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.

If Only Mother’s Day Were Every Day

Thoughts on why the day doesn’t mean that much to me

The Other Happiest Place on Earth

Every year on Mother's Day weekend for as long as I can remember, the kids and I have packed the Suzuki full of tents, sleeping bags, sleds, and s'mores fixings for our annual camping trip to Bruneau Sand Dunes State Park. The sand dunes are the largest freestanding dunes in North America, and they are one of my happy places, full of good memories. We hike on the sand, chasing (and sometimes catching) lizards and snakes. We cool off in the lake and try to avoid fire ants. We join other families in hiking up one of the smaller dunes and sledding down. At night, we wait our turn to look through the giant telescope at star clusters and galaxies hundreds of light years away.

Then there are the two largest dunes, the park’s main attraction. In the early evening when the air is cool but the sand is still warm, we hike the big dunes. It's not an easy hike, as anyone used to sand will know. You have to plant your feet, go slowly, and expect some sliding. But when you reach the ridge and can see miles of Idaho countryside greened by spring rains, the silver ribbon of the Snake River in the distance, and sweeping skies that feel like falling in love for the first time, it's all worth it. We pause for a moment to rest before the real fun begins. Once we have hiked the length of the ridge back to the trail head, we leap in giant strides, like moon walkers, then fall and roll, laughing and screaming with pure joy.

But back to the holiday at hand. Part of the reason I usually leave town is that I'm uncomfortable with Mother’s Day and always have been. When another friend expressed similar discomfort on her Facebook page this weekend, as everyone else was posting pictures of their wonderful mothers, I snarked, "Mother's Day. AKA Guilt Trip Day. AKA ‘Just pay me the same as a man and skip the flowers’ Day.”

We decided not to go this year. A forecast of rain, hail, and frost kept us Boise-bound, safe and warm, watching Minecraft videos on You Tube. Plus, physical ailments--hemorrhoids and that wonderful monthly bleeding, designed by their very nature to remind me of motherhood—made the trip seem less appealing for me; I was more inclined to enjoy “my” day with a glass of wine and a bottle of Vitamin I (ibuprofen) close at hand. 

I also used the weekend to re-establish control of the dire laundry situation, which had come to resemble that Star Trek episode where the cute little Tribbles start reproducing until there’s no room left on the Enterprise. After 13 loads washed, folded, and put away, I am proud to say I have everything under control except the socks—and that’s okay, because I raised my kids to think that mismatched socks were the epitome of coolness, a fashion statement rather than a faux pas.

The fact that I'm not fond of Mother's day does not mean I don’t love my mother. My Mom is one of those remarkable people who seem quiet enough when you first meet them, and then you learn that she raised six kids after her husband died of cancer, has two Masters degrees, loves to write and direct children's theater, can build a house from the ground up, and hiked to the top of Mt. Whitney at the age of 64, mainly (I think) because she wanted the summit photo as her Christmas card picture.

Maybe it’s my Mom who taught me not to be comfortable with Mother’s Day. From an early age, I was sensitive to the following groups of people who shared my gender:

1. Women who are not mothers, for whatever reason.
2. Women who are raising their children on their own, for whatever reason.
3. Women who have lost a child or children, for whatever reason.
4. Women who have lost their own mothers, for whatever reason.   

For all these women, Mother’s Day can bring more sorrow than it does joy. And instead of passing women-friendly legislation, or putting more women on corporate boards, or electing more women representatives, or fighting for women’s reproductive rights, or passing living wage laws that mostly help single moms, or helping mothers with families in mental health crisis, we relegate the whole “Mother” thing to a single day characterized by sappy cards and Champagne Brunch. (Not that I am complaining about the Champagne Brunch, mind you!).

We’re going to Bruneau next weekend. The forecast promises sunny skies and clear night for star gazing. As I look at those star clusters, millions of light years from earth, I’ll think about how far we still have to go to make every day a Mother’s Day. And how grateful I am to share my happy place with four children who gave me 13 loads of laundry, hemorrhoids…and so much more. 

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.