Nowhere to turn for kids in crisis
Kevin Forestieri produced this as part of a two-part 2018 California Fellowship project.
Other stories in this series include:
Photo by Natalia Nazarova
For four years, Tiffany Maciel knew her son needed help.
Red flags signaling an anxiety disorder began cropping up at the end of preschool, made more challenging by a subsequent autism diagnosis. She left her job and turned into a full-time advocate for her son, trying to find the psychiatric help and therapy he needed to cope with a problem that got worse with each passing year.
Despite having the willpower, the insurance and the resources to help her child, it took four years and a stroke of luck to find the right kind of care. Four years of intensifying problems and deterioration that came to a head in third grade, when her son climbed onto a roof and said he wanted to die.
"I knew what was happening, but I couldn't stop the train wreck from coming," Maciel said. "From first to third grade it was just the darkest time. It just took everything to deal with it. He's in sixth grade now and we're 'okay,' but it's not perfect. He's still not back in school."
Maciel is not alone. Families seeking mental health support for children are beset on all sides by challenges, whether it's difficulty finding the right kind of help or finding out there is no help within 50 miles. Parents who are uninsured, on Medi-Cal or have commercial insurance face unique problems getting appropriate care at a price they can afford, and must rely on a shallow pool of local services that threatens to shrink further in the coming years.
Mental health experts, advocates, school leaders and public officials lament that Santa Clara County, a wealthy region known for thinking outside the box, falls short of meeting the mental health needs of children and teens at a time when they need it most, with deep gaps in services ranging from education and early intervention to emergency psychiatric care. Even with new programs in the pipeline, it may take decades to fix what many describe as a fragmented and chronically underfunded system, with quality and access that differs wildly from one community to another.
And while some say that Silicon Valley's bleak situation differs little from that of the rest of California and the United States -- the cost of a broken system that undervalues mental health -- others say that public agencies and major hospitals have a moral responsibility to step up and provide services for families that desperately need them.
A rising demand
For hundreds of teens in Mountain View, their first exposure to mental health care comes not from a hospital or a clinic, but an anonymous message in a box. Friends, family and school staff at both Mountain View and Los Altos high schools are encouraged, if they think someone is struggling with problems like anxiety and depression, to jot down that person's name and drop it off in designated referral boxes.
Each box gets checked multiple times per day, and referred students are called in and asked if they need help. A March report from the district found that just under half of the students began seeing an on-campus therapist or were referred to outside counseling services as a result, while many more relied on interim check-ins with the district's support team until an outside therapist could be found.
District officials have seen the reliance on this quaint system and its small team of in-house mental health counselors explode in recent years. About five years ago the number of annual referrals tallied up to about 200. By last year, it had quadrupled to more than 800.
The reality is that the need has always been there, but a reduction in stigma surrounding mental health and a growing willingness to address a long-neglected gap in health care is creating demand that exceeds capacity. National studies have found that about one in five children have a mental, emotional or behavioral disorder, but only about 20 percent of those children actually receive care from a mental health provider. This leaves tens of thousands of children and adolescents in Santa Clara County without treatment. When they do get, it is frequently delayed by years or even decades.
Peeling away at that disparity is absolutely the goal, said Susan Flatmo, the clinical services coordinator at the Mountain View-Los Altos High School District, but she admitted that the district faces limits on its open-door referral approach.
"If there was no stigma, if every student was screened, the truth is we wouldn't be able to address every student's needs. That's just a given," Flatmo said. "We need to work on that, because we are working on erasing stigma and our kids do need care."
Clinics outside of the school environment are similarly inundated with high demand and not enough space, staffing or funding. Bay Area Clinical Associates (BACA) provides outpatient psychiatric and psychological services to children and young adults throughout the Bay Area, including San Jose and Menlo Park, and has the rare and coveted advantage of accepting private insurance plans from five different companies.
Of the company's 1,458 clients, nearly half are between the ages of 13 and 18, the vast majority of whom were diagnosed with anxiety (45 percent), depression (46 percent), a learning disorder (20 percent) or a behavioral disorder or family issue (20 percent).
Child psychiatrist and BACA co-founder Tom Tarshis told the Voice that the clinic doesn't maintain a waitlist anymore because so many families would queue up so quickly, and that it didn't feel right to dangle hope in front of families for months. He estimated that for every 1,500 requests for service BACA receives, about 350 families actually admitted for services, and the other 75 percent are effectively getting turned away.
