ILLINOIS INSTITUTIONALIZING of PEOPLE WITH DISABILITIES CONTINUES in 2016

 Please read this very nice article from Medill News Service* by  Shen Wu Tan. The State of Illinois continues to institutionalize people with disabilities that can, and should be living in communities in Illinois. 

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ILLINOIS DEVELOPMENTAL CENTERS ARE TO REMAINING OPEN

The seven Illinois state-operated developmental centers, housing individuals with developmental disabilities, will not close, according to the second proposed state budget.

wonderful article by Shen Wu Tan for Medill News Service | March 9, 2016
Due to the number of individuals still living in these centers and the amount of time it takes to transition these residents into the community, the state cannot justify shutting down the centers, said Marianne Manko, director of communications at the Illinois Department of Human Services.

“Everybody’s situation is so specific to them so we have to measure who is capable of living in what type of a situation that is going to be the safest for them and provide them with the best services,” Manko said. “Is it possible that we will keep other institutions open? Absolutely. Is it possible that we could shut all of them down over a ten-year period, for example? That is a possibility, too.”

Although no state centers will close, the Illinois Department of Human Services aims to have 50 fewer residents in state centers each year. Depending on the number of individuals entering centers, the number of residents who transition to community living varies from year to year.

Tony Paulauski, executive director of the Arc of Illinois, said he is disappointed that the budget plan does not include the closures of state centers. The organization called for the closures of six of the seven developmental centers, also referred to as state institutions.

By not closing developmental centers, Paulauski said the “second budget really flies in the face of all of the data” that displays the high costs of placing an individual in institutionalized care. “It’s better for people’s lives to close state institutions and invest in community living.”

The Arc of Illinois estimates the state spent approximately $429 million in 2014 during the Quinn administration to operate state developmental centers that served about 1,700 individuals with developmental disabilities.

For the 2017 fiscal year, the proposed budget sets aside $290 million for state institutions, according to Manko. The DHS reported that 1,662 residents live in developmental centers as of March 1.

Margaret Doering, 73, lived in Illinois state institutions for 63 years. Her parents moved her to the Dixon State School at age two, after listening to a family doctor’s recommendations that she should be institutionalized.

Declared as a ward of the state, Doering was taken to the institution by uniformed government officials and had nearly no contact with her family. Her younger sister, Katherine Hamann, didn’t even know she existed until she was 12.

Doering lived at the Dixon State School in Dixon, Ill., until she was 37 when the institution closed. Hamann then became her sister’s guardian and began working at the William A. Howe Developmental Center, where her sister transferred to and lived until she was 65.

Katherine Hamann (right) and her sister, Margaret Doering, enjoyed a post-Christmas dinner stroll near Katherine’s house in Palos Park in 2014. (Katherine Hamann)

While sifting through Doering’s Dixon State School records, Hamann discovered that her sister was sent to the infirmary repeatedly for multiple illnesses including hepatitis, dysentery and liver damage. As a way to prevent her from wandering at night, the staff tied Doering to her bed and overmedicated her, Hamann said.

When Hamann visited her sister at the state school, she was forced to travel to the outskirts of town to a building isolated by corn fields. During her first visit, she was overwhelmed by the number of people with disabilities crammed into one space.

There were about 140 residents living in Doering’s cottage, a space that could comfortably accommodate no more than 40 residents. The dorm-like bedrooms had four beds to a room and a lot of the furniture was built into the walls. Many of the residents, Doering among them, would pace about a large day room.

Once Doering moved to the Howe center, her quality of life improved but was not much better, according to Hamann. Doering shared a room with two other women and her possessions were constantly stolen or trashed. For the most part, residents were stuck in the center since staff did not often bring them to activities.

After 28 years at Howe center, Doering moved to the Sertoma Centre, a community living arrangement for people with developmental disabilities. She has lived there for the past eight years.

At the center, Doering receives more individualized attention and medical care and frequently socializes in the community, Hamann said. She has also stopped humming, a habit that Hamann said was a sign of distress that persisted at both state institutions.

While working as a state employee at the Howe center, Hamann became familiar with the type of care offered at state institutions. Now, as a part-time employee for the Arc of Illinois, Hamann works on the Going Home media campaign, which promotes the closure of institutions.

Through her work at the Arc of Illinois, Hamann said she continues to learn more and more about community living.

“In fact, a lot of people do better [in community living],” she said. “Some people with the biggest physical and behavioral challenges, if they get the right support, they get much more individualized attention.”

