Is There a Lesson to be Learned for Texas as Disability Rights Groups Push Toward Pushing the IDD Population into Lightly Regulated Group Homes?
Michael J. Berens, Chicago Tribune
Despite Illinois’ promise to reform troubled group homes for disabled adults, allegations of abuse and neglect have risen, staffing levels have fallen and state oversight has been sluggish, the Tribune has found.
At the same time, some vulnerable adults who failed to thrive in group homes have been quietly granted admission at a state facility, marking a dramatic shift in state policy.
Previously, state officials emphasized closing those facilities and moving residents to group homes.
One of those residents arriving from a group home was near death from disease. Others were victims of suspected sexual assault or suffered unexplained injuries, state records obtained by the Tribune show.
A 2016 Tribune investigative series, Suffering in Secret, exposed how Illinois cloaked evidence of harm and death at group homes as part of a botched cost-cutting plan to steer adults with disabilities away from state facilities.
State officials and legislators vowed to fix the system at the time, but many group homes remain dangerously unprepared today to shelter adults with profound disabilities, state enforcement records shows.
Problems are exacerbated by inadequate state funding for community-based services, among the lowest levels of support nationally, group home industry leaders said. And staffing shortages continue to plague the industry, which marked up 50 percent turnover rates, according to some group home owners.
Allegations of abuse and neglect reached a record high last year – more than 3,600 cases in fiscal year 2017, according to the state’s Office of Auditor General.
State oversight remains inconsistent, a follow-up Tribune investigation found. Some abuse and neglect victims waited weeks before they were interviewed by state investigators, audit records from fiscal year 2017 show. Suspects were not questioned for more than a month in other cases.
A gubernatorial-appointed board tasked with safeguarding residents failed to meet multiple times last year, state records show. Five of seven seats remain empty, including a mandatory position for a person with disabilities.
The Tribune also found that more than half of group homes are not wheel-chair accessible, undercutting state assertions that private residences offer more freedom.
Overall, more than 1,600 homes are not compliant with the American Disabilities Act, inspection records show.
Historically, Illinois has shrouded group homes in secrecy. Investigations are not publicly disclosed, including cases of fatal abuse or neglect. Group home addresses are deemed confidential. Even parents are forced to file public record requests to view state reports involving their own children.
The Illinois Department of Human Services, which oversees state developmental centers and group homes, says reforms set to launch this year will address some of those issues.
For the first time, group homes will be ranked in a web-based scorecard, which include inspection results and links to online copies of investigative findings involving abuse, neglect or financial exploitation. However, state officials will black out addresses to protect patient privacy.
Copies of investigative report summaries can be instantly downloaded, spokeswoman Meghan Powers said.
Officials also plan to change state policy so that families of group home residents automatically receive copies of state investigations, Powers said.
Human Services officials don’t dispute broad findings about investigations from the auditor general and the Tribune. But the state said that more investigators have been hired, reducing caseload backlogs and eliminated interview delays.
State officials confirmed that 22 new admissions have occurred since July 2016 at the Murray Developmental Center in Centralia. Most came from group homes. New residents will be admitted, state officials said, if the center is deemed the appropriate setting.
A desperate plea
After 16 years at a group home — one with a record of neglect cases and dozens of unexplained injuries — Marjorie Strong slipped towards death from medical complications.
At 35 years old, she possessed the intellect of a toddler. She suffered from Phelan McDermid syndrome, which strikes one in eight million newborns, as well as Duchenne and Becker muscular dystrophy. A cocktail of complications assaulted everything from her liver to kidneys.
By early 2016, she had been rushed to an emergency room 30 times in a three-year span, according to medical records.
Marjorie was sometimes left alone for hours on a couch in front of a television, her mother, Peggy, said. On weekdays, Marjorie was transported to a day program where she sometimes sat idle for most of the day.
There were five substantiated cases of neglect involving Marjorie from 2008 through 2016 at a home operated by Five Star Industries in DuQuoin, according to state enforcement records obtained by the Tribune.
In one case, Marjorie was “found in her bedroom, naked without sheets, blankets or pajamas, sitting on her mattress soaked in urine.” State investigators concluded that a caregiver had fallen asleep on the job.
Five Star officials self-reported the incident and fired the employee, state records show. Executive Director Susan Engelhardt said the nonprofit agency, founded more than three decades ago, serves 75 children and adults.
Most adults with disabilities prosper in small group homes, she said, but community residences are not generally designed to provide intensive, 24-hour medical care for those who develop profound problems.
In early 2016, Peggy Strong, a retired middle school teacher, desperately searched for a solution. Impulsively, she contacted the Murphysboro office of Rep. Terri Bryant.
“I expected the worse,” Strong said. “I’m a liberal Democrat. Bryant is a Republican. We’d never met. I had no clout. She had no reason to help me.”
But Bryant, who knew many families who raised children with disabilities, bonded with Strong, and said, “It became personal, not political.”
