Three Years after Newtown: Hope

Parents for Care dinner in Baltimore, with
the SuperMoms (and Dads) who advocate for their
children who have serious mental illness

Three years ago, when a mother, 20 first graders, 6 educators, and a young man with untreated mental illness died by gun violence in Newtown, Connecticut, I was on the phone with a social worker in Boise, Idaho. He wanted me to press charges for assault against my then 13-year-old son, who had threatened to kill himself a few days earlier. My back and ribs still ached, and my arms were covered with bruises and bite marks sustained when I tried to keep my son from bolting into oncoming traffic.

When I heard about Newtown Friday morning at work, I put my head on my desk and sobbed. My younger two children were still in elementary school, and I couldn’t even imagine how horrible it would be to lose them like that.

Except I could.

With Representative Tim Murphy

My third son was in an acute care psychiatric hospital--again. After years of trying to find help for him, we still didn't have answers.

But I knew two things for certain that morning. First, my son was not a bad kid. He was not a monster, or a psycho. He was a kind, sweet, sensitive boy who suffered immense pain and deserved help.

Second, I was not a bad mother.

That terrible morning in 2012, without knowing any details other than the age of the shooter and the fact that his mother--and 26 innocent people--were dead, I felt like I knew everything.

So I wrote, "I Am Adam Lanza's Mofher." And I thought I was the only mother in the entire world who could sympathize with Nancy Lanza.

It turns out I was far from alone. Mental illness touches us all in some fashion. According to the National Institute of Mental Health, one in five children will suffer a debilitating mental disorder before age 18.  Almost one in five adults will experience mental illness in any given year (excluding substance abuse disorders). l  And serious mental illness—schizophrenia, bipolar disorder, and major depression—affects 10 million adults, or 4% of our population.  These men and women are too often shunted into a nightmarish “revolving door” of prison and homelessness because we do not have the community or medical supports in place to provide them with life-saving treatment. 

A reading from my award-
winning book at StoryFort

Three years after Newtown, I was able to travel around the country and see what's working in mental health--and why we still have so far to go. If you want to learn more about ways you can help children and families like minhe, click on the links below to learn more about these organizations, and think about donating if you are able to do so.

In January, I made my first trip to Washington D.C. as a guest of the Treatment Advocacy Center to celebrate an advocacy award given to Representative Tim Murphy for his tireless efforts to reform the mental healthcare system at the national level. 

In February, I spoke at the Jewish Family and Children’s Services of Arizona annual luncheon in Phoenix, where I was able to learn about crisis wraparound services provided to children and families. 

In March, I won a 2015 “Books for a Better Life” award for “The Price of Silence” and I participated with my son in a StoryFort reading hosted by the Cabin in Boise. 

2015 APA
annual meeting in Toronto.

In April, I spoke at the North Dakota Juvenile Justice conference and also visited with several parents whose children were struggling with mental illness. I also spoke at the Showers of Hope luncheon to support the Lindner Center of Hope in Cincinnati, Ohio. The Lindner family has a legacy of philanthropy in their community; they are now contributing their resources to help fund a truly revolutionary center of excellence for mental healthcare treatment and research. I also was the keynote speaker for the Idaho Children’s Home Society, an organization that provides counseling to low income children and families in our Boise community. 

With Dr. Jeffrey Lieberman, author
of "Shrinks" (must-read!)

May was a busy month. I spoke at the Siouxland Mental Health Center annual conference and learned more about partnerships with mental health courts that reduced recidivism rates for people suffering from mental illness by more than 75%. That’s a huge savings, both in taxpayer dollars and in lives. I also co-presented a workshop at the American Psychiatric Association annual meeting in Toronto. The workshop was the brainchild of Mental Health America’s thoughtful Patrick Hendry. Every advocate should read his paper on meaningful dialogue. Finally, I gave the keynote speech for Thresholds in Chicago, where I was brought to tears by the life-changing work their staff has done as they intervene with at-risk youth and give them a chance at a bright future.

September took me to Miami, Florida, to present at the 8th annual Chair Summit, where I met psychiatric care providers from all over the Americas, including Dr. Jeffrey Lieberman and Dr. Paul Summergrad, and learned about cutting-edge new research and treatments—and enjoyed an authentic Cubano and the best ceviche I’ve ever had. When I returned, I attended my first NAMI-Boise chapter board meeting. The National Alliance on Mental Illness is one of the nation’s most prominent advocacy groups and provides free education classes for the community.

The Oklahoma City Memorial

In October, I spoke at my first non “mental health” conference. Leadership Oklahoma decided to focus their annual meeting on mental illness and its impact on the Oklahoma community. Sadly, less than a week later, a young woman with mental illness crashed into a crowd of people, killing four people. Cathy Costello, whose untreated son stabbed her husband Mark, Oklahoma’s well-respected labor commissioner, was in the audience.   

In November, I was able to meet several of my mom advocate heroes in person at the Johns Hopkins annual Schizophrenia summit. The presenters, top researchers in their field, took time to meet with us as parents and answer our questions at an event organized by the inimitable Laura Pogliano, founder of Parents for Care.  Laura’s son Zac, who suffered with schizophrenia, died tragically at the age of 23 earlier this year. 

