Kids with many needs have few options

The family of a nonverbal 11-year-old boy with autism who lives at a Hope Learning Academy residential home called Illinois Times in late August, detailing how the child, Noah, was admitted to HSHS St. John’s Hospital in Springfield with a blood infection and bruises all over his body. He stayed at the hospital for multiple days.

Jeff Otte, Noah’s father, told Illinois Times that a caseworker instructed him to contact the newspaper and the governor’s office about potential neglect at Hope’s residential units. Noah has a tendency to injure himself, and his father said he was unsure if residential staff were properly protecting Noah from himself.

He told IT dozens of reports filed about his son in the past three years or so – by staff mandated to report any signs of physical harm – allege various problems, injuries and neglect by Hope residential staff. Otte did not provide copies of the reports to IT, citing legal and privacy concerns.  

“This just keeps getting worse and worse, and then they try and fix it and it just keeps getting worse. We’re going around in circles now,” he said of his attempts to get Noah relocated to a different residential facility. “We’ve even tried to take it through the (Department of Human Services) in the state and we keep hitting roadblocks.” 

Otte said it’s not feasible for him to care for Noah himself, although the ultimate “goal is to get him home.” 

Otte, a retired firefighter who lives near Joliet, said he now works as a transportation specialist for organ transplant teams in Illinois, a job which requires him to be on-call for 24 hours at a time. In addition to Noah, he has six other children. 

While Otte expressed concern with the care his son is receiving, Hope Learning Academy is an option he said is rare in Illinois: residential living for children with autism who require extra care. There are only eight residential facilities in the entire state that accept these children, and Otte said they all have waiting lists.

Hope was founded in 1957 after Dr. Charles Jordan and his wife couldn’t find a school anywhere in the U.S. to serve their daughter, Judith Ann, who had multiple disabilities. By 1963, Hope had moved from a modest house to its present 26-acre campus near Lake Springfield. The nonprofit opened its first group home in 1999. In addition to the family-style homes it operates throughout the community, Hope provides a variety of outpatient services to children with autism spectrum disorders and other developmental disabilities. Other programs include The Autism Clinic at Hope, Therapy Relief at Hope, The Illinois Crisis Prevention Network and The Autism Program of Illinois. 

A Freedom of Information Act request from IT for the corresponding police report associated with Noah’s August hospitalization was rejected by the Springfield Police Department on the basis that redacting involved names “would not properly protect his/her identity.”

Otte’s lawyers did provide IT with the police report, which did not indicate an investigation would be opened. The report outlines how a DCFS caseworker reached out to police after seeing bruises on areas of Noah’s body that the caseworker did not believe Noah easily could reach.

The police report states that Springfield officer Brady Parrish visited Hope’s main campus the same day Noah was hospitalized. There, according to the redacted police report, staff told Parrish about Noah’s behaviors and tendency to injure himself and gave explanations for the unusual bruising.

CEO Clint Paul also informed Parrish that Hope manages 15 residential homes in Sangamon County and “each home is manned by two or more workers at any given time with no more than six kids in one (REDACTED),” the report reads. The officer noted, “I did not have to make a DCFS report due to (REDACTED) contacting me and already having an open case for (REDACTED). I have nothing further at this time.”

When reached by phone Aug. 27 and asked about the hospitalization of Noah one day prior, a Hope Learning Academy employee told a reporter, “We don’t have a comment at this time.”

Since then, IT has spoken to parents of four other children who currently reside, or used to stay, at Hope residential homes and reviewed hundreds of pages of DCFS investigations and hospital records provided by parents of children currently living at Hope facilities. Some of the records had portions redacted.

An anonymous complainant filed a DCFS report on May 8, 2021, alleging “multiple sanitary concerns” and understaffing at one of Hope’s group homes. The complainant said “the bedrooms are covered in feces and urine on the walls, floor and beds,” “the bathroom is also covered in feces and urine,” and that the staff would leave it there for days rather than cleaning it up. “This has been a continuous problem for months now,” the complaint alleges.

The report was determined to be unfounded, but the resulting investigation depicts the challenges of staffing and caring for children with significant needs around the clock. The same day the complaint was filed, a DCFS investigator visited the Hope home named in the allegation and reported that “while some issues were observed, it was not to the degree that it is unsafe for the children to be there,” according to records obtained by IT.

DCFS visited the residence again in the days and weeks after the complaint was filed. During a visit three days later, a caseworker wrote: “the home smelled strongly of human urine and human feces.” One month later, DCFS investigators following up on the same case spoke to a Hope nurse who said residential staff were not properly administering medications, according to the report. 

Some parents agreed to speak to an IT reporter on background but requested anonymity because their children still live in group homes operated by Hope. The parents provided IT with copies of five DCFS reports filed between 2020-2024, each two to three dozen pages long. Two reports were found to be “indicated,” meaning DCFS concluded an instance of abuse had occurred. One resulted in the employee responsible for the abuse being fired. IT is not making these reports public in order to protect the identities of the victims.

