Autistic boy didn’t have to die, say jilted Kansas foster parents who had to bury him

BY: SHERMAN SMITH

TOPEKA — Tina Miller screamed into her phone when she learned Aaron Carter was dead.

For three years, Tina and her husband, Jamie, served as foster parents for the 6-year-old boy at their Comanche County ranch. They warned state officials and employees at Saint Francis Ministries that the Wichita couple who wanted to adopt Aaron was not prepared to handle a nonverbal autistic child who was prone to severe and sometimes self-harming outbursts.

No one listened to their concerns, so the Millers said goodbye to Aaron in December. Two months later, they received a call from the adoption specialist at the Kansas Department for Children and Families who had recommended moving the child.

Aaron had died. She wanted to know if the Millers would take his body.

The child’s death, which is still under investigation by Wichita police, brought into focus the years of frustration the Millers tolerated as they fought to find help for Aaron in a system that routinely fails to connect foster children who are diagnosed with autism with the services they need.

“I hope you can sleep at night. You all killed him,” Tina told the adoption specialist. “I was just screaming: ‘Yes, bring him home. He needs to come home. He never should have left.’ ”

Confidential documents and interviews with parents, contractors, autism specialists, and a court-appointed special advocate reveal a multitude of problems — amplified by bureaucracy and an indifferent Legislature — surrounding the lack of support for children like Aaron.

Families left in the dark by social workers who know little about autism must navigate the complexities of three state agencies that provide oversight of the foster care system, disability services, and Medicaid health insurance. Foster care contractors like Saint Francis may object to basic expenses, let alone the intensive, specialized therapy these children require.

Even well-informed parents struggle to find service providers because so few operate in Kansas, a result of limited funding for training and reimbursement rates for mental health specialists that resemble fast food wages.

“The system of care for children in foster care, with (intellectual or developmental disabilities), and mental or behavioral health issues, is extremely complicated, even for experts in the field,” said Rachel Marsh, CEO of the Children’s Alliance of Kansas. “It can be difficult for policymakers to grapple with the complexity of the issues, which is necessary for the state to fully fund such critical services.”

Nobody tracks the number of autistic children within the foster care system in Kansas, but the lack of support is reflected in a Medicaid program that covers specialized services for autistic children younger than 8. In Kansas, 60 children receive services through the program, while another 400 are on the waiting list.

When Aaron left the Comanche County ranch to live in a Wichita trailer park with parents who had no experience with autism, he lost access to the one person who could best help him adapt to abrupt and dramatic changes in his life. DCF confirmed the boy didn’t receive therapy between Dec. 18, the last time the Millers saw him alive, and Feb. 16, when his new parents called 911 to report the boy had stopped breathing.

There is no evidence of abuse or neglect by Carl and Tyler Zachare, the Wichita couple who took custody of Aaron.

The Millers arranged for Aaron’s burial, and were sickened to learn the boy’s head, arms, torso and legs were covered in bruises. He was supposed to wear a protective helmet.

In a Feb. 27 email, Wichita police Det. Robert Chisolm informed the Millers he was investigating Aaron’s death. The coroner’s autopsy report would not be complete for four to six months, the detective said.

“Aaron’s death is very troubling as it again shows that there are serious issues with the handling of children in DCF custody,” Chisolm wrote.

The Millers estimate they have welcomed 30 to 50 foster children to their ranch near Wilmore, population 48, since 2013. The couple have adopted three of the kids.

As Tina puts it, they live in the middle of nowhere. If someone drops a baby off, which could happen late at night, she drives an hour to the nearest town where she can get formula.

Aaron, who arrived in April 2017 with a preliminary diagnosis for autism, was different from the others.

“When we first got him, you literally could not take your eyes off him for 30 seconds,” Jamie said. “If you went outside, you had to have him right beside you, cause he’d just disappear.”

Aaron required so much work, the couple had to decline other foster children. Numerous emails demonstrate their struggles with Saint Francis to provide care for him. It took a month to gain access to the child’s medical records, and longer to convince the contractor of the need to seek special services.

In a May 22, 2017, email to a case manager, Tina said they were doing their best to figure out what the 3-year-old would eat, and struggling to communicate with him.

“Aaron has begun to have temper tantrums where he bangs his head really hard against things, hits himself in the head and face with his fists,” she wrote.

The Millers fought to get a formal assessment for Aaron, a process that included testing for abnormalities with the boy’s brain. Their requests to be reimbursed for mileage to appointments were exhausting and unsuccessful. The couple received financial assistance for caring for Aaron but sometimes paid out of pocket for medical services.

A year after they began caring for Aaron, the Millers were able to connect him with an ABA — applied behavioral analysis — therapist. This highly skilled professional helped provide insight into the child’s outbursts and began the crucial work of developing his communication skills.

