For 50 years, it provided a lifeline to blind adults with developmental disabilities in Chicago. COVID-19 led to its demise

CHICAGO – Perched between his bed and a dresser, Michael Thomas sits on the floor of his Chicago home and tries to pass the time, stringing beads along a lanyard and waiting for the phone to ring.

This is how the 46-year-old spends most days during the pandemic. Sometimes Thomas gets a call from one of the friends he met at The Chicago Lighthouse, a nonprofit that serves the visually impaired. Up until last year, he went to the Lighthouse daily to take part in a living skills program for blind adults with developmental disabilities.

But the program was suspended during the pandemic and, after operating for 51 years, shut down. In an April letter to families, the Lighthouse said it was closing the program “with profound regret” and that it couldn’t be maintained “due to unanticipated outcomes resulting from the COVID-19 pandemic.”

That’s left families scrambling to find comparable services and feeling abandoned in a state that has historically failed to provide adequate support for this vulnerable population.

“There’s nowhere else to go besides sitting at home. And he’s deteriorating just sitting at home,” said Michael’s mother, Gladys Thomas, 72.

“I have to try to put his name on the list for some of the other workshops, but they have their own clients.”

Janet Szlyk, Lighthouse president and chief executive officer, cited a confluence of factors that led to the program’s end, such as funding constraints, lower participation and staffing challenges that emerged during the pandemic. She said the Lighthouse offers a total of 40 programs, and nothing else was cut.

The Adult Living Skills Program, however, was in danger before the pandemic. It had been running a deficit, but the Lighthouse subsidized the cost through its endowment, Szlyk said, since it was an “essential program” that “relieves the families during the day.”

Szlyk said Wednesday she hopes to reinstate a “reimagined” version of the program, with a greater focus on physical activity, by late summer, if not sooner. She said she is looking at the budget to make that a reality.

She said the Lighthouse was in “discussions” with the state and lawmakers, and “working with local providers on alternatives for program participants.”

“We always listen to the community and the Lighthouse has strong empathy for the families,” she said. “We want to make sure they are served.”

The program, held from 9 a.m. to 2:30 p.m. Monday through Friday, was free and included transportation to and from the Lighthouse building in the Illinois Medical District. It offered job training, activities to promote self-sufficiency at home, field trips and exercise.

Of the 43 adults enrolled, 31 were Black and Latino, according to a spokesman. As a whole, about 58% of the Lighthouse’s clients come from communities of color, he said. The new version might have fewer participants, he said.

Like other social service organizations, the Lighthouse suspended in-person programs from mid-March 2020 through August due to health concerns at the direction of the Illinois Department of Human Services, which funds and oversees programs for residents with developmental disabilities. Fewer participants returned when the program briefly reopened under capacity limits, Szlyk said.

The Lighthouse considered shifting the program to a remote model — offering some services in person and some online — but there wasn’t enough funding to support it, Szlyk said. A new state rate, developed for remote services, is about a third of what’s offered for in-person programming.

“The financial model was not something we could sustain for the long term,” Szlyk said.

DHS typically reimburses providers $13.13 per person per hour but increased the amount by 15% to $15.10 during the pandemic to cover additional COVID-19 expenses. DHS had never offered reimbursement for virtual services before, but providers began requesting it as they adjusted their programs. The department has started reimbursing providers of virtual day services at $5.46 per individual per hour.

DHS hired an independent consultant to develop the remote rate “based on a variety of factors including increasing the staff to student ratio and removing costs related to transportation,” a department spokesman said. “The Department will continue to work closely with partner organizations across the state to provide programming to communities most in need.”

For Gladys Thomas, the Lighthouse’s explanation for scrapping the program falls short. She said she didn’t want to send Michael back until he was fully vaccinated, so relying on earlier participation rates is misguided.

“He had a little job there and just got to get out and away from home,” Gladys Thomas said. “It was like an outing for them. ... It was great, until all of a sudden it wasn’t renewed.”

Michael Thomas attended the adult skills program for about 24 years, starting after he aged out of special education services at Chicago Public Schools. Complications from encephalitis as an infant left him legally blind and with brain damage, according to his mother. He lives at home with her and another sibling with developmental disabilities.

“Nobody can tell us why they closed our program,” Michael Thomas said on a recent day at home as he sat on the couch with his mom. At one point during the conversation, he hoisted his leg onto her lap so she could tie his gym shoe, one of the simple tasks he can’t do himself.

Janice Brown’s son, who is 38 and has autism, considered the Lighthouse a second home for more than a decade. The adult living skills program allowed her son, Jamal Adway, to connect with peers in a similar predicament and provided academic lessons.

“It gave him a lot of self-worth,” said Brown, 70. “That was the only program that accommodated him. There are no other programs for the blind with his other disabilities.”

Adway went back to the program when it reopened in September, but the Lighthouse suspended it two weeks later due to lack of participation, his mother said. The only programs accepting new clients are in the suburbs, Brown said, but taking public transportation to get there from their Gresham home is too complicated for her son.

He began taking piano lessons once a week to get back into a routine, but that’s no replacement for the full day of activities and relationships that came with the living skills program, Brown said.

“I don’t know where to go from here,” Brown said. “My son is just displaced. ... When they are adults, they are just out of luck. It’s harmful for them really. Because they will regress. What more can they do?”

Illinois has long failed residents with developmental disabilities. In 2011, a federal judge put DHS under a consent decree to ensure that people with developmental disabilities could access services in their own communities and wouldn’t be forced to live in large, privately run institutions. But a judge found the state violated the consent decree in 2017, and it remains out of compliance today.

Much of the stalled progress is attributed to a worker shortage fueled by stagnant wages for employees. A recent state-sponsored study called for lawmakers to allocate $329 million more to community providers, but Gov J.B. Pritzker’s proposed budget recommended a $122 million increase, and the budget passed by the legislature provided only a $170 million boost.

DHS serves about 36,000 Illinoisans with developmental disabilities — about 20,000 of whom take part in community day programs like ones offered by the Lighthouse. Others live in full-time residential facilities, smaller group homes or intermediate care facilities.

Szlyk, of the Lighthouse, said the staff who ran the day skills program pursued other opportunities or retired when it was suspended during the pandemic, so the center would have to build a new faculty to resume the program.

The Lighthouse will continue offering another program called VisionQuest that meets weekly and brings adults together to play in a musical band. The Lighthouse covers the full expense of the program without state support, Szlyk said.

Debbie Grossman, executive director of the Chicago-based Blind Service Association, said she was “heartbroken” to learn the adult living skills program had closed. There’s a need for this program, but existing providers likely don’t have staff that is trained to work with this population, she said.

“It’s very disappointing,” she said. “It’s such a unique program and I don’t believe there’s a program like it in the state.”