It's Time to Talk about Fear and Love

What do guns, race, and mental illness have in common?

Charleston shooting demands difficult conversations about guns, race, and mental illness

James Holmes was obsessed with Batman. Elliott Rodger thought all women hated him and he needed to exact revenge. Adam Lanza killed innocent first graders, an act that shocked the collective national conscience. Now, in a country already reeling from racial turmoil, mass shooter Dylann Roof has targeted black churchgoers. All of the shooters were described as “quiet bright boys” who became increasingly isolated in their teens.  For all of them, numerous red flags were raised.

In his national response to the tragedy, President Obama observed what many have been saying for years: “This type of mass violence doesn’t happen in other advanced countries.” 

That’s not entirely true: Norway’s 2011 massacre, the attacks on Charlie Hebdo in France, and the Germanwings crash show that other nations experience unpredictable and senseless violence as well. But Obama’s still-valid point is essentially the same one muckraker Michael Moore made in Bowling for Columbine (2002). There’s something different about guns and America.

Let’s look at what we know about gun violence.

Fact: Mass shootings account for only about two percent of all gun violence in the United States. In 2015, only 133 of 5,767 deaths caused by gun violence were the result of mass shootings. In fact, you are much more likely to die in an airplane crash than in a mass shooting event. 

Fact: Blacks are disproportionately affected by gun violence. Though blacks make up only about 13 percent of the U.S. population, 55 percent of all people who died by homicide in 2010 were black. 

Fact: To date in 2015, there have been 2,025 reported and verified shootings involving law enforcement. It is hard to know exactly how high this number is because the government does not track police shootings. The Washington Post has reported 385 fatalities this year so far; The Guardian 470. According to a Pro Publica study, young black men are 21 times more likely to be shot by police than young white men. 

Fact: Suicide completion is the second leading cause of death for people ages 15-34, with 41,149 deaths by suicide completion across all age groups in 2013. Almost 60 percent of deaths by gun violence are completed suicides; the vast majority (87 percent) of suicide gun violence victims are male.

Fact: Based on studies of mass shooters, about half of the shooters suffered from serious mental illness. But the most common form of violence associated with mental illness is self-harm; more than ten percent of people diagnosed with schizophrenia and 15-17 percent of people with bipolar disorder die by completing suicide.

President Obama acknowledged that gun control is not going to happen, not even when a Bible study group is gunned down by a young man obsessed with white supremacist dogma. That’s why it’s up to each of us to face up to what guns, race, and mental illness represent in America. The seemingly endless and unproductive debates are really about our fear. It’s time to change that conversation.

How do we solve the gun issue?

We all look in the mirror and admit that we are afraid to die. We acknowledge that we likely will have no control over the time, place, or manner of our deaths. Then we start living. As part of our commitment to overcoming fear, we educate ourselves, practice responsible gun ownership, and teach it to our children. (Also, we start tracking data about law enforcement and gun violence.)

How do we solve the race issue?

We all look in the mirror and say, “I’m human. So is everyone else, no matter what color his or her skin is.” Then we start to treat people the way we want to be treated. We hold doors open for people of all genders and races. We write thank you notes to each other and buy each other’s coffee in the drive through lines. If we’re white, we recognize that we have privilege, and we fight even harder for the rights of those who do not share that privilege.

How do we solve the mental illness issue?

We all look in the mirror and say, "Mental illness is not a choice or a character flaw." Then we end stigma and provide treatment. Mental illness is a costly public health crisis, in both financial and ethical terms.  U.S. Representative Tim Murphy has reintroduced his “Helping Families in Mental Health Crisis Act” with significant revisions that can help individuals, families, and communities to improve access to care. 

In the wake of mass shootings, I used to write about the need to provide treatment before tragedy. My new message is this: enough about tragedy. Let's focus on treatment. Treatment provides hope, and love overcomes fear.

The American writer Thomas Wolfe wrote, “To believe that new monsters will arise as vicious as the old, to believe that the great Pandora's Box of human frailty, once opened, will never show a diminution of its ugly swarm, is to help, by just that much, to make it so forever.” Let’s stop believing in new monsters and start hoping instead for an America that can overcome its fear—of guns, of race, and of mental illness. Today we may feel lost and hopeless and afraid. But as Nelba Marquez-Greene, a grieving mother who lost her six year old daughter to gun violence, said one month after her daughter’s senseless death, “We choose love. Love wins in Newtown, and may love win in America.” 

   

I'm betting on love.