“I don’t think that they [developmental centers] are offering the type of care that we are paying for,” Hamann continued. “I think there is a tremendous amount of waste and overhead and a lot of money distilled into keeping these kind of falling apart, old buildings together. It’s just, in general, wasteful.”

However, Rita Winkler, president of the Murray Parents Association, said she thinks there is a need for developmental centers. She said these centers are essential because they can be the least restrictive environment for some including her son, Mark, 31, who has received quality care at Warren G. Murray Center in Centralia, Ill. for 20 years.

Santa Clause visited the Warren G. Murray Center during the 2014 Christmas holiday season. Mark Winkler, Rita’s son, had the chance to sit on his lap. (Rita Winkler)

“He is so happy,” Winkler said. “He is so well cared for. He has people who have worked for him, the same people that have worked with him for 16 years that know him inside out and upside down.”

Over 230 residents who live at Murray center have access to around-the-clock medical staff and also have the opportunity to actively engage with the community, Winkler added. “They go to basketball games. They go to movies. They go shopping. They go everywhere.”

For the Murray center, this is not the first time someone has tried to shut down its facilities. In 2012, Governor Quinn announced his plans to close the center, but the Murray Parents Association fought back by filing a federal lawsuit against the state to prevent the closure.

In 2014, Judge Marvin Aspen ruled in federal court that the state had the right to close the center, but under federal law, Illinois had to offer the residents all choices for living including state centers. The state halted all closure activity, and the US District Court in Chicago dismissed the lawsuit in March with the judge’s ruling intact.

“Under federal law, we have a right to a state center,” Winkler said, referring to the 1999 Olmstead v. L.C. Supreme Court case. “We have a right to a nursing home type center. Or we have a right to live at home with our family or in a small CILA [Community Integrated Living Arrangement]. It’s called choice, and that is what the federal ruling is.”

“I just think there needs to be a wide range of services,” Winkler said. “And I think if the state of Illinois would use our money properly, we could probably help all of these people and do it right.”

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Photo at top: The Quinn administration failed to close down the Warren G. Murray Center in Centralia, Ill., in 2012 due to a lawsuit filed against the state. The U.S. District Court of Chicago dismissed the lawsuit in Mar. 2015. (Rita Winkler)

* Journalism by students in the graduate program at Northwestern University's Medill School. Students are reporters for Medill News Service.

http://news.medill.northwestern.edu/chicago/illinois-developmental-centers-are-to-remain-open/

Prosecutors Weigh Severely Disabled Illinois Man's Death After Incident at State Institution

CENTRALIA, Ill. — Like most of the severely disabled residents at the Warren G. Murray Developmental Center in southern Illinois, Todd Clementz stuck to a routine: Deaf, blind and requiring constant supervision, he passed his days with meals, therapy and an evening bath.

By ALAN SCHER ZAGIER Associated Press | Dec 16, 2015
But in late March, Todd Clementz routine was disrupted when a worker at the state hospital gave him an unscheduled shower, during which the 46-year-old man choked to death. A jury in a coroner's inquest last month ruled his death a homicide.

Clinton County State's Attorney John Hudspeth told The Associated Press on Tuesday that he expects to decide soon whether to file criminal charges. The AP is not naming the former employee of the facility in Centralia. He was initially placed on administrative leave but later was fired for seeking work at another state agency during an internal investigation, according to Veronica Vera, a spokeswoman for the Illinois Department of Human Services that oversees the developmental center.

Tom Hatley, a state police investigator, testified at the coroner's inquest that the mental health technician who gave Clementz the shower told him that Clementz had missed his regularly scheduled bath "because he was exhibiting a behavior." Other workers testified that the forced shower was meant to help keep Clementz from going to sleep earlier than scheduled.

Within minutes, Clementz began choking on the cold water being sprayed from a hand-held shower wand, the trooper testified. His lips turned blue as he became unconscious and went into cardiac arrest. An autopsy determined Clementz died from choking on cold water as well as regurgitated food.

"This gentleman was waterboarded," said Tony Pauluski, executive director of  The ARC of Illinois, an advocacy group that wants the state to close all of its developmental centers by 2020.

Hatley said several co-workers of the technician — who is at least 6 feet tall and about 250 pounds — said he had previously given forced showers to discipline uncooperative residents. The trooper said he wasn't able to independently corroborate those accounts.

Vera said Clementz's death led to increased staff training and supervision, among other changes, including the replacement of suctioning machines designed to stop patients from choking.

But the death has ramped up pressure on the state to close the facility and six others that remain open. Other states are increasingly turning to smaller, community-based treatment options spurred by an evolving consensus on treatment and a series of federal court rulings.

