In a first of its kind investigation USAToday investigates how many adoptions are disrupted and why. Usually the focus of these conversations is on lack of access to mental health treatment. Indeed this is “a” problem, but it isn’t the only problem. This conclusion misses the underlying issue of childhood trauma and fails to recognize that even with access, effective treatments do not exist.
USAToday’s comprehensive study has taken a more nuanced view and discovered what many adoptive families already know. The mental health system does not have effective treatments for complex mental health treatments for many of the problems children suffering from early childhood trauma have. This leads to thousands of disrupted adoptions every year. This is a pivotal study and article because it brings to light this hidden crisis in the adoptive community.
Childhood adversity and trauma are national health epidemics, though only recently making headlines. For example, Reactive Attachment Disorder (RAD) has been a largely unknown mental health disorder, but it’s recently become headline news with the migrant border separations.
Over the last couple of years there have been numerous reports of violence perpetrated by youths with untreated mental illnesses, many of whom have spent time in the foster care system.
The struggles of adoptive families, including the challenges of accessing mental health treatment, have been highlighted on the news and in recent documentaries.
Research shows African-Americans are less likely to access treatment for mental illness.
Cultural norms and the stigma associated with having a mental illness are partly to blame, according to Shardé Smith, assistant professor of human development and family studies at the University of Illinois at Urbana-Champaign.
Smith studies the role that race-related stress and trauma has on entire families, and what strategies people use to cope.
She spoke recently with Side Effects Public Media about the barriers to mental health treatment for African-Americans and the relationship between racism, trauma and mental illness.
This interview has been edited for length and clarity.
What are some of the barriers that prevent African-Americans from seeking help for a mental illness?
Mistrust of the therapeutic system stems from events like the Tuskegee experiment and other systemic injustices where African-Americans were treated unfairly. There’s also shame and negative beliefs about mental health care, and the assumption that an individual or community failed in some way, which led to these issues. And for those who are part of a religious community, sometimes mental illness is seen as not having enough faith in God.
What is the role of systemic racism in all this?
Systemic racism is the institutionalization of racism through policies and practices that show up in all of our systems. And it’s through systemic racism that mental health issues arise and are maintained.
For example, living in an impoverished community with less access to proper food and nutrition can be very stressful and can create mental health problems among individual family members. Another example could be the funneling of black youth through the justice system, where they’re more likely to either go to jail or be a part of the system than to receive proper mental health care.
There are also inequalities in our education system that can create gaps in wealth. This can lead to mental health problems, and systemic racism also means there’s a lack of access to proper mental health care, cultural biases from health providers, misdiagnoses such as attributing certain behaviors to delinquency as opposed to survival coping strategies for the trauma people have faced.
What role does trauma play?
Trauma plays a huge role. The disparities that we see cause trauma, and a lot of times that trauma goes unaddressed, and it’s not named as such. So it’s difficult finding treatment for the trauma because we don’t have a name for it.
What are some examples of trauma?
Race-related trauma could include the traumatic experiences, emotionally, psychologically, physically that manifest as the result of experiencing one or multiple events. Sometimes we think of traumas, such as natural disasters, sexual trauma, or car accidents, which are traumatic events. But sometimes we don’t think about race-related trauma as a part of that, and it’s important to include that in our understanding of trauma and how it can effect marginalized communities and African-Americans.
To loosely quote Kimberlé Crenshaw, if there’s no name for a problem, you can’t see a problem. And if you can’t see a problem you can’t solve it. And sometimes we don’t name these traumas as racial traumas that black and African-Americans are experiencing.
The PBS documentary, The Kids We Lose, explores how discipline techniques in schools feed the school-to-prison pipeline. It effectively argues for ending punitive practices in schools, but where are the viable and realistic solutions?
One strength of the film is showing how incredibly serious (and dangerous) these behaviors can be. However, it focuses on ADHD, Dyslexia, and Autism as the underlying causes. It’s important to note that the most significant underlying cause of these school behaviors is complex trauma – with nearly half of Americas children suffering at least one adverse experience hurting kids are in every classroom.
One of the highlights of the film is Dylan, an adult man now reflecting on his behaviors as a school aged child. His problems began in 6th grade when didn’t want to do what he was told to do. “I wanted to do things my way,” he says. When discussing his interactions with law enforcement in high school, Dylan says he was rebelling and acting out because he was unhappy. However, the experts on the film don’t address this type of willful behavior. In fact, they specifically say the kids have the motivation, but not the skills to succeed.
While it’s frowned up on in our society to say – some of our kids do have serious, willful behaviors. These children likely also have emotional issues, are disregulated, and may be hyperactive. They may lack the skills they need to succeed. They may also lack motivation and be willful in their behaviors. To find real solutions that work we have to start looking at children’s needs more holistically and realistically. When we deny a child’s control over their behaviors we steal their agency and cripple their chances of sucess in the future.
Photo Credit: The Kids We Lose, PBS
My thoughts…
Teachers need to teach
The film does a great job of showing just how serious and dangerous kids’ behaviors can be. However, it seems to unfairly put the onus on teachers with a focus on the need for teacher training so they can mitigate and manage the behaviors. In my opinion, behavior management (at this level) is not a teacher responsibility. We need support staff that will allow teachers to teach.
Restrains aren’t therapeutic, but we need an alternative
The film effectively shows how shocking and disturbing physical restraints can be. It goes on to explain that restraints are not therapeutic or educational – and therefore have no place in schools. However, the film doesn’t offer an alternative solution. There are cases where a child is completely out of control and unsafe to themselves and others. If we are do do away with physical restrains we must have a realistic acute solution – while continuing to provide long term treatment.
