Mental Health-Care Struggles: Families Across California Say Their Loved Ones Aren’t Getting the Treatment They Need

Elizabeth Brown’s bedroom holds a trove of evidence of her fight to save herself.

Preserved among Twilight novels, posters of Korean pop singers and cameras she used for her budding journalism career are clues about the Santa Rosa teenager’s agonizing struggle with the mental illness that claimed her life last year.

Next to her bed sits the lavender candle she lit to soothe herself. On her desk are the bunny slippers she wore when she was too depressed and anxious to leave the house. Taped to the wall are two plastic hospital bracelets from separate psychiatric admissions in 2017.

Underneath them hang four sticky notes, on which she had printed:

“channel all the anger, sadness, hurt into this one thing”

“you can have control”

“you can be beautiful”

“this pain is good.”

The cutting, the suffocating despair, the suicidal thoughts—those details live in the journal she hid behind a password on her laptop.

“She really tried hard,” says her mother, Seong Brown. “She believed in the medical system to help her.

“But they failed at every turn.”

Around California, people with mental illness—and their family members—talk about pleading with insurance providers for treatment.

Their stories share an underlying premise: Despite policy advances in the last two decades intended to compel insurers to provide equivalent levels of care for physical and mental illnesses, the reality on the ground still looks very different.

A poll released in January by the California Health Care Foundation and the Kaiser Family Foundation found that more than half of those surveyed thought their communities lacked adequate mental-health-care providers, and that most people with mental health conditions are unable to get needed services.

The state Department of Managed Health Care has cited health plans dozens of times in the past decade—penalizing them millions of dollars—for mental-health-related violations.

And earlier this month, a federal judge in Northern California ruled that United Behavioral Healthcare had wrongly restricted treatment for patients with mental-health and substance-abuse disorders in order to cut costs, in violation of federal law.

Not all problems with access to mental health care are illegal, but some almost certainly are, said David Lloyd, policy adviser at The Kennedy Forum, a nonprofit mental health advocacy organization founded by former congressman Patrick Kennedy.

“There’s a lot of evidence that discrimination by plans is happening,” he said.

Experts say mental health has been underfunded historically, in part because of prejudice against people with mental illness and substance abuse disorders.

California enacted a law requiring health plans to provide coverage for the diagnosis and treatment of severe mental illnesses in 1999.

A decade later, in a major victory for mental-health advocates, the state passed a law requiring health plans that offered mental health coverage to provide the same level of care they gave on the medical/surgical side. The law was strengthened again in 2010 when the Affordable Care Act listed mental health as an essential benefit that insurers were required to provide.

Insurers say they’re doing their best to comply with these laws but face a shortage of mental-health providers. Plans are working closely with state regulators and using a variety of methods, including virtual appointments, to meet these “serious challenges,” said Mary Ellen Grant, spokeswoman for the California Association of Health Plans, a trade group that represents insurers.

Most plans no longer limit the number of visits to a mental-health provider, nor do they charge higher co-pays or deductibles. But that hasn’t made access to mental and physical health care equivalent, said Lloyd of The Kennedy Forum.

The primary challenges for patients now exist in areas harder to track and quantify, including pre-authorization requirements and determinations of what is “medically necessary,” he said.

Parity laws are often so complex that it can be hard for people to know whether the barriers they face are actually illegal or just feel unfair, said Jennifer Mathis, policy director at the Bazelon Center for Mental Health Law in Washington, D.C.

“Most people aren’t able to figure this out,” Mathis said.

All many people know is that their loved one desperately needs help—and isn’t getting it.

In early January 2019, on the first anniversary of the day that Elizabeth Brown took the action that eventually ended her life, her parents, Seong and David, sat at the kitchen table in the immaculate Santa Rosa home that Seong, an architect, designed.

Seong retrieved an email from her husband’s colleague detailing cancer treatment his wife received from Kaiser Permanente. While Elizabeth descended into mental illness, their friend’s wife was treated by a team of oncologists, nurses, counselors, social workers and outside specialists.

“This is what she got,” Seong said. “And she’s still here.”

Citing federal privacy laws, Kaiser declined to comment on Elizabeth’s care. In a written statement, the company said, “This is a heartbreaking story, and our condolences go out to the Brown Family and her loved ones. While we can’t speak to any individual case out of respect for the privacy of those involved, the loss of any person greatly saddens every physician, therapist and nurse involved in that patient’s care. We review each case extensively and when opportunities to improve are discovered, we share that knowledge with our care teams.”

Elizabeth was a top student, her parents said. She earned a black belt in karate, played piano and was a violinist in the San Francisco Symphony Youth Orchestra.

After sophomore year, she applied to Bard College at Simon’s Rock in Massachusetts and started there before her 16th birthday. She made the dean’s list.

She also started having panic attacks. In May 2016, after her second year at Bard, she asked to see a therapist.

“Something’s not right, Mom,” Seong said she told her.

A few days later, Elizabeth first met with a Kaiser psychologist in Santa Rosa, beginning a treatment odyssey chronicled in 3,000 pages of medical records provided by her parents. The psychologist described “depression, self-criticism and self-destructive behaviors,” suggesting a self-forgiveness audio program and discussing cognitive behavioral therapy strategies.

As the months passed, Seong and David Brown grew increasingly concerned. Their daughter would head off to college, only to land in a hospital or threaten to kill herself and return home to California.

The family was dissatisfied with the frequency of sessions available through Kaiser. They were referred to an outside contractor, records show, but grew frustrated waiting to hear back. They eventually began paying $160 a session so she could see an outside therapist once or twice a week.