For Aaron, who couldn’t speak, the therapist recommended an iPad and application that would help him learn to communicate through pictures. The Millers made the first of many pleas to Saint Francis for the iPad in August 2018. By January 2020, an administrator at Saint Francis was still explaining that the organization “does not have the funding to pay for the iPad and application.” Saint Francis eventually provided the iPad in June 2020, then spent a few more weeks wrangling over payment for the application.

As the Millers worked to understand and meet Aaron’s needs, they received no respite. Nobody was available to look after a high-needs child for a few hours or a couple of days.

Then they learned a Wichita couple was interested in adopting Aaron, a welcome prospect. But an initial visit over Labor Day weekend to the Zachares home didn’t go well.

“There were so many red flags that this was not going to work,” Tina said.

If you know one child with autism, you know one child with autism.

That’s what parents of kids with autism will tell you, said Susan Hyman, a developmental behavioral pediatrician and professor in the department of pediatrics at the University of Rochester Medical Center in New York.

An autism diagnosis is based on clinical characteristics that fall into two areas — social communication, and restricted physical behavior. About 40% of people with autism are diagnosed with intellectual disabilities, while 60% fall into a wide range of cognitive abilities. The spectrum is broad enough to include people who have limited cognitive ability and can’t speak, as well as people who have high IQs.

Communication, Hyman said, is more than speech: Raised eyebrows. Finger pointing. Giving someone the peace sign.

When you don’t have a way to signal that you want something or want to be left alone, you use behavior to communicate.

Hyman pictures a scenario where you are blindfolded and can’t speak. You are in an emergency room where someone is trying to put an IV into your arm. You want to tell someone it hurts, and you try to signal for them to stop.

“If they didn’t understand you, you’d thrash out, you’d be aggressive,” Hyman said. “And if aggression didn’t stop them from doing it, you might hurt yourself — because lots of people can ignore aggression, but they can’t ignore self injury.”

That’s why some children who are diagnosed with autism will rely on behavioral outbursts, and why it is important to provide ABA services for them at a young age.

“For many individuals, once they get that association that, ‘Oh, there’s something that I can do that will make mom give me a cookie,’ then you have an explosion of communication,” Hyman said. “It’s getting over that hump of understanding that there’s something you can do to change the behavior of other people.”

In Kansas, it is difficult for families to find the specialists who can help a child make that advancement.

Sean Swindler, director of community program development at the Kansas Center for Autism Research and Training at the University of Kansas, said it is almost impossible to find a behavioral interventionist if you live west of Topeka. And even if you live in northeast Kansas and can find the trained professional you need, it is almost impossible to get a Medicaid managed care organization to pay for that service.

“Every family of every economic background with every type of health insurance struggles to find adequate supports because we have not invested in an adequate network in Kansas,” Swindler said.

The autism center at KU, where ABA therapy originated as an applied science in the 1960s, is nationally recognized for its training program.

“We export huge numbers of behavior analysts to go everywhere but here, because they can’t work here and get paid in Kansas,” Swindler said. “We have people right here in Kansas that are highly qualified, go all over the country providing training and expertise, but they can’t do it in Kansas because the state won’t contract with them.”

In lieu of paying for specialists, the state-run Medicaid program pays for personal care attendants who earn $9.50 to $11.50 per hour, said Nick Wood, associate director of InterHab.

The Legislature provides funding for 60 autistic kids to receive special services through Medicaid, while another 400 wait in line.

Service providers, Wood said, “sort of triage and try to take kids based on level of need.”

“There needs to be more money in the system, but go down to the Legislature, try talking about it, you’ll get this glazed look in their eyes because they really don’t want to hear about it.”

— Jane Rhys, a court-appointed special advocate in Topeka

Matt Arnet, director of outpatient services for KVC Kansas, a foster care contractor, said the organization has not had one child who actually received services through the Medicaid program since it started in 2012. There is no benefit to adding children to the waiting list, he said, “because there’s no one for them to go see.”

Wood said children with autism should have services wrapped around them when they are placed into foster care. Every child should have a plan to prevent crisis. Foster parents should know who their service providers are, what services they are getting, who to call in a crisis, and where to find respite.

“If you don’t start with the services right when they need it,” Wood said, “then the child moves to another placement, and then they’re slow to get services going in that place — because we’ve got these gaps or barriers in our system that they’re trying to overcome.

“But in that time, people get overwhelmed and then sometimes, bad things happen.”

Jane Rhys, a court-appointed special advocate in Topeka, is currently supporting a 14-year-old foster child who is autistic and has multiple disabilities. Based on her experience, few people in the system understand autism and lawmakers aren’t interested in paying for the necessary training or care.

