The Frontier is part of the Mental Health Parity Collaborative, a group of newsrooms that are covering stories on mental health care access and inequities in the U.S. The partners on this project include The Carter Center, The Center for Public Integrity, and newsrooms in select states across the country.
Amber Boyer spent early mornings last spring crawling out of her bedroom window and into her garage to make breakfast and gather medications for her then 14-year-old son Davin.
She’d strap on a rugby-style helmet to protect her head and hair when she went back inside her Kay County home to give Davin his meals. Davin has autism and a speech delay. For the last year, he’s had increasingly aggressive behaviors, Boyer said.
Davin started complaining about headaches in 2022. He’d need to be sedated for any medical testing to figure out why the headaches were happening. But few doctors in the state do sedation before a procedure like an MRI, Boyer said. Finding care was nearly impossible.
Davin’s behaviors grew increasingly aggressive as his headaches continued. He was biting, pulling hair and breaking doors. By early 2023, Davin was suspended for several days from his public school. He eventually refused to attend school in person. Boyer took off almost four weeks from work to stay home with him as she looked for treatment. When Davin became a serious risk to himself or others, she took him to the emergency room. He visited hospital emergency rooms seven times in six months.
As Davin’s behaviors escalated, Boyer moved her teenage daughter to her parents’ home, and she moved into the garage, eventually taking medical leave from work. She spent her days making calls to mental health providers, doctors, her attorney, the local school district and the Oklahoma Autism Network, trying to find someone who could help.
Boyer could only stay inside her house at night while they both slept — her behind a steel-plated door. From the garage, she watched Davin through cameras inside the house to make sure he was safe.
Davin has been on Oklahoma’s waiting list for developmental disability services for around a decade. Boyer has relied on private insurance and Oklahoma’s Medicaid program to help pay for his care in the meantime.
Struggling to find care is common for parents with children who have dual needs, or an intellectual or developmental disability and a mental or behavioral health challenge.
Demand for mental and behavioral health care has spiked in recent years amid a staffing shortage, leaving some kids with complex needs behind as providers pick and choose which clients they can take on. The state has ramped up some spending on mental health care and developmental disability services but the investments haven’t been enough to allow providers to expand or feel ready to accept more youth with dual needs, officials say.
Without better access to care, advocates say children with dual needs are more likely to end up involved with the child welfare or criminal justice system, or be sent to costly out-of-state facilities away from their families. In the 2023 fiscal year, Oklahoma spent over $5 million to send 49 kids out of state for treatment, according to data from the Oklahoma Health Care Authority. Five years ago, the state only paid for two kids to leave for treatment. Some children are likely left out of those numbers.
“It’s kind of this perfect storm, with those with a dual diagnosis in the middle of it,” said Wanda Felty, an advocate who has worked for years to get individuals with disabilities connected to state services.
Parents turn to schools that lack resources
Oklahoma has had limited mental and behavioral health services available for youth for decades.
Only nine counties in Oklahoma have any child and adolescent psychiatrists, according to 2022 maps from the American Academy of Child and Adolescent Psychiatry. When a child has a complex need in addition to mental or behavioral health challenges, the pool of outpatient and inpatient providers shrinks even more.
To fill these gaps, communities rely on public schools to provide significant on-site services to kids. But special education programs are often short-staffed and under-funded. This means less of the consistent, community-based care that can play a role in keeping children from needing inpatient services or residential treatment for issues later on.
Davin’s public school was able to provide him some speech therapy throughout the years but struggled to hire the right professionals in the rural area, Boyer said.
The school district struggled to keep up as Davin’s care needs escalated, she said. One special education teacher threatened to file assault charges against him.
By May 2023, Davin hadn’t been to school in about two months. Two special education teachers from the school — who Davin hadn’t met before — tried to come to Boyer’s home to provide lessons. Occasionally these classes went well, but most of the time, Boyer said, Davin was too aggressive.
Sara Coffey, a child psychiatry consultant to the state’s child welfare department and director of child and adolescent psychiatry for Oklahoma State University, frequently sees families with children who didn’t receive adequate day-to-day services like speech therapy and have started to have other mental or behavioral health issues.
“That’s whenever they come to see me — when it gets to a point where the child, quite frankly, is older and might be larger, and there’s increased safety concerns,” Coffey said. “But it’s often something that’s been going on for years that we didn’t have the appropriate interventions and supports in place for.”
Kids with dual needs often need more than just crisis care
Getting services early can be critical to improving a child’s stability and future independence, according to the American Psychiatric Association. Problems can become more serious when families can’t find adequate levels of care in schools or the community.
Parents may take kids who are in crisis to emergency rooms, where they may be funneled to a short-stay, inpatient treatment provider if a bed is available. Longer-term, residential treatment for kids with complex needs is almost nonexistent in the state, officials said.
When Davin was home full-time, Boyer reached out to Oklahoma Human Services’ developmental disability services office but never heard back, she said. She called an autism research and advocacy organization.
The organization wanted to help, Boyer said, but the resources her son needed either didn’t exist or weren’t accessible.
“They actually told me, once I figured something out, to call back and report to them what I was able to get accomplished so that they could help other parents,” Boyer said.
Last June, Boyer took Davin to another emergency room in Oklahoma City to get help. Even though Davin was admitted for several days and a doctor adjusted the psychiatric medications meant to manage his behaviors, Davin was discharged without any new diagnosis or medical testing, Boyer said. The hospital said to follow up with a psychiatrist and wrote a letter saying Davin needed long-term placement.
Many crisis interventions are short-term, said RoseAnn Duplan, a policy specialist with the Oklahoma Disability Law Center. Kids are kept until they are stabilized and then they are sent home. There are few supports for families, Duplan said, so children can deteriorate quickly.