Same Old Stigma

Brian Wilson’s Biopic Shows Little Love or Mercy for Psychiatry

As the mother of a teenager who has bipolar disorder and a mile-wide creative streak, I was pretty excited to see the new Beach Boys biopic, Love and Mercy.  Composer and musician Brian Wilson has been completely and heroically transparent about his struggles with mental illness. Diagnosed with schizoaffective disorder, Wilson works tirelessly to promote an end to stigma through creative projects like the SMiLE sessions.  

But sadly, the movie was not at all what I expected. As an all-too-familiar modern fairy tale of the evil psychologist overmedicating and imprisoning a creative genius, Love and Mercy contributes to the merciless stigma that surrounds mental illness. Most stories have a beginning, a middle, and an end. Love and Mercy, with its deliberately framed stories of Brian Wilson’s success and subsequent mental illness, oversimplifies Wilson’s journey, pitting Eugene Landy (note: Landy is not a psychiatrist) against the fairy princess Cadillac saleswoman who becomes Wilson’s wife. The middle of the story, where Landy coaxed Wilson from three years in bed and a 150 pound weight gain 
to regain some semblance of his creative life and artistic promise, is only alluded to in the film, and the post-Landy period is a mere blurb as the end credits roll. 

Yes, Landy was a bad guy. Love and Mercy’s Paul Giamatti does a brilliant job at showing Landy’s failures, but the fact that the story is true does not make it any less damaging, at a time when the profession of psychiatry is desperate to attract talented physicians in the face of a growing public health crisis. Worse, it's not the whole truth: While what Eugene Landy did to Brian Wilson was truly horrible, Brian Wilson's life before Landy was arguably worse, which is certainly not a justification, but it does show just how awful life can be for people with serious mental illness.  

For the many thousands of children and adults who are in prison, or live homeless on the streets, a mental health professional can be a guide on the path to help and hope. Contrary to myriad negative media portrayals of psychiatrists, most mental health professionals are dedicated to improving their patients’ lives. That has certainly been my son's experience. Yet a 2014 study concluded that “medical students enter medical school with distinctly negative attitudes toward a career in psychiatry compared with other specialties,” which explains why only three percent choose to specialize in psychiatry each year. 

Love and Mercy is just the most recent example of an unbalanced cinematic portrayal of mental healthcare professionals, what Sharon Packer has termed “cinema’s sinister psychiatrists.”  In a study of mainstream movies, Wedding and Neimic (2014) found that for every balanced portrayal (Antwone Fisher, Ordinary People), there were four times as many unbalanced portrayals (What About Bob, Silence of the Lambs, One Flew Over the Cuckoo’s Nest, etc.) . 

The whole Love and Mercy story is this: Brian Wilson regained his life because of his family, his mental healthcare providers, and his own desire to seek recovery. As he told Ability Magazine in a 2014 interview, "Yes, I’ve been seeing a psychiatrist once a week for 12 years now, and he’s become a really close friend of mine. We talk and he helps me out.”   He also takes medication to manage his condition 

I'm not suggesting that Eugene Landy’s treatment of Brian Wilson was anything but unethical and immoral. It's just not the whole story. For every bad mental health professional like Landy, there are many more good mental health professionals, like the UCLA doctors who correctly diagnosed Wilson, or his current psychiatrist. All I’m asking is that Hollywood tell that story—the story where Wilson is correctly diagnosed, finds the right treatments and supports, and lives the life he deserves.

A Smoothie Won't Save My Child

Smoothies are undoubtedly delicious. But they don't cure
mental illness. Photo by Richard Dudley, freeimages.com

Why We Need Substantive Mental Health Reform Now

On Wednesday, February 11, 2015, I tuned in to C-SPAN to watch Representative Tim Murphy and the House Oversight and Investigations SubCommittee address concerns about a lack of leadership in mental health. The hearing was convened in response to a disturbing and disappointing report from the GAO that exposed the lack of care provided to people with serious mental illness. In her testimony, SAMHSA director Pamela Hyde, an attorney, essentially admitted that she doesn’t believe serious mental illness exists, but rather that people move in and out of illness and recovery.

I’m not sure what the job qualifications are for someone who heads up a multi-billion dollar organization tasked with coordinating care for people with mental illness. But I’m pretty sure one of them should be actually believing that mental illness exists. What if the head of the Department of Health and Human Services was an antivaxxer whose response to the Disneyland measles outbreak was to tell parents to exercise their free choice and take their kids to measles parties? Would we let that person keep her job? To me, this analogy describes Ms. Hyde’s dangerous position on mental illness, or as she prefers to call it, “behavioral health.”

Make no mistake: we’re in a public health crisis with mental illness, one that is far more serious than the measles outbreak. We need our leaders to acknowledge the scope of this crisis and to take decisive action, now.