“There needs to be more money in the system,” Rhys said, “but go down to the Legislature, try talking about it, you’ll get this glazed look in their eyes because they really don’t want to hear about it. So that’s a lot of the problem.”

Stephanie West-Potter and her wife were so eager to start a family, they agreed to welcome a pair of autistic brothers into their Lawrence home.

The first-time foster parents had little understanding of the intensive care the 4- and 5-year-old boys would need.

“We just fell in love with the boys so quickly, even though it was the most challenging thing that I could ever imagine,” West-Potter said. “I look back to that time and I think, ‘How did I do that?’ I didn’t sleep much.”

The KVC case manager who dropped off the boys two years ago was gone in 5 minutes, West-Potter said. She had to text the case manager an hour later to figure out who was who, because the boys couldn’t speak or understand what she was saying.

West-Potter said she was told the boys had no behavioral problems, but that turned out to be untrue. The mothers were covered in bruises and scratches for the first year. Everything in the house was broken — there is no glass left, West-Potter jokes. But they decided to stick it out.

They received no information about working with autistic children or any indication the boys were eligible for special services. Fortunately, West-Potter had experience working with a disability rights organization and was willing to embrace the daunting task of finding support for the boys.

Martha Hodgesmith, a co-counsel for Kansas Appleseed’s foster care litigation team, said there are roadblocks even in the best of circumstances. Parents struggle to access medical records, don’t know the services that are available, can’t find service providers, and face nightmare negotiations over the cost of services.

“That’s chaotic,” Hodgesmith said. “I’m sure DCF would say, ‘We have a structure in place for this. We have the services. The contractors have responsibilities to make sure the package is in place and available.’

“Everything we know from the ground up, that’s just not happening.”

DCF requires a mental health assessment within 30 days after a child is taken into state custody. This should be followed by a referral for services. Case management providers, like KVC and Saint Francis, are required to assess mental, physical, and environmental health needs and identify services to meet those needs.

Chad Anderson, chief clinical officer for KVC Health Systems, said the organization has added staff to help with the diagnosis and treatment of autism, even though that isn’t required in the state contract.

“We know that will enable us to get them back home to their parents quicker, more timely, and more effectively,” Anderson said.

Part of the challenge is a lack of parity between physical and mental health. Health insurance will recognize the need to treat a physical disability, even if it means someone has to come to your home to provide support, Anderson said. The need for a mental health or behavioral therapist is treated differently.

“Oftentimes we point to the people who are in the trenches doing the work and the failures,” Anderson said. “But in essence, you know, it really has to do with a larger system that is placing these youths in an arena that is not able to have the interventions that they should.”

In the case of the Lawrence couple, their independent efforts led to a positive outcome.

“Our kids are a prime example of what happens when they do receive treatment,” West-Potter said. “And especially at this early age.”

West-Potter gushes about the boys’ progress. One is brilliant, she says, and knows the most obscure dinosaurs and sea creatures.

“He will tell you if it’s a North Pacific Right Whale,” she said. “He’s very specific. And he will call you out if you say the wrong animal.”

The other boy writes his own jokes:

Why did the polar bear eat a popsicle?

Because he was hungry.

The Millers believe Aaron’s death could have been avoided.

When Aaron returned from his Labor Day weekend visit with the Zachares, it was immediately clear the prospective parents had not followed directives about the need for boundaries.

Let’s say bedtime is 8 p.m., Jamie Miller explained. If one night, there are guests over, and you say, “This is a special occasion, so you can stay up to 9 p.m.,” many children would understand.

“With Aaron, if you make one exception, it was a battle from then on,” Jamie said. “It just never stopped. So you had to be consistent.”

The prospective parents allowed Aaron to dig through the refrigerator and — alarmingly — let him remove his protective helmet. When he returned to the ranch, he no longer wanted to wear the helmet and would throw it at people. They couldn’t keep him out of the refrigerator.

After exchanging a flurry of text messages with the Zachares, the Millers concluded they could not trust the Zachares to keep Aaron safe. They asked Saint Francis to end the visits.

That prompted the Zachares to file a complaint with DCF about neglect and abuse by the Millers. Rather than mediate the dispute, DCF appeared to fast-track the adoption process.

Adoption assessment documents obtained by Kansas Reflector show the state agency believed the Zachares would be good parents. They were married in Las Vegas in 2016, had looked after children of immediate family members, and described themselves as “old souls” who were capable of setting boundaries for a special needs child. They owned a turtle, a non-constricting snake and three Shiz Tzu dogs.

Tyler had worked for Saint Francis as a family support worker from 2017-2019, and had experience working with special education children.

