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She went to an Illinois facility. 2 years after, she can’t leave

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This article was produced for ProPublica’s Local Reporting Network in partnership with Capitol News Illinois. Kaleigh Rogers was in crisis when she checked into a state-run institution on Illinois’ northern border two years ago. Rogers, who has cerebral palsy, had a mental health breakdown during the pandemic and was acting aggressively toward herself and others.Before COVID-19, she had been living in a small group home; she had been taking college classes online and enjoyed going out with friends, volunteering and going to church. But when her aggression escalated, she needed more medical help than her community setting could provide.With few viable options for intervention, she moved into Kiley Developmental Center in Waukegan, a much larger facility. There, she says she has fewer freedoms and almost nothing to do, and was placed in a unit with six other residents, all of whom are unable to speak. Although the stay was meant to be short term, she’s been there for two years.The predicament facing Rogers and others like her is proof, advocates say, that the state is failing to live up to the promise it made in a 13-year-old federal consent decree to serve people in the community.Rogers, 26, said she has lost so much at Kiley: her privacy, her autonomy and her purpose. During dark times, she cries on the phone to her mom, who has reduced the frequency of her visits because it is so upsetting for Rogers when her mom has to leave.The 220-bed developmental center about an hour north of Chicago is one of seven in the state that have been plagued by allegations of abuse and other staff misconduct. The facilities have been the subject of a monthslong investigation by Capitol News Illinois and ProPublica about the state’s failures to correct poor conditions for people with intellectual and developmental disabilities. The news organizations uncovered instances of staff who had beaten, choked, thrown, dragged and humiliated residents inside the state-run facilities.Advocates hoped the state would become less reliant on large institutions like these when they filed a lawsuit in 2005, alleging that Illinois’ failure to adequately fund community living options ended up segregating people with intellectual and developmental disabilities from society by forcing them to live in institutions. The suit claimed Illinois was in direct violation of a 1999 U.S. Supreme Court decision in another case, which found that states had to serve people in the most integrated setting of their choosing.Negotiations resulted in a consent decree, a court-supervised improvement plan. The state agreed to find and fund community placements and services for individuals covered by the consent decree, thousands of adults with intellectual and developmental disabilities across Illinois who have put their names on waiting lists to receive them.Now, the state has asked a judge to consider ending the consent decree, citing significant increases in the number of people receiving community-based services. In a court filing in December, Illinois argued that while its system is “not and never will be perfect,” it is “much more than legally adequate.”But advocates say the consent decree should not be considered fulfilled as long as people with disabilities continue to live without the services and choices that the state promised.Across the country, states have significantly downsized or closed their large-scale institutions for people with developmental and intellectual disabilities in favor of smaller, more integrated and more homelike settings.But in Illinois, a national outlier, such efforts have foundered. Efforts to close state-operated developmental centers have been met with strong opposition from labor unions, the communities where the centers are located, local politicians and some parents.U.S. District Judge Sharon Johnson Coleman in Chicago is scheduled in late summer to decide whether the state has made enough progress in building up community supports to end the court’s oversight.For some individuals like Rogers, who are in crisis or have higher medical or behavioral challenges, the state itself acknowledges that it has struggled to serve them in community settings. Rogers said she’d like to send this message on behalf of those in state-operated developmental centers: “Please, please get us out once and for all.”

Taylor Glascock

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Special to ProPublicaRebekah Zienty, an active treatment administrator, helps Kaleigh Rogers play a piano, one of the few activities she enjoys, at Kiley Developmental Center.