And now, on December 14, I’m in San Diego, preparing to attend the International Bipolar Foundation board meeting. Our board members include Randi Silverman, whose poignant film, No Letting Go, tells the hopeful story of a teenager struggling with mental illness and his family, and Kevin Hines, who survived a suicide attempt from the Golden Gate Bridge and is now sharing his powerful story to help others. 

Messages in Dutch Bros coffee lids.

Last year, on the second anniversary of Newtown, I wrote on the Huffington Post that we were “Two Years to Nowhere.”  Today, I have more hope. But real change depends on each of us. As a society, we have an obligation to provide treatment to those who suffer. As individuals, we have an ethical duty to treat one another with respect and compassion.

We still have a long way to go, but it feels like we’re finally moving in the right direction. 

Two Years to Nowhere

Two Years After Newtown, Mental Health Still Matters, and Most People Still Don't Care

"On the first day of Christmas, my true love gave to me..."

This weekend, on the second anniversary of the Newtown shootings, I took my daughter to see her first performance of the Nutcracker. Unsure of the exact venue, we parked on the street and followed the hordes of blond girls dressed just like my daughter in velvet dresses with satin sashes. I have wanted to reenact this holiday tradition from my childhood with my own now 9-year old for many years. But this year was the first time we could actually go together. Two years ago, her brother was in an acute care psychiatric hospital, and I shared our painful story with the world. A year ago, she was with her father, who talked a judge into giving him full custody by arguing that the younger two children were not safe in a home with their brother. Mental illness affects more than  the individual: it affects the whole family.

This year, two years after Newtown, our family is stable, happy, spending the holiday season the way we imagine families in Hallmark cards spend it: decorating our tree, wrapping presents, drinking hot cocoa, and making up new lyrics to “The 12 Days of Christmas.” But we know how fragile, precious, and rare this gift of Christmas present is.

What changed for my family in the two years since Newtown? One word: treatment. Before Newtown, I was afraid to speak up and demand help for my son. After Newtown, in large part because I shared our family’s private tragedy, my son, unlike Adam Lanza, got the help he needed. A diagnosis of bipolar disorder does not “fix” all the challenges my son and our family still face: after years of maladaptive coping strategies, he—and we—are learning a new normal, where we ask for help when we need it. And we still struggle, as many families do, with access to care. But we have what so many other families still lack: hope.

In the immediate aftermath of Newtown, I felt tremendous optimism that people finally cared and understood about mental illness. Sadly, I was wrong. The simple changes—earlier interventions, more access to care, more support in the school system, day treatment crisis centers—have not materialized. We continue to blame parents—and children—for behavioral symptoms of brain disorders. Worst of all, we continue to sentence people to jail or relegate them to homelessness because of their illness.

Along with other mental health advocates, I’ve watched the responses to the tragic deaths of Michael Brown and Eric Garner with considerable sympathy. People with mental illness, no matter what their race, also face challenges with law enforcement officers, especially in cities where police lack Crisis Intervention Team training. Here is a partial list of people with documented mental illness who were killed by on-duty police officers in 2014:

Here's an idea! We could send an ambulance on mental
health calls, like Norway does. 

1. Keith Vidal had documented schizophrenia. When his family called 9-1-1 for help with a behavioral episode, the police shot and killed the 90-pound 18 year old. 
2. Parminder Singh Shergill, a U.S. Army veteran who suffered from PTSD, was shot and killed by police after his mother called and asked for medical help. He lunged at officers with a knife. 
3. James Boyd, a homeless man with mental illness, was shot and killed in a confrontation with Albuquerque police. 
4. Matthew Pollow had schizophrenia. He lunged at the police with a screwdriver and was shot and killed. 
5. A woman in Santa Clara called police to say she was suicidal. When she answered the door holding a baseball bat, they shot and killed her. 
6. Dontre Hamilton, who had schizophrenia, was shot and killed by Milwaukee police in a confrontation. 
7. David Latham, who likely had schizophrenia and had been off his medications for a few days, was shot and killed by Virginia police when his aunt called 911 to ask police to help him. 
8. Jason Harrison, who had schizophrenia, was killed when his mother called the Dallas police to ask for medical help for her son. 
9. Nick Davis, who had schizophrenia and bipolar disorder, was shot and killed by police when he swung at them with a crowbar. 
10. Rosendo Gino Rodriguez was killed by police in Midland, Texas when he retreated to his room during a welfare check initiated by his family. 
11. Michelle Cusseaux was shot and killed by Phoenix police who were tasked with taking her to a mental health facility on an emergency hold. 
12. Kajieme Powell, a St. Louis man with mental illness, charged police yelling “Shoot me now!” They did, just days after Michael Brown’s death in nearby Ferguson. 
13. Chelsea Fresh, who suffered from bipolar disorder, was shot and killed by police in Beaverton, Oregon. She was holding a rifle. 
14. Calvin Peters, a Brooklyn man who had bipolar disorder, was shot and killed after he stabbed a student in the face. 
15. Thomas Read was shot and killed in New Jersey when he came at police with a knife. He had schizophrenia and had been unable to get his medications because of a problem with his health insurance.

