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Group home closures, other chaos for Peoria's disabled adults

Journal Star - 1/13/2019

Jan. 13--PEORIA -- About two weeks before the corporate caregivers of 45 developmentally disabled adults announced they were leaving Peoria, Jean Henning started receiving emergency calls from her 24-year-old daughter Kaitlyn, who was living in a group home in Peoria.

"Over Labor Day weekend all of a sudden we're getting panic calls from Kaitlyn," said Henning, who lives in Rochelle. "She said she wasn't getting her medications, and she knows the voices, the hallucinations, will start if she doesn't get her meds."

Kaitlyn's grandmother, who is her guardian, was told that Kaitlyn's medications were lost when the home's coordinator left. Kaitlyn has autism and schizophrenia. She can't miss a dose of her medication without risking a psychotic event, her mother said.

"She's on several psychotropic drugs -- there's only a 15 minute window that she can be without them as prescribed by her psychiatrist," Henning said.

When the situation continued into the next day, Henning and her mother made the 100-plus miles trip from Rochelle to Peoria.

"We were going to take her to the emergency room," said Henning.

By the time the family arrived, Kaitlyn had been medicated and she continued to receive her medicines after the family left, though the timing was not as precise as Kaitlyn's psychiatrist had ordered, Henning said.

About two weeks later, Community Alternatives Illinois, formerly known as ResCare and owned by the Kentucky-based BrightSpring Health Services, announced the impending closure of its Peoria and Pekin facilities, including the home Kaitlyn lived in.

The announcement disrupted the lives of 36 people living in group homes, and nine people living with host families in central Illinois, according to information the Journal Star received through a Freedom of Information request to the Illinois Department of Human Services, which regulates group homes in Illinois.

Closing and changing of ownership of group housing for developmentally disabled adults is just one of the difficulties these adults and their families face. They also struggle with medication issues, lack of oversight and a lack of options.

ResCare/CAIL declined to be interviewed for this article, but issued the following statement:

"Our commitment is to help people live their best lives every day, although from time to time, we must make difficult business decisions. As such, we've made the difficult decision to redirect our focus and commitment to core Illinois areas, which do not include Peoria.

"We've partnered with all parties involved and are working hard to ensure that the individuals we have served have as seamless of an experience and minimal disruption as possible during the transition to new homes.

"Our commitment to quality was not a factor in this decision, as we have earned full two-year provider certification in Illinois and our license is in good standing."

While the Department of Human Services did not give a reason why the homes were closed, saying "Community Alternatives Illinois made the decision to withdraw from providing services in the Peoria area," they did provide documentation of many violations found in recent months. The problems ranged from facility issues, such as a lack of bedding, soap and towels, and water heater temperatures set too high, to concerns about resident rights being restricted without written clinical justification, most concerning issues regarding the administration of medications.

"CAIL does not currently have sufficient staff who are authorized to complete the medication administration," an IDHS inspector wrote on a report. "The agency and/or contracted nursing staff are not going to each site to pass meds. Various CILA (Community Integrated Living Arrangements) recipients are being transported back and forth to other CILA sites where the nurses are passing their meds. Unauthorized staff are taking medications from the various homes with them for daily medication administration. CAIL has been informed that this is an unacceptable practice."

The medication issue was also a serious problem for the brother of Tara Cady, 25, a Montana resident. Jason, 21, lived in one of the Peoria group homes. He suffers from autism and a host of other issues, and without medication he can become violent, said his sister.

"My parents received the initial phone call from my brother. He said 'I'm not receiving my medication,'" she said. "He does understand that and knows what happens to his health if he doesn't get his medication."

But even more disturbing for Cady was when, a few weeks later, she learned her brother's facility was being closed, and he was going to have to move. With his behavioral issues, her brother had trouble finding homes willing to take him, and when she learned about the impending closure he had nowhere to go.

"He's been in two homes since March, now he's going to move again. It's detrimental to his health, all these disruptions in housing," she said.