Scaling up isn't easy either, and for the classic reasons that Bay Area residents are all too familiar with. The cost of living makes recruiting clinical staff difficult, facility space is limited and landlords are often reticent to sign a lease deal for behavioral health services due to the pervasive stigma of mental health illness. BACA is hiring new therapists, but they'll likely have full case loads and not be able to accept new families for a few months, said Joel Oberstar, co-founder of BACA.
Part of the unmet need is simply that mental health care takes a long time, Oberstar said, and teasing out things like deep-seated trauma doesn't happen overnight. The fix doesn't come as quickly as it does with physical problems, and it's crucial to be able to provide long-term care.
"Very few of the cases resolve quickly, most of them have been building for a while," he said. "It can take weeks, months, even years to get through their episode of care. It's not a high-volume proposition."
A false promise
In the years before her son's mental health crisis, Maciel sought to leave no stone unturned. She fought to get mental health services for her son through schools -- public and private, from San Jose to Palo Alto -- tried (and failed) to get long-term care from Stanford Children's Hospital after a referral to the university's Anxiety Disorders Clinic, and tangled with what she described as a useless directory of resources provided by her insurance company.
Maciel said Blue Shield's mental health service administrator, Magellan Behavioral Health, provided her a list of care providers in her area, giving her the false hope that she had a menu of options. The problem is that these lists are notorious for being nearly useless. After crossing off services that no longer exist, can't be reached or don't provide appropriate services, families are left with few or no options.
"Most of them did not serve children," she said. "Many of the lines were disconnected, and when they weren't they didn't take insurance. It was a stupid list."
That isn't exclusive to Blue Shield. Tarshis of BACA said anyone can put in a zip code and get a list of 60 to 70 clinics and private practices within a 20-mile radius and experience the same disappointment on their own, regardless of the insurance provider or the type of care.
"When you go down the list the vast majority of them are either not active or don't really see those particular patients. And the five people that are? Their next opening is in six months, or maybe isn't the quality of provider that you want," Tarshis said.
Tarshis said the status quo -- too few providers and so much demand -- leaves little reason for psychiatrists and psychologists to take insurance when they can successfully run a cash-only business. Anyone who can't afford $300 or more per visit faces fewer options.
It's tempting for psychiatrists and psychologists to avoid the headache, Tarshis said. Brokering reimbursement deals for mental health care with insurance companies, as well as Medi-Cal contracts with counties to serve lower-income families, is an uphill battle compared to primary medical care. It can be tough to get the companies on the phone, he said, and it can be difficult to negotiate reimbursement rates for services like Intensive Outpatient Programs, which provide hours of daily support as a valuable step-down from partial hospitalization and residential treatment.
This dynamic adds to an even larger problem, which is the shortage of mental health care workers in the Bay Area and throughout the country. Last year, Santa Clara County cited data showing there are 26.7 psychiatrists per 100,000 people in the county, compared to 30.8 in San Mateo and 76.6 in San Francisco counties. Those figures worsen for psychiatrists licensed to treat kids and teens, and the American Academy of Child and Adolescent Psychiatry estimates that the county would need double the number of child and adolescent psychiatrists in order to have a "sufficient" supply for the county's population. San Francisco is the only county to reach that benchmark in the state.
A recent study done by researchers at the University of California at San Francisco found that while insurance coverage for mental health care has vastly improved over the last two decades, it needs to come with a commensurate boost in behavioral health workers. That's not happening: The number of psychiatrists in the state is projected to decrease by 34 percent between 2016 and 2028.
The study found that psychiatrists are disproportionately male, white and nearing retirement. Forty-five percent are over the age of 60, and psychologists in the state aren't far behind, at 37 percent.
Some agencies, notably Children's Health Council in Palo Alto, say Santa Clara County is overdue for a comprehensive navigation system for families who don't know where to go for mental health services. At a meeting with mental health leaders and advocates in May, health council Executive Director Rosalie Whitlock announced the nonprofit is seeking to create a comprehensive wayfinding system for care, which could cast a light on where critical services -- like child psychiatrists who accept insurance -- are most lacking.