Teachers and peers matter too
It’s often forgotten that these types of extreme behavioral problems create a toxic environment for teachers and peers who are entitled to a healthy environment. The producer argues, “Instead of kids being taught to behave in school they are removed from school.” While this is a valid point, we must consider the needs of everyone – the struggling child, other students, teachers, and support staff.
It’s complicated
Photo Credit: The Kids We Lose, PBS
When my son Devon was in 5th grade he didn’t want to come inside after recess. All the other students were lined up at the door waiting as teachers called for Devon to come. He finally walked over with a large rock in his hand. He slammed the rock into a window and it shattered. Then Devon walked down the line of his peers punching them. When his teacher rushed over to stop him, he punched her in the stomach.
Here’s what I know:
Devon’s behavior clearly signaled mental health issues that needed treatment.
Physically restraining Devon wasn’t therapeutic or educational, but absolutely necessary.
Devon’s teacher had a right to work in a safe and healthy environment.
Devon’s behavior was traumatic and disruptive to other students.
These are complicated situations and we will not solve them by painting with a broad brush or focusing on only one prong. To find real solutions for behaviorally challenging students we must be willing to honestly define the problem(s), view the child holistically, and balance their needs along with the needs of others.
The Kids We Lose is a thought provoking film worth your time to watch. After you view it please leave me a comment to let me know what you think.
In recent months, the stories of migrant children separated from their parents at the border have tugged at our hearts. The news media is rightly exposing how early childhood trauma – such as separation from a mother – can cause lifelong, negative impact.
The issue of childhood trauma may only recently have become front page news with the crisis at the border, but it’s all too familiar for adoptive and foster families. Reactive attachment disorder (RAD), rare among the general population, is most prevalent among adopted and foster children. Due to early childhood trauma, they are often unable to form meaningful attachments to caregivers and may exhibit extremely challenging behaviors.
Instead of enjoying playful childhoods, these children struggle to cope with everyday life. As a result, some are unable to earn a high school diploma and too often get tangled up in the criminal justice system. Disorders like RAD, that are caused by early childhood trauma, are literally stealing away our children’s future.
In advocating for children we must cast a wide net
Regardless of our politics, we can advocate together on behalf of innocent children. Let’s consider that immigration isn’t the only “system” that’s harmful to children. The foster care, adoption, and criminal justice systems are also dysfunctional with misguided policies that traumatize and retraumatize our children. The impact of this trauma is staggering, life-altering, and devastating.
Here are just a few of the ways it happens:
Some vulnerable kids are overlooked by “the system” and left in abusive and neglectful situations.
Some kids are unable to be placed in a permanent family because “the system” makes repeated, misguided attempts at reunification.
Some kids are unnecessarily removed from their caregivers and processed into “the system.”
Sadly, “the system,” intended to protect our vulnerable children is broken.
These children, with trauma scars indelibly etched on their psyche, need specialized treatment to heal and thrive. Few get it. The mental health community is woefully unprepared to recognize and treat RAD. Where treatments are available, most families cannot afford them. As a result these damaged children grow into unstable and unhappy adults.
We can do better
Let’s join together for all children – migrant children, foster kids, and adopted children – who are so often collateral damage of policies not focused on their best interest and well-being. There is power in our collective outcry. It’s time to leverage our collective outrage and advocate for reform of “the system” and for meaningful treatments and resources to treat trauma-caused disorders like RAD.
Image: A boy and father from Honduras are taken into custody by U.S. Border Patrol agents near the U.S.-Mexico Border on June 12, 2018, near Mission, Texas. via @Huffington Post
Imagine identifying a toxin so potent it could rewire a child’s brain and erode his immune system. A substance that, in high doses, tripled the risk of heart disease and lung cancer and reduced life expectancy by 20 years.
And then realizing that tens of millions of American children had been exposed.
Dr. Nadine Burke Harris, California’s newly appointed surgeon general, will tell you this is not a hypothetical scenario. She is a leading voice in a movement trying to transform our understanding of how the traumatic experiences that affect so many American children can trigger serious physical and mental illness.
The movement draws on decades of research that has found that children who endure sustained stresses in their day-to-day lives — think sexual abuse, emotional neglect, a mother’s mental illness, a father’s alcoholism — undergo biochemical changes to their brains and bodies that can dramatically increase their risk of developing serious health problems, including heart disease, lung cancer, asthma and depression.
“[Nadine] has probably single-handedly done more to elevate this issue than anyone else,” said Dr. Mona Hanna-Attisha, the pediatrician known for documenting the rise in children’s blood lead levels in Flint, Mich., after the city switched its water supply.
With Burke Harris’ selection as the state’s first surgeon general, California is poised to become a vanguard for the nation in embracing the research that traces adverse childhood experiences, or ACEs, to the later onset of physical and mental illness. In pockets across the country, it’s increasingly common for schools and correctional systems to train staff on how academic and behavioral problems can be rooted in childhood trauma. Burke Harris envisions a statewide approach whereby screening for traumatic stress is as routine for pediatricians as screening for hearing or vision, and children with high ACEs scores have access to services that can build resilience and help their young bodies reset and thrive.
As California’s surgeon general, she will have a powerful bully pulpit — and the firm backing of a new administration with deep pockets. In his first weeks in office, newly elected Gov. Gavin Newsom has made clear he intends to devote significant resources to early childhood development. He has named several recognized experts in child welfare, along with Burke Harris, to top posts, and is promoting child-centric policies that include extended family leave for new parents, home nursing visits for new families and universal preschool. In his first state budget proposal, released last month, Newsom called out ACEs by name and committed $105 million to boost trauma and developmental screenings for children.