‘Living inside a box’Without a robust system of community-based resources and living arrangements to intervene during a crisis, state-operated developmental centers become a last resort for people with disabilities. But under the consent decree agreement, the state, Equip for Equality argues, is expected to offer sufficient alternative crisis supports to keep people who want them out of these institutions.In a written response to questions, Rachel Otwell, a spokesperson for the Illinois Department of Human Services, said the state has sought to expand the menu of services it offers people experiencing a crisis, in an effort to keep them from going into institutions. But Andrea Rizor, a lawyer with Equip for Equality, said, “They just don’t have enough to meet the demand.”For example, the state offers stabilization homes where people can live for 90 days while they receive more intensive support from staff serving the homes, including medication reviews and behavioral interventions. But there are only 32 placements available — only four of them for women — and the beds are always full, Rizor said.Too many people, she said, enter a state-run institution for short-term treatment and end up stuck there for years for various reasons, including shortcomings with the state’s discharge planning and concerns from providers who may assume those residents to be disruptive or difficult to serve without adequate resources.That’s what happened to Rogers. Interruptions to her routine and isolation during the pandemic sent her anxiety and aggressive behaviors into overdrive. The staff at her community group home in Machesney Park, unsure of what to do when she acted out, had called the police on several occasions.Doctors also tried to intervene, but the cocktail of medications she was prescribed turned her into a “zombie,” Rogers said. Stacey Rogers, her mom and legal guardian, said she didn’t know where else to turn for help. Kiley, she said, “was pretty much the last resort for us,” but she never intended for her daughter to be there for this long. She’s helped her daughter apply to dozens of group homes over the past year. A few put her on waitlists; most have turned her down.“Right now, all she’s doing is living inside a box,” Stacey Rogers said.

Taylor Glascock

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Special to ProPublicaA housing unit at Kiley Developmental Center

Although Rogers gave the news organizations permission to ask about her situation, IDHS declined to comment, citing privacy restrictions. In general, the IDHS spokesperson said that timelines for leaving institutions are “specific to each individual” and their unique preferences, such as where they want to live and speciality services they may require in a group home.Equip for Equality points to people like Rogers to argue that the consent decree has not been sufficiently fulfilled. She’s one of several hundred in that predicament, the organization said.“If the state doesn’t have capacity to serve folks in the community, then the time is not right to terminate this consent decree, which requires community capacity,” Rizor said.Equip for Equality has said that ongoing safety issues in these facilities make it even more important that people covered by the consent decree not be placed in state-run institutions. In an October court brief, citing the news organizations’ reporting, Equip for Equality said that individuals with disabilities who were transferred from community to institutional care in crisis have “died, been raped, and been physically and mentally abused.”Over the summer, an independent court monitor assigned to provide expert opinions in the consent decree, in a memo to the court, asked a judge to bar the state from admitting those individuals into its institutions.In its December court filing, the state acknowledged that there are some safety concerns inside its state-run centers, “which the state is diligently working on,” as well as conditions inside privately operated facilities and group homes “that need to be addressed.” But it also argued that conditions inside its facilities are outside the scope of the consent decree. The lawsuit and consent decree specifically aimed to help people who wanted to move out of large private institutions, but plaintiffs’ attorneys argue that the consent decree prohibits the state from using state-run institutions as backup crisis centers.In arguing to end the consent decree, the state pointed to significant increases in the number of people served since it went into effect. There were about 13,500 people receiving home- and community-based services in 2011 compared with more than 23,000 in 2023, it told the court.The state also said it has significantly increased funding that is earmarked to pay front-line direct support professionals who assist individuals with daily living needs in the community, such as eating and grooming.In a statement to reporters, the human services department called these and other improvements to the system “extraordinary.”Lawyers for the state argued that those improvements are enough to end court oversight.“The systemic barriers that were in place in 2011 no longer exist,” the state’s court filing said.Among those who were able to find homes in the community is Stanley Ligas, the lead plaintiff in the lawsuit that led to the consent decree. When it was filed in 2005, he was living in a roughly 100-bed private facility but wanted to move into a community home closer to his sister. The state refused to fund his move.Today, the 56-year-old lives in Oswego with three roommates in a house they rent. All of them receive services to help their daily living needs through a nonprofit, and Ligas has held jobs in the community: He previously worked in a bowling alley and is now paid to make public appearances to advocate for others with disabilities. He lives near his sister, says he goes on family beach vacations and enjoys watching professional wrestling with friends. During an interview with reporters, Ligas hugged his caregiver and said he’s “very happy” and hopes others can receive the same opportunities he’s been given.