Hope’s guidelines on how staff should intervene when a child is exhibiting erratic behavior is outlined in one of the DCFS reports and specifically forbids corporal punishment. The guidelines also state that an employee can be discharged for child abuse or neglect, mistreatment of a client or conduct which endangers the safety or welfare of the clients.

Otte said he’s worried about the well-being of other children living in Hope’s residential facilities.

“We need to expose the problem because I don’t think we’re the only family,” he said. “Someone’s life is on the line, and I don’t want it to be Noah. I don’t want it to be anyone; I want it to be stopped before that.”

Limited options for care

Missouri resident Tess Cook-Gurcio said her son, Luke, needed to attend a residential program, as in-home care became unaffordable and inadequate for his needs. While she faced the same challenges in trying to care for her son as Otte, Cook-Gurcio said she was very pleased with the residential environment at Hope.

“He was a big guy, so by the time he was 9, it was really tough for our in-home staff – that we were paying out of pocket for anywhere from 25 to 40 hours a week – to keep him safe,” Cook-Guercio said. “There were a couple times where he took me down. I managed to break a tailbone one time, managed to pull my shoulder out of (its) joint and he didn’t intend to be aggressive, he just was so impulsive.”

She and her husband ended up paying $200,000 out of pocket for Luke’s behavioral therapy services before he entered Hope at the age of 9. She said they lived with her parents and saved rigorously to afford Luke’s care.

“We were exceptionally blessed. There are people who have a lot fewer resources, who are in much more dire straits when it comes to trying to get help,” she said. “We have so much support, and it was still hard to survive even with great supports.” 

Cook-Gurcio said the decision to send Luke to a residential home hundreds of miles away was far from an easy one, but a choice that many parents across the country face.

“It’s really hard for a lot of people to imagine… (you’re) living with someone who your entire household revolves around, and how mentally exhausting it is to do 24/7, year-round,” she said.

“It’s an exceptionally difficult decision for parents, even when you do it as thoughtfully as you possibly can…  I did about six months of therapy before Luke entered Hope school and then for a while after,” she said. “That was a very tough time in life for us to have to make that decision, but he’s done amazing. He is Mr. Happy-go-lucky, as long as he has Wi-Fi and orange Gatorade and some chips, life is awesome. I think Luke is probably happier than most of the people I know.”

During his time at Hope, Luke would spend most weekends at home, with his grandparents around as additional help. He aged out of the program when he turned 22, like all other residents.

Luke, now 24 years old and over 6 feet tall, attends a day program in Jacksonville and is in a good spot, his mother said. She praised Hope for instilling good social skills.

“Overwhelmingly, he learned so many good skills there,” Cook-Guercio said. “Now he transitioned into an adult program, a day program where they do different kinds of odd jobs and he seems to really enjoy that. He can’t be a guy who doesn’t have something to do. He needs a lot of structure and he needs any kind of task to engage him.”

Diane Hudson, a fellow parent of a child with special needs, said her experience with Hope was far different from Cook-Guercio’s. She shared Otte’s concerns around staffing and housing conditions. Hudson’s daughter, Brionna, lived in various Hope residential homes from age 9 until the day she turned 22 last year.

“Us together don’t have enough fingers and toes to keep count of all the DCFS cases and allegations,” Hudson told an IT reporter, referring to the treatment of her daughter during that time. 

At first, Hope seemed like a godsend, with no residential programs upstate near where she lived in Kankakee County able to provide care for her daughter. Central Illinois Service Access, an advocacy network for people with disabilities, told IT there are only eight providers in the state that offer residential programming for children with disabilities. 

Hope is the sole provider in Sangamon and surrounding counties. Other counties that have childhood residential programming include DuPage, McHenry, Perry, Will and Winnebago, while there are just two such providers in Cook County.

“The things that were up there, there were long waiting lists. I was in a situation where I had to go back to work, and I couldn’t go back to work because I didn’t have anybody to take care of her… initially it was the only option,” Hudson said. “Who wants to move their 9-year-old into a group home, right? But when you don’t have a choice, you just don’t have a choice.”

It was an immensely difficult decision that hundreds of other parents of children at Hope also had to make. But Hudson said she was impressed with the home Brionna originally lived in, which was located on Hope’s main campus at 15 Hazel Dell Lane.

“It was a brand-new house that was just built, beautiful. You’d want to live there, it was so beautiful,” she said.

Eventually, Hudson grew tired of driving hours across the state to check on her daughter, so six years ago she moved to central Illinois.

“I moved down here to be closer,” she said. “I felt like I couldn’t supervise the things that were going on. There were always incidents happening and so we packed up and moved down here.”

Hudson said the quality of care that Brionna received depended almost entirely on which residential house she was placed at. At first, she said, it was alright.

“It wasn’t too bad; I became good friends with a lot of the girls that worked in the house and formed a good relationship with them. I feel like for the most part, they cared for her fairly well,” she said. “Not like I would care for her, but considering the situation.”

When the second house Brionna lived at closed and she was subsequently moved, “things began to get worse. The house was constantly filthy and unkept, she would have dirt caked on the bottom of her feet that you could scrape off with a butter knife. It was so bad – stains in her underwear, not being bathed.”