That same morning, as I watched the hearing, I received a desperate plea by email. The author has given me permission to share this story with you, though I will not share her name, because this is an ongoing situation. But her story puts a human face on the GAO report and the magnitude of the health crisis that parents of children with mental illness are experiencing.

I hope that Pamela Hyde and all the people who think that mental illness doesn't exist read this desperate parent's plea. I hope Ms. Hyde starts to understand how badly our mental healthcare system has failed children, families, and communities. And then I hope she drinks a smoothie, one of SAMHSA's recommended treatments for behavioral health—and quietly resigns.

A Mother's Story

This is so hard for me. I had hoped and prayed that my daughter’s illness could be handled in private, and I fiercely protected her privacy. I’ve made up all kinds of stories trying to cover up where she is and what she is doing. When something did come out publicly, I put a spin on it because I was worried about how stigma would affect her.

But now her illness has caused her to end up missing for nearly
five days. So now I must tell you what it’s like to live this nightmare every day.

And I want all of you, ESPECIALLY those of you who think you know exactly what you would do if you were me, to SHUT UP AND LISTEN TO ME!

Just shut up NOW! 

Now you may be wondering how we got here. Well, my daughter has been struggling for a long time. While her diagnosis, signs and symptoms as well as the details regarding her disappearance aren’t something  I will share, I will share the following: 

• Self-directed treatments. FAIL. 
• Forced hospitalizations. FAIL. 
• Voluntary hospitalizations. FAIL
• Conventional Treatment. Alternative Treatment. FAIL. FAIL.
• No meds. Too many meds. Right amount of meds. FAIL FAIL FAIL
• FAIL.

I let her go. I hung on. I told her what to do. I backed off. 

I got into her business. I gave her privacy.

I surrounded her with loved ones. I left her alone. 

I attached. I detached.

I encouraged her to get a job. I encouraged her to go on disability.

I went to work to keep myself occupied and give structure to my life, and then I had to quit my job in order to accommodate her illness. 

I spent every dime I had in the bank.  

I researched every illness that could induce such behavior. I took her to specialists.
I was even schooled on boundaries by her and her therapist. I was told that I needed to let HER decide everything. 

Did you know that a person in a state of full-blown psychosis gets to have a say in their treatment?

And did you know that an adult with severe mental illness can exclude everyone, including their caregivers from having access to information?

We were told that the only thing that would work was for her to be admitted to a full time residential facility. However, due to the public facility being booked and our inability to afford the expensive price tag for private care, we had no options except what our insurance would pay. So I confidently looked to our insurance company and trusted that they would pay for her recommended care. 

FAIL. Even though our coverage offers residential treatment, they only approve two to three days at a time. You get the authorization usually at the end of the third day. They normally decline and you have to appeal. And no matter what the doctor recommends, some pencil pushing bureaucrats at the insurance company get to decide whether or not your child is doing better and will approve or deny based on their decision, not the doctor’s. 

Offering residential looks good in the employee handbook, but doesn’t mean much when they can wiggle out of it when they don’t want to pay.

My daughter was doing quite well in her program until they refused to pay after two weeks. 

I contacted dozens of therapeutic communities, farms, and other residential settings from across the country. But the cost of care averaged $10,000 per month. I don’t have that kind of money. 
And all those famous programs you read about, you know, the ones with the slick ads? Try $2,000 per DAY! And they don’t take insurance.

But even if we could afford it, these care facilities won’t take my daughter if she doesn’t want to be there.
And I could NOT make her. I considered conservatorship, but the private facility where she was going would not accept her with it. Like many private facilities, they will only accept a patient who is going there willingly.  

Her so-called "rights" as a patient with mental illness assure her the opportunity to even live homeless if she chooses, no matter how sick she is. Hey, it’s her "choice"!

So last September, with no other options available, I brought her home. 

I hoped and prayed that things were going to continue to get better for her. I watched for signs. Then last week, she started showing signs of decompensation. I had started the process of getting her back to the doctor when it all came crashing down. 

And then she took off for five days. Today she is back safe and in a hospital, but what will happen next is anyone’s guess.

The bottom line is that like many people with severe mental illness, my daughter needs full-time,and if necessary, court ordered residential medical care. You can love your child, but the family isn’t enough when they need constant supervision. And you can allow them certain freedoms, but when they are too ill to make decisions, you need support in forcing them to get care.

I believe full time supervision would have prevented this downturn.

And as much as I believe that Assisted Outpatient Treatment needs to be an option for people with mental illness who are able to remain in their communities, I don’t think in her case that it would work. I was already told that a first request for it would more than likely denied, especially since she had recently agreed to go to therapy and follow protocol. 