Taylor Glascock

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Special to ProPublicaStanley Ligas, 56, lives with three roommates at his home in Oswego, Illinois. 

Taylor Glascock

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Special to ProPublicaLigas’ clinical mentor, Nicholas Czech, helps prepare snacks.

While much of that progress has come only in recent years, under Gov. JB Pritzker’s administration, it has proven to be vulnerable to political and economic changes. After a prolonged budget stalemate, the court in 2017 found Illinois out of compliance with the Ligas consent decree.At the time, late and insufficient payments from the state had resulted in a staffing crisis inside community group homes, leading to escalating claims of abuse and neglect and failures to provide routine services that residents relied on, such as help getting to work, social engagements and medical appointments in the community. Advocates worry about what could happen under a different administration, or this one, if Illinois’ finances continue to decline as projected.“I acknowledge the commitments that this administration has made. However, because we had so far to come, we still have far to go,” said Kathy Carmody, chief executive of The Institute on Public Policy for People with Disabilities, which represents providers.While the wait for services is significantly shorter than it was when the consent decree went into effect in 2011, there are still more than 5,000 adults who have told the state they want community services but have yet to receive them, most of them in a family home. Most people spend about five years waiting to get the services they request. And Illinois continues to rank near the bottom in terms of the investment it makes in community-based services, according to a University of Kansas analysis of states’ spending on services for people with intellectual and developmental disabilities.Advocates who believe the consent decree has not been fulfilled contend that Illinois’ continued reliance on congregate settings has tied up funds that could go into building up more community living options. Each year, Illinois spends about $347,000 per person to care for those in state-run institutions compared with roughly $91,000 per person spent to support those living in the community.For Rogers, the days inside Kiley are long, tedious and sometimes chaotic. It can be stressful, but Rogers told reporters that she uses soothing self-talk to calm herself when she feels sad or anxious.“I tell myself: ‘You are doing good. You are doing great. You have people outside of here that care about you and cherish you.’”

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Poll: Support for Missouri abortion rights amendment growing

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A proposed constitutional amendment legalizing abortion in Missouri received support from more than half of respondents in a new poll from St. Louis University and YouGov.That’s a boost from a poll earlier this year, which could mean what’s known as Amendment 3 is in a solid position to pass in November.SLU/YouGov’s poll of 900 likely Missouri voters from Aug. 8-16 found that 52% of respondents would vote for Amendment 3, which would place constitutional protections for abortion up to fetal viability. Thirty-four percent would vote against the measure, while 14% aren’t sure.By comparison, the SLU/YouGov poll from February found that 44% of voters would back the abortion legalization amendment.St. Louis University political science professor Steven Rogers said 32% of Republicans and 53% of independents would vote for the amendment. That’s in addition to nearly 80% of Democratic respondents who would approve the measure. In the previous poll, 24% of Republicans supported the amendment.Rogers noted that neither Amendment 3 nor a separate ballot item raising the state’s minimum wage is helping Democratic candidates. GOP contenders for U.S. Senate, governor, lieutenant governor, treasurer and secretary of state all hold comfortable leads.“We are seeing this kind of crossover voting, a little bit, where there are voters who are basically saying, ‘I am going to the polls and I’m going to support a Republican candidate, but I’m also going to go to the polls and then I’m also going to try to expand abortion access and then raise the minimum wage,’” Rogers said.Republican gubernatorial nominee Mike Kehoe has a 51%-41% lead over Democrat Crystal Quade. And U.S. Sen. Josh Hawley is leading Democrat Lucas Kunce by 53% to 42%. Some GOP candidates for attorney general, secretary of state and treasurer have even larger leads over their Democratic rivals.