This list is not exhaustive: it’s hard to track how many people are killed by police each year and whether those killings are justified. And the problem works both ways. Just as people with mental illness are killed by police, law enforcement also faces threats: Mental Illness Policy.org has tracked 115 deaths of police officers since 2009 that can be attributed to people with untreated mental illness. 

I should stress here that people with serious mental illness are not likely to be more violent than people in the general population, unless they are untreated. Without treatment, the risk of violence to self and others rises. That has certainly been my experience with my own son. Once we had a correct diagnosis and medications that worked, the threats of harm to self and others stopped. I don’t believe that medication alone is the answer—talk therapy and occupational therapy are extremely important in helping my son to navigate a world that presents him with significant sensory challenges. But lithium changed everything for my son and my family.

I think often of the Newtown families, the pain of that first Christmas without loved ones, of gifts wrapped for children who would never open them, of holes left in hearts that will never fill. And I also think of Adam Lanza and his mother and wish for all our sakes that he could have gotten treatment before tragedy. That’s my wish for every family who struggles with the often overwhelming challenges of mental illness. But we can’t do it alone. We need the support of our friends and communities. We need society to stop blaming us and our children. But most importantly, we need access to care. Without treatment, two years after Newtown, for too many families, Christmas is a time of sorrow and loss and grief. 

Sins of the Mother

A child's death by suicide is every mother's worst nightmare.

Why Blaming Nancy Lanza for Adam’s Illness Is Easy (and Why We Need to Stop)

“Mom, I don’t want to be anymore.” My son, four years old, his eyes swollen and red from sobbing, burrowed his white duck-fuzz head against my chest.

I froze. “What do you mean?” I asked gently. “Everything is okay now. The nightmare is over.”

He looked up at me. “I want to be a zero,” he replied. “I don’t want to be anymore. I want to be a zero.”

Nothing in the parenting books or classes about preschool behavior prepares you for this: your young child’s desire to end his own life. True, “Michael’s” nightmares were getting worse, and he sometimes sleepwalked. Days could be even tougher: Michael would throw tantrums that lasted for hours and left us both exhausted. I didn’t know what to do.

As he grew older, his suicidal thoughts became more frequent and more detailed. He threatened to kill himself several times a week. Though I normalized many things about my son’s unpredictable and sometimes violent behavior, I never got over the suicide threats. They still haunt me.

For this reason, I followed Brittney Maynard’s tragic life-ending choice with a different perspective than many people. While I respect her struggle and her wish to end it (I too have lost a loved one to cancer), I know many other young people who are diagnosed with a serious, life-threatening illness who repeatedly express a desire to end their own lives. My son was one of them.

So was Adam Lanza.

Now a new report from Connecticut’s Office of the Child Advocate details the many ways the system failed Adam, and the children he killed at Newtown in December 2012.  One significant finding: Adam was “completely untreated in the years before the shooting and did not receive sustained, effective services during critical periods of his life.”

In fact, if you read the summary of Adam’s early life, it looks like my son’s (and many other children’s) path. Adam had developmental challenges in early childhood. I’m sure at least one person told Nancy, “He’s just a boy,” or “He’ll grow out of it.” School personnel identified social/emotional challenges that became more apparent after fourth grade. I’m sure that’s when they started suggesting that Nancy home school her son, ostensibly for his own good, but actually to prevent disruptions in the learning environment. He was initially evaluated by a costly outside expert (Yale), with a recommendation for a comprehensive treatment plan of the type, no doubt, that bankrupts even moderately wealthy families like the Lanzas. In this respect, my son differs from Adam: we never had access to that kind of resource until my blog about Newtown went viral.

Where my son’s path diverged from Adam’s is at age 13, when my son was finally diagnosed with bipolar disorder. Since that diagnosis and treatment began, my son has not had any violent behavioral outbursts or suicidal thoughts. He is back in a mainstream high school, doing well in all his classes, writing a sequel to his first novel (tentatively entitled The Demigods from Outer Space), and starting a chess club.

But here’s the thing: I don’t attribute my son’s remarkable progress to anything special about my parenting. I was lucky, period. I got a diagnosis for him, and medications that work. And most importantly, I was able to intervene before my son turned 18, despite the many wrong turns we took in the baffling and fragmented mental health care maze early on.

When I tell people—including media professionals—that parents cannot help their sick children after the age of 18, many of them are surprised. After all, if your 20-year old son was in a car accident and suffered a traumatic brain injury, you would be right there by his side, communicating with his healthcare team, and likely even making decisions about his care if he lacked the capacity to do so.

When your child has a serious mental illness and is over the age of 18, it doesn’t work like that. Serious mental illness is classified as “behavioral health,” and in most cases, people who have behavioral health problems have the right to refuse treatment.   The very public spectacle of Amanda Bynes’s breakdown has introduced many people to this terrible parental conundrum for the first time.

Unlike me, Nancy Lanza was incredibly unlucky. Yet the Child Advocate report, in the time-honored tradition as old as Eve of blaming the mother, concludes that Nancy “enabled” her son and was perhaps in denial of the seriousness of his illness.

