Powerful editorial by the Chicago Tribune Editorial Board. Yes, transparency is important and needs to more forward but years of under funding community services has lead to this crisis.

We need the Governor and legislators to move away from funding obsolete state institutions and to make it a top priority to fully fund community services. Illinois can no longer morally afford to fund two systems any longer.

On Wednesday the Senate will hold a hearing on this crisis. The Arc will be there.

The moral test of government

Group homes and neglect: Raising the standards of care

By Editorial Board

“The ultimate moral test of any government is the way it treats three groups of its citizens. First, those in the dawn of life — our children. Second, those in the shadows of life — our needy, our sick, our handicapped. Third, those in the twilight of life — our elderly.”
— former Vice President Hubert Humphrey Jr., 1976

The cases were tragic and avoidable: A disabled man with a disorder that compelled him to eat nonfood items; he choked to death eating the insides of a stuffed animal. A severe bathwater burn left untreated. A missed dose of life-saving anti-seizure medicine. Failure to move an erratic client who lived on a busy street and darted into traffic.

Tribune investigative reporters Michael Berens and Patricia Callahan, in their series “Suffering in Secret,” uncovered myriad problems with the state’s oversight of disabled adults living in taxpayer-funded group homes. Heartbreaking stories of neglect and death exposed government oversight at its worst. Incompetent. Sloppy. Secretive. And in some cases, fatal.

As the state has shifted from institutional settings for adults with disabilities to community-based group homes, problems have emerged, intrinsic and external. Resources to care for this challenging population have been shrinking, often resulting in high-stress work performed by unqualified, underpaid caretakers. It’s a fundamental flaw of a dysfunctional state government whose vulnerable populations compete for scarce money alongside pension obligations, education costs and health care expenses.

Even the finest caretakers make mistakes that are careless, not malicious. Human error is inevitable in any job.

The Tribune uncovered 1,311 instances of documented harm to clients in the system since 2011, hundreds more than the Illinois Department of Human Services reported. At least 42 deaths were linked to abuse or neglect. Yet the department routinely sealed and redacted case documents, shielding from the public a category of claims considered “unsubstantiated.” Secretary of Human Services James Dimas, appointed by Gov. Bruce Rauner in May 2015, says he is committed to transparency, which may require a change in state law.

Flawed investigations fail victims of neglect in group homes

The Illinois Senate scheduled a Nov. 30 hearing to address concerns raised in the Tribune series. Step one: Open the books. Lawmakers, find a way to balance privacy rights with the public’s right to know.

In some instances, group homes were assigned to investigate themselves after a tragedy, a clear conflict of interest that Dimas says has been phased out.

But much more needs to be done.

Advocates for the disabled community place some blame on salary limitations that strain group homes. The state has not raised the hourly pay rate under which it reimburses caretakers since 2008. Even well-run group homes are being stretched — they either pay more to attract qualified workers and take a hit somewhere else, or they deal with the revolving door of low-paid staff members who can make more money flipping burgers.

A majority of the injuries and deaths the Tribune reviewed were linked to untrained and overworked staff members: They failed to properly supervise clients with eating and swallowing problems; failed to follow medical protocols; failed to separate aggressive clients from fragile ones. Some errors were tragically benign and linked to choking: a marshmallow treat, a McDonald’s outing, a stuffed snowman toy placed in a bed.

Mistakes cannot be eliminated. But they can be reduced and they can be reported openly and honestly. The department needs to be transparent. The Tribune had to build a separate database and mine public records from multiple agencies to piece together the truth. Break down the silos, lawmakers.

In Illinois group homes, adults with disabilities suffer in secret

Perhaps most vital, the department can hold its providers accountable and swiftly terminate contracts with companies that have poor track records. Dimas would not name specific organizations but said he already is taking steps to terminate contracts with companies not meeting standards of care. There are many, many good providers in Illinois. Scale it, Secretary Dimas.

This page long has supported relocating more disabled adults from state institutions to group homes. While institutional care is more appropriate for some individuals, group homes generally offer more flexibility for residents and are less expensive for taxpayers. But group homes are an option only if the state rigorously monitors, and reports, what happens in them.

The 11,400 disabled adults who live in group homes deserve a better path forward. Government can and should be measured by how it treats its most vulnerable. If Illinois cannot properly care for them, it doesn’t much matter how it performs in other categories. This the moral test of government.

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Copyright © 2016, Chicago Tribune

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Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
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708-828-0188 (CELL)