“It should be no surprise to anyone that I’m going to be focusing on ACEs and toxic stress,” Burke Harris said in a phone interview just days into the new job. “I think my selection is a reflection of where that issue fits in the administration’s priorities.”
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A Game-Changing Study
Adversity is the sort of thing we intuitively understand, at least to some extent. Having a parent who struggles with addiction or mental illness is hard on kids, as is growing up in a neighborhood marked by poverty, gun violence or drug abuse.
A 1990s study laid the groundwork, however, for an understanding of adversity that suggests it poses a pervasive threat to public health.
During interviews with patients at a Kaiser Permanente obesity clinic in Southern California, Dr. Vince Felitti was shocked at how many said they had been sexually abused as children. He wondered if the experiences could be connected. (Kaiser Health News, which produces California Healthline, is not affiliated with Kaiser Permanente.)
As head of the Department of Preventive Medicine at Kaiser Permanente in San Diego, he had access to a huge pool of patients to try to find out. Together with the Centers for Disease Control and Prevention, he surveyed more than 17,000 adult patients about 10 areas of childhood adversity. Among them: Did a parent or other adult in your household physically abuse you? Emotionally abuse you? Sexually abuse you? Go to prison? Was your mother regularly hit? Did you often go hungry? Were your parents divorced? The researchers scored each patient, assigning a point for each yes, and matched up the responses with patients’ medical records.
What they found was striking. Almost two-thirds of participants reported experiencing at least one kind of adversity, and 13 percent — about 1 in 8 — said they had experienced four or more. Those who reported experiencing high doses of trauma as children were far more likely to have serious health problems as adults, including heart disease, stroke, cancer and diabetes. And the higher their ACEs score, the worse their health was likely to be.
This extended to mental health, as well: Adults who reported experiencing four or more ACEs were 4.6 times as likely to have clinical depression and 12 times as likely to have attempted suicide.
In the 20 years since, scientists have built on the research, replicating the findings and digging into the “why.” In the simplest terms, traumatic events trigger surges in cortisol, the “stress” hormone. When those surges go unchecked for sustained periods, they can disrupt a child’s brain development, damage the cardiovascular system and cause chronic inflammation that messes with the body’s immune system.
And where children really get into trouble is when they also are missing the best-known antidote to adversity: a nurturing and trustworthy caregiver. Without that positive stimulation, children can end up with an overdeveloped threat response and a diminished ability to control impulses or make good decisions. Children with high ACEs scores are more likely to develop attention deficit hyperactivity disorder, known as ADHD, and cognitive impairments that can make school a struggle. They are more likely to grow into adults who drink to excess, are violent or are victims of violence.
The research is compelling, because it has the potential to explain so many intractable health problems. What if some portion of Generation ADHD really has PTSD? What if obesity and hypertension are disorders with roots in childhood experiences, and not just what we eat for dinner?
‘What Happens To You Matters’
Until now, Burke Harris’ professional epicenter has been Bayview-Hunters Point in San Francisco. It’s a vibrant community with a history of activism, but also deeply impoverished, and blighted by pollution and violence. It was there that Burke Harris, at her pediatric clinic, noticed that many of her young patients with serious medical conditions also had experienced profound trauma. And patients who had experienced serious adversity were 32 times more likely to be diagnosed with learning and behavioral problems than kids who had not.
When a colleague introduced her to the ACEs study, she saw her patients written between its lines. Though these problems might be concentrated in Bayview, they certainly weren’t confined there. This was a health crisis transcending race, class and ZIP code.
In the years since, Burke Harris has worked to advance ACEs science though her work at the clinic and her nonprofit research institute, the Center for Youth Wellness. She regularly travels the country to train fellow pediatricians in trauma screening and treatment. She has written an acclaimed book on the issue, “The Deepest Well,” and her TED talk on the topic has been viewed nearly 5 million times online.
Now, she’ll be directing her singular focus back on California.
She plans to start with a statewide tour to hear from doctors and other health leaders about barriers to increasing pediatric screening and care. She’ll also be talking about the science of ACEs. “It’s Public Health 101 that raising awareness is a critical form of primary prevention,” she said.
But even with the funding included in Newsom’s budget, there are challenges to standardizing trauma screening. For one: In medicine, it’s common practice that you screen only for what you can treat. Many doctors — even those persuaded by research on adversity — have raised concerns about the lack of established protocols for treating childhood trauma. What can a pediatrician, with her 15-minute time slots and extensive to-do list, do about the ills of an absent parent, or a neighborhood riddled with gun violence?
In general, experts working on the issue say a critical ingredient in helping kids heal is ensuring they find and develop healthy relationships.
“All of us want to feel seen, heard, understood and supported,” said Alicia Lieberman, a researcher at the University of California-San Francisco who specializes in early childhood trauma. Involving parents is an essential aspect of treatment, particularly because so many have experienced trauma themselves. “It has to start with an acknowledgment that what happens to you matters.”
Researchers have found early success in seemingly simple interventions: Therapists coaching parents by filming and playing back positive interactions with their child. Therapists working with teachers on how to support their students. Key to success, said Pat Levitt, chief scientific officer at Children’s Hospital Los Angeles, are quality programs that start early and recognize the role of relationships.
At her clinic, Burke Harris coordinates with a team that wraps a child in care, treating mind and body. When a patient scores high on the adversity scale, she can send them down the hall to a therapist; connect them with classes on meditation, nutrition and exercise; involve the family in counseling; and aggressively monitor for and treat any physical manifestations.
Most clinics aren’t set up for this staff-intensive approach.