I completely understand how that can happen to a parent who has tried, many times, to get services, and failed. I completely understand how that can happen to a mother who is raising a potentially violent son on her own, without support. And I can completely understand how that can happen to a parent in a society that stigmatizes mental illness and medication, that insists on treating mental illness as a “choice” rather than as a disorder.

Through the years, bit by bit, Nancy normalized Adam’s extremely abnormal behavior. In fact, what seems very bizarre to outsiders becomes “normal” for many families who are struggling with mental illness. This concept is difficult to understand unless you have actually lived it. But if you are living it, I know you’re nodding your head in agreement right now.

High profile murder-suicides like Columbine or Newtown bring attention to the problem of mental illness. Yet two years after Newtown, we still don’t have solutions for children and families. And two years later, both this most recent report and the media are still blaming the mother.

What will it take? How many more families will suffer from tragedies because we lack effective treatments?

Mental health professionals tell us that suicide is preventable. But if numbers are not decreasing, it’s clear we need better solutions, beginning with earlier diagnosis and intervention for children who suffer. That’s one area where I agree completely with the Connecticut Child Advocate report.  A child’s death by suicide is every mother’s worst nightmare. Though Nancy Lanza paid the ultimate price when she couldn’t get help for her son, at least she was spared this: she didn’t live to see her child kill— or die by suicide.

Singing to End Stigma

This week, forget the ice bucket challenge and think karaoke!

My son has bipolar disorder. Note: he is not bipolar. He has a serious mental illness, which he prefers to define as a "mental difference." But he wants the same things any kid his age wants: friends, a chance to score a goal on the soccer field, good grades, top rankings in Halo. With the right treatments and supports, he’s been given a chance to reach those goals.

“If people meet me first and get to know me, then they find out later about the bipolar, it’s no big deal,” he told me when I asked him how stigma affected him personally. “But when they hear bipolar first, they think, ‘Oh no! He’s a bad kid!’ And I have to work that much harder, if I get a chance at all.”

In a series of “mom chats” with my friend Janine Francolini of the Flawless Foundation, I asked mental health advocate Ross Szabo, who manages his bipolar disorder successfully, what he would tell my son about living with mental illness. You can watch his response here. Ross stressed the importance of self-compassion. I think he’s right: above all else, people who struggle with mental illness (or as my son likes to call it, mental “differences,”), have to develop a lot of compassion for themselves, because they often don’t get compassion from others. And as his mother, I can attest to the fact that parents don’t get much compassion either: when your child is in a psychiatric hospital, no one brings you a casserole.

One depressing fact: even though anti-stigma campaigns have made people more aware that mental illness is a brain disease, those campaigns have thus-far failed to budge the stigma meter long term. I think that both stigma and the resultant discrimination against people who have mental illness are the direct consequences of our society’s inhumane decision to replace mental institutions with another, worse kind of institution: prison. Treating people who have mental illness by sending them to prison, or even to “mental health court,” reinforces the idea that mental illness is a choice or a character flaw. We would never treat people who had a cancer diagnosis by sending them to jail.

A few months ago, the ALS ice bucket challenge was all over my Facebook feed. I was challenged, and I refused to participate. Not because I’m afraid of a little cold water (I will neither confirm nor deny that I have occasionally enjoyed a post-hike au naturel dip in some of Idaho’s lovely and bracing alpine lakes). Not because I don’t think that ALS is a serious disease that deserves our attention, or that I shouldn’t personally contribute to the cause.

My book The Price of Silence about parenting a
child with mental illness is available at
independent bookstores like Iconoclast Books.

I didn’t contribute because you never see things like ice bucket challenges for mental illness, to fund treatment before tragedy. But this week, my kids and I decided to participate in the Children’s Mental Health Network Karaoke Challenge, issued by Linette Murphy, a fellow mom and advocate. I am fortunate to call Scott Bryant-Comstock, CHM Network director, a friend, and I have been honored to participate in a series of dialogues about HR 3717 and how we can fix our broken mental healthcare system.

I’m also planning to use every social media channel I can this week to join my friends in fighting stigma. “When it comes to mental health, silence is not golden.” This is the theme of a story-sharing, stigma-busting campaign led by the International Bipolar Foundation and other groups to fight the stigma that affects people who have mental illness. Starting Monday, October 6, use the hashtags #BustTheStigma and #SayItForward to share your stories of living with mental illness and working toward mental health. 

Because the Price of Silence is still far too high for children, families, and communities.

The Price of Silence

Dear Friends,

This is a humbling day for me. The first time I read a book and realized the power that words can hold over our hearts and minds, I knew that I wanted to write. Today, my dream of publishing a book has come true with The Price of Silence: A Mom's Perspective on Mental Illness, from Hudson Street Press.

But for me, the price of realizing my dream was beyond anything I imagined. I wrote The Price of Silence because like most  of us, after Newtown, I wanted answers. My quest through the complex and often hostile systems that families and children who have mental illness must navigate was personal: I live this experience daily with my dear son.

Kirkus Reviews described my book as "a searing indictment of the lack of affordable care available for the treatment of mentally ill adolescents."

