PINCKNEYVILLE, Ill. — A mother’s love is limitless. It means fighting for your child.
“We had 30 to 40 ER visits in less than three years," said Peggy Strong. "My daughter almost died.”
She said it was because of a problem her daughter Marjorie couldn’t tell her about.
“She also is non-verbal. She is incapable of fending for herself," said Strong.
It's a problem Strong said has been hiding for too long behind closed doors.
“People look the other way. They neglect them. They don't give them what they need," she said.
For nearly a decade, Marjorie lived in Pinckneyville, Illinois, at what’s known as a Community Integrated Living Arrangement (CILA), a taxpayer-funded group home licensed by the state and run by a private organization. They’re for people with intellectual and developmental disabilities, designed to better integrate them into society.
Strong said case managers told her it was the best option. Red flags seemed to prove otherwise.
“Every system in her body — respiratory, pulmonary, digestive — they were all conflicting and fading. She was failing," said Strong.
Strong said her daughter needs around-the-clock care and wasn’t getting it. Marjorie has a rare genetic disorder known as Phelan-McDermid syndrome. It causes severe intellectual and physical problems. She has muscular dystrophy. A stomach ulcer meant she eventually couldn’t keep food down.
“I don't think she was getting fed," said Strong.
Doctors told her to plan for the end.
“We had hospice on standby," she said.
“What needs to change?" asked the I-Team's Paula Vasan. "What needs to change to prevent people like your daughter from almost dying?”
“I think we need more oversight," said Strong.
Erin Kennedy is a spokesperson with Five Star Industries Inc., a nonprofit that runs CILAs around the state of Illinois serving more than 75 children and adults with intellectual and developmental disabilities. One of those CILAs is Marjorie's former CILA.
In an email, she said, “We always have cooperated with any entity that has ever requested information for our agency. Whether it be for surveying purposes, accreditation, or to help follow up with any accusation that has ever been made.
"Our mission is to provide programs and services which help the people we serve to lead safe and productive lives in our community. We have been in business since 1975. If a concern is expressed regarding someone we serve, we take immediate action and investigate the situation so the people we serve are safe.
"Whenever we learn of an accusation about a resident being physically harmed or verbally abused we always report this as required to the Office of Inspector General. They are the entity responsible for investigating such matters.”
Local lawmaker Charlie Meier believes people fall through the cracks.
“Is the state of Illinois doing enough to protect our most vulnerable?” asked Vasan.
“Not yet," said Illinois Republican Rep. Charlie Meier “Somebody has got to be there to watch out for them.”
There’s a push for more oversight. And a new state audit, released on Sept. 29, provides new insight. The report by the Illinois auditor general’s office explains there have been improvements to CILAs over the years, but there’s more work to be done, like implementing regulations that require more oversight of failing CILAs.
According to Stacey Aschemann, vice president of Equip for Equality, which provides legal and self-advocacy services for people with disabilities, the report highlights the need for regulations to require certain additional oversight when a CILA is failing. It also notes that oversight activities explicitly include looking at how a resident’s funds are handled.
Hugo Dwyer, executive director of A Voice Of Reason (VOR), a national nonprofit that advocates for the care and human rights of all people with intellectual disabilities and autism, said, “Overall, the Illinois auditor general’s office's report shows a system facing ongoing challenges."
Some disability rights advocates we interviewed believe pay is partly to blame. Unlike state-operated developmental centers, they say staff at CILAs are paid less, which means more turnover.
“A lot of times they didn't have staff that had ever met Marjorie. They didn't know anything about her diagnoses," said Strong.
Critics we interviewed also argue there are fewer, if any, unannounced inspections. And they believe it's harder to hold CILAs accountable with their low profiles. You won’t find signs on the door for example. Others argue that’s by design, to give residents their right to privacy and security.
To find out where these CILAs are, we filed open records requests and worked with local police, knocking on doors until one opened. We interviewed a caregiver, and are not revealing their name to protect their privacy.
“Are people who live here safe?” asked Vasan to the caregiver.
“Yes," she said.
We learned the CILA we visited is considered by local police to be one of the good ones. We asked what may be going wrong at others.
“It all comes down to the staff that you have," said the caregiver." A lot of the time, it is just one worker with all the residents.”
“Do you feel that's enough?" asked Vasan.
“I do not," the caregiver said. “They require just so much, you know, and you can't tend to seven people at one time.”
She said lack of staff can be potentially dangerous.
Emergency records reveal residents aren’t the only victims. Police reports highlight a case of a caregiver being “choked," with residents being “aggressive with staff” and one even attempting “murder."
“My face is all bruised up, and I just got swelled up," one CILA caregiver said in a call to 911.
Strong eventually pulled her daughter out of a CILA in 2016. Since then, she’s been living at a state-run facility for people with disabilities. She said she’s finally getting the care she needs, and thriving.
Some disability rights advocates argue chronic underfunding has led to problems within all types of places for people with disabilities, not just CILAs. We reached out at least seven times to the Illinois Department of Human Services, which oversees the CILA Marjorie lived in along with others around the state. No response by our deadline.
Kimberly Mercer-Schleider is the director of the Illinois Council on Developmental Disabilities. She said further investments in the home and community-based services is essential for improvement.
“For decades this system has been underfunded," she said. "Abuse and neglect should never occur in any setting. Illinois leaders need to listen to individuals with developmental disabilities when they say that they want the option to live in communities of their choice on their own terms and invest accordingly.”
Stacey Aschemann, vice president of Equip for Equality, said in an email: “While there is room for improvement in oversight for both the state operated developmental centers (SODCs) and Community Integrated Living Arrangements (CILAs) for people with intellectual/developmental disabilities, we do not agree that the SODC system is subject to more or better oversight than the CILA system.
"There are multiple layers of on-going oversight in the CILA system, including the Department of Human Services’ Bureau of Accreditation and Licensing, the DHS Division of Developmental Disabilities’ Bureau of Quality Management and the DHS Office of Inspector General (for abuse and neglect allegations, as they do at the SODCs).
"In addition, separate from these state entities, the Independent Service Coordination (ISC) agencies provides a case worker for everyone living in a CILA for people with intellectual/developmental disabilities. The case worker is required to meet with the individual in-person four times a year at a minimum, which can include unannounced visits. This was recently increased from two times a year, which Equip for Equality welcomed.
"Equip for Equality also conducts in-person visits at multiple CILAs throughout the year, with a large portion of this work involving follow-up with individuals who have transitioned from SODCs to CILAs to ensure that their needs are being met and addressing any problems related to their new placement."