Brian Munoz

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St. Louis Public RadioHundreds of demonstrators pack into a parking lot at Planned Parenthood of St. Louis and Southwest Missouri on June 24, 2022, during a demonstration following the Supreme Court’s reversal of a case that guaranteed the constitutional right to an abortion.

One of the biggest challenges for foes of Amendment 3 could be financial.Typically, Missouri ballot initiatives with well-funded and well-organized campaigns have a better chance of passing — especially if the opposition is underfunded and disorganized. Since the end of July, the campaign committee formed to pass Amendment 3 received more than $3 million in donations of $5,000 or more.That money could be used for television advertisements to improve the proposal’s standing further, Rogers said, as well as point out that Missouri’s current abortion ban doesn’t allow the procedure in the case of rape or incest.“Meanwhile, the anti side won’t have those resources to kind of try to make that counter argument as strongly, and they don’t have public opinion as strongly on their side,” Rogers said.There is precedent of a well-funded initiative almost failing due to opposition from socially conservative voters.In 2006, a measure providing constitutional protections for embryonic stem cell research nearly failed — even though a campaign committee aimed at passing it had a commanding financial advantage.Former state Sen. Bob Onder was part of the opposition campaign to that measure. He said earlier this month it is possible to create a similar dynamic in 2024 against Amendment 3, if social conservatives who oppose abortion rights can band together.“This is not about reproductive rights or care for miscarriages or IVF or anything else,” said Onder, the GOP nominee for Missouri’s 3rd Congressional District seat. “Missourians will learn that out-of-state special interests and dark money from out of state is lying to them and they will reject this amendment.”Quade said earlier this month that Missourians of all political ideologies are ready to roll back the state’s abortion ban.“Regardless of political party, we hear from folks who are tired of politicians being in their doctor’s offices,” Quade said. “They want politicians to mind their own business. So this is going to excite folks all across the political spectrum.”

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Democrat Mark Osmack makes his case for Missouri treasurer

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Mark Osmack has been out of the electoral fray for awhile, but he never completely abandoned his passion for Missouri politics.Osmack, a Valley Park native and U.S. Army veteran, previously ran for Missouri’s 2nd Congressional District seat and for state Senate. Now he’s the Democratic nominee for state treasurer after receiving a phone call from Missouri Democratic Party Chairman Russ Carnahan asking him to run.“There’s a lot of decision making and processing and evaluation that goes into it, which is something I am very passionate and interested in,” Osmack said this week on an episode of Politically Speaking.Osmack is squaring off against state Treasurer Vivek Malek, who was able to easily win a crowded GOP primary against several veteran lawmakers including House Budget Chairman Cody Smith and state Sen. Andrew Koenig.While Malek was able to attract big donations to his political action committee and pour his own money into the campaign, Osmack isn’t worried that he won’t be able to compete in November. Since Malek was appointed to his post, Osmack contends he hasn’t proven that he’s a formidable opponent in a general election.“His actions and his decision making so far in his roughly two year tenure in that office have been questionable,” Osmack said.Among other things, Osmack was critical of Malek for placing unclaimed property notices on video gaming machines which are usually found in gas stations or convenience stores. The legality of the machines has been questioned for some time.As Malek explained on his own episode of Politically Speaking, he wanted to make sure the unclaimed property program was as widely advertised as possible. But he acknowledged it was a mistake to put the decals close to the machines and ultimately decided to remove them.Osmack said: “This doesn’t even pass the common sense sniff test of, ‘Hey, should I put state stickers claiming you might have a billion dollars on a gambling machine that is not registered with the state of Missouri?’ If we’re gonna give kudos for him acknowledging the wrong thing, it never should have been done in the first place.”Osmack’s platform includes supporting programs providing school meals using Missouri agriculture products and making child care more accessible for the working class.He said the fact that Missouri has such a large surplus shows that it’s possible to create programs to make child care within reach for parents.“It is quite audacious for [Republicans] to brag about $8 billion, with a B, dollars in state surplus, while we offer next to no social services to include pre-K, daycare, or child care,” Osmack said.Here’s are some other topics Osmack discussed on the show:How he would handle managing the state’s pension systems and approving low-income housing tax credits. The state treasurer’s office is on boards overseeing both of those programs.Malek’s decision to cut off investments from Chinese companies. Osmack said that Missouri needs to be cautious about abandoning China as a business partner, especially since they’re a major consumer of the state’s agriculture products. “There’s a way to make this work where we are not supporting communist nations to the detriment of the United States or our allies, while also maintaining strong economic ties that benefit Missouri farmers,” he said.What it was like to witness the skirmish at the Missouri State Fair between U.S. Sen. Josh Hawley and Democratic challenger Lucas Kunce.Whether Kunce can get the support of influential groups like the Democratic Senatorial Campaign Committee, which often channels money and staff to states with competitive Senate elections.