Andrew Solomon, author of Far From the Tree (which everyone should read), wrote: 

In this courageous, determined, radical book, Liza Long exposes the dearth of alternatives for parents of kids with mental illnesses, the shame that attends their perceived failures, and the hope that such families may find their collective voice and demand better options.  I hope her passionate cry is heard far and wide.

I am profoundly grateful to the families, providers, police officers, educators, and advocates who shared their often painful stories with me. It's not easy to talk about mental illness; I know that truth firsthand. And I am especially grateful to my son, whose perspective provides valuable insight into mental illness and how it affects children. His humor, intelligence, and love have made my life immeasurably better. He is not a bad kid--he is an incredibly brave kid (and he just finished writing his first book! At age 14! It's about demigods from outer space).

But today, though I am grateful that so many people are speaking up and sharing their stories. I am also saddened at our inability as a society to act. People who have mental illness, including children, are "treated" in jail or left to die on the streets or by suicide. This is a national tragedy of epic and growing proportions. I feel that we have a moral obligation to care for our children, brothers, sisters, parents, friends, and colleagues who have mental illness.

I hope you will read my book. But more importantly, I hope that you will join me in speaking up for change. Please contact your representatives in  Congress. Join Treatment Before Tragedy. Participate in your local NAMI walks this fall. And share your stories. Their truth is powerful. Together, I know we can make a difference. In the words of one of my favorite poets, Robert Frost:

 

Only when love and need are one, 

And the work is play for mortal stakes

Is the deed every really done

For heaven and the future's sakes.

These are our children, and this is their--and our--future.

Best to you all!

Liza

P.S. If you do want to buy the book, please consider a local bookseller. Here are two of my favorites:

Iconoclast Books
www.iconoclastbooks.com
671 Sun Valley Rd W, Ketchum, ID 83340
(208) 726-1564

Rediscovered Books
www.rdbooks.org
180 N 8th St, Boise, ID 83702
(208) 376-4229

Knock Knock, Who's There?

Law enforcement officers are first responders
for  mental illness.
Photo by leila haj-hassan, freeimages.com

When your child has a mental illness, too often it’s the police

Last night, I was abruptly awakened at 4:00 a.m. by the sound of my doorbell ringing. Confused with sleep, I struggled to pull on a pair of jeans as the doorbell rang again, followed by an insistent knocking.

“Who is there?” I said as I stumbled to the door.

“The police,” a firm male voice responded. “Open up please, ma’am.”

My heart froze. “Where’s my son?” I thought, panicked.

I slowly opened the door to see two police officers. “Can I help you?” I asked.

“Is that your car, ma’am?” the female officer asked, gesturing toward my grey Suzuki.

“Yes,” I replied.

“The door is open,” the male officer said. “Will you check inside and see if anything is missing?”

My heart started beating again. It wasn’t anything serious; my son had just forgotten to close the car door behind him, like he forgets so many things: dishes on the table, cupboard doors open, sometimes even the refrigerator or freezer gaping wide, sending my electric bill sky high.

My 14-year old son has bipolar disorder. For years, he experienced unpredictable, violent rages. The police have been frequent visitors to our modest suburban townhome. Sometimes they have taken him to the emergency room. Sometimes they have taken him to juvenile detention. Every time, my family has been afraid.

This morning, I read a poignant post on helicopter parenting of adult children with mental illness—one that I am afraid will be my experience in a few years. Karen Easter, a Tennessee mom-advocate, wrote this about  her son:

[O]n bad days, when it is apparent he hasn't been taking his meds, I have no other choice but to put on my helicopter mom hat.
In fact, I have never liked this hat.
Did I mention I really, really despise hats?
Hey, wait just a minute ... I should NOT have to be wearing this hat AT ALL!
But I wear it because right now this very minute, I must hover to keep him safe--only because the system has failed him and our family miserably. I don’t really want to wear this hat.

For so many parents of children with serious mental illness, this last week of August is a nail-biter as we wait to see whether Congress will do the right thing and pass Representative Tim Murphy’s proposed “Helping Families in Mental Health Crisis” Act. Here are some of the critical reforms that Representative Murphy’s bill provides:

Revising HIPAA Laws and Medicaid Reimbursements

Privacy laws in healthcare prevent parents from getting crucial information that they need to help their adult children in crisis. And the Medicaid IMD exclusion has directly caused an acute shortage of inpatient psychiatric beds for patients with mental illness who need treatment. Today, there are only 40,000 psychiatric beds available in the nation. If my son required longer term care, he would have to go hours away from my home. This is true for many families.

Providing Alternatives to Institutionalization through AOT

Assisted Outpatient Treatment (AOT)  is a proven alternative to keep people stable and productive in their communities. The opposition to Rep. Murphy’s bill has labeled this provision as “forced treatment.” It is not. AOT laws are already on the books in 44 of 50 states and “require mental health authorities to provide resources and oversight necessary so that high-risk individuals with serious mental illness may experience fewer incidents and can live in a less restrictive alternative to incarceration or involuntary hospitalization” 

A few weeks ago, I spoke with a young woman who opposed my views on AOT. She had been in a psychiatric hospital for more than a month and felt that the care she received was “horrible.”

“Have you been to jail?” I asked. She admitted that like many people who have mental illness, she had.

