Learn about the role of Medicaid in funding disability services, possible threats to Medicaid and the importance of advocacy around this issue. We"ll show you "how and "why"! Intended audience includes people with disabilities, family members/caregivers, and professionals. Tickets are free. Click on the title above to register. Choose from two opportunities to hear from three important Illinois advocacy groups! This is the afternoon training session. For more information please call Meg at 815-464-1832 or email Meg@thearcofil.org.
September 28, 2017 from 1 p.m. to 4 p.m. -- A full workshop/training.
September 28, 2017 from 6 p.m. to 7:30 p.m. -- Information and discussion.
University of Illinois at Chicago, 1640 West Roosevelt Road, Auditorium, Chicago, Illinois. (Parking Garage at 915 South Paulina Street, Chicago, Illinois)
The Research and Training Center on Community Living at the University of Minnesota, in collaboration with The Arc of the United States, is seeking caregivers to share their perceptions on a range of life-span issues impacting individuals with intellectual and developmental disabilities (I/DD) and their families. They are inviting people aged 18 years or older who provide frequent primary paid/unpaid support to a person with an intellectual or developmental disability (I/DD) living in the United States or its territories to participate.
January 17-March 30, 2017
Please click the image below to learn more and take the online version of the survey:
We are inviting people to participate in the 2017 FINDS survey. The goal of the survey is to learn more about the experiences of parents and family members who provide support to a family member with an intellectual or developmental disability.
Washington, DC – In light of a recently leaked draft Executive Order that would impact people with intellectual and developmental disabilities (I/DD) who are legally residing in the United States as well as people with I/DD who are hoping to legally immigrate, The Arc released the following statement:
“We are facing a civil rights crisis in our nation and people with disabilities are in the crosshairs with the latest draft Executive Order being circulated in the White House. The Executive Order, if finalized and signed by the President, would discriminate against immigrants with disabilities, making it harder to legally enter or remain in the country. To deport individuals with intellectual and developmental disabilities who are in our country legally or prevent them from immigrating, goes against the values of our nation.
“At The Arc we believe people should have a fair opportunity to legally enter and reside in the United States and become a citizen, without restrictions based on disability. This includes those needing protection as refugees, asylees, and victims of human trafficking.
“Focusing on an individual’s need for support is a form of discrimination against people with disabilities we have seen before. But Congress, in the past, addressed the problem by ensuring that people with intellectual disability are provided accommodations as they try to enter our country legally, become citizens, and achieve the American dream like their peers without disabilities. Broadening the criteria for excluding or deporting immigrants based on need for support will harm people with disabilities and their families who have much to contribute to our society.
“If a family is otherwise eligible to enter or remain in our country, they shouldn’t be turned away or turned out because their child or another family member has a disability and may need to access government services to live and participate in the community.
“We urge President Trump to reject this Executive Order. We also call on Members of Congress, as they have done in the past, to stand up for people with intellectual and developmental disabilities and their families as they seek inclusion in America,” said Peter Berns, CEO of The Arc.
The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.
The 115th Congress convened with an ambitious agenda to repeal or cut many critical programs that people with disabilities rely on for their health and wellbeing. Health care, Medicaid, and the Supplemental Security Income (SSI) program could all be on the chopping block.
The Arc of the United States is hosting a webinar on fighting attacks on healthcare and community integration on February 23, 2017.
You can register here. 150 spots only, first come, first served. Please join The Arc’s policy staff to learn about critical developments on Capitol Hill and what advocates must do to protect the Lifeline for people with disabilities:
Due to high demand, this webinar it now full. However, please sign up below to receive information about an additional webinar to be schedule.
Session dates:
Thursday, February 23, 2017
Starting time:
3:30 pm, Eastern Standard Time (New York, GMT-05:00)
In Illinois we house over 1600 people with intellectual and developmental disabilities in state institutions. That simply must end. In this short film, we set out to explore the issue and give a voice to those who are thankful they no longer live in facilities. Because no matter the challenges a person may face in life, everyone deserves a place to call home.
