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Sandra's 17-year-old daughter, Lindsey, has autism. Lindsey
thrives on routine, and got special
help at school until the
coronavirus pandemic cut her off from the trained teachers and
therapists
she'd come to rely on. Audra Melton for NPR
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NPR Ed
'I've Tried Everything': Pandemic Worsens Child Mental Health Crisis
Cory Turner, Christine Herman, Rhitu Chatterjee
January 18, 2021
A bag of Doritos, that's all Princess wanted.
Her mom calls her Princess, but her real name is Lindsey. She's 17 and
lives with her mom, Sandra, a nurse, outside of Atlanta. On May 17,
2020, a Sunday, Lindsey decided she didn't want breakfast; she wanted
Doritos. So she left home and walked to Family Dollar, taking her pants
off on the way, while her mom followed on the phone with police.
Lindsey has autism (NPR isn't using last names to protect her privacy).
It can be hard for her to communicate and navigate social situations.
She thrives on routine, and gets special help at school. Or got help,
before the coronavirus pandemic closed schools and forced tens of
millions of children home. Sandra says that's when their living hell
started.
"It's like her brain was wired," she says. "She'd just put on her jacket, and she's out the door. And I'm chasing her."
On May 17, Sandra chased her all the way to Family Dollar. Hours later, Lindsey was in jail.
Lindsey is one of almost 3 million children in the U.S. who have been
diagnosed with a serious emotional or behavioral health condition. When
the pandemic forced schools and doctors' offices closed last spring, it
also cut children off from the trained teachers and therapists who
understand their needs.
As a result, many, like Lindsey, spiraled into emergency rooms and even
police custody. Federal data show a nationwide surge of kids in mental
health crisis during the pandemic — a surge that's further taxing an
already overstretched safety net.
'Take her'
Even after schools closed, Lindsey would continue to wake up early, get
dressed and wait for the bus. When it stopped coming, Sandra says, her
daughter just started walking out of the house, wandering, a few times
a week.
In those situations, Sandra did what many families in crisis tell NPR
they've had to do since the pandemic began: race through the short list
of places she could call for help.
To Get Mental Health Help For A Child, Desperate Parents Relinquish Custody
"This is ridiculous," she says of the wait. "It's supposed to be a
crisis team. But I'm on hold for 40, 50 minutes. And by the time you
get on the phone, [the crisis] is done!"
Then there's the local hospital's emergency room, but Sandra says she
had taken Lindsey there for previous crises and been told there isn't
much they can do.
That's why, on May 17, when Lindsey walked to Family Dollar in just a
red t-shirt and underwear, to get that bag of Doritos, Sandra called
the last option on her list: the police.
Sandra arrived at the store before the police and paid for the chips.
According to Sandra and police records, when an officer approached,
Lindsey grew agitated and hit her mom on the back, hard.
Sandra says she explained to the officer: " 'She's autistic. You know,
I'm OK. I'm a nurse. I just need to take her home and give her her
medication.' "
Lindsey takes a mood-stabilizer, but because she left home before
breakfast, she hadn't taken it that morning. The officer asked if
Sandra wanted to take her to the nearest hospital.
The hospital wouldn't be able to help Lindsey, Sandra said. It hadn't
before. "They already told me, 'Ma'am, there's nothing we can do.' They
just check her labs, it's fine, and they ship her back home. There's
nothing [the hospital] can do," she recalls telling the officer.
Sandra asked if the police could drive her daughter home, so the teen
could take her medication, but the officer said no, they couldn't. The
only other thing they could do, the officer said, was take Lindsey to
jail for hitting her mom.
"I've tried everything," Sandra said, exasperated. She paced the
parking lot, feeling hopeless, sad and out of options. Finally, in
tears, she told the officers, "Take her."
Schools Say They Have To Do Better For Students With Disabilities This Fall
Lindsey does not like to be touched and fought back when authorities
tried to handcuff her. Several officers wrestled her to the ground. At
that point, Sandra protested and says an officer threatened to arrest
her too if she didn't back away. Lindsey was taken to jail, where she
spent much of the night until Sandra was able to post bail.
Clayton County Solicitor-General Charles Brooks denies that Sandra was
threatened with arrest and tells NPR, while Lindsey's case is still
pending, his office "is working to ensure that the resolution in this
matter involves a plan for medication compliance and not punitive
action."
Sandra isn't alone in her experience. NPR heard similar stories from
multiple families — stories of calling in the police when a child was
in crisis because caretakers didn't feel they had any other option.
'The whole system is really grinding to a halt'
Roughly 6% of U.S. children, ages 6 through 17, are living with serious
emotional or behavioral difficulties, including children with autism,
severe anxiety, depression and trauma-related mental health conditions.
Many of these children depend on schools for access to vital therapies.