Dr. Andria Ruth, a pediatrician with the Santa Barbara Neighborhood Clinics in California, is among those researching how to “treat” adversity within a more traditional doctor’s office. Her research team is randomly assigning patients who screen positive for trauma into one of three groups. One group is assigned a navigator who connects the family to services for basic needs, such as food and housing. A second group also sees a behavioral health therapist at their child wellness visits. The third group receives both those services, and gets home family visits from therapists.
Ruth has a healthy skepticism about what’s possible, but she and her colleagues are convinced childhood trauma does pose a potent health threat: None of them felt comfortable including a control group that wouldn’t receive any services.
In the big picture, these experts say, addressing the fallout of traumatic stress will require a broader paradigm shift, to a system that recognizes that bad behavior can be a physical symptom rather than a moral failing. Gov. Newsom has signaled a move in that direction: In January, he said he would transfer the Division of Juvenile Justice out of the Department of Corrections, which runs the state’s prison system, and into the Health and Human Services Agency.
Garnering that kind of official backing is a powerful boost, said Jason Gortney, director of innovation at the Children’s Home Society of Washington, that state’s oldest and largest nonprofit dedicated to child welfare. His organization has lots of programs with promising results, he said, but connecting them to state agencies that aren’t used to working together is a challenge.
With Burke Harris crusading from the surgeon general post, Gortney said, he and fellow advocates across the country are hoping California can provide a beacon.
“Maybe California can show some of the other states how to do this,” he said.
Children’s brains are literally shaped by traumatic experiences, which can lead to problems with anger, addiction, and even criminal activity in adulthood, says van der Kolk. Side Effects contributing producer Barbara Lewis spoke with him about his book.
Barbara Lewis: Can psychologically traumatic events change the physical structure of the brain?
Dr. Bessel van der Kolk: Yes, they can change the connections and activations in the brain. They shape the brain.
The human brain is a social organ that is shaped by experience, and that is shaped in order to respond to the experience that you’re having. So particularly earlier in life, if you’re in a constant state of terror; your brain is shaped to be on alert for danger, and to try to make those terrible feelings go away.
The brain gets very confused. And that leads to problems with excessive anger, excessive shutting down, and doing things like taking drugs to make yourself feel better. These things are almost always the result of having a brain that is set to feel in danger and fear.
As you grow up an get a more stable brain, these early traumatic events can still cause changes that make you hyper-alert to danger, and hypo-alert to the pleasures of everyday life.
BL: So are you saying that a child’s brain is much more malleable than an adult brain?
BK: A child’s brain is virtually nonexistent. It’s being shaped by experience. So yes, it’s extremely malleable.
BL: What is the mechanism by which traumatic events change the brain?
BK: The brain is formed by feedback from the environment. It’s a profoundly relational part of our body.
In a healthy developmental environment, your brain gets to feel a sense of pleasure, engagement, and exploration. Your brain opens up to learn, to see things, to accumulate information, to form friendships. When you’re traumatized you’re afraid of what you’re feeling, because your feeling is always terror, or fear or helplessness. I think these body-based techniques help you to feel what’s happening in your body, and to breathe into it and not run away from it. So you learn to befriend your experience.
But if you’re in an orphanage for example, and you’re not touched or seen, whole parts of your brain barely develop; and so you become an adult who is out of it, who cannot connect with other people, who cannot feel a sense of self, a sense of pleasure. If you run into nothing but danger and fear, your brain gets stuck on just protecting itself from danger and fear.
BL: Does trauma have a very different effect on children compared to adults?
BK: Yes, because of developmental issues. If you’re an adult and life’s been good to you, and then something bad happens, that sort of injures a little piece of the whole structure. But toxic stress in childhood from abandonment or chronic violence has pervasive effects on the capacity to pay attention, to learn, to see where other people are coming from, and it really creates havoc with the whole social environment.
And it leads to criminality, and drug addiction, and chronic illness, and people going to prison, and repetition of the trauma on the next generation.
BL: Are there effective solutions to childhood trauma?
BK: It is difficult to deal with but not impossible.
One thing we can do – which is not all that well explored because there hasn’t been that much funding for it – is neurofeedback, where you can actually help people to rewire the wiring of their brain structures.
Another method is putting people into safe environments and helping them to create a sense of safety inside themselves. And for that you can go to simple things like holding and rocking.
We just did a study on yoga for people with PTSD. We found that yoga was more effective than any medicine that people have studied up to now. That doesn’t mean that yoga cures it, but yoga makes a substantial difference in the right direction.
BK: It’s about becoming safe to feel what you feel. When you’re traumatized you’re afraid of what you’re feeling, because your feeling is always terror, or fear or helplessness. I think these body-based techniques help you to feel what’s happening in your body, and to breathe into it and not run away from it. So you learn to befriend your experience.
When Matthew Timion needed to get his son treatment for mental illness, he did not anticipate it would be so hard to get the insurance company to pay for it.
Timion adopted his son out of foster care when he was 3. He says the trauma and neglect his son experienced in his early childhood led to mental health issues later in life.
At age 10, Timion’s son began to act out aggressively and threaten violence. At one point, Timion was bringing his son to an inpatient psychiatric hospital in the Chicago area every few weeks.
At times, the insurance company and the hospital staff disagreed over whether treatment was necessary.
“He was cutting himself and he’s hearing voices and he is threatening to run away and kill me,” Timion says. “The insurance company says, ‘Well, he hasn’t done that in three or four days now, he’s good to go home.’ And the hospital said, ‘No, he has to stay.’”
Timion filed multiple appeals and won. But months later, when his son needed even more costly residential treatment, Timion almost relinquished parental custody to force the state to step in and pay for treatment he couldn’t afford.
But data from Illinois shows not all parents can navigate insurance for their children like Timion. Dozens of children a year enter state custody when parents run out of options for getting them the mental health care they need. Fundamentally this issue of who pays for mental health treatment comes down to a law that requires insurance companies to cover mental health care at the same level as other medical conditions.