Only Texas and New Jersey house more adults with mental or physical disabilities in state institutions. Thirteen states, including neighboring Indiana and Michigan, have closed all such facilities. At least 1,700 Illinois residents call the state developmental centers home.

Then-Gov. Pat Quinn targeted the Murray Center for closure in a 2012 cost-cutting move. But parents and guardians of patients at the institution and others like it sued in federal court, alleging it would violate the Americans with Disabilities Act.

In October, a three-judge panel of the 7th U.S. Circuit Court of Appeals upheld a district court ruling that sided with the state. The ruling deemed Illinois a "laggard outlier" in the national move away from institutionalization.

Rita Winkeler, a retired third-grade teacher who heads the Murray Parents Association, called Clementz's death an anomaly.

She says her son and others with severe disabilities would not be able to receive adequate treatment at smaller facilities. Mark Winkeler, 31, is a 20-year Murray Center resident with an IQ of 12, who can't speak and is unable to feed, dress or bathe himself, or use the bathroom on his own.

At 6-foot-3, but with severe osteoporosis, he walks haltingly with a pronounced hunch, his feet turned inward while navigating a living area where most other residents are bedridden or use wheelchairs.

"These parents — I think everyone would dream that their kids can live in the community," his mother said. "But one size doesn't fit all."

Homicide of Todd Clementz found in death at State of Illinois Warren G. Murray Developmental Center

CENTRALIA, Ill.- AP-Nov. 13, 2015--A coroner's inquest has ruled a homicide occurred in a resident's death at a state-run southern Illinois home for adults with developmental disabilities.

A Marion County jury made the determination Thursday night after hearing testimony that Todd Clementz, 46, was being given a shower as punishment at the Warren G. Murray Developmental Center in Centralia on March 30 when he began choking.

The Belleville News-Democrat (bit.ly/1NvzMes) reported that Clementz, who was deaf and blind, later died at a hospital.

Marion County Coroner Troy Cannon said evidence suggests the employee had previously taken similar steps with Clementz and other residents.

"Basically, there are indications that the employee had done this kind of thing in the past with this resident — and other ones, as well, even before this took place,'" he said.

The case was referred for possible prosecution to Clinton County State's Attorney John Hudspeth, who did not immediately reply Friday to an Associated Press request for comment. Clementz died at a hospital located in the part of Centralia located in Marion County.

Illinois Department of Human Services spokeswoman Veronica Vera said that two employees, whom she declined to name, were placed on administrative leave shortly after the death and one has since been fired. She said the agency will take further personnel actions as necessary.

The residential center had been slated for closing by the state as part of a broader plan to shift residents to private group homes. Opposition from employees, community members and relatives of residents helped prevent that move.

U.S. Court of Appeals Agrees that Illinois can Proceed to Close Murray Developmental Center

A Statement that Equip for Equality issued 10/16/2015 regarding the court’s decision.
(article follows below)

Recognizing a national trend to increase community-based services for people with disabilities and the proven benefits of community living, the U.S. Court of Appeals for the Seventh Circuit ruled that guardians of residents of Murray Developmental Center (Murray DC), located in Centralia, Illinois, cannot stop the State of Illinois from closing the facility

Following Illinois’ announced intention to close Murray DC in 2012, guardians of residents filed a lawsuit in federal district court seeking to stop the state from closing the facility. Claiming that both the community assessment process and the intended closure discriminated against residents in violation of the ADA and federal Medicaid law, the guardians sought an order from the court, called a preliminary injunction, to prevent the state from moving forward with its plans. After an evidentiary hearing, the district court rejected the guardians’ claims and denied the motion for preliminary injunction. The guardians then appealed the case to the 7th Circuit.

In upholding the lower court’s ruling, the 7th Circuit described Illinois as a “laggard outlier” in the national movement to transition residents out of institutions into community-based settings. The Court noted that only two other states, New Jersey and Texas, have a higher number of people with developmental disabilities living in state-operated institutions and 13 states have no state-operated developmental institutions whatsoever. The Court pointed to a body of research demonstrating that people with disabilities have a better quality of life living in the community—research that was cited in the amici curiae brief filed by Equip for Equality and its partners in the appeal. Further, finding that even if Murray closed the plaintiffs would continue to have the option of institutional care if they desired, the Court held that they failed to demonstrate the irreparable harm necessary to obtain a court order to prevent the closure of Murray DC.

“Equip for Equality has long-strived to ensure that people with disabilities have the opportunity to lead fuller, more independent lives in the community,” said Zena Naiditch, President and CEO of Equip for Equality. “The result in this case reaffirms the importance of increasing community-based options for people with developmental and other disabilities. Illinois must continue to bridge the gap that exists between it and most other states in fulfilling the federal community integration mandate.”