“I think in all of these cases, had there been appropriate community-based mental health treatment for these kids to begin with, there’s a really good chance we would never have got to the level of needing inpatient care,” Duplan said.
A lack of providers equipped for complex needs
People with intellectual or developmental disabilities have co-occurring psychiatric conditions at rates that can exceed the general population, including ADHD, depression and anxiety, according to the National Association for the Dually Diagnosed.
But the state’s system has been set up to treat psychiatric needs separately from developmental disabilities, said Traylor Rains, the state’s Medicaid director. It takes highly trained clinicians to figure out where behaviors are coming from when those conditions are intertwined, he said.
There aren’t enough of these specialists in the state to treat kids with co-occurring developmental disabilities and mental or behavioral health needs, providers said.
Providers have to seek outside resources to access specific training on working with children with developmental disabilities, which can be expensive and time consuming, said Whitney Downie, chief program officer for Family and Children’s Services in Tulsa.
Health care facilities have to consider physical space for new clients and whether a new client will mix well with other patients, providers told The Frontier. Providers also must often adhere to strict staff-to-patient ratios.
But a staffing shortage has plagued mental health providers in the state for years.
If providers feel like their staff aren’t trained to handle a client’s behavior, especially if those behaviors are deemed aggressive, and still provide effective treatment, they’ll decline the patient, said Matthew Spencer, a chief clinical officer with Grand Mental Health in northeast Oklahoma.
Grand Mental Health provides outpatient therapy and can serve kids with developmental disabilities, but only if patients have the cognitive ability to participate in therapy and benefit from it, Spencer said. If not, Grand Mental Health will refer them to a different provider, he said.
Oklahoma has a mix of providers that do inpatient and outpatient services, but they don’t always accept kids with dual needs. Integris and SSM Health hospital systems in Oklahoma City have specialized psychiatric units for youth with developmental disabilities. The state has its own hospital in Norman that can accept kids with dual needs if they have capacity to benefit from treatment. The state also contracts with a few other providers that have longer-term programs, though not all accept kids with developmental disabilities. Another facility in Tulsa serves these youth in a residential setting, but only if they are in state custody.
Leaders from multiple state agencies say they have asked providers across the country to come to Oklahoma or for existing providers to expand their services, but most decline, citing concerns with staffing, training and funding.
Kids with dual needs can be more expensive to care for because of increased staffing and additional therapies. Low reimbursement rates from the state’s Medicaid program make it difficult for Oklahoma providers to expand services, especially longer-term, residential-style services.
“Everybody knows that it’s an underserved population, and I think everybody wants to do all they can or more than they’re doing now,” said Eric Sachau, director of administrative services for Parkside Psychiatric Hospital in Tulsa. “The things that will open the doors to that are going to be a long list of things, and reimbursement is one of them.”
In 2022, lawmakers approved $2 million in incentives to persuade providers to accept more high-needs kids, including those with developmental disabilities. Providers would get a minimum $20,000 for accepting children with complex needs and another $10,000 if a child showed progress.
But by October of last year, only about 10% of funds had been used by five providers for eight kids, according to the Oklahoma Department of Mental Health and Substance Abuse Services. One of the providers doesn’t accept kids with developmental disabilities and another has since closed down.
Boyer found an out-of-state facility that could accept Davin in August with the help of a therapist from Grand Mental Health. It’s a psychiatric residential treatment facility with onsite nurses, behavioral therapy technicians and a daily special education program with multiple teachers. His old school district is paying about $40,000 a month for the facility, Boyer said.
The staff are highly trained and Davin’s behaviors have decreased significantly, Boyer said.
He’s answering questions in school and doing homework, things Boyer said she’d never seen him do before. Someone from the state’s developmental disability services office got in touch with Boyer and is keeping an eye on Davin’s case to make sure there are services for him when he comes home.
Coming Home
To address the state’s mental health needs, the Oklahoma Legislature has invested hundreds of millions of dollars in the last few years in state funds and federal pandemic relief dollars to expand and build new mental health facilities for adults and children, increase payment rates to developmental disability providers and build the education pipeline for health care workers.
One of the new facilities is a behavioral health hospital for youth, which should open in Oklahoma City under the OU Health umbrella in late 2026. The $140-million facility will have 72 beds for short- and long-term inpatient stays, an outpatient program and a partial hospitalization program, said Randy Dowell, chief executive officer of the University Hospitals Authority and Trust.
The facility will be connected to the Oklahoma Children’s Hospital, so patients will have access to medical doctors. Oklahoma Human Services also has a foster care program available, and the facility will have a connection with the Child Study Center, a program on the campus that serves kids with developmental disabilities and trains health care providers, Dowell said.
The success of the program will depend on staffing and whether Oklahoma kids with high needs are accepted over out-of-state patients for higher reimbursement rates.
“I think it’s a great start,” Dowell said. “I don’t know that it solves all the needs for the state of Oklahoma, but it definitely goes a long way in allowing us to have kids treated in the state.”
Boyer is back at work but living with her parents and daughter while she repairs her home using a loan and help from her church to cover costs. She’s working on writing a resource book to help other parents before they get to the point she did.
Boyer and her daughter visit Davin every week. His treatment care team has started talking about integrating Davin back home. He’ll be able to start home visits soon.
“It’s just been really difficult. He’s pulled my hair. He’s cracked my ribs and bit me. I was afraid to get close. Now I don't feel like that at all,” Boyer said. “He’s excited to see us and we’re so excited to see him. And we have a great visit every weekend.”
This article first appeared on The Frontier and is republished here under a Creative Commons license.
