Illinois cannot afford both institutional living and home-based services, disability advocates say

CHICAGO (WBBM NEWSRADIO) — Chicagoland advocates for the disability community said they hope Gov. J.B. Pritzker’s recent decision to start moving residents out of the state-run Choate institutional living center will signal a shift toward community-based living for all Illinois residents.

“It’s really something the leadership—both the governor and, hopefully, the Legislature—will embrace, which is, the rights of people to live with their families and in their communities,” said Zena Naiditch, the President and CEO of Equip for Equality in Chicago.

Naiditch said Equip has served as the federally mandated protection and advocacy system for people with disabilities for 38 years. That means it’s held special authority to make both announced and unannounced visits to state-run institutions as part of its watchdog efforts.

“When we go into these settings, so many people come up to us—they don’t even know who we are, other than they don’t recognize us as staff or family visiting—and they say they’d like to leave, with no prompting from us,” Naiditch said. “[They say], ‘Can you help me? I want to leave.’”

Following multiple resident deaths at Choate in 2003 and 2004, Equip issued a report in 2005 that described the facility as employing an “archaic system” that resulted in “tragic consequences” for people with disabilities. Nearly 20 years later, Equip’s Indpendent Monitoring Unit Vice President Stacey Aschemann said little progress had been made.

“Despite the resources that had been put into the facility—despite staff training, all the different types of things that might be in the toolbox to try to make things better—still, the same kind of findings are occurring today as occurred almost 20 years ago now,” Aschemann said.

Pritzker alluded to those findings in his March 8 announcement that Choate would be “repurposed” over the next three years. The plan included giving a majority of the 225 Choate residents the opportunity to transition into community-based settings or other state-run centers.

To help guide residents and families through the transition process, Pritzker said the state will partner with The Arc, a Mokena-based organization that already performs this type of work. The Arc’s executive director Amie Lulinski praised the governor’s decision but added that Illinois will need to continue investing in community provider organizations.

“I think that we all realize, to a greater extent, the issues with congregate care settings—particularly in light of the COVID pandemic,” Lulinski said. “In moving people out into the community, we are certainly going to need resources to make that happen.”

Lulinski said her message to legislators is that Illinois has ranked “near the bottom” in the country when it comes to community spending for people with intellectual and developmental disabilities.

“We really have a long way to go so that we’re average, in terms of what our expenditures are,” Lulinski said.

While Pritzker announced the transition of Choate residents, though, he also promised to fund improvements at state-run facilities and expand support for those residents. Naiditch, who praised the decision to move residents out of Choate, said no state in the country can afford to fund both institutional and community-based living.

“Other states have chosen to focus their investments heavily on home- and community-based services, and that’s a direction Illinois is struggling to do because of the fact that they’re trying to fund, essentially, a dual-system,” she said.

Advocates for community-based initiatives for people with disabilities, such as Going Home Coalition Manager Carole Rosen, have argued that the state has a legal obligation to reduce its reliance on institutional living and move toward a model that allows residents to live in their community.

“We need to understand that there are consent decrees in place, such as Olmstead, Ligas, Williams, and Colbert, that assure people with developmental disabilities the right to live in the least restrictive setting,” Rosen said.

Naiditch echoed that sentiment.

“I’m really hoping that policymakers and special interest groups—and we understand people’s concerns about jobs and the economy—but that they respect people’s human and civil rights who live in these settings and allow them to finally exercise some control over their own lives, just like everybody else,” she said.

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Featured Image Photo Credit: Going Home Coalition

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March 14, 2023 at 06:59PM

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