The Complicated Battle for Coverage
To get an insurance company to pay for a claim they’ve denied, patients can file an appeal. But if the internal reviewer—a medical doctor employed by the insurance company—agrees the treatment isn’t needed, the patient has to pay the bill.
When this happened to Timion, he appealed to the state agency that regulates insurers. The case was reviewed by a psychiatrist, who determined Timion’s son needed to be at the hospital, and the insurance company, Blue Cross Blue Shield of Illinois, must pay for it.
“So in our case it worked out,” Timion says. “Most people don’t have the tenacity to go through this process,” especially if they’re in the middle of a crisis with their child.”
A 2015 survey from the National Alliance on Mental Illness suggests Timion’s experience is not unique.
NAMI asked consumers across the country about their experience with private insurers, and found that people seeking coverage for mental health services report being denied at a rate double those wanting coverage for other medical services.
Blue Cross Blue Shield of Illinois declined an interview but sent a statement saying the level of care they cover for group, individual and family health insurance policies is based on medical necessity, which includes looking at national guidelines and the needs of individual members. For members who receive health coverage through a government-sponsored program, BCBSIL says coverage is determined by the state or the Centers for Medicare and Medicaid Services.
Ten years ago, Congress enacted the Mental Health Parity and Addiction Equity Act. It requires most insurance companies to cover mental illness on par with other medical issues.
But the law doesn’t require insurers to cover all mental health treatments. Rather, they must demonstrate they cover mental and physical health equally.
David Lloyd, national senior policy adviser for the mental health advocacy group the Kennedy Forum, says insurance companies have made some progress toward compliance with parity laws. They no longer charge higher deductibles or have stricter limits on mental health services. But potential violations include denying coverage they deem unnecessary.
John Foley, CEO of Benefit Consulting Group in Northbrook, Ill., says during a time of rising health care costs, insurers don’t want to spend money on expensive treatments that aren’t absolutely needed.
Foley says hypothetically, if an insurance company is asked to pay for a mental health treatment that will cost $600,000, they want to know: “Is there another way to treat this, to handle it for $75,000 and get the same outcome?”
Part of the challenge is that what’s medically necessary is sometimes up for debate, says Foley. If someone breaks a bone, they need a cast. But with issues pertaining to mental health, it’s not always as clear-cut.
Foley says there are also financial incentives on both sides: Providers make more money on expensive treatments, while insurers save money by denying that same care.
“Providers are not angels and neither are the payers. I just want to make that clear,” Foley says. “Neither side is, shall we say, virtuous.”
Stepping Up Enforcement
Advocates say regulators need to step up and do a better job enforcing existing laws so that the burden doesn’t fall to patients in crisis—or their families—to battle insurers when mental health coverage gets denied.
In recent years, state and federal regulators have taken steps to improve compliance with parity laws.
A 2014 investigation led by New York Attorney General Eric Schneiderman uncovered numerous parity violations by private insurers, resulting in settlements that forced the companies to return millions of dollars to consumers. In 2014 and again in 2017, the state of California fined Kaiser Permanente for failing to provide members with timely access to mental health care.
In Illinois, where Timion is, Governor Bruce Rauner recently signed into law a measure advocates say will enable greater enforcement of parity laws by increasing transparency and accountability for health plans.
Lloyd says Illinois now has the strictest mental health parity laws in the country, and he hopes other states will follow suit.
The Price Of Coverage Denial
Mental health coverage denials can have dire consequences on families.
When Timion’s son was hospitalized again at age 13, doctors said it wasn’t safe for him to return home. He needed to go to a residential treatment center to receive 24/7 care, which can cost up to $200,000 a year.
Timion’s insurance company said they would cover one month. But many facilities won’t accept a patient without proof of payment for at least six months, which Timion did not have.
While his son remained at the psychiatric hospital, Timion says he spent eight hours a day for more than a month on the phone with his insurance company, state agencies, even lawmakers, trying to figure out how to pay for residential treatment.
Thanks to a family connection with a mental health facility nearby, Timion moved his son from the hospital into residential treatment. The month covered by his insurance company ran out, but he convinced the child welfare agency to cover treatment until a state grant would kick in to pay for the remainder of his son’s treatment.
“Mental health care is not treated the same way as cancer or anything else,” Timion says. “So people have to go through these ridiculous hoops” to get treatments covered.
The Kennedy Forum’s David Lloyd says Timion’s story is an example of why it’s in states’ best interests to ensure parity laws are enforced.
“Costs are going to be picked up by taxpayers in one way or another,” he says.
A Father’s Worry
Timion’s son is now 15 and just moved home to Illinois after a year-and-a-half at another residential facility in Missouri.
His son is doing much better, Timion says, but there’s still a long road ahead.
“Parenting never stops,” Timion says. “In his case, it’s just a lot harder.”
He worries about parents who aren’t able to access mental health treatment for their child.
“Most of the parents I talk to, they’re looking at their kids ending up in jail soon, or dead,” Timions says. “That’s just how bad the behaviors are getting.”
This story is part of a podcast from Side Effects Public Media called The Workaround. You can listen and subscribe to the show here.
Christine Herman is a recipient of the 2018-2019 Rosalynn Carter Fellowships for Mental Health Journalism. Follow her on Twitter: @CTHerman
Caleb, 11, was thin with blond hair, glasses, and a big smile where crooked teeth jockeyed for space. He and his brother, Elijah, were adopted by Martin and Dena Lishing when Elijah was a toddler and Caleb was a baby. Their young birth mother struggled from addiction.