She said sometimes when she made calls to her daughter, she would hear staffers swearing and yelling at other children in the background. Her mother said Brionna had multiple injuries during her time at Hope, including burns on her fingers from touching a hot stove while unsupervised and cuts after she reached for loose razors. She was hospitalized once for a separate incident where she needed stitches on her head after staffers informed her that Brionna fell onto a chair, Hudson said.

“There’s worse places than Hope,” Hudson said. “Just because there’s worse places to go doesn’t mean you shouldn’t raise your standards and be better… They get a lot of money from the state to take care of these children and they don’t.”

Hope’s leadership and finances

Hope receives millions in state grants each year and reported almost 550 employees in its most recent tax filing.

The structure of Hope, at least for tax purposes, is spread among four nonprofits that file separately with the IRS. According to the most recent tax filings, the four arms of Hope reported nearly $60 million in assets, though it’s unclear if any assets are shared. Hope School Foundation, the nonprofit’s fundraising arm, reported almost $15 million in liquid assets.

Kathy Carmody is the CEO of The Institute on Public Policy for People with Disabilities and leader of the first Illinois project to conduct community-based support services in 1988. She told IT that building up a cash reserve has become the focus of most nonprofits.

“The turbulence of the [impending cuts to] Medicaid funding and the turbulence generated through COVID – there’s a lot of instability. This is just industry-wide, it’s not even specific to Illinois, and I think organizations are realizing the importance of managing their businesses,” she said. “Now, that’s going to require some assets that they have in liquidity.”

Carmody, who advises multiple social service organizations that support individuals with developmental disabilities through The Institute on Public Policy, said she has not worked with Hope but said its reputation is positive among social service circles.

“What I will say in defense of any agency that has a strong asset base is that they’re a strong organization,” she said. “The general perception is we want agencies to have bake sales to pay their staff and you can’t run a business on a bake sale; we are past those days.”

Hope’s website notes that the organization created its first 10-year strategic plan in 2015 and grew from serving fewer than 1,000 individuals in 2014 to more than 5,000 by 2021. In addition to its residential facilities, Hope operates a vocational academy which provides job training and in-house employment programs. Some participants in Springfield work with a job coach to find placement in community-based employment.

Brionna aged out of Hope’s residential program last year and now attends a day program run by Hope for adults with disabilities, which Hudson praised.

“They have an adult day program that just opened in May – completely night and day from the residential program. Things are going well,” she said. “She’s got a one-on-one (worker) there. They do different activities and provide services, stuff like that, and then she goes home, so I don’t have any complaints from the day program.”

Hudson said the day program doesn’t excuse the residential home settings she witnessed and that Hope’s leadership ought to be overhauled if they’re knowingly allowing filthy living conditions.

“They need new management, they need new administration, they need people in there that actually care about their jobs and not line their pockets with whatever they’re getting because it’s not fair to those kids,” she said.

Paul, the current CEO, made almost $400,000 in 2024, according to the nonprofit’s tax filings. He assumed the position after the prior CEO, Karen Foley, was placed on administrative leave in 2014 following an abuse incident that prompted Hope to adopt new trainings for its employees.

Illinois Times reached out to Hope multiple times over several weeks before receiving a response from a public relations firm. IT requested information regarding current enrollment and staffing for the residential program, protocols for intervening when children are engaged in self-injurious behavior, protocols for responding to DCFS investigations and clarification on fundraising, among other things. None were directly addressed by Hope’s statement:

“For nearly seven decades, Hope has proudly served individuals with developmental disabilities and behavioral disorders, providing compassionate, person-centered care that consistently exceeds all regulatory standards,” the statement reads. “We take any concerns about our residential programs very seriously and act swiftly to ensure a thorough and transparent resolution. Hope’s programs continually surpass rigorous standards in staff training, environment of care, crisis intervention and quality assurance.

“Hope remains open to dialogue with the media, families and the broader community. We welcome opportunities to share our ongoing quality improvements, success stories and the dedication of our staff. Our doors are always open to constructive engagement grounded in fairness and shared concern for those we serve.”

Otte spoke with Hope Learning Academy staff soon after his son’s hospitalization in August. He said the nonprofit’s representatives outlined a plan for one-on-one care at all times Otte had believed was already in place.

Hope petitioned the Illinois Department of Human Service’s Division of Developmental Disabilities to allow the Springfield nonprofit to release Noah from its residential placement in September and then again in October, according to letters provided to IT.

“Noah exhibits extreme self-injurious behaviors of such intensity and frequency that Hope cannot ensure his safety,” the Oct. 29 letter reads. “Additionally, the relationship between our clinical team and Noah’s guardian has become untenable. Hope has received multiple letters from Mr. Otte’s attorneys threatening legal action and issuing litigation holds. More recently, Mr. Otte has contacted local media alleging mistreatment, despite our transparent communication that Hope cannot meet Noah’s acute medical and behavioral needs.”

Otte said he’s unsure of where his son will end up, but worries that he will be transferred to a facility out of state.

“He has to go somewhere,” Otte said.

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This article appears in December 18-24, 2025.