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)

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

jahopkins@tribune.com