Read a copy of the court’s order.

http://www.equipforequality.org/news-item/u-s-court-of-appeals-agrees-that-illinois-can-proceed-to-close-murray-developmental-center/
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Effort to Deinstitutionalize Illinois Averts Challenge

article by JACK BOUBOUSHIAN for Courthouse News Service | Oct. 19, 2015CHICAGO (CN) - With Illinois focusing on ramping up community-based care for its residents with developmental disabilities, the Seventh Circuit refused to block the closing of a large state-run facility.

Illinois operates seven institutions for citizens with developmental disabilities, serving approximately 1,800 residents, but the state has been lagging behind in the modernizations of its care.
Studies have shown that individuals get better care from smaller residential programs, and that such facilities are cheaper to operate, but Illinois had the second lowest percentage in 2013 of developmentally disabled persons living in apartments that house six of fewer persons.

Mississippi was at the bottom of the list. Meanwhile, 13 states no longer fund state-operated institutions that house 16 or more residents.

As part of an effort to focus on these community-based facilities, Illinois announced a plan in 2012 to close its Warren G. Murray Developmental Center in Centralia, Ill., and its center in Jacksonville.
The Illinois League of Advocates for the Developmentally Disabled quickly filed suit,contending that the state's $13 billion deficit was driving the measure.

With Illinois planning to have residents assessed for possible transfer to a community-based facility, a federal judge refused to issue an injunction.

A three-judge panel of the Seventh Circuit affirmed Thursday, noting that the Jacksonville center closed in the interim.

The Murray Center remained open "only because of this litigation," according to the ruling. It serves 229 residents, some of whom have the developmental level of an infant or toddler. A majority have additional behavioral problems requiring high levels of staff supervision.

"To be 'institutionalized,' whether in a prison, a madhouse, or a 'state-operated developmental center,' is to be frozen out of society - a situation that even a severely developmentally disabled person can experience as deprivation," Judge Richard Posner said, writing for the three-judge panel.

The court noted that residents of a community-based facility are more likely to have their own room, and have access to stores, parks and movie theaters - places where they can participate in society, even if under staff supervision, rather remaining isolated in a medical facility.

"The plaintiffs say that residents of community-based facilities are treated worse on average than residents of institutional facilities," Posner wrote. "But they have not substantiated their claim by a systematic comparison of residents of the two types of facility," Posner said. "Their claim is undermined, indeed vitiated, by their refusal to recognize a tradeoff between possibly better staff assistance in an institutional facility and the greater freedom - the closer approach to normality - of life in a community-based facility."

Posner acknowledged that, as the population of Murray Center shrinks, it will eventually be closed, forcing the residents who remain to transfer or move to a community center, perhaps against the wishes of their guardians.

But "that will not be a discriminatory outcome," the 11-page opinion states (emphasis in original).
"The handful not transferred until Murray closes will not be treated worse than residents transferred earlier," Posner added.

Posner and his colleagues also rejected claims that the Medicaid Act entitles the guardians of Murray Center residents to insist that their wards remain there.

"The plaintiffs have presented no evidence that their wards would be denied the lawfully required level of care even if Illinois were to close all its SODCs [state-operated developmental center]," Posner said.

"The urgency required for emergency relief has not been shown," he concluded.

Zena Naiditch, the president of Equip for Equality, an Illinois-based disability rights organization, praised the ruling in a statement.

"Equip for Equality has long-strived to ensure that people with disabilities have the opportunity to lead fuller, more independent lives in the community," Naiditch said. "The result in this case reaffirms the importance of increasing community-based options for people with developmental and other disabilities. Illinois must continue to bridge the gap that exists between it and most other states in fulfilling the federal community integration mandate."

http://www.courthousenews.com/2015/10/19/effort-to-deinstitutionalize-illinois-averts-challenge.htm

Survey of Families of Adults with Developmental Disabilities

as is our policy we share information from all sources, though Ability Chicago Info supports community-based settings over institutionalized facilities.

CHICAGO, April 7, 2015 /PRNewswire-USNewswire/ -- VOR, a national nonprofit organization that advocates for individuals with intellectual and developmental disabilities, including autism, has released the results of its survey of families of individuals with profound disabilities.

Believed to be the first of its kind, the "Giving a Voice to Families and Guardians" survey gathered the perspectives of families of individuals with profound disabilities who receive care in Medicaid Intermediate Care Facilities (ICFs) or in home and community-based settings. About three-quarters of respondents for both settings were parents and guardians.