“They want to give Aaron a life of normalcy and give him the opportunity to find out who he is,” DCCCA employee Abram Hoyer wrote in the assessment for DCF. “They want to give him the space to create and to use his strengths.”

A criminal background check revealed Carl had received a diversion for possession of illegal drugs in 2011, and the diversion was revoked a year later when he failed a urine test. Carl told the assessor he no longer depended on speed and meth to cope with depression.

Based on reports from the social welfare professionals involved in the case, a judge determined in December that Aaron should live with the Zachares.

Aaron’s behavior grew worse than ever as the Millers prepared for a change of custody. Tina called a crisis line, and she recalled the therapist’s advice.

“You know why he’s having behaviors?” the therapist said. “It’s the only thing he can express. He doesn’t want to be there. He doesn’t like it. You can’t expect to throw him in there. So he is going to have massive behaviors.”

The case manager from Saint Francis told the Millers she would monitor Aaron at his new home.

“Obviously,” Tina said, “that didn’t happen.”

The Zachares aren’t talking about what happened to Aaron. According to the DCF summary of the boy’s death, obtained by Kansas Reflector through an open records request, the parents found the child not breathing and called 911. Medical personnel and law enforcement officers responded, and the child was pronounced dead at their mobile home in Wichita.

Mike Deines, spokesman for DCF, said the case team “felt it was best for the family who had cared for him for so long (to) have the opportunity to bury him and be a part of his funeral.”

The Millers agreed to handle funeral arrangements and were able to view Aaron’s body before the service.

Said Tina: “He had bruises all over his head, and they had to use a lot of makeup on him. And Jamie said, ‘Can I ask you what the rest of him looks like?’ (The funeral director) got tears in his eyes and was like, ‘It’s bad. It’s really bad.’ He said his arms are covered, his torso’s covered, his knees.”

The Zachares published an obituary for Aaron in the Wichita Eagle and held a memorial service at a coffee shop.

“He was a beautiful soul that was full of light and love and you just couldn’t be around him without feeling his passion for life,” the obit read. “Aaron touched a large amount of people in a short amount of time by teaching us all to slow down and enjoy even the small things with a deep heart.”

The Zachares didn’t respond to inquiries for this story.

“He was a toy for them,” Jamie said. “You could watch on Facebook and stuff, and he was nothing more than a toy. They didn’t want to be embarrassed by him wearing a helmet, looking different than other kids. It was just a heartbreaking situation.”

Tina and Jamie expect retaliation for talking about what happened to Aaron.

They’ve already lost their license as foster parents.

The first warning came from Rep. Kyle Hoffman, a Republican from Coldwater, who advised his constituents to “be ready,” because they were going to make some people mad.

After Kansas Reflector began asking questions for this story, Tina received a call from Mercedes Fanshier, the Saint Francis case manager who was responsible for Aaron when he was with the Millers.

Fanshier’s concern: Was she talking to a reporter?

Morgan Rothenberger, a spokeswoman for Saint Francis, said the agency is required to complete a critical incident report for DCF in any situation that could attract attention.

“There may be times when we would ask individuals we work with whether their case or situation had drawn media attention,” Rothenberger said.

The Millers, refusing to be silenced, want to talk to anybody who will listen. They are working to form a nonprofit organization called Aaron’s Voice to help raise awareness about problems within the foster care system.

“You just get to feeling like there’s nobody who cares, especially if you don’t have a good foster worker,” Jamie said. “And foster workers are so limited in what they can do. And it’s pathetic, because you get people with power and they just get rid of you. We’ve seen them purposely make the wrong decision just to spite the people who were trying to do the right thing. The people who lose are the little children that we’re supposed to be protecting.”

One week after Aaron’s death, DCF concluded its investigation into the complaint the Zachares had filed against the Millers last year. Jarod Wolsey, deputy director of foster care licensing for DCF, informed the Millers they were being cited for an incident from 2017.

Shortly after Aaron’s arrival at the ranch, the Millers tethered the child to a tree during a visit to the lake because he wouldn’t stop trying to run into the water. Even though they received verbal approval from Saint Francis to tether the child in that circumstance, the action was unacceptable to DCF. Autism specialists, state officials and Saint Francis confirmed to Kansas Reflector that this is not a recommended technique.

The Millers recently learned their license to be foster parents was being revoked by TFI Family Services, another state contractor, as a result of the DCF citation. The Millers believe the action is punishment for talking about Aaron’s death.

“You all sent him to THAT home to be sent back to us in a box,” Tina wrote in her reply to Wolsey.

“We LOVED him and we did EVERYTHING for him!” she wrote. “We fought for him when NO ONE, including your office, would not. He was loved, he was valued and he was worthy!!!! He will NOT be forgotten.”