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As Illinois receives praise for its cannabis equity efforts, stakeholders work on system’s flaws

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Medical marijuana patients can now purchase cannabis grown by small businesses as part of their allotment, Illinois’ top cannabis regulator said, but smaller, newly licensed cannabis growers are still seeking greater access to the state’s medical marijuana customers.Illinois legalized medicinal marijuana beginning in 2014, then legalized it for recreational use in 2020. While the 2020 law legalized cannabis use for any adult age 21 or older, it did not expand licensing for medical dispensaries.Patients can purchase marijuana as part of the medical cannabis program at dual-purpose dispensaries, which are licensed to serve both medical and recreational customers. But dual-purpose dispensaries are greatly outnumbered by dispensaries only licensed to sell recreationally, and there are no medical-only dispensaries in the state.As another part of the adult-use legalization law, lawmakers created a “craft grow” license category that was designed to give more opportunities to Illinoisans hoping to legally grow and sell marijuana. The smaller-scale grow operations were part of the 2020 law’s efforts to diversify the cannabis industry in Illinois.Prior to that, all cultivation centers in Illinois were large-scale operations dominated by large multi-state operators. The existing cultivators, mostly in operation since 2014, were allowed to grow recreational cannabis beginning in 2019.Until recently, dual-purpose dispensaries have been unsure as to whether craft-grown products, made by social equity licensees — those who have lived in a disproportionately impacted area or have been historically impacted by the war on drugs — can be sold medicinally as part of a patient’s medical allotment.Erin Johnson, the state’s cannabis regulation oversight officer, told Capitol News Illinois last month that her office has “been telling dispensaries, as they have been asking us” they can now sell craft-grown products to medical patients.“There was just a track and trace issue on our end, but never anything statutorily,” she said.

Dilpreet Raju

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Capitol News IllinoisThe graphic shows how cannabis grown in Illinois gets from cultivation centers to customers.