"There is the assumption that all people with disabilities are better served in small settings, an assumption supported by other surveys," said Jill Barker, a VOR Officer and Board Member who chairs the committee who undertook the survey. "Yet, the opinions of the families who know best are rarely sought."

The 1999 U.S. Supreme Court's Olmstead decision ushered in a new decade of aggressive "deinstitutionalization," the movement of individuals with developmental disabilities from facility-based settings to smaller homes. This trend continues in states, with pressure from the federal government.

Olmstead, however, does not mandate deinstitutionalization, says VOR.

"Olmstead should have settled the institution versus community debate," said Tamie Hopp, VOR's Director of Government Relations & Advocacy. "It expressly supports the right of individuals to receive care according to individual choice and need."

The survey, VOR says, was an opportunity for families and guardians to have their perspectives registered.  

Contrary to current public policy and trends, which support serving all people with disabilities in small homes regardless of level of disability, respondents' for individuals receiving facility-based care indicated a high level of satisfaction with their individuals' ICF and facility-based homes, staff competency, access to health care and services, and community integration.

"These responses revealed a sharp contrast between common misperceptions of 'institutions' as segregating and isolating environments and the perceptions of the families and guardians of individuals living in these settings," remarked Barker. "A strong majority believed that their individual would do poorly in a small, unspecialized setting."

VOR also asked respondents what they would like the government to know about deinstitutionalization, with most responding that what mattered most to them was that their family members received the care they needed and that their right to individual choice was respected.

Complete survey results are on VOR's website at http://vor.net/get-involved/vor-initiatives/464-vor-survey-giving-a-voice-to-families-and-guardians-of-individuals-with-intellectual-and-developmental-disabilities-in-various-residential-settings

SOURCE VOR

Second Death Investigated in a Week at Illinois Murray Developmental Center

The Associated PressApril 8, 2015
CENTRALIA, ILL. — A second resident's death is under investigation at a southern Illinois home for adults with developmental disabilities, less than one week after another death there led to a state police inquiry.

The Belleville News-Democrat (bit.ly/1CbDBQL ) reports that 56-year-old Gary Farris was pronounced dead at a Centralia hospital Saturday after he was found unresponsive in bed at the state-operated Warren G. Murray Developmental Center in Marion County.

Forty-six-year-old Murray Center resident Todd Clementz died at the same hospital on March 30. The Illinois Department of Human Services is also investigating both deaths, which appear to be unrelated.

Two Murray Center employees were put on leave when an initial review of the first resident's death revealed inconsistent statements from staffers.

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RELATED POST: 

Illinois State Police investigating death at Murray Developmental Center for Intellectual and Developmental Disabled

Read more here: http://www.bnd.com/2015/04/08/3753940/2nd-death-reported-at-southern.html#storylink=cpy

Illinois State Police investigating death at Murray Developmental Center for Intellectual and Developmental Disabled

After the death of a resident of Murray Developmental Center in Centralia on Monday, two staff members have been placed on administrative leave while the Illinois State Police investigates.

Murray Developmental Center is a state-run residential facility for people with intellectual and developmental disabilities.

as appeared in The Southern, article by Molly Parker | April 3, 2015

Acting Illinois Department of Human Services Secretary Gregory Bassi said in a statement released late Thursday night that during an initial review by the agency into the circumstances of the death, “we grew concerned by inconsistent statements given by staff members.”

Bassi said the matter was referred to the IDHS Office of Inspector General to carry out a full investigation. Based upon that office’s initial review, the matter was referred to Illinois State Police.

IDHS spokeswoman Veronica Vera said few other details are available at this time with the investigation in its infancy. She did say that the cause of death has been listed as natural causes after family of the resident declined an autopsy. The resident was pronounced dead at St. Mary’s Hospital, she said.

Though the investigation was prompted by inconsistent statements from staff, Vera said the state has “not formed a conclusion that wrongdoing actually occurred.”

Rita Winkeler, president of the Murray Parents Association, said she has talked to associates of the family, who relayed to her that family believes the middle-aged male resident died of natural causes, likely a heart attack.

She said it is her understanding that the employees who were placed on leave are direct-care workers and that they continue to be paid.

Winkeler said the investigation is standard policy, and praised DHS under Gov. Bruce Rauner’s administration for being transparent.

“We are very saddened but glad they’re taking this seriously and that DHS is going to become a new DHS that really does care about the residents and we think that’s a good thing,” she said.

Former Gov. Pat Quinn proposed closing the Murray Developmental Center during his tenure, prompting outrage from some parents of residents and union officials representing employees. As a gubernatorial candidate, Rauner said he planned to keep the facility open.

