Another door is closing for disabled adults in Chicago
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Leticia Rodriguez has followed pretty much the same routine for the last 45 years as a student and then adult client at Esperanza Community Services in West Town, getting picked up every weekday morning and dropped off every afternoon — the hours in between spent in programs aimed at helping her lead a fulfilling life.
That routine soon will come to a crashing halt when Leticia, 58, becomes one of 14 individuals with developmental disabilities to be dumped from the Esperanza program, which blames financial difficulties related to its state funding.
It will be the third such Chicago area program to reduce services to this same disabled adult population within the span of a few weeks. On Jan. 31, Easterseals closed two day programs for autistic adults — one in Chicago and the other in Tinley Park — also citing state funding problems.
Advocates for people with autism and other intellectual disabilities say such cutbacks are part of a broader problem caused by the low reimbursement rate the state pays for such services.
A recent survey of nearly 100 organizations that work with the developmentally disabled found 25 percent had closed programs, many because they could not find staff willing to work for the low pay they can offer.
The reduction of services has exacerbated a longstanding shortage of options for Illinois families seeking quality care for disabled family members.
Of the 14 disabled adults at Esperanza who are being removed from the program, only four have found somewhere else to go, similar to what happened when 44 individuals were displaced by Easterseals’ cutbacks.
Carla Rios, who is Leticia’s sister and legal guardian, is worried about what happens after the Esperanza van stops coming for her sister.
She has yet to find another program that can take Leticia, who is diagnosed as severely mentally challenged and nonverbal (she makes sounds but doesn’t use words.) The program Rios sees as the best option for her sister has no openings at this time.
“I don’t know what her reaction is going to be,” Rios said. “She could fall into depression from not seeing her teacher and classmates.”
Change can be hard on most people, but it is a particular concern when dealing with individuals who have trouble communicating and whose mental health is often closely tied to their routines.
Esperanza isn’t closing its programs but, instead, scaling back.
Joy Decker, Esperanza’s executive director, said the non-profit agency has been running deficits for three years, squeezed by a state reimbursement rate that had not increased in 10 years before a small raise in the state’s latest budget.
To ease the financial crunch, the agency is selling its properties at 1920 W. and 1924 W. Grand and moving 55 clients from the adult day program into the gymnasium of an old school building it operates across the street.
Family members of the other 14 clients were informed in November they had to be out by Dec. 15 because of a lack of space at the new site. Family members complained, and the deadline was extended to the middle of this coming week.
Then, on Friday afternoon, after family members made plans for a protest next week and following a phone call from the Sun-Times, Decker announced the deadline will be extended again, this time until March 29.
Decker said the extension is possible because the real estate closing has been delayed.
Inez Moss-Louis, whose autistic daughter, Asia, is also losing her spot at Esperanza, said she and other parents believe their children were singled out for removal because they are more severely disabled and require more care.
Decker said the decision was based on choosing participants with the strongest interest in art, a growing emphasis at Esperanza.
“We don’t want to do this,” Decker said. “We would love to save everyone.”
Rios said she has tried to prepare Leticia for the change that is coming.
“I don’t know if she quite understood,” she said.
Rios herself finds it hard to understand.