My daughter is a highly gifted young woman with a world of opportunities waiting for her, but sadly, thanks to this mental illness, she is now disabled.

For years I have tried to figure out what went wrong. I have analyzed nearly every interaction and I cannot figure it all out. 

And I can sit here all day, with all the other caregivers who live this nightmare daily and blame myself and try to figure out what I could have done differently.

But I can’t figure it out.

I do know that I have loved this girl from the moment of conception, and I cannot fully express to you how bad my heart hurts over this.

But I just can’t save her. I really tried. Our whole family did. 

But nothing works except residential care. 

And I’m hoping that we can access that care for her before it’s too late.

The Anarchist Soccer Mom Goes to Washington

I hope Congress can give themselves a facelift and pass mental
health reform legislation that will help children and families!

Lessons in Speaking Up—and Listening

I’m a mom. What that means for me, as it means for so many moms, is that I rarely think of myself first. When I have to choose between hearing the President of the United States speak in my hometown or picking up my kids from school, I pick up my kids. When I’m cooking dinner, I fix their favorite canned tuna and white rice instead of the lamb curry vindaloo and brown rice I would prefer to eat. Rather than spending money on spa treatments for me, I buy soccer camps or ice skating lessons for them.

But this week, I did something all for me. I bought a last minute plane ticket from Boise, Idaho to Washington, D.C. and flew into the outer edges of Winter Storm Juno to attend the presentation of the well-deserved Treatment Advocacy Center E.F. Torrey Award to Representative Tim Murphy (R-PA), a man I and many other families of children with mental illness view as a hero.

Two years ago, in a gut-wrenching response to the Newtown tragedy, I told our family’s painful story on my formerly anonymous blog. My essay was picked up by Boise State University’s The Blue Review and retitled as “I Am Adam Lanza’s Mother” (thanks, @paleomedia). Overnight, I became an accidental advocate for mental illness, speaking up for families and children everywhere who could not find anyone to listen to their stories. Then I wrote a book, The Price of Silence, telling some of those families’ stories, describing the numerous barriers to care that we face, and identifying solutions that already exist in some communities.

Now, it seems that lots of people are talking about mental illness, and that’s a good thing. But I wonder if people are listening.

Every day, there’s another tragedy in my Twitter feed: a father (or mother) tosses a child from a bridge, a mother attempts to kill herchildren, an estranged boyfriend kills a woman and her daughter, a police officer shoots a 17-year old girl. Every day, hundreds of thousands of people with mental illness suffer on the streets while millions more languish in prison. Meanwhile, states slash mental health budgets, and families continue to live onthe brink, as they did 15 years ago.

Today in his acceptance speech, I heard Representative Murphy offer, once again, a vision of hope. He talked about the need for better options, from early intervention to peer support to assisted outpatient treatment that can keep people with serious mental illness in the community and out of prison. As National Institute of Mental Health Director Thomas Insel and American Psychiatric Association President Paul Summergrad looked on, Representative Murphy encouraged research into new treatments that can help people with serious mental illness live productive, happy lives. He talked about ending discriminatory regulations that prevent people with mental illness from seeing a physical doctor and a mental health specialist on the same day and about expanded inpatient treatment options (instead of jail) for those who desperately need them.

I have to admit that one thing made me especially glad: in discussing his proposed new legislation, it seems like Representative Murphy is listening. And that’s important. But has one advocate noted, the voices of people who have serious mental illness are important too.

How do we hear the voices that serious mental illness has silenced? How do we ensure that we do not merely “bring back the asylums,” as one recent provocative JAMA article proposed, but that we create comprehensive services for individuals, families, and communities?

The word “advocate” means to speak up for something you believe in. But sometimes, advocacy also means respectfully listening to people who disagree with you. That’s a lesson our current Congress needs to learn. I hope that the Capitol’s denizens can repair their rifts (as the building itself gets a facelift) during this next session. It has become very easy in this world of fast information to tune out voices that disagree. But as a scholar and as an advocate, I prefer to surround myself with the voices of people who think about these complex problems in different ways. I do not feel threatened by other advocates who see these problems—and their solutions—differently than I do.

But one thing I think we all agree on is this: the current mental health care system is broken. We see the proof in our suicide and incarceration rates. Barriers to mental health care—however you define it—are massive and omnipresent. As one of my opposition-minded friends noted, whatever you think of Representative Murphy’s proposed legislation, at least he got us all talking about the problem. No bill, however well-intentioned, is ever perfect. But I applaud Representative Murphy for rising once again to the challenge of bringing our different voices together in a clarion call for change and hope. Let 2015 be the year we can listen to each other—and by listening, learn to help each other and those among us who suffer most.