Deborah Kennedy, vice president of the abuse investigation unit at Equip for Equality, a federally designated protection and advocacy organization for people with disabilities in Illinois, said the agency has been made aware of the death investigation.

She said the agency will also review the death at which time it determines that its own investigation would not impede investigation by the state police.

“We’re certainly concerned about the death of anyone and our authority and role allows us to look into the circumstances of the death and we will do that,” she said.

http://thesouthern.com/news/local/crime-and-courts/update-isp-investigating-death-of-murray-developmental-center-resident/article_22f1f066-651f-53b5-b9e6-20f1517eb974.html

Local impact of Illinois Jacksonville Developmental Center closure - state-run institutions for developmentally disabled

wanted to share this insightful article, which explores the impact on cities as Illinois state-run institutions for people with developmental disabilities closing

article By PATRICK SMITH | Peoria Public Radio | Oct 14, 2014

No surprise: Illinois’ finances are in trouble. And the fix will likely involve some painful cuts. Monday, we told you about a fight to save one Southern Illinois institution. Today we look at what happened when the knife came down on another Illinois town.  

For almost 50 years Jacksonville, Illinois was home to a Capitol Records plant. It was built in 1965 at the height of Beatlemania. At its peak Capitol employed more than 1 thousand people.

"Capitol records made CDs, well, no one listens to CDs anymore," said Andy Ezard who is the mayor of this Central Illinois town, about 35 miles west of Springfield.

By 2009 the Capitol plant and distribution center had closed. That year, in just 6 months Jacksonville’s unemployment rate leaped from 6.6 percent up to 9.6. "We’ve lost a lot of jobs these past 10 years," said Ezard.

Jacksonville was hurting. The state of Illinois was in trouble too. The deficit was almost 45 billion dollars, and Gov. Pat Quinn set out to cut costs.  

In campaign ads this year Quinn boasts that he’s closed 50 state properties as governor. One of them was a big state institution in Jacksonville that served people with developmental disabilities.

Mayor Ezard and the Jacksonville residents fought hard to keep the center open. But they lost, and in November of 2012 the state of Illinois moved the last residents out of the Jacksonville Developmental Center.

There’s still a  debate over whether it’s been good or bad for the residents with severe developmental disabilities, but for the city it’s meant losing 440 more jobs. By January of 2013, Jacksonville’s unemployment rate had jumped up to 11 percent.

"Those aren’t just Jacksonville jobs, we had a big mix of people which came into this region which in turn gave us sales tax and really helped us out," said Ezard. Patrick Smith: "I’m standing in front of the main building of the now-closed Jacksonville Developmental Center. It’s a pretty idyllic morning here."

"And what’s it doing, it’s sitting up in weeds. That’s a hundred acres of prime Jacksonville property that’s not being used," said Travis Baptist. He gathers with his friends most mornings at the McDonalds across Morton Avenue from the vacant Jacksonville center.

Morton is the biggest road in Jacksonville. It connects the town to the highway.

"This town is so small and we’ve lost Capitol Records, the State Hospital, places have closed. And if they keep closing they’re gonna kill the town," said Baptist.

The looming property across the street serves as a constant reminder of the state’s role in all this. Most of the people I talked to were indignant about the center closing, and they worried about the fate of the residents. But I was impressed with how thoughtful they were. No one expected an easy fix.

"Yeah I understand the state’s broke, and I really don’t have the proper response but it basically comes down to fairness and where you provide the money," said Ezard.

To Ezard and Baptist that fairness boils down to the site on Morton Avenue. You can take those 400 jobs they say, you can kick us when we’re down. But those 100-acres of nothingness are your mess and you, the state of Illinois, should have to clean it up.

"If I were sitting with Gov. Quinn or Mr. Rauner I would say, I think you made a mistake here but since the mistakes already been made can we get some help here with redevelopment of that property?" said Ezard.

Ezard’s looking for state money to demolish the buildings. They have asbestos and will be costly to tear down. Or he wants some tax incentives to get a private company to take it over.

Ezard thinks with a little help they could turn those 100-acres from an ugly reminder to a symbol of rebirth. 

To Listen to the Accompany Radio Interview on Peoria Public Radio: CLICK HERE

http://peoriapublicradio.org/post/impact-jacksonville-developmental-center-closure

Illinois Battle over state-run institution for people with developmental disabilities is personal, political

as our policy to post different views on issues, wanted to share.