Maciel said that during her time advocating for youth mental health care in the county, she's found that parents go looking for help and simply can't find it, and that there's an ugly tendency to blame parents for failing to address the high levels of stress, anxiety and chronic sadness and hopelessness that surveys show are affecting close to one-third of high school students.
"Looking at the suicide rates, both Morgan Hill and Palo Alto are high," she said. "If you listen to the reasoning for why it's happening in Palo Alto, they say the expectations are too high. And if you listen to the reasons for why it's happening in Morgan Hill, it's because they aren't educated and their expectations are too low.
"It's bad enough to not have preventative care or promote mental health wellness in schools. But when parents go looking for help, it's just not there."
A role for schools
Nineteen-year-old Robin Fox, a South County resident, has skipped party-filled college nights in favor of packed days starting before dawn. Commuting from a small corner of South San Jose where you can still find farmland and orchards, her schedule juggles Bikram yoga instruction, working at a detox center and earning a master's degree in psychology.
Since she was 13, Fox has been a relentless advocate for mental health and suicide prevention in any way she could find, volunteering for the American Federation for Suicide Prevention, leading school-based mental health awareness events and eventually finding a role helping people who are fighting drug and alcohol addiction.
Her current job at a six-bed luxury recovery center in Alum Rock is a little different from her last gig in Santa Cruz, where she provided counseling services for formerly incarcerated parolees seeking substance abuse treatment. It came with its fair share of challenges -- some of the people coming in had co-occuring mental health disorders including schizophrenia -- and it was purely voluntary, meaning patients were free to go and would drop treatment partway through.
"If someone came in I would do a urine test, and if they were positive for heroin or something I'd have to send them over to a detox center elsewhere and say 'Come back when you're all dried out,'" Fox recalled. "Nine times out of 10 you would never see them again."
Still, Fox said doing one-on-one and group therapy with parolees who took extraordinary steps to get help left an impression on her. Some of the men she treated took up her invitation to do yoga.
"Working with people trying to break the cycle of incarceration is the most beautiful experience I've ever had in my life," she said. "I think recovery and healing is possible for anyone, regardless of their background."
Despite the outgoing personality, Fox's journey through her teenage years was fraught with challenges, with a history of anxiety and depression that had a devastating effect and led to self-harm, suicidal ideation and eventually an attempt on her own life. She hung on using coping mechanisms of her own -- yoga became a huge part of her life -- before finally reaching a child psychiatrist through Kaiser. She made the call and set up the appointment herself. The conversation on the phone was pretty stilted, given Kaiser staff members were expecting a call from her mother.
From eighth grade to her junior year, Fox raised money for a nonprofit called "To Write Love On Her Arms," giving speeches during mental health week encouraging students to wear their hearts on their sleeves and open up about mental health. But years went by and no one seemed worried about her own well-being, or noticed she was covering up signs of self-harm with long sleeves and pants even on scorching summer days. She said the principal suggested to her that mental health rallies weren't necessary because any students going through serious depression and anxiety would be forthcoming and tell her directly.
"My experience in high school is nobody noticing that I was wearing long sleeves every day and that I was eating my lunch in the handicap stall of the bathroom every day. Nobody noticed I wasn't outside socializing," she said.
Undeterred, Fox worked with a group of 15 kids and made a poster with a list of important phone numbers and resources ranging from information to suicide hotlines and posted it on the wall of her high school.
"I got so much flak for that, but eventually I prevailed," she said. "I remember putting it up in the hallway as one of my proudest moments in high school because it was the first mental health resource we had."
School districts throughout Santa Clara County have taken on a growing role to directly care for teens and children struggling with anxiety, depression and other mental health issues. Many of these programs are adopted by individual districts, meaning the quality and extent of care varies from one region to another, and almost all of it is fueled by general fund dollars rather than any sort of mandate.
The Mountain View-Los Altos High School District lies in one of the wealthiest regions of the country and enjoys a healthy mix of philanthropic dollars, mental health partnerships and a general fund buoyed by strong property tax growth. It spends more than $1.3 million annually on a network of on-campus therapists and ongoing parent and student wellness events, all for a district of about 4,500 students. That translates to seven therapists -- five hired directly by the district -- and a half-day of support from a Stanford fellow in clinical psychiatry.
