WICHITA, Kansas — AJ Iverson used to chase his family’s dogs in the backyard — in his underpants. He would go on for hours, often waving around a stick in his hand.
“He’d come inside and say, ‘Don't tell anyone I do that,’” said AJ’s sister, Ashley Crego.
AJ was 17 years old when he did that. He had ADHD, autism, epilepsy and disruptive mood dysregulation disorder. While he looked like a teen, his family said he had the mind and impulse control of a 3- or 4-year-old.
At his core, Crego said, AJ was a good kid. But she and AJ’s mother, Sherry Lesher, needed help taking care of him. Sometimes he would have chaotic episodes that could go on for hours.
Those moments often stemmed from frustration. He would cry, yell, hit a wall or himself. Almost every time they ended, he would apologize.
His limited intellectual capabilities and his overwhelming impulsiveness led him to drugs. At 17, he died from an overdose.
“He deserved a lot more than they gave him,” Lesher said. “A lot more.”
Dozens to hundreds of kids with similar issues interact with the foster care system in Kansas. In the last fiscal year, the state removed 57 children from their homes because their special needs were more than their families could manage.
The total extent of the issue is unknown because the Department for Children and Families doesn’t track this information.
In December, numbers from the foster care agencies found about 360 kids with significant intellectual disabilities were in the system, but it isn’t clear if those children entered foster care just because of their needs or other mistreatment.
Those children need advanced, specialized care — care too advanced for foster care to provide. But they find themselves in a system that isn’t designed for them. Instead, it's the destination of last resort that’s ill-equipped for children needing help for their particular, daunting problems.
Kids like AJ Iverson.
He had little impulse control and often wouldn’t think through the consequences of his actions. He never got arrested and never meant anyone any harm, his family says, but he could be a lot to manage.
Lesher applied for the intellectual/developmental disability, or I/DD, waiver when AJ was 4 years old to get additional financial help and more services for him. She waited 13 years and never received any.
He had two therapists, a psychiatrist and a neurologist. AJ spent two months in a psychiatric residential treatment facility and even tried equine therapy at Blue Sky Ranch.
The staff at a mental health center told Lesher AJ’s needs were not severe enough to qualify for services.
She was directed to a community developmental disability organization, but the provider the CDDO recommended only made one visit in three months. A second provider only came out a few times.
Eventually, one provider came out regularly until staff turnover prevented them from sending consistent help. A fourth provider said AJ didn’t qualify for short-term help but worked to create a case plan for the future.
Some medication did help, but no doctors or programs helped AJ in every way he needed. With his impulses still unchecked, AJ kept getting into drugs.
“(He) was 1,000% impulse — impulse, compulsion, whatever,” Lesher said. “It was behavior. It wasn’t specifically drugs. I mean, if eating chips would cause you to be ill that would have done it, too. He didn’t know the things that could hurt him.”
Eventually, AJ was placed in family preservation services, giving him a foster care caseworker. AJ never ended up with a foster family. He stayed at home and official case files said he and his mother had a parent-child conflict.
AJ got a caseworker from St. Francis Ministries, one of the major foster care agencies in Kansas. That caseworker suggested AJ go into Job Corps, a work-training program. But Lesher thought he wasn’t equipped for job training and worried about him leaving home.
“Even though he was 17 and six foot tall, that kid went to bed with a hug every night,” Lesher said. “He had a support group. He had his support system.”
Lesher and Crego said the entire system failed AJ. They tried for over a decade to get him help but never got it. Eventually, he failed another drug test — his mom had insisted on them — in 2017.
AJ died of an overdose later that night. Before his death, AJ even apologized to his mother.
“He said, ‘Mommy I see you.’ He said, ‘I see you on the phone crying and trying to get help for me,’” she said. “He’s like, ‘I'm really sorry.’”
‘We don't serve those kids better through foster care'
Kansas tries to deliver services to kids in need as soon as possible. The longer it takes to connect a child to help, the worse the problem gets.
Foster care case managers, state waiver programs and community developmental disability organizations, or CDDOs, are supposed to connect families to that treatment. But those organizations are directing kids to services that aren’t available because community supports are underfunded, advocates say.
Instead of connecting a child with a therapist, they connect a child to a waitlist for that therapist.
Emma Bennett said her 10-year-old has waited for beds at treatment centers before.
Her child has severe burns from an incident when he was younger, autism and oppositional defiant disorder, which “basically just means they fight you on everything.”
Bennett wants respite care, but high turnover at those agencies means she is explaining to new staff time and again how to care for her child.
“His behaviors have been continuing to escalate,” she said. “Things that I never thought he would do, he’s starting to do.”
Her child is growing older and can sometimes be violent. She worries about what’ll happen in the future. Bennett’s child has been suspended from school twice this year, and with a job and going back to school, she can’t afford to stay home or hire a babysitter if he misses more time.
She served in the 184th Medical Group at McConnell Air Force base and considers herself knowledgeable about medical care. On top of that, her son is triple covered by insurance and she has gotten him care at “everything you can think of.” Even still, Bennett’s child is not getting the help he needs because she can’t find it.
“I don’t honestly know how long I myself will be able to handle him,” she said.
Years go by. Parents become more burned out and soon need more and more help. That can eventually land kids in foster care or in family preservation services.
