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Tuesday, December 10, 2019

Waiting in Illinois

In The Politics of Autism, I write:
When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

An editorial in The Chicago Tribune:
Illinois was ordered eight years ago to improve its community-care offerings for residents with developmental disabilities. Yet thousands of these individuals still wait too long for placement, languishing at home while parents and caregivers despair that the disabled are losing hard-won ground in life skills and behavior.

The state’s failure to comply with a 2011 consent decree translates to people having “suffered substantially” in a situation that is “for lack of a better phrase, messed up,” U.S. District Judge Sharon Johnson Coleman said at a hearing in October, reports Marie Fazio in the Tribune.

Illinois began aiming to move more people out of large institutions in the 1970s, spurred on at various points by court rulings and other nudges to improve care. Beset by budgetary strains and stalemates, the state has not yet found a way to move the disabled who age out of school into appropriate ongoing services, leaving them and their families struggling if they can’t afford private options. “We should walk you hand-in-hand to adult services, but what happens is we’re pushing you off a cliff,” said Josh Long, principal of Southside Occupational Academy.

The Illinois Department of Human Services provides funding for a variety of services for people with disabilities, including placement in community-based group homes or entry into day programs in the community, adaptive equipment and job training. Ideally, these options position people to live full and productive lives and provide reassurance that they will be cared for when Mom and Dad can’t do it anymore.

A federal lawsuit 15 years ago accused the state of remaining stuck in an “antiquated” over-reliance on placing people with such disabilities in large public or private institutions that were “segregated and isolated from the rest of society.” The result was the 2011 consent decree requiring the state to provide community-based programs to those who requested them, whether they were in large institutions or living at home at the time. After a six-year period of corrections, the state had to continue moving people off a statewide waiting list, known as Prioritization for Urgency of Need for Services, “at a reasonable pace.”

Currently there are thousands of people on the Human Services Department list. The typical wait for services is seven years. That’s thousands of Illinois residents whose mental well-being and behavior may well deteriorate as they wait for services — and thousands of caregivers whose own health and productivity can be impacted by a lack of anywhere to turn.

Experts agree this gap in services causes terrible setbacks. "People lose all the skills they’ve established over the years,” Long said. "It’s completely heartbreaking.”

Part of the reason placements don’t happen faster: a lack of funding to ensure safe staffing of group homes. The state reimburses care providers less than the minimum wage for workers, leaving the organization to pay the difference itself or skimp on staffing. The Illinois attorney general’s office said in a recent filing that staffing problems have resulted in “restrictions in community integration opportunities, overworked staff and significant overtime being paid.”

Count this as yet another way taxpayers see dysfunctional Illinois failing them. Some of the parents on the seemingly endless waitlist have quit jobs to care for their child or even pulled up stakes and moved: Unsurprisingly, there are other states that manage these common needs more competently than Illinois.