Born a preemie at 24-weeks-old and weighing only 1 pound, Caleb beat the odds. His 5th grade teachers remember him as shy, inquisitive and loving. He wore cowboy boots to school every day. He was fascinated by all things Titanic. A classmate says, “He was really funny. He always had jokes and puns to tell.”
It was a warm, overcast evening on April 23, 2018–Caleb was asleep in his bed. An adult babysitter was in a nearby room. Meanwhile, 13-year-old Elijah dismantled their grandfather’s locked gun cabinet to access a .357 Magnum. Caleb was sleeping on his stomach when Elijah shot him in the back, killing him.
This tragedy was the first murder in the small, sleepy town of Streetsboro, Ohio in 20 years. But it wasn’t the first time police were called to the Lishing home on Alden Drive.
Mental health interventions, too late
Over the years, the family had attempted – unsuccessfully – to get mental health treatment for Elijah although details are not public. Reports indicated Elijah tried to commit suicide twice. In 2017, Elijah was charged with indecent exposure on the school bus. In 2018, his stepmother called police because he became “unruly.” When he told officers he was thinking of harming himself, they transported him to a local behavioral health center for evaluation.
Only four days later, Elijah shot and killed his little brother Caleb. Police have not disclosed Elijah’s motive but say it was premeditated.
Psychologist Dr. Amy Thomas testified at the sentencing hearing that Elijah suffered early childhood abuse. Elijah claims, in addition to neglect from his birth mother, he was subsequently abused in the Lishing home. He details harsh punishments from a young age and says his adopted mother was more devoted to premature Caleb than to him. The Lishing couple also divorced several years after the adoption.
Thomas diagnosed him with reactive attachment disorder (RAD), also called developmental trauma disorder (DTD). This often occurs when a child experiences chronic abuse or neglect before the age of 5. A child with DTD has disrupted brain development and, if not provided early and highly-specialized intervention, can suffer long-term and devastating impacts. They have difficulty forming healthy attachments with caregivers and others which can lead to familial, social, educational and legal issues. Dr. Thomas also diagnosed Elijah with post-traumatic stress disorder and conduct disorder, both common diagnoses for children with DTD.
Elijah’s situation is even more complex than DTD alone, however. Dr. Thomas testified that Elijah also suffers from paranoia and stated that a previous clinician had diagnosed him with schizophrenia. Reflecting on the time of the murder, Elijah told the court, “I was living inside my head, unable to determine the difference between imagination and reality.” This points to serious mental illness in addition to complex DTD.
The worrisome correlation of complex developmental trauma and mental illness
Dr. John Alston, psychiatrist for the Institute for Attachment and Child Development, found a strong correlation between complex DTD and co-morbid mental illness. In his studies, Dr. Alston recognized that adults who abuse or neglect their children often do so as a result of a mental illness. Thus, their children may suffer the unfortunate combination of both the nature (genetics) and nurture (attachment) consequences.
And when children with complex DTD inherit a mental illness, it is often in a profound way according to Dr. Alston. He gives the analogy of more commonly-known childhood health issues. “You never hear of symptoms of childhood diabetes in a mild form, you never hear of childhood asthma in a mild form. They are always inherited in a severe or profound form and therefore the earlier the onset, the more severe the disorder, the more intensive the treatment needs to be,” said Dr. Alston. “It is exactly the same when we are talking about mental health disorders.”
Elijah told the court, “I was living inside my head, unable to determine the difference between imagination and reality.” This points to serious mental illness in addition to complex DTD.
Forrest Lien, Director of the Institute for Attachment and Child Development, is adamant that not all children with developmental trauma are dangerous. Rather, it is often the unfortunate combination of specific and severe disorders. “Developmental trauma disorder alone does not deem a child dangerous. Furthermore, not all children with DTD have a mental illness. Yet, some do,” Lien says. “Children with complex developmental trauma often feel angry and can lack empathy. When you combine a child who feels slighted and vengeful with a misdiagnosed or poorly-treated severe bipolar disorder with psychotic features, it can be dangerous.”
Neuroscience is an emerging science and this link between early trauma and mental illness is not well known. However, given the potential for sometimes dangerous antisocial behavior, it is critical that clinicians still give careful consideration to these correlations. It is vital, Dr. Alston says, to differentiate the impact of severe trauma from potential mental illness symptoms in order to properly diagnose and treat the whole child.
The case for better mental health support
Unfortunately, Elijah’s developmental trauma and co-morbid disorders were not accurately diagnosed until after he was incarcerated—not in time to prevent this horrific incident. He did not receive appropriate treatment and the costs to his family and himself have been enormous.
Martin and Dena are heartbroken having suffered the loss of their children. Innocent 11-year-old Caleb’s life has been cut short. And they must now grapple with the incarceration of their other son.
“When you combine a child who feels vengeful and slighted with a misdiagnosed or poorly-treated severe bipolar disorder or schizophrenia with psychotic audio and visual hallucinations, it can be dangerous,” said Institute for Attachment and Child Developmental Executive Director Forrest Lien.
Elijah, now 13, is a convicted murderer facing a lifetime of struggles. He has been sentenced to juvenile detention until he turns 21 and at that time his case will be reevaluated with the potential for adult detention time. According to the Record Courier, “Judge Robert Berger said that despite abuse the boy suffered as a child, it did not excuse shooting and killing his brother.”
Perhaps with earlier diagnosis and interventions, Elijah wouldn’t be sitting in a prison cell today. Caleb might be running around the playground instead of being memorialized by the Titanic-shaped play fort the community is erecting in his memory.
Published originally by IACD. Updated 1/28/2019 after sentencing.
Justin Taylor Bean, removed from his abusive birth parents as a toddler, spent the next two decades in psychiatric hospitals and more than 40 residential facilities.