Child protective services investigations break down into a few categories. Families in need of assessment and abuse or neglect cases. Maltreatment investigations are more common, happening about 65% of the time and involve more serious allegations — sexual or physical abuse.
Families in need of assessment, or FINA, reports could be truancy or a child running away from home.
Between July and February, 28.9% of FINA-related investigations were assigned because of the child’s behavioral problems, according to state data. In that same time period, 34.7% of children had a report because a caregiver was unavailable or unable to care for the child.
Kansas has no youth crisis centers specializing in I/DD care, a lack of mobile crisis services and a shortage of targeted case managers to coordinate care for families. Finding attendant care — or in-home care to help burned-out families — and direct support workers is hard, due in part to historically low pay. Even if those workers are found, families and foster agencies say they lack the training to care for every child. Specialized therapists also aren't a guarantee.
The I/DD waiver should help families pay for and find help, but the waitlist is 10 years long. And if families try to pay for services without insurance, they could be out thousands of dollars a month.
That all leaves caseworkers in a no-win situation.
Kristalle Hedrick, vice president of Kansas programs for FosterAdopt Connect, said case managers are often expected to act as therapists, parents and caregivers.
When community services aren’t available, people think case managers should help children directly. They aren’t trained for that. That means caseworkers are trying to connect a family to help that isn’t available while they themselves lack the specialized degrees to care for the children.
Kansas does offer beefed-up foster homes with extra community support called therapeutic foster homes. Those homes mean nearly daily check-ins with specialists.
But some say even Kansas’ most hands-on foster homes lack the ability to help.
“We don’t serve those kids better through foster care,” Hedrick said.
Communication between agencies is also lacking, leaving some parents to fend for themselves in a system that is already confusing.
'We hear you. We’re gonna do all we can.'
Social workers, parents and experts in the field said cutting down the 10-year waitlist for I/DD waiver is crucial to helping kids.
State Rep. Will Carpenter, an El Dorado Republican, is the vice chair of a committee that is trying to modernize the state’s waiver system. It’s hoping to create a new waiver, something done through the federal government, that should create an exit ramp for families stuck on the I/DD waitlist.
The proposed community support waiver would offer less help than the I/DD waiver, but Carpenter said not everyone needs the same support and some families can be served by it.
“I wish we could get rid of the waitlist,” he said. “I don’t think we’ll ever get it down to zero. But I think we’ll shorten the time frame.”
It’ll take at least two years before that new waiver could be created. Carpenter didn’t have many solutions on what families should do until then.
“Just get your kid on the waitlist as soon as you can,” he said. “We hear you. We’re gonna do all we can to take care of it.”
Nick Wood, associate director of InterHab — a group that represents almost every CDDO — said proper funding of both the waiver system and behavioral health care would make a massive difference.
It wouldn’t solve the issue completely, he said, but if kids were connected to the proper mental health professionals with additional, state-funded financial support, that could go a long way in helping families.
Kansas ranked last in a report tracking the prevalence of mental health care and access to it.
Foster care agencies are calling for more robust workforce training programs so families can have higher quality in-home care. Some parents say state contracts with insurance companies need to be reworked to require more oversight. Others want Medicaid reimbursement rates changed so providers can make more.
Amanda Pfannenstiel, executive director of clinical services at St. Francis, said the solutions should focus on community support so those agencies can help kids before foster care is ever an option.
“Families, out of desperation, are looking for help and support,” she said. “St. Francis has always tried to step up and partner and be available for those.”
Pfannenstiel said St. Francis isn’t trying to be a specialty provider for I/DD because the grant agreements from the state don’t focus on that aspect. Each foster care agency that spoke with the Kansas News Service said it has staff who can consult on cases with higher needs kids, but they all wanted more community support.
“It’s not practical to think that they can be all things to everyone all the time,” she said.
'This is what you left us with.'
Lesher and Crego, AJ’s family, said they are skeptical the system will change even if all the promised solutions are passed.
On the day of AJ’s death, the caseworker at St. Francis was told the boy had failed his drug test. Crego and Lesher say the caseworker didn’t adequately address his needs, the agency filled out paperwork inaccurately that denied him services and could have done more to help. Crego even found paperwork that said all case plan goals were met because the child died.
St. Francis couldn’t discuss case-specific details. The agency said it worked with community stakeholders to help AJ.
“Our team is committed to supporting all children and families in need,” an emailed statement said. “Our priority remains the safety of children and the healing of families.”
In the months that followed, the family was billed for services after AJ’s death. That included a bill for services during the funeral when nobody from St. Francis attended, Lesher and Crego said.
They complained to the governor, then-attorney general Derek Schmidt and the Behavioral Sciences Regulatory Board, but they said nothing ever happened. An investigation by the BSRB found no wrongdoing in the case.
If Lesher could meet the people who she feels are responsible, she would bring AJ’s urn.
“I’m going to tell them,” she said, “this is what you left us with.”
Blaise Mesa reports on criminal justice and social services for the Kansas News Service in Topeka. You can follow him on Twitter @Blaise_Mesa or email him at blaise@kcur.org.
The Kansas News Service is a collaboration of KCUR, Kansas Public Radio, KMUW and High Plains Public Radio focused on health, the social determinants of health and their connection to public policy.
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