Nov. 1, 2016 / CHICAGO -- The centerpiece of the website is the Going Home Coalition's 25-minute documentary, Going Home: A Full Life in the Community. The short film makes the detailed case that the majority of Illinois' institutions for persons with intellectual and developmental disabilities (I/DD) be closed immediately. Featuring exclusive interviews with experts in the field and many individuals with I/DD, the documentary instead argues that citizens with I/DD deserve the right to live in their communities through programs and services that support community-integrated living arrangements or "CILAs".
Guided by Dr. Tamar Heller, Head of the Department of Disabilities and Human Development at the University of Illinois Chicago, and Tony Paulauski, Executive Director of The Arc of Illinois, Going Home: A Full Life in the Community gives viewers a stark tour of the current state of disabilities care in Illinois, supplemented by rare interviews with individuals who have transitioned out of institutions. The film also presents a number of statistics that paint a grim picture for Illinois — including the fact that over 1,600 people with I/DD currently live in Illinois state institutions, the third largest I/DD institutional population in the country. By highlighting Illinois' sobering disability landscape, it's the hope of the Going Home Coalition that viewers will be inspired to help create desperately needed change.
In addition to the full documentary, the new Going Home Coalition website features six extended film interviews with individuals with I/DD who have made successful transitions out of institutions into CILAs. These success stories explore the individuals' lives, homes, hobbies, and the views of their caregivers, in the hope that many other families and citizens can see the security and benefits of community living firsthand.
All of these success stories and the documentary Going Home: A Full Life in the Community are available now to stream online for free on the Going Home Illinois website.
Viewers motivated to continue exploring the issues or begin doing their own advocacy work will also find new tools to aid them in their research with the new Going Home Coalition resource center. Visitors to the site can download a variety of new informational packets, submit questions and personal stories, and quickly look up their Illinois State Representative contact information.
Going Home: A Full Life in the Community, the Going Home success story short films, and the newly redesigned website were funded by the Illinois Council on Developmental Disabilities (ICDD), and produced in association with The Arc of Illinois and Naperville-area digital agency and production house Launch Digital Marketing.
While Illinois has started to close state institutions, there is still more to be done. If you'd like your voice to be heard, The Arc of Illinois urges you to contact your local representative and tell them that you support the Going Home Coalition.
I was working on a story once about adults with disabilities and, in a day program on the West Side of Chicago, watched a caregiver lovingly cradle the head of a young man and adjust his position in a wheelchair. wonderful article by Rex Huppke for the Chicago Tribune | April 13, 2016
The man was able to move only his fingers, and even that was a struggle. Without the caregiver he was helpless, though certainly no less a person than anyone else. I thought then, and I think now, that those who care for people with disabilities, the ones who step in to handle the tasks some bodies or minds can't manage, are earth-born angels.
And it turns out we here in Illinois aren't treating those angels fairly. A story in Wednesday's Chicago Tribune by my colleague Vikki Ortiz Healy starts like this:
"Organizations that provide care to people with disabilities are reporting crisis-level shortages of employees needed to feed, bathe and perform other essential tasks for residents in Illinois, a situation that has prompted the closure of some group homes and kept hundreds of families on waiting lists for services."
The average wage for direct support professionals — the people who help people with disabilities in group homes and day service centers — is $9.35 per hour. The story notes that the wages haven't gone up in eight years, "leaving potential applicants in the improving economy to opt for jobs where they can make more money doing less grueling work."
The staffing shortages are leading to the closing of some group homes and the consolidation of residents into other group homes. It's causing parents whose children have been approved for residential services to wait with little hope for openings on the horizon.
The seriousness of a staffing shortage in this arena can't be overstated. I spoke with Tony Paulauski, executive director of advocacy group The Arc of Illinois, and he said: "When staff don't show up, holy cow. People's lives can be in jeopardy. Because of this, there can be medication errors. People aren't able to follow strict dietary requirements. In some cases we're putting health and safety at risk. It's serious stuff."
The benefits of giving people with disabilities the opportunity to live in their communities, as opposed to placing them in state institutions, are enormous. They are closer to family. They have greater opportunities to work and engage in the world around them, to live full and productive lives.
Paulauski told me about Bob Peterson of Naperville, a man in his mid-40s who spent many years in state institutions. He has cerebral palsy and other disabilities. Once Peterson got into a group home, Paulauski said, "his life exploded in a very positive way."
