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.”
This article appears in Feb 12-18, 2009.
