Long waiting lists, long drives and costly care hinder many kids’ access to mental health care

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CNN
 — 

The pandemic has been tough, but the return to in-person schooling has also been emotionally difficult for Mary Norris’ 12-year-old daughter.

Norris says her daughter was bullied relentlessly at the school she attended last year in Fresno, California, near where her father lives. So she transferred to a school in Madera, where her mother lives. This year is going better, but Norris says her daughter is still struggling emotionally.

She recently got a call from a school staff member who said her daughter had written something disturbing in her journal.

“She wrote in her book that she wishes that she were dead, and she wanted to kill herself. And my daughter’s always a very happy, really smiley kid,” Norris said.

Norris is one of more than 2,000 adults surveyed this summer by CNN and the Kaiser Family Foundation about mental health issues in America. The nationally representative sample included more than 500 parents.

Nearly half of those parents, 47%, say the pandemic has negatively affected their kids’ mental health, with 17% saying it had a major negative impact.

More than 8 out of 10 parents said they’re at least somewhat worried about depression, anxiety, alcohol and drug use negatively affecting the life of US teens, while roughly three-quarters said they were worried about self-harm or pandemic-related loneliness and isolation.

More than 4 in 10 said they were very worried about alcohol and drug use, anxiety and depression affecting teens. Lower-income parents – those making less than $40,000 a year – were more likely than those in higher-income households to say they’re very worried about self-harm, eating disorders, depression and alcohol and drug use.

According to the survey, more than half of Americans (55%) think most children and teenagers in the US aren’t able to get the mental health services they need.

Norris was one of several parents who answered that they weren’t able to get mental health services for their children because they were unable to find a provider.

She estimates that she’s called more than 20 therapists in Madera and Fresno, looking for someone who can see her daughter outside of school. Her daughter is covered by insurance, but Norris can’t find anyone willing to take it.

Paying out of pocket for care is not an option: “Unfortunately, my husband and I are both on Social Security because we’re both disabled. So our funds are completely limited. There’s no way I can afford to pay $120 an hour,” she said.

Norris’ situation is disturbingly common. The American Psychological Association estimates that half of children in the United States who have a mental health disorder do not receive the treatment they need, a circumstance that experts say only gotten worse during the pandemic.

According to the latest work force estimates from the association, which were published in 2020, there are roughly five child or adolescent psychologists for every 100,000 people under the age of 18 across the country.

That rough average obscures huge disparities in access. Mental health providers who specialize in care for kids are concentrated in urban areas but missing from rural communities. A large majority of counties in the US – 80% – have no child or adolescent psychologists at all, according to the association.

Other types of mental health professionals also treat children, such as licensed clinical social workers and school counselors, but they are also in short supply.

Eric Sparks, assistant executive director of the American School Counselors Association, says his group doesn’t have hard numbers on the shortage, but “we are hearing it loud and clear from school districts and state departments of education.”

A 2016 report from the federal Health Resources Services Administration – the most recent available – projected work force shortages of nearly 50,000 jobs across the spectrum of five mental health professions by 2025, and that was assuming no increase in demand.

Many experts feel that this scarcity has been accelerated and deepened by the stresses of the pandemic.

Karen Stamm has been leading the American Psychological Association’s efforts to survey psychologists who treat children, and she says the latest findings, from September 2021, showed that child psychologists were getting more patient referrals and had fewer cancellations or no-shows than before the pandemic.

“One statistic I found particularly staggering is that 65% of respondents in September of 2021 had no capacity for new patients,” she said.

Mary Alvord, a psychologist, runs a large practice of 19 mental health providers outside Washington, DC, and says her practice is mostly focused on children and teens.

“We’ve always had a waitlist, but not like now,” Alvord said. “We’re telling people five to six months, and it’s killing me.”

Her practice has started more therapy groups to try to treat as many kids as possible, but even with these groups, they are swamped. None of the therapists in her practice takes insurance, and that’s a situation that she knows widens disparities: Families who can’t afford mental health services see their children struggle and fall behind in school, leading to less economic opportunity and a continued ability not to be able to get their mental health needs addressed as adults.

Alvord has a full-time staffer who returns every call, and she says she freely refers to other area providers in an effort to help.

“The problem is, everybody else is booked, too,” she said.