Peterson now does volunteer work, works in a day program in Naperville and hopes to get a job in the community. But none of that is possible without the support services he receives.
The wage issue, as with so much here in Illinois, is tied up in the budget impasse. Bills that would raise the wage for direct support professionals to $15 per hour still need to get through the state Senate and House of Representatives, and then would need support from Gov. Bruce Rauner.
If you're like me and you've spent time in group homes and around people with disabilities, making sure that the people who help them are paid fairly is a no-brainer. People with disabilities deserve as fair a shake at life as anyone, and if we can't provide them with those opportunities, shame on us.
But even if you haven't had a chance to get to know people like Bob Peterson, or have never witnessed the hard but admirable work that direct support professionals do, know this: Supporting people with disabilities and providing them with community living opportunities makes financial sense.
Paulauski said it costs about $60,000 per year to house a person in a Community Integrated Living Arrangement (the technical term for a group home) versus $257,000 per year to put a person with a disability in a state-run institution.
I ask two things of you on this front. 1) Get angry. This is an immediate problem that puts vulnerable people at risk. Contact your local legislators and implore them to address this issue, one that should have been dealt with years ago. An easy way to find your representatives is to go to www.elections.il.gov/districtlocator/addressfinder.aspx and enter your address.
2) Get happy. Do that by getting out and meeting people with disabilities in your community. Volunteer to help at local organizations. Spend some time with people who we still, sadly, tend to treat as "others." It will change your perspective and show you that the only thing separating us is the ability to do certain things.
And that separation can be bridged only by making sure good people are there to help.
We try and wait a few days after publication before we post articles from news agencies, but due to the urgency in Illinois of funding for many social service agencies, and programs. I decided to post article on the same day of original report.
If you could contact your Illinois Legislators on your opinion of issues addressed in the article. Also if you have a few extra hours, volunteer for a Social Service Agency, the help is needed. I will be volunteering tomorrow over in Chicago's westside,
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
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.”
### 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)
About 1.4 million people in Illinois have a disability, or 11 percent of the population, according to ADA 25 Chicago. Just 35 percent of people with disabilities in the state are employed, and 28 percent in Chicago, compared with 75 percent of people without disabilities. The median annual income of someone with a disability is $21,000, versus $31,800 for those without.
The debate to end sub-minimum wages and the use of segregated sheltered workshop has come to Illinois as the Senate Human Services Committee held a hearing on the state’s implementation of the Employment First Act.
Robin Jones, Co-Chair of the Economic & Employment Opportunities for Persons with Disabilities Task Force, gave the committee an update on the work of the Task Force and the State’s work on Employment First. She also reported that Charlie Weikel has been appointed at the Governor’s Employment First Liasion to the Task Force.
Equip for Equality attorney’s Barry Taylor and Cheryl Jansen reviewed Equip’s Employment First Blueprint. Barry talked about employment being a “civil rights” issue for individuals with intellectual and other developmental disabilities (IDD). Cheryl talked about the problems with coordinating employment supports between the Division of Rehabilitation Services and the Division of Developmental Disabilities as well as significant rate problems. Equip recommends revising the rate structure of supported employment to more adequately support individuals and incentivize integrated employment and restoring funding for extended supported employments beyond 18 months. Cheryl also said that the state needs to review its overuse of segregated settings for state use contracts.
Other recommendations on the use of sheltered settings included:
Amend regulations and policies for the creation of ISPs to require exploration of employment and justification for not pursuing integrated employment before day training or sheltered workshops are offered.
Amend regulations and waiver application to eliminate the presumptive eligibility for day training.
Provide training and technical assistance to service providers on how to create ISPs and effectively inform people with disabilities of the option to pursue integrated employment.
Revise guidance and training to service providers on how to conduct an ISP that results in a “meaningful day” for individuals.
Provide training and technical assistance for sheltered workshops on the shift to integrated settings, including fiscal strategies.
Regarding the Illinois Dept. of Central Management Services, the following recommendation are:
Amend the Business Enterprise for Minorities, Females and Persons with Disabilities Act and regulations to exclude sheltered workshops as disability owned businesses and increase the goal of contracts awarded to businesses owned by persons with disabilities to seven percent.
