From a New York Times guest essay by Benedict Carey headlined “I Answer the Phone at a Mental Health Hotline. Here’s What I’ve Learned.”
“Oh my, you picked up the phone.”
The caller sounded genuinely surprised and held her breath for a moment before telling her story. For more than a year, she and her husband had been largely trapped in their home by their 25-year-old son, who suffered from psychotic episodes. He refused any treatment, he had been making threats, and most nights he holed up in his room doing drugs while his parents tried to sleep behind their double-locked bedroom door.
“Is there someone who can come out to help us?” she said. “I mean, what do we do?”
I didn’t have a quick answer. It was my first call at a brand-new volunteer job.
When a family is upended by a suicidal son, a bulimic daughter, addiction or psychosis, it’s a rare person who knows whom to call for help or even how to ask. Try searching online, and you’ll no doubt find an assortment of out-of-date directories, random advice and dicey-looking services that may or may not provide what’s advertised.
“It’s like dealing with the cable company while your son is trying to kill himself,” a friend who has been through such an ordeal three times said to me.
For almost 20 years, I wrote about mental health for The New York Times and, before that, for The Los Angeles Times. In those jobs, I would have been obligated to quote top experts and scare up data for a story on the number of people swimming in this dark sea. Yet I had my own qualitative data, a career’s worth: I fielded queries from readers asking for guidance, advice, referrals or just five minutes to talk. And these were often educated, affluent people: “We’ve been up and down Park Avenue, and my son is just getting worse. Help!” one reader pleaded in an email to me.
Here is the data point that matters: Hundreds of thousands of families go through this every year, without someone to talk to. They’re on their own.
But here is another data point that also matters, especially to me and my colleagues fielding calls at a new mental health navigation service in Asheville, N.C.: an estimated 10 to 15 percent of people calm down after a 20-minute conversation, knowing they can call back and that we can find them help quickly. They might say, “Thank you. I think I’ll be OK. At least now I know I can call somebody.”
Any real and durable improvement in mental health care in this country must come from the ground up, driven by educated consumers demanding both access and quality. Whoever figures out how to harness that power will do more for families in trouble than any politician or scientist.
I left my New York Times job to try to address this access issue directly. The timing seemed right. Twelve months of Covid had strained mental health services, especially for young people, and last year the government rolled out the 988 mental health crisis line to replace the National Suicide Prevention Lifeline. Those two developments made many headlines and helped expose not only gaps in service but also profound difficulties in access. Even if there is an excellent clinic or service a mile away, how do you find it? How do you know it really is the right one for your son or daughter or brother? Does it take your insurance?
Nobody seems to know anything, and someone should. I decided to join a new nonprofit organization serving North Carolina, the Mental Health GPS, which provides what it calls navigation services. The idea is simple. You call the GPS, and we listen to the whole story. We collect basic data, like age, location and insurance coverage, if any. Then we search a bank of up-to-date databases and give you multiple appropriate, vetted options — therapists, clinics, detox programs, peer support or whatever is needed. If those contacts don’t pan out for some reason, you call back and get more. The service is confidential and independent.
The role of mental health navigator — of providing humane, knowledgeable guidance — has been around for decades, filled by the country’s therapeutic consultants, with fees from $100 to $350 an hour or up to at least $5,000 per quarter. In recent years, nonprofits like the one where I volunteer have emerged to provide a similar, less concierge-like service at no cost to anyone in need.
Our experience thus far has made it clear that any navigation service that scales up must have three components. One is a sophisticated tech back end, which even at a small operation like the GPS means search engine optimization to increase its visibility on the web and data-analysis algorithms. All of the basic data from our calls is stored and anonymized to guide us in analyzing trends and updating information on the services in the databases.
The second is databases that cover the full range of services and support. In contrast to many other directories, ours include many low-cost, nonclinical supports, like warm lines that offer callers emotional support from volunteers who are in recovery themselves and information on local AA meetings.
Finally, any decent navigation service should be about talking to people at a critical moment, exactly when they have summoned the courage to ask for help. It means not just a sympathetic ear but also informed context. “What’s with this diabolical behavior therapy, anyway? I don’t like the sound of it,” one caller told me. (I replied that it was called dialectical behavior therapy and explained what it was.)
At the end of the day and the beginning of the next, this is human work. No bot can do all this adequately and sensitively, and no A.I. program can ever simulate the experience of people who have been through the fire shower of a mental health or substance use problem. These people, known in mental health circles as peers, understand the system from the inside and the frustration of trying to find decent care. GPS call takers are mostly peers, people solidly in recovery who, in effect, are taking calls from versions of their former selves.
Over its first full year of operation, the GPS received more than 1,000 calls, some 800 of which were legitimate. (All call-in lines get some prank calls, bot calls and wrong numbers.) It’s a small sample thus far, from just one state. But these 800 calls begin to tell a story or at least provide a slightly blurred X-ray of the nation’s behavioral health needs in real time, day to day.
For example, over 95 percent of callers find us by searching on their phones. A third of callers, according to my count, are under the age of 25, mostly people who are distraught over school, a breakup, work or a family conflict. They are upset or desperate enough to call a perfect stranger, largely because they can’t or won’t confide in anyone they know. “It’s my boyfriend and my mother — that’s the problem,” one youngster whispered to me on a call. She was standing in her backyard in a town near Charlotte.
I listened and promised to send her some local therapists’ contacts, but she interrupted me. “No, no, you don’t understand. I need therapy now, from you, and quickly, before my mom gets home.”
Many young people need help and want it on demand, as if from a free therapy app. (Those exist, but good luck finding one that’s effective and responsive to the nuances of an individual’s mental distress.)
Nearly 40 percent of the callers are Black, for reasons we can’t determine, compared with the state’s Black population share of just over 20 percent. Just over 50 percent of callers have private insurance, 20 percent have Medicaid, and 28 percent have no insurance. For this last group, there are very limited options for care, but they exist: Federally qualified health centers take everyone, and so do most peer support organizations.
The call from the woman with a psychotic son — my very first call — made me hold my breath, too. This was live, and I was no longer sitting on high, as the big-media expert. I was just the guy on the other end of the phone. I did some digging and found a local mobile crisis team trained in managing mental health emergencies. I also determined that the young man possibly qualified for longer-term residential care, if he could be persuaded to go. Two options only but two more than she had before.
The American mental health system is routinely described as broken and bewildering, and experts are good at making pronouncements about needed reforms: Building more and better-quality mental health hospitals. Requiring expanded insurance reimbursement. Improving youth services, especially at schools and universities, to catch first episodes of depression, severe anxiety and psychosis and treat them early. And, as always, increasing budgets, up and down the system.
These are all fine ideas. But for now, let’s at least give people someone knowledgeable to talk to.
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