A sign about 10 miles outside of Centralia, Illinois. The push to close the Murray Developmental Center has turned many in the area against Gov. Pat Quinn. photo: Patrick Smith/WBEZ

By: Patrick Smith | WBEZ radio | Oct 13, 2014

Kathryn Groner, 26, has lived at the Murray Developmental Center for eight years.

The Murray Center is a state-run institution for people with developmental disabilities - things like cerebral palsy and autism. It’s a circle of single-story residential cottages on a grassy campus in Centralia, Illinois, about an hour east of St. Louis.

Groner lives in a big room with one other woman. The area around her bed is filled with firefighter memorabilia and dolls. She’s obsessed with firemen and calls people “butthead”--affectionately.

Groner is friendly and funny and completely there.

But she also has what her mom calls “meltdowns,” times when she tries to hurt herself, badly.

“I hardly ever show these to people,” her mom Judy Groner says as she presents a picture of Kathryn with a bruised and battered face. “Broken nose, day after day.”

When she has a “meltdown” Kathryn bashes her head against the wall as hard as she can, or slams her knees up into her face or bites her forearms.

“And afterward she would say to me ‘Mom, you better go and grab the frozen vegetables,’ because that’s what I would put on her bruises afterward. And that was our life. She was going to kill herself by hitting her head so much if I didn’t have a place like [Murray].”

Judy Groner says the decision to place her daughter in Murray was the hardest - and best-  decision she and her husband had ever made.

Before that they had struggled for years to keep Kathryn happy and safe at home, putting a helmet on her and lining her bedroom walls with corrugated cardboard. But eventually it became impossible.

She says Murray is a Godsend, and Kathryn is thriving. She’s down from multiple “meltdowns” a day to about one a week.

That’s why Groner was devastated when, two years ago, Illinois Gov. Pat Quinn announced he would be closing Murray and moving its 250 residents out to group homes in the community.

“We will provide individualized care, and achieve savings for the people of Illinois,” Quinn said in his 2012 budget address.

The announcement was horrible news to Murray residents and their guardians, and they immediately mobilized to fight the closing. But other disability advocates were ecstatic.

The decision was part of the “Rebalancing Initiative,” which also included plans to close the Jacksonville Developmental Center --that center has already been shuttered--and two other unnamed developmental centers. The initiative earned Quinn the President’s Award from an advocacy group called the ARC of Illinois.

Tony Paulauski, the executive director of the ARC of Illinois, says institutions like Murray are outdated and bad for residents. They warehouse people with developmental disabilities, while group homes in the community give people a chance for fuller, normal lives, he says.

In Paulauski’s ideal world, every one of the state’s institutions would close and all of the residents would settle into smaller homes.

“Community living is much more individualized, and presents a much higher quality of life. A much healthier, safer life,” Paulauski says.

And he says it helps the bottom line.

“You can serve three people in the community for the cost of one person in the institution,” he says.

Depending on who you talk to, that would either mean a savings for the state or it would allow the state to help more people. More than 20,000 people are on the state’s waiting list for some kind of developmental disability service. Advocates say moving people out of expensive institutions will allow people to come off that list.

A room of his own

Eddie Fleming lived in the Jacksonville Developmental Center until it was closed in 2012.

Now he lives in a gracious four-bedroom home in Springfield. He has two roommates, both former Jacksonville residents, but he has his own room.

He clearly loves his new home. He has control over the money he makes at a part time job picking up trash and has used that money to fill his bedroom with electronics - two stereos, a TV and a karaoke machine.

Fleming and his roommates get along famously, they smoke cigars on the porch and help cook delicious dinners.

Their services are provided by the Individual Advocacy Group, which manages the property and provides workers. But the lease is in Fleming and his roommates’ names. This is their home.

The people from IAG who work with Fleming say he has flourished since the move from Jacksonville, and they paint a grim picture of the services or lack of them he got from the state-run institution. Fleming, they say, is a testament to the benefits of community living.

One of the bedrooms in Fleming’s house is an office. But when they first moved in, in 2012, there was a fourth roommate. Early on he and Fleming got in a fight over the TV. It got smashed and the cops were called. That fourth roommate was taken away by police and moved somewhere else.

That sort of volatility - and response - is what terrifies Murray parents like Judy Groner. They say that kind of police contact is traumatic, and what if, they fret, the police who come don’t know how to deal with a person with developmental disabilities and hurt their loved ones?

The state only requires one worker in each four-person group home at one time, although IAG leaders say they usually have at least two workers.

Judy Groner says there is no way one or two workers could safely help Kathryn if she started having a meltdown. Especially if they were also responsible for three other people at the same time.