Over the years, his physical and verbal aggression increased despite treatment and medication. Then, at the age of 22, Justin strangled to death a fellow group home resident.
During his sentencing last month, District Attorney Laura Thomas argued almost sympathetically that Justin “did not have a chance — it was all over for him at age 2.” She then asked that he be sentenced to a life behind bars, which he was.
“There’s not a miraculous cure,” Thomas said. “The public needs to be protected from him forever.”
Many will be outraged by this story, but few will understand how something like this happens. After all, all the warning signs were there. Doesn’t that mean this could have been prevented?
Sadly, it’s not that simple.
More than a million children each year experience early childhood trauma, most often due to abuse and neglect. “Developmental trauma,” a term coined by leading expert Dr. Bessel van der Kolk, affects a child’s brain development. The impact can be devastating, including severe attachment and behavioral issues. These traumatized children need comprehensive, specialized professional intervention and treatment – treatment that’s expensive and not available in most areas.
Unfortunately, I know all too well just how true this is. My adopted son, Devon, has also attempted to seriously harm fellow residents in group homes – more than once. Like Justin, Devon has a diagnosis of reactive attachment disorder and has a similar treatment history. My son could easily have killed someone, he’s just been small enough that staff can control him.
He’s received medication and thousands of hours of therapy. He’s only become more violent and dangerous. Unable to safely live at home, he’s been in and out of psychiatric residential treatment facilities for years. All I can do is helplessly watch as he careens toward adulthood, an angry and violent young man.
What’s clear from Devon and Justin’s stories is that our mental health system does not yet know how to effectively treat children with the most severe developmental trauma. Residential treatment facilities, often the only available choice, are virtual incubators for violence, and many children leave more dangerous than they went in. And far too many end up institutionalized or incarcerated.
As a society, we take these already broken and vulnerable children, and like a gruesome medieval torture press, crush their hope for a good future. We perpetuate their trauma by piling on with broken systems that exacerbate the very problems they try to address: foster care, family court, health care, mental health services and juvenile justice, to name a few.
Further, our communities don’t understand developmental trauma and underestimate its impact. And so, schools, unwitting parents, therapists and social groups pile on too. Under this pressing weight, what hope is there for these children?
The vast majority of people with mental health disorders do not go on to commit murder. But given our apathetic and broken mental health system, developmental trauma can be its own life sentence for youth in the child welfare system. It negatively affects all areas of life – relational, legal, educational and financial. A few victims, like Justin, go on to commit violent crimes.
How many lives have to be destroyed? Isn’t it time to recognize developmental trauma as the unsolved challenge it is, and prioritize funding research, prevention and treatment? Until we do, too many broken children will continue to grow into broken adults and we will continue to see tragedies like the murder committed by Justin.
When Toni and Jim Hoy adopted their son Daniel as a toddler, they did not plan to give him back to the state of Illinois 10 years later.
“Danny was this cute, lovable little blonde-haired, blue-eyed baby,” Jim said. There were times Daniel would reach over, put his hands on Toni’s face and squish her cheeks.
“And he would go, ‘You pretty mom,’” Toni said. “Oh my gosh, he just melted my heart when he would say these very loving, endearing things to me.”
But as Daniel grew older, he began to show signs of serious mental illness that manifested in violent outbursts. When his parents exhausted all other options, they decided to relinquish custody to the state to get Daniel the treatment he needed.
“To this day it’s the most gut-wrenching thing I’ve ever had to do in my life,” Jim said. “But it was the only way we figured we could keep the family safe.”
Across the U.S., children encounter many barriers to mental health treatment, including a shortage of psychiatric beds and coverage denials from insurance companies. In a desperate attempt to get their child treatment, some parents have discovered a last resort workaround: they trade custody for treatment.
Known as a psychiatric lockout, a parent brings a child to a hospital and refuses to pick them up. The child then enters foster care, and the state is obligated to pay for their care.
This happened to Daniel in 2008, and has happened to thousands of other children before him, according to a report from the Government Accountability Office.
Today, despite a 2015 Illinois law that states families should never have to trade custody for mental health treatment, at least four children a month enter state custody this way, according to data obtained by Side Effects.
Out of options
Daniel grew up as the youngest of four children in Ingleside, just north of Chicago. As a baby, he’d been severely neglected — starving and left for dead — and the early trauma Daniel experienced affected his brain development.
At around age 10, his post-traumatic stress disorder manifested in violent outbursts.
“You could almost tell the stories that would describe him like a monster,” Toni said.
“He held knives to people’s throats. He tried putting his fingers and his tongue in the light sockets. He broke almost every door in the house.”
In the car, there were times when he’d reach over and grab the wheel while Toni was driving to try and force the car into oncoming traffic. Other times, he would lash out at his siblings.
“At the same time, he’s a little boy,” she said. “He didn’t want to be that way. He didn’t like being that way.”
Despite Toni and Jim’s efforts to help their son with therapy, the violence escalated. Daniel was hospitalized almost a dozen times over a period of two years.
His doctors said he needed more intensive mental health services than he could get while living at home. He needed 24/7 residential treatment, but both Daniel’s private health insurance, and the secondary Medicaid coverage he received as an adoptee, denied coverage.
So the Hoys applied for a state grant meant for children with severe emotional disorders. They also asked for help from Daniel’s school district, which is supposed to cover a portion of the costs when students need residential care. They were denied both.
“We were told we had to pay out of pocket for it,” Toni said. The treatment could cost up to $150,000 a year, and that was money they didn’t have.
Then, during Daniel’s 11th hospitalization, the Illinois Department of Children and Family Services, or DCFS, gave the Hoys an ultimatum.
