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Wednesday, Feb. 18, 2009 06:28 pm

Advocates urge state

In February 2006, a resident of Howe Developmental Center died from having a pap smear. For most women, such a test is somewhat uncomfortable. For this woman — blind, profoundly retarded, non-verbal and suffering from heart disease — procedures like dental exams, mammograms and pap smears were so traumatic that the staff normally gave her an anti-anxiety medication to keep her calm. This time, she didn’t get the medication, and she became upset and “struggled continuously, causing staff to hold her arms and legs,” according to a report of the incident. Within an hour of the pap smear, the woman collapsed and died of a heart attack.

Her death was just one of 29 in the past four years at Howe, a state-operated facility in Tinley Park that’s home to more than 300 profoundly disabled adults. Investigated by several state agencies and the U.S. Department of Justice, Howe lost federal funding in March 2007 for failing to meet basic Medicaid standards, and has relied on millions from Illinois taxpayers ever since. In September 2008, the state Department of Human Services announced that it would shut down Howe; five of the 29 deaths have occurred since that announcement.

The plan to shutter the institution by July 1 has now been delayed. The bipartisan Commission on Forecasting and Government Accountability voted last month to wait until lawmakers had finalized the impeachment of former Gov. Rod Blagojevich before making a conclusive decision on the closure of Howe. The panel also suspended decisions on closing Pontiac Correctional Center and moving the Illinois Department of Transportation’s Division of Traffic Safety out of Springfield. The Pontiac and IDOT decisions are different; neither of those moves are based on health or safety concerns. The situation at Howe, advocates say, is urgent.

Since 2007, Howe has been the target of numerous unannounced visits from Equip for Equality, a nonprofit watchdog and advocacy organization funded by the federal government. Though each state has a similar watchdog group, Equip has a unique team — lawyers, investigators and medical professionals — entitled to enter state-run facilities such as Howe unannounced to make observations, conduct interviews and review records. This team, which was also instrumental in the 2002 closure of Lincoln Developmental Center, is a demonstration project for Congress that Equip CEO Zena Naiditch hopes will lead to the funding of similar teams nationwide.

Most states are phasing out large residential facilities like Howe and Lincoln and transitioning to community-based group homes for the disabled. Carlissa Puckett, executive director of Sparc, oversees 14 group homes in Springfield and says Illinois ranks high among states in spending for institutional care but ranks 51st — dead last among all 50 states and Washington, D.C. — in funding for community-based care. She echoes Equip’s stance, arguing that the $2.2 million the state spends per month to keep Howe open should be redirected to community-based homes, where care costs about $60,000 per resident per year instead of $145,000 at Howe.

Even though Equip has also found systemic problems in small group homes, Puckett says the smaller organizations will improve with increased funding.

“One of the things you don’t want to do is make families feel guilty about their choice, because they made the best choice they could. But times have changed,” Puckett says. “Some of those families have tried community-based services and had bad experiences, but one reason is the state has not supported the smaller homes.”

Closing large, traditional institutions like Howe is always controversial, since the immediate impact on the community includes a significant loss of jobs, and the families who have a loved one living in a residential facility normally believe that any untimely deaths are isolated incidents and not representative of a larger problem. Former Gov. George Ryan decided to close Lincoln Developmental Center only after he visited the institution in person and witnessed mentally-ill patients eating non-food items like cigarette butts and plastic (known as Pica behavior) while staff did nothing to intervene.

“He was absolutely appalled at what he saw, and talked about how disturbed and disappointed he was,” Naiditch says. “He was pretty blown away.”

She says Equip has asked Gov. Pat Quinn for a meeting, to urge him to speed the closure of Howe.”

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