Hospital room

A room at Alden Village North, which was the subject of a Tribune investigation that helped spark new legislation to protect patients at disabled care centers. (Chris Sweda/Chicago Tribune)

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.