Bryant recommended Murray as a destination, but Strong resisted. “I agreed to visit, but I had all the stereotypes of a state institution in my mind. That’s not what I wanted for Marjorie.”
Yet Murray defied stereotypes, Peggy Strong said. Nestled on 110 acres, there was a gymnasium and swimming pool, a tropically-decorated cafeteria, private rooms, nurses everywhere and long hallways that led to outdoor pathways. Marjorie loved to walk.
In early 2016, Peggy filed an emergency admission application with the Department of Human Services. “There is no other safe and healthy option,” she wrote. “We have reached a level of desperate necessity.”
Human Services officials failed to act on the request, according to Bryant.
A secretive deal
Peggy Strong’s timing was bad.
Beginning in 2012, Illinois launched a controversial plan to close or downsize state centers. Then-Gov. Pat Quinn shuttered an aging facility in Jacksonville, then targeted the 325-bed Murray center and the jobs of more than 500 union employees.
By early 2016, Murray’s doors had been closed to new admissions for four years. More than half of the center’s beds were empty. Dozens of residents had been relocated to group homes.
Proponents of Murray’s closure argued that state money was better spent on community-based residences. The math was on their side – or so it seemed.
The estimated state cost to care for a Murray resident exceeded $200,000 a year; care for the same resident in a group home, on average, cost half as much.
But savings from group-home care are quickly eroded by patients like Marjorie whose frequent medical emergencies and prolonged hospitalizations soar into the high six figures — all covered with public dollars.
In an effort to block the state’s closure plan, Murray families countered with a federal lawsuit. A judge later ruled that Illinois had the right to close the developmental center.
But Murray supporters had an unexpected champion in Bruce Rauner, who had defeated Quinn for governor. Rauner held fast to a campaign pledge to preserve Murray.
Nonetheless, a cadre of career Human Services administrators still hoped to close Murray, driven by the belief that state centers were an antiquated luxury, according to state records and interviews with legislators and state employees.
Rep. Bryant turned to Rauner’s staff for added political muscle to deal with recalcitrant state officials. After a series of conference calls from Rauner’s staff, Human Services officials relented and opened Murray’s doors.
Greg Fenton, director of Developmental Disabilities for Human Services, said Marjorie was not immediately admitted because of previous plans to shutter the facility, which had reduced staffing and delayed maintenance repairs.
Marjorie arrived in July 2016, suffering from late-stage kidney failure, her esophagus so swollen and damaged that she could only swallow thickened liquids.
Empty beds, new arrivals
A majority of states have shuttered or downsized state institutions, some with histories of abuse and substandard care. Illinois is no exception.
Two state centers have been closed since 2009. And the remaining seven facilities are much smaller than they were. Overall, state centers hold about 1,600 adult residents today, compared with 2,500 residents a decade ago.
Murray shelters about 220 residents, down more than 100 from a decade ago.
The center receives fierce support from family members through a parents association, which was formed in 1971 and evolved into a politically adept grass-roots force.
Many improvements over the years, from an outdoor swimming pool to enclosed courtyards and gardens, were funded by families and the Centralia community. Area seniors arrive by the van loads and volunteer as foster grandparents.
In 2012, several high-ranking state officials maintained that all Murray residents could safely live in a community-based residence like a group home no matter how severe the disability.
But that prediction has been undercut by Illinois’ failure to adequately fund group homes, providers told the Tribune. Illinois’ ranks among the bottom states for funding community care, federal studies show.
Today, many see Murray as a vital safety valve. Like Marjorie, a majority of new admissions had lived at group homes, state records show.
“I think there is a necessary place for state facilities in our system,” said Susan Engelhardt, executive director of the nonprofit agency running the group home where Marjorie once lived.
At Murray, with 24-hour medical care, Marjorie’s health has stabilized and improved. For the first time, she drinks ordinary water without threat of choking to death.
Attempts to teach Marjorie sign language have largely failed. During a visit last month, Peggy Strong drilled Marjorie on a single phrase, thank you: a kissing motion as the right hand moves forward from her lips with a downward motion.
“I have this reoccurring dream where Marjorie appears to me and says, ‘Mom?’ I’m startled and I turn to her. Finally, I’ll learn what she’s thinking. What does she know? Does she know who I am. Does she know that I’m her mother and that I love her?”
She always awakens before Marjorie reveals anything.
As Strong prepared to leave, Marjorie stood rigid near the doorway of her private room. Marjorie tentatively raised her right hand close to her lips then lowered her arm.
“Did you see that?” Peggy said, hopeful but resigned that she may never really know what her daughter is thinking.
Legislative Hearing Notice
The House Committee on Human Services is having a hearing Thursday, March 15th. Hearing notice below. Please come and let your voice be heard!
COMMITTEE: Human Services
TIME & DATE: 10:00 AM, Thursday, March 15, 2018
CHAIR: Rep. Richard Peña Raymond
* Study the future delivery of services under a managed care model to individuals with an intellectual or