By Ron & Carole Bergman
Jacksonville Coalition to Save Our State Facilities
This is a local news topic because Rockford residents have family members at Mabley in Dixon and other state-operated facilities for the developmentally disabled, including Singer. We are struggling to avoid the closing of Mabley, as are familes of residents in the other facilities that are targeted to close.
We need your help.
The state’s side has been presented numerous times, in numerous direct and indirect ways. We would like for your readers and viewers to clearly hear our side.
My son is a Mabley resident; I live in Rockford and am one of many parents of Mabley residents vigorously working to overcome Illinois Gov. Pat Quinn’s decision to close Mabley. A public committee meeting was held a couple weeks ago providing community input regarding the closing of Singer, another of the facilities the governor has chosen to close, and another was held last week in Dixon regarding the closing of Mabley.
Barb Cozzone, a resident of Cherry Valley, heads the Mabley parents group struggling to protect our family members from being moved from the well-run, efficiently-operated, small-comunity-type (CILA) Mabley Center. She is the mother of two Mabley residents, both of whom have been rejected numerous times by the private facilities the governor intends to utilize to house and “properly care for” residents of Illinois’ closed facilities. My son also has been rejected by the privately-owned facilities because they admitted they are not equipped to adequately care for him.
Below is an offering from others and Lonnie Johns, a member of the Jacksonville Coalition to Save Our State Facilities. Jacksonville is another of the facilities on the closed list, and their community meeting is this week. These comments appear to also be applicable to both of our local facilities, Singer and Mabley.
Ron Bergman wrote to the Tribune: “… Moving most of these residents is a traumatic event most of us gifted to not require this level of care will never understand. Once inflicted upon these people, those traumas are not as easily hurdled by them as it would be for you or me. It typically takes years for many of these people to overcome the type of trauma moving inflicts. To believe ‘they will get through it’ is woefully misguided.
“May I ask that the Tribune tell the other side of the story? Tell the story about the fact that Mabley is a CILA-type facility (a facility that offers a ‘small neighborhood group home’ environment) and meets or exceeds the capability of private CILAs to meet these residents’ needs, by those facilities’ own admission in rejecting Mabley’s residents numerous times.
“Tell the story of the parents, guardians and family members who are struggling to protect the best care many of these Mabley residents have ever had.
“Tell the story of the high praise the parents and guardians, those who know Mabley residents best, give the facilities and staff of Mabley. Respect their ability to judge what type of facility is best for their sons, daughters, loved ones. Report the fact that the Mabley staff, whether they be AFSCME members or not, have demonstrated day after day, week after week, month after month, year after year, that they are more than mere union-members doing a job protected by a union contract, that the Mabley staff members working with the residents are genuinely invested in providing the highest level of good care anyone could possibly hope for.
“Tell the story of who these professionals are, deep within their personalities. Tell the story that many of these AFSCME members would choose Mabley for their own children if they were in the position of having to determine the best for their family member.
“Tell the story of the groundswell of Mabley’s parents’ voices, struggling to be heard above nauseous rhetoric of the Springfield political crowd, that keep saying ‘Keep Mabley open. It is everything the governor and Mr. Paulaski of ARC have stated they desire for these Illinois citizens.’
“Readers have the ability to identify the whole truth if both sides of the issue are truthfully and completely presented to them.
“Tell the other side of the Mabley story that the present editorial did not address.”
The following was today presented by Lonnie Johns regarding the closing of the Jacksonville Development Center.
Closing JDC is a very serious matter
Illinois should make individual decisions for individuals with disabilities needing care. Eliminating one option for care violates their rights and the rights of their parents and guardians.
Not even the Illinois Department of Human Services (DHS) claims that the individuals at Jacksonville Developmental Center (JDC) can be immediately moved, but instead has testified that Illinois “must develop new services” whose costs cannot be quantified.
In DHS’s own 2010 study, 55 people died after Lincoln Developmental Center was closed, out of a total of 164 who died after leaving all 10 developmental centers from 2001 to 2008. Lincoln had 363 of the total of 1480 who left.
Lincoln had 24 percent of those who left, but 33 percent of the deaths. Closing JDC is a very serious matter.
Individuals with multiple disabilities, including very significant intellectual disabilities, sometimes have intensive and complex medical and behavioral needs for 24-hour medical care and other very specialized care for the protection of themselves and others.
Some who say they are advocates for individuals with disabilities have issued an Advocacy Toolkit on Institutional Closures. It asks if parents should have a choice, and it says: “No. None of us, whether we have a disability or not, has unlimited choices in life.”
This directly contradicts the U.S. Supreme Court in the Olmstead decision, which these same advocates say requires the closure of the Jacksonville Developmental Center.
What are the actual words in the Olmstead decision?
Olmstead requires a community setting ONLY “when the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.”
So, how can some advocates say that Olmstead requires JDC to close?
They are doing exactly what Supreme Court Justices Anthony Kennedy and Stephen Breyer warned against in 1999 in a concurring opinion as part of the majority in Olmstead:
“It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive for fear of litigation, to deprive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”
Justice Kennedy is usually the swing vote on the Supreme Court, and Justice Breyer is one of the more liberal justices. Illinois should heed their warning.
Many of the individuals at JDC have been rejected by those operating Community Integrated Living Arrangements (CILAs) or have been expelled from CILAs. CILA staff is not adequately trained, sufficiently supervised, or able to provide the medical and behavioral services needed.
Earnest’s son, Carl, was in two private placements. In the first, he was put on so many medications that he hardly functioned. In the second, he wandered off so often he was asked to leave. Carl then went to the Lincoln Developmental Center.
At Lincoln, he slowly improved and began to learn sign language. But then, Lincoln was to close. In less than a year, Carl was moved five times to a different room or a different building.
In 2002, Carl moved to JDC. Now, he actively uses sign language. He has learned personal grooming skills. Carl does not speak and is severely brain damaged, but Carl has a roommate, and Carl has a home.
As U.S. Supreme Court Justices Kennedy and Breyer stated in Olmstead: “In light of these concerns, if the principle of liability announced by the Court is not applied with caution and circumspection, States may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings devoid of the services and attention necessary for their conditions.”
Editor’s Note: Lonnie Johns is a member of the Jacksonville Coalition to Save Our State Facilities.
From the Oct. 26-Nov. 1, 2011, issue