When schools and doctors' offices stopped providing in-person services
last spring, kids were untethered from the people and supports they'd
come to rely on.
"The lack of in-person services is really detrimental," says Dr. Susan
Duffy, a pediatrician and professor of emergency medicine at Brown
University. "So school-based services are one, but also in-person
services in general are disrupted [by the pandemic]."
Marjorie, a mother in Florida, says her 15-year-old son has suffered
during these disruptions. He has ADHD and oppositional defiant
disorder, a condition marked by frequent and persistent hostility.
Little things — like being asked to do school work — can send him into
a rage, leading to holes punched in walls, broken doors and violent
threats. (Marjorie asked that we not use her last name to protect her
family's privacy.)
The pandemic has shifted both school and her son's therapy sessions
online. But Marjorie says virtual therapy isn't working, because her
son doesn't focus well during sessions and tries to watch TV instead.
Lately, she has simply been cancelling them.
"I was paying for appointments and there was no therapeutic value," Marjorie says.
The issues cut across socioeconomic lines — affecting families with
private insurance, like Marjorie, as well as those who receive coverage
through Medicaid, a federal-state program that provides health
insurance to lower-income people and those with disabilities.
In the first few months of the pandemic, between March and May 2020,
children on Medicaid received 44% fewer outpatient mental health
services — including therapy and in-home support — compared to the same
time period in 2019, according to the Centers for Medicare &
Medicaid Services. That's even after accounting for increased
telehealth appointments.
When Teens Abuse Parents, Shame and Secrecy Make It Hard to Seek Help
The Centers for Disease Control and Prevention found that, from April
to October 2020, hospitals across the U.S. saw a 24% increase in the
proportion of mental health emergency visits for children ages 5 to 11,
and a 31% increase for children ages 12 to 17.
"Proportionally, the number of mental health visits is far more
significant than it has been in the past," says Duffy. "Not only are we
seeing more children, more children are being admitted [to in-patient
care]."
That's because there are fewer outpatient services now available to
children, she says, and because the children showing up at ERs "are
more serious."
This crisis is not only making life harder for these kids and their families, it's stressing the entire health care system.
Child and adolescent psychiatrists working in hospitals around the
country tell NPR that children are increasingly "boarding" in emergency
departments for days, waiting for in-patient admission to a regular
hospital or psychiatric hospital.
Before the pandemic, there was already a shortage of in-patient
psychiatric beds for children, says Dr. Christopher Bellonci, a child
psychiatrist at Judge Baker Children's Center in Boston. That shortage
has only gotten worse as hospitals cut capacity to allow for more
physical distancing within psychiatric units.
"The whole system is really grinding to a halt at a time when we have unprecedented need," Bellonci says.
'A signal that the rest of your system doesn't work'
Psychiatrists on the front lines share the frustrations of parents struggling to find help for their children.
Part of the problem is there have never been enough psychiatrists and
therapists trained to work with children, intervening in the early
stages of their illness, says Dr. Jennifer Havens, a child psychiatrist
at NYU.
"Tons of people showing up in emergency rooms in bad shape is a signal that the rest of your system doesn't work," she says.
While the pandemic has made life harder for Marjorie and her son in
Florida, she says it has always been difficult to find the support and
care he needs. Last fall, he needed a psychiatric evaluation, but the
nearest specialist who would accept her commercial insurance was 100
miles away, in Alabama.
"Even when you have the money or you have the insurance, it is still a
travesty," Marjorie says. "You cannot get help for these kids."
Parents are frustrated, and so are psychiatrists on the front lines.
Dr. C.J. Glawe leads the psychiatric crisis department at Nationwide
Children's Hospital in Columbus, Ohio.
He says once a child is stabilized after a crisis, it can be hard to
explain to parents that they may not be able to find follow-up care
anywhere near their home.
"Especially when I can clearly tell you I know exactly what you need, I
just can't give it to you," Glawe says, "it's demoralizing."
When states and communities fail to provide children the services they
need to live at home, kids can deteriorate and even wind up in jail,
like Lindsey. At that point, Glawe says, the cost and level of care
required will be even higher, whether that's hospitalization or long
stays in residential treatment facilities.
That's exactly the scenario Sandra, Lindsey's mom, is hoping to avoid for her Princess.
"For me, as a nurse and as a provider, that will be the last thing for
my daughter," she says. "It's like [state and local leaders] leave it
to the school and the parent to deal with, and they don't care. And
that's the problem. It's sad because, if I'm not here..."
Her voice trails off a moment, tears welling.
"She didn't ask to have autism."
To help families like Sandra's and Marjorie's, advocates say all levels
of government need to invest in creating a mental health system that's
accessible to anyone who needs it.
But given that many states have seen their revenues drop due to the
pandemic, there's a concern services will instead get cut — at a time
when the need has never been greater.
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