No notice has been posted, but Johnson’s verbal guidance comes almost two years after the first craft grow business went online in Illinois.It allows roughly 150,000 medical patients, who dispensary owners say are the most consistent purchasers of marijuana, to buy products made by social equity businesses without paying recreational taxes. However — even as more dispensaries open — the number available to medical patients has not increased since 2018, something the Cannabis Regulation Oversight Office “desperately” wants to see changed. Johnson said Illinois is a limited license state, meaning “there are caps on everything” to help control the relatively new market.Berwyn Thompkins, who operates two cannabis businesses, said the rules limited options for patients and small businesses.“It’s about access,” Thompkins said. “Why wouldn’t we want all the patients — which the (adult-use) program was initially built around — why wouldn’t we want them to have access? They should have access to any dispensary.”Customers with a medical marijuana card pay a 1% tax on all marijuana products, whereas recreational customers pay retail taxes between roughly 20 and 40% on a given cannabis product, when accounting for local taxes.While Illinois has received praise for its equity-focused cannabis law, including through an independent study that showed more people of color own cannabis licenses than in any other state, some industry operators say they’ve experienced many unnecessary hurdles getting their businesses up and running.The state, in fact, announced last month that it had opened its 100th social equity dispensary.But Steve Olson, purchasing manager at a pair of dispensaries (including one dual-purpose dispensary) near Rockford, said small specialty license holders have been left in the lurch since the first craft grower opened in October 2022.“You would think that this would be something they’re (the government) trying to help out these social equity companies with, but they’re putting handcuffs on them in so many different spots,” he said. “One of them being this medical thing.”Olson said he contacted state agencies, including the Department of Financial and Professional Regulation, months ago about whether craft products can be sold to medical patients at their retail tax rate, but only heard one response: “They all say it was an oversight.”This potentially hurt social equity companies because they sell wholesale to dispensaries and may have been missing out on a consistent customer base through those medical dispensaries.Olson said the state’s attempts to provide licensees with a path to a successful business over the years, such as with corrective lotteries that granted more social equity licenses, have come up short.“It’s like they almost set up the social equity thing to fail so the big guys could come in and swoop up all these licenses,” Olson said. “I hate to feel like that but, if you look at it, it’s pretty black and white.”Olson said craft companies benefit from any type of retail sale.“If we sell it to medical patients or not, it’s a matter of, ‘Are we collecting the proper taxes?’ That’s all it is,” he said.State revenue from cannabis taxes, licensing costs and other fees goes into the Cannabis Regulation Fund, which is used to fund a host of programs, including cannabis offense expungement, the general revenue fund, and the R3 campaign aiming to uplift disinvested communities.For fiscal year 2024, nearly $256 million was paid out from Cannabis Regulation Fund for related initiatives, which includes almost $89 million transferred to the state’s general revenue fund and more than $20 million distributed to local governments, according to the Illinois Department of Revenue.Medical access still limitedThe state’s 55 medical dispensaries that predate the 2020 legalization law, mostly owned by publicly traded multistate operators that had been operating in Illinois since 2014 under the state’s medical marijuana program, were automatically granted a right to licenses to sell recreationally in January 2020. That gave them a dual-purpose license that no new entrants into the market can receive under current law.Since expanding their clientele in 2020, Illinois dispensaries have sold more than $6 billion worth of cannabis products through recreational transactions alone.Nearly two-thirds of dispensaries licensed to sell to medical patients are in the northeast counties of Cook, DuPage, Kane, Lake and Will. Dual-purpose dispensaries only represent about 20 percent of the state’s dispensaries.While the state began offering recreational dispensary licenses since the adult-use legalization law passed, it has not granted a new medical dispensary license since 2018. That has allowed the established players to continue to corner the market on the state’s nearly 150,000 medical marijuana patients.But social equity licensees and advocates say there are more ways to level the playing field, including expanding access to medical sales.Johnson, who became the state’s top cannabis regulator in late 2022, expressed hope for movement during the fall veto session on House Bill 2911, which would expand medical access to all Illinois dispensaries.“We would like every single dispensary in Illinois to be able to serve medical patients,” Johnson said. “It’s something that medical patients have been asking for, for years.”Johnson said the bill would benefit patients and small businesses.“It’s something we desperately want to happen as a state system, because we want to make sure that medical patients are able to easily access what they need,” she said. “We also think it’s good for our social equity dispensaries, as they’re opening, to be able to serve medical patients.”Rep. Bob Morgan, D-Deerfield, who was the first statewide project coordinator for Illinois’ medical cannabis program prior to joining the legislature, wrote in an email to Capitol News Illinois that the state needs to be doing more for its patients.“Illinois is failing the state’s 150,000 medical cannabis patients with debilitating conditions. Too many are still denied the patient protections they deserve, including access to their medicine,” Morgan wrote, adding he would continue to work with stakeholders on further legislation.Capitol News Illinois is a nonprofit, nonpartisan news service covering state government. It is distributed to hundreds of newspapers, radio and TV stations statewide. It is funded primarily by the Illinois Press Foundation and the Robert R. McCormick Foundation, along with major contributions from the Illinois Broadcasters Foundation and Southern Illinois Editorial Association.

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