“[They] basically said, ‘If you bring him home, we’re going to charge you with child endangerment for failure to protect your other kids,’” Toni said. “‘And if you leave him at the hospital, we’ll charge you with neglect.’”
Out of options, the Hoys chose the latter option as a last-ditch workaround to get treatment.
Once the DCFS steps in to take custody, the agency will place the child in residential treatment and pay for it, said attorney Robert Farley, Jr., who is based in Naperville.
“So you get residential services, but then you’ve given up custody of your child,” he said. “Which is, you know, barbaric. You have to give up your child to get something necessary.”
The Hoys were investigated by DCFS and charged with neglect. They appealed in court and the charge was later amended to a “no-fault dependency,” meaning the child entered state custody at no fault of the parents.
Losing custody meant Toni and Jim could visit Daniel and maintain contact with him, but they could not make decisions regarding his care.
Toni spent months reading up on federal Medicaid law and she learned the state-federal health insurance program is supposed to cover all medically necessary treatments for eligible children.
The Hoys hired a lawyer, and two years after giving Daniel up, they sued the state.
Less than a year later, in 2011, they settled out of court, regained custody of Daniel, who was 15, and got the funding for his care.
Around the same time, Farley decided to take on the lack of access to mental health care on behalf of all Medicaid-eligible children in the state. He filed a class-action lawsuit, claiming Illinois illegally withheld services from children with severe mental health disorders.
“There [are] great federal laws,” Farley said. “But someone’s not out there enforcing them.”
In the lawsuit, Farley cited the state’s own data that shows 18,000 children in Illinois have a severe emotional or behavioral disorder, yet only about 200 of them receive intensive mental health treatment.
In a settlement in January, a judge ruled the state must make reforms to comply with Medicaid law. The state has until October to come up with a plan to ensure all Medicaid-eligible children in the state have access to in-home and community-based mental health services.
A law that didn’t fix the problem
While these legal battles were taking place, lawmakers began their own work to ensure parents no longer have to give up custody to get their children access to mental health services.
In Illinois, six state agencies interact with at-risk children in some form. But Democratic state Rep. Sara Feigenholtz said they operate in silos, which causes many children to slip through the cracks and end up in state custody.
“It’s almost like these there’s a vacuum, and the kids are just being sucked into DCFS,” she said.
Feigenholtz worked to get a bill passed in 2014. The Custody Relinquishment Prevention Act, which became law in 2015, orders those six agencies to work together to help families that are considering a lockout to find care for their child and keep them out of state custody.
So the agencies developed a program together that launched in 2017 — years after the deadline set by the law. It aims to connect children to services.
But Feigenholtz said the fact lockouts still happen shows a lack of commitment on behalf of the agencies.
“I think the question is: Shouldn’t government be stepping in and doing their job? And they’re not,” she said. “We just want them to do their job.”
B.J. Walker, head of DCFS, said the reasons lockouts happen are complex. “If law could fix problems, we’d have a different world,” she said.
Walker said many children in need of residential treatment for mental illness have such severe or unique conditions that it can be a struggle to find a facility that’s willing and able to take them.
Even for families that get state funding to pay for the care, families Side Effects Public Media spoke to said the waiting lists can run six months or longer. When parents are unable to arrange a placement, the child may enter state custody, and as ProPublica Illinois reports, they could languish for months in emergency rooms that are ill-equipped to provide long-term care. Some out-of-state facilities are not willing to accept Illinois children, citing concerns over severe delays in payments that stem from a recent two-year budget crisis in Illinois.
The program to prevent lockouts requires families take children home from the hospital after medical providers have done everything they can. But many parents say it’s not an option for them because their child remains too violent for home.
For these reasons, children continue to enter state custody as a final effort by their families to help them.
A spokesman for DCFS said in an email that, when the agency gets blamed for this problem, it’s like when a pitcher comes in at the end of a losing game to save the day and gets tagged with the loss.
What it will take to prevent lockouts
Lockouts can happen anywhere, but Heather O’Donnell, a lawyer with a Chicago-based mental health treatment provider, Thresholds, said the situation is particularly bad in Illinois.
She said a big part of the problem is that society sweeps mental health conditions under the rug until there’s a crisis.
“We don’t have a very good system in Illinois for children or adolescent or young adults with significant mental health conditions,” O’Donnell said. “What Illinois needs to put into place is a system that helps these families early on so that these kids never get hospitalized.”
That’s what the state is trying to fix now.
The consent decree issued as part of the class-action lawsuit settlement requires the state to propose a plan by October to ensure all Medicaid-eligible children in the state have access to mental health services in their communities, with changes slated to begin in 2019. Farley estimates the changes will cost the state several hundred thousand dollars, based on what it cost other states like Massachusetts to implement similar reforms.
The difference treatment and family can make
Daniel Hoy is now 23 and has been out of residential treatment — and stable — for five years. He has a 2-year-old daughter, works nights for a shipping company in Rantoul, in central Illinois, where he recently moved to be closer to his parents.
Daniel said treatment was tough, and he would not have gotten better without his parents’ love and support.
“Sometimes it’s so hard to do it for yourself,” he said. “It almost helps to know that I’m doing it for myself, but I’m also doing it for my family and for our relationship.”
Toni’s thankful that despite losing Daniel while trying to help him, they ultimately made it through intact. She’s in touch with other families that have gone through lockouts too and most, she said, are not as lucky.
That’s why Toni said she will continue to speak out about this issue. “Kids do need services,” she said. “But they also need the support of their families. And when they have both, a lot of kids can be a lot more successful.”
How did resilience become a standard? How did we come to view children almost as nuisances who just need minimal support? How did children’s needs become dismissable?