Conduct additional outreach to people with disabilities to increase the number of certified disability-owned businesses.
Amend the provisions of the Illinois Procurement Code relating to the State Use Program to require sheltered workshops to offer competitive employment and pay minimum wage.
Amend contracts with State Use vendors to require that workers are regularly informed about the choice and opportunity to work in integrated settings.
Amend the provisions of the Illinois Procurement Code relating to the State Use Program to require the State Use Committee to include more scrutiny of state contracts with vendors, including using benchmarks of how many people are participating in community, integrated employment.
Rene Luna from Access Living talked about phasing out subminimum wages which only lead to poverty for individuals with disabilities and how frustrated people with disabilities are with the employment system in Illinois.
Greg Bassi, DHS General Counsel and now Dept. of Human Services (DHS) Chief of Staff, shared that the Rauner Administration fully supports the implementation of Employment First and its principles. He said there is significant movement within DHS and the other state agencies to foster Employment First. The challenge facing the Administration is the implementation because we want and need to implement Employment First in a concrete and meaningful way.
Employment First needs to implemented at every level from the school system to adult services. It is no longer acceptable that individuals with disabilities are denied the right to integrated employment in the community due to current state funding and practices. Our employment system needs structural reform at every level to ensure a full life in the community for everyone.
Tony & Kim, Cheryl, Director Romano and Barry Taylor
Tony ###
Senate Committee Checks In On Employment First Act BY JORDAN ABUDAYYEH February 23rd, 2016 — As social service agencies are struggling to continue during the state budget impasse, there are questions about a plan to help those with disabilities.
The Illinois Employment First Act was signed by Governor Pat Quinn in 2013. The goal, to get those with disabilities competitive employment.
The co-chair of the task force says progress has been delayed because of the change in administrations and turnover.
She said in order to get the job done, lawmakers will have to be willing to make changes and investments.
“As things come forward to you for some of these things are going to require legislative changes. Some of the changes in the wavers and things of that nature. These are critical critical issues in us trying to re-balance how we’re spending our dollars,” said Robin Jones, Co-Chair, Illinois Task Force on Employment Economic Opportunity for Persons with Disabilities.
Lawmakers said they wanted to check in to see how they could make the process better for the implementation of the law.
Tony Paulauski Executive Director The Arc of Illinois 20901 S. LaGrange Rd. Suite 209 Frankfort, IL 60423 815-464-1832 (OFFICE) 708-828-0188 (CELL)
Governor Bruce Rauner State of Illinois 2016 Budget address was on February 17, 2016. While we still do not have a budget in place from last year, the results are being felt across Illinois.
The Governor introduced his second state budget yesterday, however, with no budget finalized for FY’16 after eight long months, will the General Assembly pay attention to anything he is proposing today for Fiscal Year 2017?
If the General Assembly is not willing to work with him deep cuts are forthcoming.
In recent years, the history of the Governor’s budget address, including during the Quinn administration, has been that the General Assembly has basically rewritten their own state budget. The difference is that before the Governor Rauner, lawmakers and the Governor have been able to reach agreement on spending priorities. Obviously this has not been the case this past year, and Human Services certainly is suffering because of that.
We are opposed to this budget which does not close any state institutions. It does not include a cost of living increase. It’s been 11 years since the last one. This budget does not include an increase in wages and benefits for Direct Support Professionals. None of the grants were restored. The PUNS waiting list remains at 22,000 people!.
In addition, important outside pressures on the Developmental Disabilities system remain unaddressed in this budget: compliance with the Ligas Consent Decree; new CMS rules that call for integrated community services; new Dept. of Labor overtime regulations; the Workforce Innovation and Opportunity Act (WIOA) which focuses on a renewed commitment to workforce development, and Employment First.
While we are opposed to this budget, there are areas of merit.
This budget does include the movement of 500 people off the PUNS waiting list because of the Ligas Consent Decree.
There will be 200 people transitioning out of ICFDDs into the community because of the Ligas Consent Decree.
No further cuts to rates or services.