Mary McGlauchlen is the executive director of Central Illinois Service Access, the independent service coordination agencythat oversees the care of disabled clients in the Peoria-area homes. She doesn't know exactly what prompted the closure of the ResCare/CAIL facilities. CISA had filed numerous complaints about the facilities with the Department of Human Services in the last two years, but little was done. So when she got a call about a meeting between Human Services and ResCare/CAIL in September, she was surprised at the result.

"The meeting was called on the spur of the moment after two years of reporting issues and concerns with ResCare," she said. "When it came right down to it, the state told them you are either going to have to withdraw from the Peoria area, or we will take away your entire contract from the state of Illinois. So I guess ResCare decided it was better to lose some of their revenue stream than all of it."

How many people have to suffer?

While ResCare/CAIL's sudden departure was difficult for residents and their families, chaos is something many of them have learned to live with. The October closure wasn't the first -- the same thing happened in 2016 when Bethesda Lutheran Communities made a hasty departure, claiming financial difficulty and passing the homes on to ResCare/CAIL. Every parent interviewed for this article said the time with ResCare/CAIL was difficult. They described filthy conditions, inadequate nutrition and more than a few visits from the police.

When ResCare/CAIL took over eight Peoria-area group homes from Bethesda Lutheran Communities in the fall of 2016, families were given very short notice. Most had no option but to leave their loved one in the facilities when ResCare/CAIL took over.

"Everybody was horrified about ResCare," said Peoria resident Maddy Beck, whose son had been living in a Peoria group home for only six months when ResCare/CAIL came in. "You can look up the IDHS website and see what complaints they have."

In an effort to provide families another option, McGlauchlen brought in representatives from Individual Advocacy Group, a Chicago-based not-for-profit that manages group homes. Parents liked what IAG had to say, but there was a problem -- they had no facilities in the Peoria area.

"They said they would work with us to open group homes in Peoria if we were interested. Of course most of us were, but that doesn't come quickly. You have to find houses and staff. It took a whole year to get it done. In the meantime, we were stuck with ResCare."

Some of the incidents

Families did their best to keep an eye on what was going on inside the homes once ResCare/CAIL took over.

"The stuff that went on was just crazy," said Beck. "The staff was so inconsistent -- you never knew who was going to be there. Sometimes there was no food in the house. You would go over and the refrigerator was empty. In the summer the air conditioning broke -- it was 90 degrees in the house. If I hadn't gone over there, they would have just left those guys in the house."

Peoria resident George Voorhees told a story so disturbing he had to pause to compose himself before relating it.

"I found out my daughter was not being given her meds to keep her regular, so then they gave her a heavy dose of laxative. It ruined a brand new mattress," he said. "It was such a mess, to the extent that the caregivers didn't want to deal with her. So instead of calling me or her mother to come clean her up, my daughter sat in her waste for a long period of time -- 12 to 14 hours. It was pathetic."

Chillicothe residents Lee and Mary Fran Nordstrom said the police were called to their son's group home numerous times.

"There were more than 400 police calls on the seven group homes while ResCare was in charge," said Mary Fran Nordstrom. "Two homes had more than 100 calls. Most of this was because the staff didn't know how to handle these people. They didn't know how to de-escalate the situation, and that was because they didn't have any training."

Complaints to the state from parents seemed to fall on deaf ears.

"This is how a complaint is handled: You send in a letter about a specific issue and three months later you get a letter saying that the incident is being investigated," said Lee Nordstrom. "Then six months later you get a letter saying the complaint was either founded or unfounded, and little other information. If you want more information you have to fill out a FOIA."

CISA, the agency which oversees the care of residents in group homes, also made numerous complaints about the ResCare/CAIL homes, said McGlauchlen, but until ResCare/CAIL closed, the Illinois Department of Human Services didn't do much about it.