“Which did you prefer?” I asked.

“The hospital,” she responded without even hesitating. But she made a good point: our current in-patient hospitalization practices, while not as horrible as the psychiatric institutions of yore, could still use some serious makeovers in terms of both physical facilities and therapeutic practices. One of my friends with bipolar disorder has envisioned a therapeutic hospital that would feel more like a spa, where people could stabilize in safety while also continuing to work remotely or go to school—to do the things that give everyone’s life meaning and purpose. Similarly, AOT aims to keep people in their communities, not force them into institutions.

Restructuring SAMHSA funding

I have already expressed my frustrations with SAMHSA and how they fail to provide assistance to the most critically ill patients and their families.  Representative Murphy’s bill restores accountability by tying funding to evidence-based practices that actually help people with mental illness to manage their conditions and live productive, healthy lives. Far from discouraging innovation, as the opposition warns, this provision will actually encourage organizations to build program evaluation into their practice, providing data about what works—and what doesn’t—so that we can focus on helping people to make their lives better.

Let me give you an example from my own state. In an effort to save money, Idaho contracted with Optum to manage its Medicaid mental health care. Optum looked at one service, psychosocial rehabilitation, or PSR, and decided that it was overused and often not medically necessary, especially in children. 

PSR had historically been used as a “catch-all” for children with serious emotional disturbances or behavioral issues. The result of this abrupt PSR denial was that families suddenly found themselves without a service they felt was necessary to their children’s health.

What did the evidence say? Because there were never any requirements to track outcomes, the state merely logged hours and made reimbursements. It turns out that no one really knows what PSR is in Idaho, let alone whether it is effective. Every agency essentially acted independently, developing their own model in the absence of standards for care. Two researchers did find significant clinical improvements for kids on PSR. But they only looked at one of many models. 

Tying outcomes to funding would have provided much-needed data on whether PSR works in children. If the data had been positive, we might have an additional valuable tool to help children function better in the community, a tool we could share with other communities to improve everyone’s care.

Representative Murphy’s bill was forged after the tragedy of Newtown, which also sparked my own desire to advocate for my son. As I researched the myriad problems that plague our system for my forthcoming book, I repeatedly found the same tragic story: poverty, mental illness, and prison. America’s incarceration rates when compared to other so-called first world countries are quite literally off the charts, with more than 2.4 million people in prison. 

If ever there was a truly bipartisan cause, it’s mental health. Fixing our broken mental healthcare system promises to ameliorate so many of the other social ills that harm children, families, and communities. A new advocacy organization, Treatment Before Tragedy, is sharing stories of families like mine, whose children are suffering.  If you are a family member of someone who has mental illness, I encourage you to join this organization and to share your story on Twitter, using the hashtag #Tb4T.

And if you haven’t, please call your representative personally and ask him or her to cosponsor Representative Murphy’s bill. Right now, if your child is in mental health crisis, your only options are to call the police or to go to the emergency room. We can and must do better for our children and families. No family of a child with mental illness deserves that dreaded knock in the middle of the night.

Without Us

Treatment before tragedy. Photo by Daniel Battiston, freeimages.com

Why are some mental health advocacy groups opposed to critical healthcare reform for serious mental illness?

Early Saturday morning, I woke up to the news of another mass shooting, this time in a pleasant Santa Barbara neighborhood. Details were still sketchy at that point—the shooter was young, white. and male. I turned off my computer, packed my kids and our camping gear in the car, and headed for the hills, out of cell phone range.

Like so many other mothers of children who have mental illness, I knew how the story would go. His parents would have sought treatment. He would have had encounters with law enforcement. Probably he was bullied as a child. He played violent video games. And now, he—and six other young people, all of them with promising futures—were dead.

When we returned this afternoon, sunburned and covered in sand from playing all morning on the dunes, a few new details of the story surprised me: the connection to Hollywood, the misogynistic YouTube rant (see Laurie Penny’s analysis here), the Fox News allegations that Elliott Rodger was gay (???). But Fox News aside, the media seemed to be paying far less attention to the tragedy than they were to NASCAR.

It seems as if after Newtown, we just gave up. We decided that this is the kind of society we are going to live in—a society that has too many guns, and a society that chooses to ignore people with mental illness and their families, at great cost (see Liz Szabo’s timely piece in USA Today).

Part of the problem is that just as gun control opponents and gun control advocates can’t agree on even common-sense things like background checks, the mental health community can’t come to a consensus about how best to fund—and treat—mental illness. As I’ve shared before, my son has a serious mental illness. For him, and for my family, medical treatment has restored a sense of normalcy to our lives. But not everyone thinks the medical model is best for treating mental illness.

Right now, there are two competing bills in Congress. HR 3717, the “Helping Families in Mental Health Crisis Act” proposed by Rep. Tim Murphy, promises hope to families and children like mine. The other, the “Strengthening Mental Health in Our Communities Act” proposed by Tucson shooting survivor Rep. Ron Barber, maintains the status quo, a broken and fragmented system that requires patients to be well enough to seek their own care and promotes a focus on behavior and prevention, two concepts that don’t apply to people who have organic brain diseases, people who are too often “treated” in prison or ignored on the streets.