In 2016, Alvord started a nonprofit organization called Resilience Across Borders that makes teacher training videos to try to help increase the reach of these services. The videos explain how to teach kids things like self-regulation and conversational skills – topics chosen based on her surveys of teachers during the pandemic and what they thought would be most helpful for their students.

Other organizations are also trying to get creative to reach underserved children.

One, TeamUp for Children, has placed full-time mental health providers in seven federally qualified health centers around the Boston area. These clinics provide outpatient primary care, regardless of a person’s ability to pay.

With this system, a primary care clinician may pick up on an emerging emotional concern at an annual well child visit – for example, a teenager reporting trouble sleeping because of anxiety. That clinician would then do a “warm handoff,” having a mental health professional come see the young person at the same visit to address the concern. A team of community health workers – volunteers – can follow up with the family after they return home to see how they’re doing.

“I think we really have focused a lot on making sure that there’s prompt access and that the care that they are receiving is as comprehensive as we’re able to provide,” said Anita Morris, the project director for TeamUp.

She says this model – integrating mental health services into primary care – is being copied to varying degrees in pilot projects across the country.

Mary Norris’ daughter is getting some support at school. She sees a counselor for group therapy sessions twice a week, but the sessions will end after six weeks. Norris says she’s not sure what the family will do after that.

A friend who is a licensed therapist has offered to see her daughter, but she’s an hour away. Norris says the cost of gas alone will force some hard choices.

“I’m going to have to pay for it with either letting bills go or having less food. Something’s got to give in order to make that happen,” Norris said. “Her mental well-being is more valuable than any other bill or any type of food I could ever want to eat.”

Jenny Walker and her husband feel the same way. Walker is an instructional coach – a professional who works with teachers to improve the quality of the lessons – at a school in Traverse City, Michigan. She says she sees children’s mental health struggles firsthand. Her family has them, too.

Walker also responded to the CNN and KFF survey, saying that she had also struggled to find a provider.

Her youngest son has obsessive-compulsive disorder. Her oldest has mild autism and ADHD. When her kids needed to see a child psychiatrist, there were only two in town who could treat them. One had a waiting list that was more than six months long, and the other didn’t take insurance.

“We ended up traveling 2½ hours to Grand Rapids to take our children to a place that did accept insurance,” she said.

Her sons were diagnosed before Covid-19 hit, she said, but the pandemic made everything worse. One of them rode in a car just fine pre-pandemic, but now he gets carsick and vomits on nearly every trip.

“That was not there at all before the pandemic,” Walker said.

She says he also hated online learning and developed new compulsive behaviors sitting in front of a computer all day.

The family eventually transferred to the psychiatrist in town who doesn’t take insurance. They use money from a health savings account to pay for it.

“Our savings account is our HSA account, which is what pays for my kids to get therapy. We dump as much money as we can into that,” she said.

But the family makes sacrifices to do that. “My husband drives a beat-up old Jeep that he wrenches on to keep going because we can’t afford to buy another vehicle if we’re going to pay out-of-pocket for these services.” They can’t afford to fix up their house or take family vacations.

But they feel lucky too, Walker says, because so many of the families she works with don’t have these options. Like Norris’ daughter, some get some help at school, but they may not get the full suite of services they need.

Walker says she sees the results of lack of access to these services at school.

“Unfortunately, what happens to those kids, a lot of times what we see is, it impacts their ability to learn in the classroom,” she said. They’re anxious, preoccupied, depressed or worried, and they can’t focus on their schoolwork – ultimately affecting the level of education they get and possibly their job prospects, too.

“And they kind of fall between the cracks,” Walker said. “So maybe they graduate, maybe they don’t, you know?”

The KFF CNN Mental Health Survey was conducted by SSRS from July 28 through August 9 among a random national sample of 2,004 adults. The poll includes 1,603 adults who were surveyed online after being recruited using probability-based methods and 401 adults who were selected by random digit dialing and reached on landlines or cellphones by a live interviewer. Results for the full sample have a margin of sampling error of plus or minus 3 percentage points.

The survey also includes an oversample of people with children under 18 for a total subsample of 509 parents. That subset was weighted to its proper share of the overall adult population of the United States. Results among parents have a margin of sampling error of plus or minus 6 percentage points.