This team forms the backbone of clinical support to handle the torrent of anonymous referrals of students, and even then it can be challenging to resolve the increasing number of complex cases in a timely manner. The goal is to try to work with students in the short term, but some students simply aren't going to resolve what's bothering them in four to six sessions, said Flatmo, the district's clinical services coordinator.
"The services we provide have to be short-term so we can see as many students as possible, but we're not going to be clinically irresponsible," she said.
Some of school districts' responsibility to focus on student wellness and suicide prevention has been enshrined into state law. Earlier this year, Gov. Jerry Brown signed legislation requiring the California Department of Education to provide grants for suicide prevention training for all public middle and high schools, adding to laws already requiring districts to have suicide prevention policies on the books that includes awareness and prevention training for staff.
When asked about the role of schools in mental health, Fox emphatically supported a greater involvement that should have been there to support her during high school. Teachers have a strong relationship with students and came the closest, that she could remember, to finding out she wasn't okay. Teachers have a moral responsibility to support these students regardless of whether the school district wants to pay for it.
"People in education need to have training on mental health issues. It's the most prominent in ages 13 to 17, and if you're going to be a teacher with this age group you have a responsibility to educate yourself," she said. "It doesn't matter if you're great at geometry if you want to die."
Intervention when it matters
Building more robust mental health services in the schools also lends itself to teasing out and remedying mental health disorders early on, preventing struggling children and teens from the suffering and deterioration that comes with any untreated illness. Psychiatric studies estimate that close to half of all mental health conditions begin by the age of 14, rising to three-fourths by the age of 24.
Studies going back more than a decade have found youth and young adults ranging from 12 to 24 years of age represent the critical point for intervention, and that delays in care can be clearly connected to a host of problems ranging from poor school performance and substance abuse to violence and higher chance of landing in the juvenile justice system. Studies have reaffirmed since the early 1990s that an estimated 70 percent of youth in the U.S. juvenile justice system were diagnosed with at least one mental health disorder.
Programs aimed at getting children and young adults treatment could potentially reduce well-documented, significant delays between when first symptoms appear and when they finally see a doctor and begin treatment. A 2005 study in the Archives of General Psychiatry found that delays in what researchers call "treatment contact" typically range from six to eight years for mood disorders and nine to 23 years for anxiety disorders, with higher delays for males, minorities and lower-educated patients.
That delay period, the study concluded, is a pervasive aspect of the unmet mental health care needs in the U.S., and that something ought to be done to make sure youth are able to quickly get an appointment with a mental health care provider at its onset.
"Research consistently shows that a high proportion of people with prevalent mental disorders in the United States are untreated despite their disorders causing substantial distress and impairment, and despite effective treatments being available," the study states.
Efforts to address mental health at this critical age in the northern reaches of Santa Clara County include clinical and in-school services from nonprofits like Children's Health Council and the Community Health Awareness Council in Mountain View, as well as separate efforts from local school districts who have poured money into mental health initiatives. The Bay Area Clinical Associates, similarly, has tailored its services for children, teens and young adults, with 90 percent of its clientele below the age of 26, which Oberstar from BACA said was an important choice.
"Mental health illnesses start in youth, and there's a great potential to alleviate that suffering," he said.
Flatmo said she envisions MVLA's wellness program as a pyramid, where universal prevention and education sit along the bottom as the largest, most well-resourced portion. The next level, she said, should be targeted intervention like short-term counseling services and support groups, followed by intensive care for teens who need crisis intervention, outpatient care, case management and consistent one-on-one mental health therapy.
Given the intense need of students seeking services, the way the health care system is set up and the number of referrals for intervention, Flatmo said that pyramid is upside-down.
A struggle for low-income families
Theoretically, low-income families with children in Santa Clara County are afforded a comprehensive set of mental health services through the county's behavioral health system, with the state's Medi-Cal program picking up the costs. That suite of services includes everything from psychiatric care and psychological therapy, crisis residential treatment and inpatient psychiatric hospitalization.
But in many cases, these resources aren't reaching the youth who need it, with state data showing only a small portion of children and adolescents eligible for the services are receiving consistent mental health care.