What I want—and what Elliot Rodger’s parents no doubt wanted—is “treatment before tragedy.”

Last week I attended a webinar sponsored by SAMHSA-funded mental health advocacy groups who are opposed to HR 3717. As the mother of a child who has a serious mental illness, I’m a supporter of Rep. Murphy’s bill. But since I also volunteer for and donate to organizations that get grants from SAMHSA, I wanted to understand the other side.

The phrase “Nothing about us without us” was used 30 times in the course of the hour-long webinar. This dictum establishes the common sense model of including people with mental illness in crafting legislation that would affect their lives. It’s a good idea, and that’s exactly what Representative Murphy did over the course of his year-long post-Newtown investigation into the myriad problems that continue to plague our mental healthcare delivery model. You can read the final report here. 

But at the end of the webinar, I was left wondering who these probably well-meaning and sincere advocates meant by “us.” Because I don’t think they are talking about me or my son, or hundreds of other families I know.

“When young men rage and scare their families, where are they supposed to go?” a friend who was also on the webinar and whose adult daughter suffers from bipolar asked me. “I feel like I have to beg my government not to imprison my child or leave her on the street to get prostituted out or taken advantage of by druggies. All while they spend money in the name of the illness she suffers from.”

The problem is that many of the sickest among us do not know that they need help. And even if they—or their families—realize they do need help, as Creigh and Gus Deeds did, too often there are no resources available. That’s why anything less than HR3717, the comprehensive transformation of our broken mental health care system proposed by Rep. Tim Murphy and backed by 86 bipartisan legislators, is so critical.

My son has never gone to an acute care psychiatric hospital willingly; in fact, it usually takes 2-3 police officers and a tranquilizer to get him into care. I can’t do it on my own. But at least he’s still a minor, so I can make sure he gets the help he needs—if we are lucky and beds are available.

And at least when he’s not in a manic rage, he’s aware of his illness and wants to take his medications.

What happens when he turns 19? What happens if he decides not to take lithium anymore?

The alternate bill proposed by Rep. Barber fails to address this all-important question, and many others that will haunt the investigation of this most recent mass shooting.

According to Susan Mosychuk, Rep. Murphy’s chief of staff, the bill introduced by Rep. Barber 

denies inpatient and outpatient treatment options to those who are experiencing an acute mental health crisis. It denies families the opportunity to be part of the care team and help their loved ones with serious mental illness. And it denies the reality that the lead federal agency, the Substance Abuse and Mental Health Services Administration, has failed in its mission. It’s almost as if the Barber bill wants to deny that people with severe and persistent mental illness exist. Denial doesn't work for substance abuse, and denial won't work for the families whose loved ones are in a mental health crisis.

Allen Frances, the author of Saving Normal, articulated the problem beautifully: “This is the cruel paradox haunting our mental health non-system: we deliver way too much care to basically normal people who don't need it, while providing way too little care to the really sick people who desperately do.” 

So why are some mental health advocacy groups opposed to Rep. Murphy’s bipartisan-backed legislation?

In the webinar I attended, they gave three reasons: that the medical model of mental illness would prevent people from seeking mental healthcare services, that requiring accountability and restructuring SAMHSA would eliminate or curtail innovation in mental healthcare, and that HR 3717 discriminates against people with serious mental illness by forcing treatment through its Assisted Outpatient Treatment provisions. While civil rights are undeniably a concern for those with mental illness, forced treatment and loss of civil rights already occurs when we choose to treat them in prisons rather than in hospitals.

Though this conclusion disturbs me, I think the real opposition to HR 3717 comes down to money. Organizations are afraid of change, and they are afraid of losing their funding. But as the most recent tragedy so clearly demonstrated, we can’t keep doing things the same way and expect our outcomes to be better. Those of us who have serious mental illness deserve a chance at hope and health. We deserve, as my son does, to have a life worth living—and to live that life. Please don’t support proposed legislation that is written without us, the parents who love our children and want treatment before the next tragedy.

Oh SAMHSA, Where Art Thou?

Forced treatment already exists. It's called prison.

What did Newtown mean, if we can’t get help for children and families in mental health crisis?

I have a confession to make. Until about a year ago, I had no idea what SAMHSA was. I had never even heard of it. My son has struggled with serious behavioral issues for more than nine years, which we now know are caused by his bipolar disorder. We were working with a small army of social workers, counselors, school personnel, psychiatrists, therapists—and I was well-versed in a small textbook of acronyms like IEP, SMI, ADHD, ODD, ADA, etc. But not one time was SAMHSA or any of its programs ever mentioned to me as a resource.

I’m going to assume that you’re like me, that you also have no idea what SAMHSA is or what it stands for. It’s the Substance Abuse and Mental Health Services Administration, and it’s important because it gives out a ton of grant money—they have requested $3.6 billion for next year—to community organizations, many of which I also personally support with my own time and money. According to the agency’s own website, “Congress established the Substance Abuse and Mental Health Services Administration (SAMHSA) in 1992 to make substance use and mental disorder information, services, and research more accessible.”

Well, to put it bluntly, if that’s its mission, SAMHSA sucks.

