Brian Kent, age 25
August 8, 2010
BY MAURA POSSLEY
Brian's parents were still in shock when they arrived at a Waukegan hospital on a fall night in 2002.They hadn't spoken much during the hour-and-a-half ride from their Oak Forest townhome.
They could think only of the news they had so far: Their 25-year-old son had arrived at the hospital with no pulse. Doctors couldn't revive him.
Jim and Linda Kent saw the white sheet pulled up to Brian's chin, covering the rest of his 100-pound frame.
He was gone, and something went terribly wrong.
The deputy coroner agreed. He looked Jim Kent in the eye that night.
"He says, 'He's 25 years old, young - I'd sure like to know how he died,' " Kent recalled. "I said, 'We do, too.' "
Eight years later, the Kents still aren't sure what happened to Brian.
They do know he never got the services he should have, as someone with profound disabilities in the state's care.
Though Brian's life had ended, his story would continue with his parents discovering a new way for their son to live on.
Through this one couple's determination to speak out, Brian's life became the inspiration of a new state law that will examine these deaths in a new light, in a bid to prevent another of these vulnerable residents from dying prematurely. The law takes effect Jan. 1.
"He was kicked in the abdomen. Nobody was held accountable, and that's just what floors me," Jim Kent said, reflecting on the nightmare his family was only beginning to face on that October night.
"His heart was excellent," his mother said. "He would have lived forever."
The baby brother
Brian Kent was born March 8, 1977, in Rock Island, a third child for the Kents. Sister Laura was the eldest, followed by brother Randy.
He had inherited his dad's traits - at least in his shock of red hair.
Quickly, the family knew there was something different about Brian.
And by age 10, Brian's autism and other disabilities needed more care than they could provide.
He had compulsive tendencies, whether it was arranging furniture in a certain way or knocking on windows or flipping through magazines. Knocking on a window one day, it broke on Brian and his mother found him standing in a bed room holding a piece of glass.
Brian was nonverbal and had vision problems, but he communicated with others physically - by gently taking their hand to a faucet if he wanted water, for instance.
He spent his youth in two facilities downstate before he was transferred in 2002 to the Kiley Developmental Center in Waukegan. Run by the state, it seemed the appropriate next step needed to monitor his medications and handle his care into adulthood, his parents said.
"They had everything right there," Linda Kent said. "It was so impressive."
Cottages shared by residents were laid out in an oval, with a walking path connecting them. The Kents thought Brian would love it there. He constantly was active, and it offered a place to safely be so.
Thirteen weeks later, Brian was dead. He died from peritonitis due to blunt force trauma to his abdomen, which caused a distended intestine. A coroner's inquest later ruled his cause of death undetermined.
Searching for answers
In the year after Brian's death, the Illinois State Police and state inspector general's office investigated Brian's death.
No charges ever were filed and no one person could be pinpointed for the injury to his abdomen.
The Illinois Department of Public Health also investigated and admonished Kiley staff for failing to properly care for Brian and ensure his safety. The department also required Kiley to take corrective action, which the center did.
The family was left feeling Brian became lost when he moved into Kiley, an expansive facility compared to his previous homes.
They felt no one was ever held accountable for a lack of care they believed led to his demise, and the set out to change that.
A year after their son's death, the Kents read about the Chicago-based Equip for Equality, a federal watchdog group that advocates for people with disabilities. They told Brian's story, and the poor care they felt he'd received.
So began their quest together to bring about more oversight in light of his death.
In its own report on Brian's time at the Kiley Center after state investigations concluded, Equip for Equality found that not one incident led to his death but many factors, including "the lack of recognition of Brian's value as a human being to direct care staff."
Equip for Equality has pushed for residents of state-run centers for the developmentally disabled be moved to smaller, community-based settings.
The group chronicled Brian's last day at Kiley and found he was unusually lethargic, was doubled over when he walked and vomited. It found staff assessments of his health were delayed.
When staff found he wasn't breathing and didn't have a pulse at 6 p.m., they failed to give CPR. Instead, they called his name, rubbed his legs and arms and propped him up in a chair, according to the report.
The group also found in his 13 weeks there, Brian, who had a staff member monitoring him 24 hours a day, had suffered 57 injuries, 18 of which were unexplained.
The Kents' quest became reality last month, when Gov. Pat Quinn signed what has become known as Brian's Law. It aims to prevent another early death of anyone receiving developmental or mental illness services statewide by creating a independent oversight committee.
The committee is charged with investigating deaths of anyone with a mental illness or physical disability receiving services by the state. They'll report their findings to the state Department of Human Services, which must respond to the committee based on its recommendations.
Members of the committee must be volunteers. Equip for Equality said the bill likely would not have passed if it required the state to pay the members, given the state's massive budget deficit.
The law's watchdog role into these deaths, the group said, comes at a critical moment as the state budget has scaled back social services.
"There's no question that (the Kents') personal story and willingness to share what happened made a huge difference and had a huge impact on legislators," said Equip President and CEO Xena Naiditch. "So I really think this is their bill, this is Brian's Law."
In a room at the top of the stairs in the Oak Forest home of Jim and Linda Kent, a memorial to Brian hangs. A dried flower wreath from his funeral adorns his framed picture, flanked by fake ice cream sundaes.
Soft serve was his favorite.
They had to put up something to remember Brian, his parents said.
Indeed, Brian Kent will live on even after his memorial doesn't some day.
"It's not going to bring him back, but we're hoping the law really changes things for others," Jim Kent said. "I guess it makes his life worthwhile."
In the eight years since 25-year-old Brian Kent died, his parents, Jim and Linda Kent, have struggled to find a way for their son to live on.
The Oak Forest couple saw their dream realized on July 23, when Gov. Pat Quinn signed what has become known as Brian's Law.
First introduced in the Illinois General Assembly in 2008, the bill received the overwhelming support of lawmakers this past spring session.
It helped that the Chicago-based Equip for Equality group, an advocate for people with disabilities, backed the bill after the Kents came to them in 2003 with the story of Brian's death. It's not often parents of children like Brian speak up, the group said.
The law creates an independent committee of experts to examine every death of a person with a mental illness or developmental disability who dies while receiving services at a state facility or community agency.
The team is volunteer-based and will report recommendations and findings to the Illinois Department of Human Services, which is required to respond. The committee must include people from the following professions:
• Physicians experienced in providing care to people with developmental disabilities and mental illness.
• Registered nurses experienced in providing care to people with developmental disabilities and mental illness.
• Department of Human Services staff not employed by the facility where the death occurred.
• Department of Public Health staff.
• State's attorney's representatives.
• Coroners or forensic pathologists.
• Staff from local hospitals, trauma centers or other emergency personnel.
The law takes effect Jan. 1.