Fifty people will move out of state institutions and 50 DCFS wards will also move into the community.
There are no payment delays expected because of the Ligas Consent Decree.
Respite care is still funded at the 90% level but there is no court protections so no payments are being made.
Balancing Incentive Programs, BIP, will continue
In the budget briefing, DHS Secretary Dimas and other Directors talked about these 5 transitional areas of Health & Human Services Reform:
Prevention and Public Health
Building Community Capacity
Paying for Value, Quality & Outcomes
Education & Self Sufficiency
Data Analytics
The Division of Developmental Disabilities budget is now $1.46 billion! A good deal of that budget is spent on institutional services.
Illinois currently spends $429 mil per year to operate 7 state institutions that incarcerate 1,678 individuals with developmental disabilities. That is $248,000 per individual per year or $700 per day! Illinois could save hundreds of millions per year by redirecting funds from state institutions to community living. The remarkably successful transition of individuals from Jacksonville Developmental Center proves this can work. The average cost of moving individuals from Jacksonville into the community was $104,000!
The Arc was extremely disappointed that the Secretary clearly stated in his comments that no state institutions would close this year. HFS Director Norwood also stated that there will always be individuals who need institutional care. We have a lot of work to do.
The Arc will continue to call for the closure of six of the seven fully operational state institutions and call for new revenue.
I suspect that the budget that has been introduced today will reinforce the findings of non-compliance reported in the Ligas Court Monitor’s 4th Annual Report.
In my opinion, DDD requires a total structural transformation by investing integrated community based services moving away from institutions and segregation . We also must focus on building social capital for the individuals we support. Lastly, we cannot support any budget that does not address the current Direct Service Professional Recruitment & Retention Crisis.
The Governor introducing his budget is the first step in the Illinois budget building process. It will be fascinating to see how the General Assembly reacts to this budget and any rewrites they will probably make.
I look forward to your comments and questions on the proposed budget.
Here is a link to the Dept. of Human Services Budget Briefing PowerPoint.
Tony Paulauski Executive Director The Arc of Illinois 20901 S. LaGrange Rd. Suite 209 Frankfort, IL 60423 815-464-1832 (OFFICE) 708-828-0188 (CELL) Tony@thearcofil.org
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."
If you are an individual with intellectual and/or developmental disabilities (I/DD) (or someone who provides assistance to an individual with I/DD), The Arc wants to hear about your experience applying for jobs online!
Over 85% of individuals with I/DD are unemployed and rely solely on family and/or government supports to get by. The lack of employment options for people with I/DD reduces opportunities for them to interact with their peers in an integrated setting and reinforces the harmful stereotype that people with I/DD are not productive members of their communities. The Arc works in a myriad of ways to improve the employment outcomes for individuals with I/DD to ensure they are able to lead independent, meaningful lives in the community in competitively paid jobs.
As businesses increasingly shift to online platforms, a major concern within the disability community over the last decade has been the accessibility of websites for individuals with disabilities. In an age where more than half of new hires are sourced from the web, it is vital to ensure that individuals with I/DD are able to utilize all of the available tools to gain meaningful community-based employment and stay out of poverty. Great strides have been made in recent years towards improving the accessibility of various websites for individuals with visual and hearing disabilities through methods such as closed-captioning and compatibility with screen-reading software. In allowing individuals to fully experience the web, such tools are as fundamental as ramps for wheelchair users.
Unfortunately, very little progress has been made on this front for those with I/DD. The Arc seeks to ensure that individuals with I/DD do not get left behind and become a web underclass. Like everyone else, individuals with I/DD desire to learn, socialize, and shop online as well as access job opportunities in this forum. Towards this goal, The Arc wants to find out about YOUR experience with applying for jobs online to assess how accessible (or inaccessible) these mechanisms are for you. We have developed two surveys – one intended for individuals with I/DD and the other for those who assist individuals with I/DD such as job coaches or family members – to find out more about your experiences applying for jobs online.
Our community’s ability to access these applications is vital to The Arc’s continued efforts to expand integrated, competitive, and community-based employment opportunities for individuals with I/DD and ensure that the integration mandates of state and federal disability rights laws are meaningfully fulfilled.