"If there are consistent problems, there needs to be something in their rules and regulations to close a home -- three strikes you are out -- but there's nothing like that in the IDHS regulations," she said. "There are no corrective steps to take away a provider's contract. They can have multiple complaints and nothing happens. How many people have to suffer before there's some type of action?"

Lack of funding

Ever since the tenets of the Ligas v. Hamos lawsuit were approved by the courts in 2011, adults with developmental disabilities in Illinois have had the option to live in state-funded, community-based residences rather than large state-run homes. But those facilities have never been adequately funded, said Meg Cooch, executive director of Ark of Illinois, a not-for-profit advocacy group for people with developmental disabilities.

"The state is currently out of compliance," she said. "The rate of what Illinois pays for services is too low."

The lack of money has led to a long waiting list -- people are waiting years to get into a program. And ultimately the amount provided for people who are in programs is too low -- they are not getting the services they need.

According to the Institute for Public Policy for People with Disabilities, the average annual funding for a disabled adult in a home is $50,000, including both state and matching federal grants. Disabled adults living in large state-run facilities each get an average of more than $250,000 a year, said Cooch. Illinois is one of the worst states in the nation for funding community options, ranking 44th out of the 50 states for how well residents with developmental disabilities are being served by Medicaid programs, according to the annual Case for Inclusion rankings released Thursday.

Inadequate funding has made it difficult for group homes all over the state, but the Peoria area is having more problems than neighboring communities, said McGlauchlen.

"I'm not 100 percent sure why, to tell you the truth," she said. "Peoria has five times more crisis cases than any of our other nine counties we cover, and we cover Springfield and Bloomington. But there are a number of providers who have survived -- EPIC and CWTC are surviving and scraping by," she said about Empowering People, Inspiring Capabilities and the Community Workshop and Training Center.

McGlauchlen said the fact that ResCare/CAIL is a for-profit corporation may have contributed to its problem in Peoria.

"They give bonuses to their administration for filling beds," she said. "That doesn't lead to good matches in the homes." ResCare/CAIL frequently took residents with behavioral issues that other care facilities refused. The state pays more for those individuals, but if the match isn't done carefully it can cause problems in the home, said McGlauchlen.

But undoubtedly the biggest problem is caregiver pay, McGlauchlen and Cooch said. People are the core of these care facilities. Caregivers have a very difficult job that requires training, empathy and a great deal of patience. Low pay makes it hard to attract and retain good workers.

"Finding trained support staff that will work for the wage that's provided -- around $9 an hour with a couple bucks added for benefits -- is almost impossible in the Peoria area," said McGlauchlen. "All the providers are struggling to find staff."

Dr. Charlene Bennett, executive director of Individual Advocacy Group, a not-for-profit company that now has seven group homes in the Peoria area housing former ResCare/CAIL clients, said hiring support people is difficult all over the state.

"It's hard getting people to even want to apply. There is such opportunity elsewhere. We have an Amazon plant here where they are starting people at $16 to $17 an hour," she said.

In an effort to make it work financially in Peoria, the company chose to cut costs on office space.

"We are renting a room in a church," said Bennett. "We did that so we could bring in the best staff we could and pay them higher wages. We put our resources with the people as much as we could."

Parents are saying good things about IAG. Some residents have been in the homes for over a year, and some, like Lee and Mary Fran Nordstrom's son, just moved in. By Christmas, all of ResCare/CAIL's former clients had been situated with new providers, including another new-to-Peoria provider named Help At Home.

Several residents moved out of the area, including Tara Cady's brother, who moved into a home run by ResCare/CAIL in Kankakee, which is closer to his parents. Though the move was very disorganized -- Jason and his belongings weren't moved at the same time, and for a while Tara had no idea where her brother was or how to contact him -- in the end, he reported being happy with his new roommates.

Leslie Renken can be reached at 686-3250 or lrenken@pjstar.com. Follow her on Twitter.com/LeslieRenken, and subscribe to her on Facebook.com/leslie.renken.

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(c)2019 the Journal Star (Peoria, Ill.)

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