“I always kid, I say she’s like the incredible hulk and it takes five people to try and hold her, she’s that strong and powerful,” Groner says. “The community just isn’t set up for someone like her yet. And I just feel so bad because I want her to be able to leave Murray someday but it has to be on her terms, when she’s ready.”

But many researchers say the evidence doesn’t support this fear. Instead, they say people with the highest needs, people like Kathryn, are the ones who benefit the most from a move to the community.

‘Down here he just doesn’t seem to care about that’

Beyond the struggle over care, the fight to keep Murray open is political and geographical.

The fight over Murray pits those of us upstate against everyone down there - at least that’s how the people in Southern Illinois see it.

And it has a lot of Democrats and Republicans reversing their typical battle lines.

The strongest political ally of the Murray center is State Rep. Charlie Meier, 108th.

He’s a farmer by birth, and a small government Republican.

And yet he’s dedicated his life to keeping this big, government run institution open.

Then there’s the governor. A Democrat elected with the support of unions. And here he is pushing to eliminate 550 union jobs.

Paulauski of the ARC sees that as a sign of Quinn’s political bravery.

“Here you have a Democratic governor, strong support from these state unions. And then on the other side you have Republicans all of a sudden saying we need to keep these facilities open. This is where waste is in the Illinois disability system,” he says.

But Meier says it’s not about politics, it’s about geography.

“Centralia, most of it sits in Marion county and that is typically one of the five highest unemployment areas in the state. Those 541 jobs are the equivalent of 80- to 100,000 jobs in Chicago. Can you imagine if he tried to eliminate 80,000 jobs in the Chicago area? But down here he just doesn’t seem to care about that,” Meier says.

One thing people on both sides of the Murray fight agree on is that state government is there to help its most vulnerable citizens.

It may be the only thing they agree on.

Patrick Smith is a WBEZ producer/reporter.

http://www.wbez.org/news/battle-over-state-facility-personal-political-110925

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Ability Chicago is a supporter of people with disabilities being able to live in communities, and  support Mr  Paulauski and the many individuals and organizations that have worked tirelessly on behalf of people with disabilities ability to live, work, and be part of communities in Illinois. 

Illinois Community-based care people with intellectual and developmental disabilities | voice of an advocate

wanted to share a well written 'Letter To The Editor': The Southern Illinois News | Sept 27, 2014

To the Editor: 

I am writing to applaud the court's ruling of July 21, supporting the closure of the Murray Developmental Center in Centralia. This is a victory for the disability community and allows people with intellectual and developmental disabilities the opportunity to live beyond a state-operated developmental center (SODC) and be a part of a community of choice closer to family and friends.

Judge Marvin E. Aspen stated that the "community can provide the same if not better services than state-operated institutions," and I couldn't agree more. Supported by individualized, person-centered supports and services, community living offers all people with disabilities the opportunity to thrive and lead fulfilling lives in the community There are many true stories of self-advocates all over Illinois who have have moved from SODC's and are now living full lives in communities they call home.

The transition process provides each individual with a customized, person-centered plan to meet individual needs that include 24-hour care, 365 days a year. Judge Aspen further adds, "The initiative seeks to make community-based treatment a reality for more Illinois citizens who need and desire it, using the ACCT (Active Community Care Transition) process to help determine whether the community can accommodate a particular individual."

Even after the closure of Murray, Illinois will still have six state-operated facilities serving over 1,500 people with disabilities-continuing to make Illinois one of the most institutionalized states in the nation. Judge Aspen's ruling will help guide Illinois in the right direction and is in line with the national trend. People with disabilities should not be separate and deserve to live with choices, freedoms and equality.

Krescene Beck

Blue Tower Training

Advocate

Decatur

http://thesouthern.com/news/opinion/mailbag/voice-of-the-reader-community-based-care/article_bd5c822c-1900-531c-8179-4048cbe4d01f.html

Illinois Murray Developmental Center - temporary restraining halted closing

The Associated Press; May 30, 2013

CHICAGO (AP) - A federal judge has agreed to enter a temporary restraining order to halt the movement of residents out of a southern Illinois institution for the developmentally disabled.

U.S. District Judge Marvin Aspen's Thursday action will continue a move announced last week to stop transfers from Murray Developmental Center in Centralia until a hearing is held on an injunction.

Gov. Pat Quinn ordered the facility closed last year to save money. Parents of Murray residents sued to stop or delay the closure, saying residents wouldn't get the care they needed elsewhere.

The parents' lawyer says the move will allow the "status quo to be maintained at Murray."

The state's Human Services Department called the decision "short term" and said it is looking forward to making a strong case before the court.

Copyright 2013 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.