For years, deaths of disabled children at Illinois nursing homes faced little scrutiny. Regulators weren't always informed, coroners weren't notified — even some family members weren't told whether neglect was involved.
But that could soon change as the Illinois Senate on Tuesday joined the state House in passing sweeping reforms to safeguard thousands of children and adults with severe developmental disabilities
The proposed new laws, sparked by a Tribune investigation, require nursing facilities caring for the developmentally disabled to report all deaths to state regulators as well as to local coroners or medical examiners.
Other reforms include stiffer fines for poor care, a ban on new admissions at troubled homes, stricter rules on the use of psychotropic medications and fewer roadblocks to closing facilities.
State officials and some advocates described the measures as the most significant effort in a generation to help disabled people living in Illinois nursing facilities.
"This is a major victory for people with developmental disabilities and their families," said Michael Gelder, senior health policy adviser to Gov. Pat Quinn.
But some said the legislation doesn't go far enough. For instance, Wendy Meltzer, a leading advocate for nursing home residents, said the state will need more inspectors to enforce additional laws. "Otherwise, this whole exercise becomes pointless," she said.
Teresa Garate, assistant director of the Illinois Department of Public Health, disagreed, saying new powers will make inspectors more effective. Under the legislation, she said, "our department is better armed."
In October, a Tribune series documented a 10-year pattern of death and neglect at a North Side nursing facility now called Alden Village North. The newspaper found that 13 children and young adults had died in cases that resulted in state citations for neglect or failure to investigate.
State officials announced they would close the home, and Quinn asked his staff to draft legislation to protect residents at the roughly 300 other facilities in Illinois caring for the developmentally disabled.
The legislation, which is expected to be signed into law by the governor, applies only to facilities for people with developmental disabilities, such as cognitive impairment. Similar reforms were adopted last year for nursing homes for the elderly and people with mental disabilities.
In addition to reporting all deaths, facilities for the disabled would be required to disclose any medication errors or unusual incidents that occurred within 30 days of the deaths.
But neither the state nor coroners would be required to investigate.
"That's a problem," said Deborah Kennedy, head of abuse investigations at the watchdog group Equip for Equality. "The state is missing an opportunity to be very proactive."
Dr. Thomas Kupferer, president of the Illinois Coroners and Medical Examiners Association, said the legislation could help identify deaths that need investigating, and if neglect or wrongdoing were involved, "hopefully, it will be uncovered."
The proposed reforms also require facilities to notify a resident's guardian when inspectors find violations directly affecting that person, regardless of the severity of the infractions. The Tribune reported that some parents did not know that the state had cited Alden in the deaths of their children until told by the newspaper.
"That's a terrific step in the right direction," Kennedy said.
The legislation increases some fines, but advocates said the penalties remain low. The maximum fine would be $50,000 for large facilities and $25,000 for those with 16 and fewer residents, according to state officials.
"For for-profit places, you need something much stronger than that," said Zena Naiditch, president and CEO of Equip for Equality.
The plan also calls for stricter rules on the use of psychotropic medications, including new protocols to prevent drugs from being administered to residents without their understanding and consent.
Meltzer said some facilities have used psychotropic drugs "not only to treat the symptoms of diagnosed illnesses but also to control behavior so as to make life easier for the staff. We need legal controls that make it more likely that these dangerous drugs will only be given when it is appropriate and necessary."
Although the legislation does not boost minimum staffing levels, it mandates that children receive one-on-one time with licensed nurses.
Currently, kids are required to get at least four hours of one-on-one direct care each day. Low-paid nursing aides provide the bulk of this care. The proposal calls for the state to establish a rule requiring that nurses provide at least some of the care.
Amber Smock of Access Living, a nonprofit advocacy group, said the change was inadequate and more one-on-one time was needed.
"I don't think the parents of the children who died at Alden Village North would say that four hours a day was enough for their child," she said.
David Noe, whose 14-year-old stepson lived at Alden and died in 2010 in a case that resulted in a citation, said the legislation was "too little, too late for my son's benefit. But overall, it's going to help. Any kind of help is better than no help at all."
Responding to the legislation, Alden officials said in a statement: "We, along with others in our industry, have long advocated for this important reform. … We are pleased that it recognizes the unique needs of the developmentally disabled population and that they are a different population from other nursing home residents. We support this bill and we look forward to its implementation."
The facility remains open while appealing the state's effort to shut it.
Industry leader Michael Bibo of the Center for Developmental Disabilities Advocacy and Community Supports, which represents facilities for people with disabilities, did not return messages seeking comment.
Over the past several months, state officials, industry leaders and advocates met to discuss what reforms should be included in the legislation. Smock, who was involved in the talks, said the process was difficult at times because the needs of people with disabilities were weighed against what was cost-effective for the state and profitable for nursing home owners.
"What should be a debate about moral justice ends up twisted by budgetary demands and profit margins," she said.
Some advocates were upset that an amendment to the legislative package would carve out a separate regulatory structure for five facilities caring for people with severe mental illness. Backers of the amendment said it would ultimately help improve rehabilitation services for those residents. Opponents said it would perpetuate the segregation of the mentally ill.
sroe@tribune.com
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