A New Kind of Stigma

One of SAMHSA’s top priorities is the elimination of stigma that surrounds mental illness. And that’s important, because stigma harms children and families. DJ Jaffe of mentalillnesspolicy.org recently argued that stigma does not exist—that prejudice and discrimination are the real problem. I disagree with him on the first point, but could not agree more fervently with the second.

You don’t have to go any farther than the SAMHSA webpage to see an example of prejudice and discrimination against people with serious mental illness. Look around. Can you find anything—even the littlest thing—that talks about SMI? The message I get from SAMHSA is this: “Behavioral health is essential to health. Prevention Works. People Recover. Treatment is effective.”

I wish this were always true. For people with serious mental illness, people like my son, too often it’s not.

Pretty words, no substance

SAMHSA, the very organization tasked with serving children who have mental illness and their families, creates stigma by refusing to talk about—let alone provide solutions for—the inconvenient truths that plague too many of us: violence, prison, homelessness, fear. In fact, in its focus on “behavioral health” and “recovery,” I would propose that SAMHSA actually creates its own pernicious, subversive form of stigmatization within the very community that is supposed to be supporting people with mental illness.

Behavioral health implies choice. So does recovery. SAMHSA promotes a consumer model, where people with behavioral problems choose to get help and recover. The problem is that this approach does not reflect reality. For many people who suffer from Serious Mental Illness—schizophrenia, bipolar disorder, or major depression—choice is not an option.

Forced Treatment Already Exists. It’s Called Prison.

Why does this matter? Because right now, Representative Tim Murphy has proposed legislation that would overhaul our nation’s broken mental health system, providing much needed treatment to people with serious mental illness and restoring accountability to SAMHSA, an organization that has suffered from a massive dose of mission creep. HR 3717, the “Helping Families in Mental Health Crisis Act,” was drafted after extensive consultation with parents like me, consumers of mental health care, law enforcement professionals, and other stakeholders in this increasingly serious mental health crisis that has created an environment where mass shootings or stabbings barely make the news anymore.

But community organizations are out in full force against the bill. I know this, because as I mentioned, I volunteer for many organizations, and I am on their mailing lists. The primary rallying cry against the bill seems to be the idea of “forced treatment,” or treating people against their will. Here’s an example of the type of language they are using:

[HR 3717] is intentionally designed to make it sound benign and to gloss over the potential harm and many rights violations. For example, 'increase access to mental health treatment,' in many instances, means increased force. Empowering 'family members' means taking away privacy protections and rights to confidentiality for adults in mental health services. Expanding 'access to evidence-based treatments,' means eliminating access to alternatives that don't have the funds to become 'evidence-based.' Advancing 'medical research' means severely reducing funds to other groups and organizations, including the Substance Abuse and Mental Health Services Administration (SAMHSA). 

Oh, I get it. You can’t show any measurable outcomes for your education or anti-stigma or peer support program, and you are afraid you’ll lose your funding.

As a response, Democrats are rumored to be presenting their own mental health bill this week, eliminating the provisions of Murphy’s bill which would have helped families in mental health crisis the most. What I want to say to these probably well-meaning representatives is this: forced treatment for people with mental illness already exists. It’s called prison. E.F. Torrey, the mental health industry’s Cassandra, issued a clear-eyed warning about treating serious mental illness in jail back in 1993, and today, the problem is even larger.  

What Murphy’s bill actually calls for is Assisted Outpatient Treatment (AOT), and it’s a proven way to keep people out of jail and off the streets. In drafting HR 3717, Rep.Murphy, a child psychologist, did his homework. He talked to those of us who are living this nightmare. He knows what we need to prevent another tragedy like what happened to Creigh Deeds, or to countless other families. I want to ask those representatives who are not supporting Murphy: what did Newtown mean, if we can’t get help for children and families in mental health crisis?

I’m Okay, You’re Okay

The thing is, I also agree with SAMHSA. For neurotypical people like me, behavioral health is incredibly important to overall health and quality of life. I know this firsthand. Like most Americans, I have personally experienced bouts of situational depression. My senior year of college, I broke off an engagement. My father was dying of cancer. I could not experience any joy or imagine any meaning to life. I became passively suicidal and began to control the only thing I felt I could control: my daily intake of food.

Fortunately, my wonderful roommates intervened and got me help. I learned to overcome my negative thoughts, to exercise, to practice yoga. I developed resilience. I am grateful to the therapists, and yes, to the Zoloft, that got me through that dark period in my life. The tools I learned have proved invaluable to me as I have faced even greater challenges throughout my life. And I return to therapy whenever I need an objective third party to help me realistically assess my situational challenges. I guess you could say I’m in recovery.

This kind of thing doesn’t work for my son who has bipolar disorder. Not at all. The recovery model doesn’t work all that well for a subset of the population who suffer from addiction, either, as Philip Seymour Hoffman’s tragic death demonstrated.

In “The Lie of Focusing on Those with Serious Mental Illness,” Dr. John Grohol argued that we should treat all mental illness equally.  I respectfully disagree. We need to provide help and hope to families in crisis, before the next Newtown, before the next (insert location of most recent mass shooting). Our current system of forced treatment—prison—or no treatment—homelessness—must end.