The latest state data available shows that 187,624 people under the age of 21 are eligible for care through the county's "Specialty Mental Health Services," which are paid for through Medi-Cal but administered by individual counties. Of those children and young adults, only 10,608 -- about 5.7 percent -- had at least one appointment for mental health care in the 2015-16 year. Among patients who sought consistent mental services, measured roughly by children and youth with five or more visits in a single year, that rate drops to 4.5 percent.
Survey data collected by the California Health Interview Survey has consistently found between 18 to 23 percent of teens needed help with an emotional and mental health problem in any given year, indicating the majority aren't being reached by county services. This low "penetration rate," defined by the state, is even lower in California as a whole, with only 3.1 percent of Medi-Cal patients under 21 receiving consistent mental health services.
It's also an open question whether these services are equally available to all residents throughout the county, or if families far from in San Jose aren't getting the same access to care. A report released by Santa Clara County last year found that of the 1,806 residents who received mental health services in District 5, which encompasses North County and West Valley cities, around 60 percent had to travel to San Jose for treatment. Among those who were discharged, only 36 percent successfully finished treatment, which Santa Clara County Supervisor Joe Simitian said could be connected to the long travel times. Just under half of those patients were ages 17 or younger.
"Although northern Santa Clara County is often regarded as an affluent area, with high median incomes and comparably high housing costs, there remain residential pockets in the region that are also experiencing high levels of poverty, being subjected to crime, and have poor health outcomes," the report found.
Some inroads have been made to connect hard-to-reach North County families with mental health services. The nonprofit Community Health Awareness Council provides services at 34 schools in Sunnyvale, Mountain View and Los Altos and therapy at its El Camino clinic on a sliding scale. CHAC pours significant resources into helping lower-income and Latino families who are in these "pockets," silently struggling through mental, emotional and behavioral health challenges. Perhaps the most successful is the nonprofit's Latinx program, which provides hundreds of Spanish-speaking families with culturally sensitive psychotherapy, family counseling, parenting classes and support groups.
CHAC clinical supervisor Rebecca Jedel said a disproportionate amount of the nonprofit's staff time is devoted to making sure kids from the high-needs schools in the region get treatment, particularly Castro and Mistral elementary schools in Mountain View, where a majority of families speak Spanish in the home and whose children qualify for free and reduced-price meals at school. The patients who rely on the nonprofit aren't necessarily teens struggling with academic pressure, but families dealing with neglect, domestic violence, child abuse, divorce, financial stress and even homelessness.
Many of these families could benefit from Medi-Cal, but there's an unfamiliarity and uneasiness with government-run programs and a perception that the county-run system doesn't extend into the realm of mental health, said Elisabet Revilla, a clinical supervisor at CHAC who works in the Latinx program.
"When they have a problem, when they have difficulty communicating or they have PTSD, anxiety or depression -- they know about CHAC, through the schools and through word of mouth," Revilla said.
Latinx program director Camila Rodriguez, a marriage and family therapist, said the program has a waiting list, and that the past few years have been particularly rough on the families they serve. She said many of the families she works with are dealing with the constant fear of immigration enforcement and are always anticipating the next sweep by Immigrations and Customs Enforcement (ICE). The result, she said, is pervasive anxiety and trauma in the Latino community over the possibility that parents may be separated from their children.
Free services for many of these families may be available in San Jose, Rodriguez said, but that doesn't help when transportation time and work schedules make it too difficult to access. Rather than take referrals to San Jose when there are space constraints at CHAC, she said, many would rather wait for an opening in the Latinx program, regardless of how long it takes.
"I keep calling them and saying we don't have anybody to serve you and they say, 'Okay, I'll just stay on the waitlist,'" she said. "There's always a waiting list of 30 or more people, and those clients are not going anywhere else. I've asked them, 'Did you get services? Were you able to see someone?' and they didn't."
CHAC's program offers services on a sliding scale ranging from $20 to $130 based on a client's ability to pay -- with mostly philanthropic, private donations picking up the rest of the cost -- and many of the families seeking services simply don't have the means to pay for a private practice therapist. Many struggle to pay the lowest $20 fee, and others feel so crushed by the high cost of living that mental health and wellness is the last thing on their minds, Rodriguez said.
"That's a huge problem right now in Mountain View and Sunnyvale. You can't deal with anything when you don't have a roof over your head -- that's all you can worry about," she said.
[This story was originally published by the Mountain View Voice.]