In recognition of the state’s dismal record, Illinois entered into a federal consent decree in 2011 mandating dramatic increases to pay for those services. By 2018, a federal judge found the state in violation of the decree for failing to meet its goals.
Now, there’s a new campaign by community-based, nonprofit organizations that rely on state funding to provide supportive housing, job training and other assistance to these individuals and their families.
They’re asking legislators to finally make good on the state’s promises and fully fund a new rate structure they say will allow them to provide consistent, quality care to disabled clients.
It’s not a great time to be asking for more taxpayer money. The state was in a financial bind even before the pandemic, and the graduated income tax that some thought would be the solution was soundly rejected by voters in November.
Still, there has to be a recognition that people with intellectual and developmental disabilities must be a priority.
Josh Evans is president and chief executive officer of the Illinois Association of Rehabilitation Facilities, which represents community-based providers. Evans said his members feel an obligation to make the Legislature and the public aware of their funding needs, especially as the state begins to carve up any expected federal COVID-19 relief money.
The funding proposal that’s now being advanced is the result of two years of planning, done in cooperation with the Illinois Department of Human Services’ Division of Developmental Disabilities, that identified priorities.
The most important — and most expensive — would set the state’s wage-rate reimbursement for workers in residential programs at 150% of the state’s minimum wage, with a 15% bump for workers in the Chicago area.
That would help with longstanding problems in recruiting and retaining “direct service professionals” — workers who do the hands-on care and supervision on which disabled individuals rely.
These are difficult, demanding jobs that require a level of compassion not everyone has. The work can also be much more personally rewarding than other low-wage jobs.
“It requires a special kind of person,” said Jim Kales, chief executive officer of Aspire, which provides services to disabled people and their families in Cook and Lake counties and southeastern Wisconsin.
But as the minimum wage goes up in Illinois, with even higher minimums in the city and county, nonprofit providers have found it harder to find workers. So they load up the overtime or operate short-staffed.
Evans said his members appreciate Gov. J.B. Pritzker’s administration’s efforts to provide more money in recent years but say it has barely allowed them to keep pace with the new minimum-wage requirements.
In his budget for next year, Pritzker has included a $77 million increase to partially fund some of the study’s recommendations. But Evans said it would take $329 million to do the job right plus $100 million over each of the next four years.
Proponents say the cost would be softened by a federal match of 51% through Medicaid.
If service providers are funded properly and can improve staffing to where it needs to be, they can “make a huge dent” in serving the backlog of disabled people waiting for services, Evans said.
Kales said states surrounding Illinois do better at helping people with disabilities to be part of the community, and they’ve been doing better for years.
“We understand difficult choices need to be made,” he said.
For once, providers would like the difficult choice to favor the people who need help the most.