On Jan. 18, 2017, records show, Elizabeth tore up her parents’ house, searching for pills to swallow to kill herself. She found herself holding a kitchen knife and, frightened, called police. They took her to the hospital. Two days later, she was screened for an intensive outpatient treatment program offered through Kaiser.

“Patient’s mother is very worried that Patient will kill herself and requested a higher level of care,” the provider Elizabeth met with wrote in her notes.

Elizabeth agreed to try the Kaiser program—group therapy a few hours a day, several times a week, for two weeks. She was taking several medications, but they didn’t seem to be working, her parents said.

A letter she wrote herself during that time offers a window into her mindset.

“The depression drops you into a deep pit, leaving you to claw at the edges in an attempt to pull yourself out,” she wrote. “But there are people, resources, pieces of hope that will drop you a ladder—I promise. Even though you scream, and it seems like no one hears you, you will learn to help yourself. … You can rely on yourself; you are your own saving grace. Because in the end, you won’t be saved by IOP or medications or therapy—you will be saved by you.”

Around that time, records show, her Kaiser psychiatrist diagnosed her with bipolar disorder. Over the next few months, he changed her medications regularly and offered words of encouragement via email.

But a few weeks later, she was struggling again.

In 2013, the state Department of Managed Health Care levied a $4 million fine—one of the largest in its history—against Kaiser for deficiencies in providing timely access to mental health care and for violations of state parity law related to mental health education materials.

In an interview, Department Director Shelley Rouillard said Kaiser “actually is doing very well” at meeting the settlement agreement’s benchmarks.

In December, Democratic state Sen. Jim Beall of San Jose introduced legislation to require plans to report to the state annually on parity compliance—and for the state to make those reports accessible to the public.

That same month, Kaiser mental-health workers went on strike for five days to protest long patient wait times. Striking providers described not using the restroom all day and working through lunch, afraid that any call they don’t answer will leave a patient to suffer.

“The HMO is not going to go to oncology and say, ‘Our next available opening is in six weeks, so that’s what’s available,” said Kenneth Rogers, a psychologist with Kaiser in Elk Grove who serves as a shop steward for the union.

People on both sides of the debate agree that mental health workforce shortages are a big piece of the problem.

Kaiser has hired 30 percent more therapists since 2015, and pays the state’s highest rates, said Dr. Linda Kim, chair of regional mental health and addiction medicine and recovery services for Kaiser Northern California.

“I truly believe no other organization is doing more than what we are doing, in terms of aggressively hiring and in terms of truly innovating and finding new models of care that are evidence-based,” she said.

Professional associations representing psychiatrists and social workers say they often don’t want to work with insurers at all, citing low reimbursements and onerous administrative burdens.

One study found that only 55 percent of psychiatrists accept insurance, compared to an average for all health care professionals of 89 percent.

Sheree Lowe, vice president of behavioral health for the California Hospital Association, said health plans often require reauthorization every five days for hospitalized patients receiving mental-health or substance-abuse treatment—even for evidence-based care that routinely takes much longer. In some cases, clinicians have to wait up to two hours on hold in order to get that authorization, she said.

“That doesn’t happen if you go in with a fractured hip or with pneumonia,” she said.

Elizabeth returned to college in Massachusetts in the fall of 2017. She was quickly hospitalized twice. Doctors there diagnosed her with borderline personality disorder, her parents said, which was subsequently added to her Kaiser medical record.

That October, as the deadly Tubbs Fire moved closer to the hills around the home Elizabeth’s mother had designed, she hosed down her roof and bargained with God: “Take my house. Bring my child back.”

The house was spared. Elizabeth got sicker. Desperate, her parents made plans to send her to a residential treatment program in January 2018. It would cost $45,000 out-of-pocket.

On Dec. 4, 2017, Elizabeth emailed her Kaiser psychiatrist. “There is a lot to cover since we last met,” she said.

“It’s a 30 min visit to remind you and my part at this time is to refill your meds in the transition to your more intensive treatment,” he responded, according to Elizabeth’s medical record.

That afternoon, Seong sent the psychiatrist an email: “This is very critical and important for Elizabeth’s well-being because of her acute symptoms. She will be home more than a month and she needs an intensive outpatient therapy that is more than once a week.”

He responded that he understood, and that Elizabeth could return to the Intensive Outpatient Program or try to see a new therapist through an outside contractor. “That is the options I have available,” he wrote.

Seong developed a protocol when she was away from Elizabeth. She’d check in via text. If no response came within 15 minutes, she would call twice. If there was no answer, she’d race home.

On Jan. 10, 2018, Seong felt hopeful. Elizabeth texted that she was drinking coffee and reading a book. They made plans to buy new glasses frames after Seong came home from work.

In between texts to her mother, her parents said, Elizabeth also sent one to a friend. Its message, in essence: Send the police to collect my body. I don’t want my parents to find me.

This is an abridged version of the full story, which is available here at CALmatters.org—a nonprofit, nonpartisan media venture explaining California’s policies and politics. The coverage is funded by a grant from the California Health Care Foundation. Consumers experiencing access issues, or other issues with their health plans, can reach the state’s Department of Managed Health Care Help Center at 1-888-466-2219 or www.HealthHelp.ca.gov. If you or someone you know is having thoughts of suicide, there is help available. Call the National Suicide Prevention Lifeline 1-800-273-8255 (TALK) for resources and support.