P.S. Thanks to a supportive and amazing spouse who got the kids to school, fixed their dinner, and supported me in this once-in-a-lifetime opportunity. Love you, Babe!

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.

The Great Divide

Hendric Stattmann"The Grand Canyon"

Two bills in Congress, both designed to improve mental healthcare, reveal a growing rift in the mental health community

Like many parents of children with mental illness, I have spent much of my life feeling isolated. At social events or the morning water cooler, while other parents share their children’s accomplishments—“Mary got elected to Student Council! John got the MVP award for his soccer team!”—I am usually silent. It’s hard to brag about how your child was able to plead his misdemeanor battery charge down to a mere juvenile beyond control status offense, or how he was the star patient in his psychiatric ward last weekend, even though both are arguably notable accomplishments.



When I finally spoke out about the struggles my family faced, I found an instant new community of friends, mothers like me who had become vocal advocates for their children’s care. But I also discovered that not every mental health advocate supports the same goals I do. This rift in the very advocacy community that should be supporting parents like me and kids like my son has been growing for a while. The divide has widened even further after the tectonic tragedy in Santa Barbara, when a young man whose parents had sought treatment for his mental illness for years took his own life—and the lives of six other people.

At its center is a disagreement about serious mental illness—schizophrenia, bipolar disorder, and major depression—and the best ways to care for this vulnerable population. That disagreement is evident in the contrast between two proposed bills that both seek to remedy America’s broken mental health care system. To my mind, the biggest difference between the two bills is this: one treats people with serious mental illness. The other does not.



One of the most controversial features of Representative Murphy’s HR3717, the “Helping Families in Mental Health Crisis Act,” is its Assisted Outpatient Treatment requirements, which the opposition has labeled “forced treatment.” Yet even Representative Barber, the author of the second bill, acknowledged on Monday’s Diane Rehm Show that “involuntary treatment is necessary from time to time.” And many of the provisions in HR 3717, including a revision of HIPAA laws, might have stopped Jared Loughner before he shot Rep. Barber in Tucson.



Dr. John Grohol and others like him are worried about “arbitrary distinctions” in mental illness he says HR 3717 creates. I agree with Dr. Grohol’s point that all mental illness can be crippling or even deadly, just as a cold, if left untreated, can lead to fatal pneumonia. But I also think we do need distinctions in mental health, just as we have them in physical health. The current focus on behavior rather than organic brain disease is the real challenge in making sure that people with serious mental illness get the medical care that they need. As I mentioned in an earlier blog post, “Oh SAMHSA, Where Art Thou?” there is no readily apparent or useful information for me, as a parent of a child with serious mental illness, on SAMHSA’s home page. And this is the government agency tasked with providing resources to people with mental illness!



As I read the opposition’s often vitriolic attacks on mothers like G.G. Burns, a friend of mine who shared her family’s painful story with Diane Rehm yesterday, I’m reminded more of religion than science. We have this very human tendency to rely on our own belief systems about the mind, and especially about our ability to choose and to be accountable for our choices, rather than looking at the choice-stealing reality of brain disease. G.G., in talking about her efforts to get treatment for her son, told a harsh truth: “We are forced to watch our loved ones die with their rights on. Without help, there is no hope.”



The comments section of Diane’s show demonstrates the wide variety of challenges parents continue to face, and why so many of us are still afraid to share our stories. We have the mental illness deniers, the Mad in America anti-medication crowd, the folks who blame our bad parenting, the consumers who think that everyone with mental illness can seek treatment and recover like they did, and the E.F. Torrey haters (and boy, are they an angry bunch! They should try some SAMHSA sponsored yoga!).

Still, I think that a robust discussion about HR3717 is a good thing. Task-oriented conflict can ensure that the end result—fixing our broken mental healthcare system—is the best it can possibly be. And certainly the experiences of people who have experienced involuntary commitment need to be carefully considered (see this powerful essay at "The System is Broken," for example ). I wish Diane Rehm had included the voices of people with serious mental illness on her show.

But when we rely on our belief systems about what mental illness is (or isn’t), when we retreat to our anecdotal or lived experiences rather than considering other points of view, it can be too easy for the dialogue to devolve into person-centered attacks rather than focusing on productive, inclusive solutions. We don’t have time for any more of that kind of talk. The consequences of inaction on mental illness are unacceptable. We cannot continue to treat serious mental illness in prison, or to ignore it on the streets. That’s why I support HR 3717.

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.