Oh SAMHSA, Where Art Thou?

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Morning Zen Guest Blogger ~ Liza Long

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.” 

A New Kind of Stigma 
Well, to put it bluntly, if that’s its mission, SAMHSA sucks. 

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. 
jail3Why 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: 

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.
 

liza

Liza Long, aka the Anarchist Soccer Mom, is a writer, educator, mental health advocate, and mother of four children. She loves her Steinway, her kids,and her day job, not necessarily in that order. Her book "The Price of Silence: A Mom's Perspective on Mental Illness" will be released by Hudson Street Press in August 2014. The views expressed on this blog (originally featured on the Anarchist Soccer Mom) are entirely her own and in no way reflect the views of her employer (or anyone else, for that matter).

Comments

  1. Karen McGravey-Gajera's avatar
    Karen McGravey-Gajera
    | Permalink
    I love that you "tell it like it is"! We need more of you, of us, to speak out with the truth. Like you, I live with depression and meds & self care have helped me. Also like you, my son does not get better. He lives with Schizophrenia, now for over a decade! I am lucky that we have always been able to get him to the hospital, as his personality has always been very laid back. However, like many folks living with this illness he suffers from the symptom of Anosognisia (sp?). The symptom that he does not know he is ill! Everyone does not "recover". He has never seen anyone in recovery, as the only connection to others like him are met in the psych wards, as he stays at home and isolates for fear the demons he lives with do not latch onto others! People across the nation have rallied by the thousands in the street over recent police shootings. Where are all the folks like us? We count in the millions! I could never understand why we aren't screaming in the streets for our children? For folks who say it is getting better are only partially correct. Yes, folks are not being stuffed into hospitals, but they are stuffed into jails or even worse, into the streets! My God! The time has come to stand up and be counted! To use the voice and the opportunity we have to make REAL CHANGE HAPPEN. I love someone with a mental illness and I will post it everyday on my Facebook. There is no shame in this house. Let's get loud too!
  2. Linda's avatar
    Linda
    | Permalink
    Liza, We are a family going through this with our adopted daughter, I truly appreciate you writing how we feel on this very fact. The State believes their mental health care treatment inside residential programs is better than our daughter living within the community. Yes, my daughter does have behavioral challenges in all environments. The huge oversight was DHS did not want to work together with meeting and making sure the child's needs were being met, DHS wrongfully gained jurisdiction and forced their treatment, demanding it was our only choice for her to get better. There were no charges, they just removed her!

    My daughter has severely regressed,harmed herself and other adults while under their care,ran away in multiple attempts to get home and attempted suicide. All the while her GAL maintained she was safe! She was abused by sexual assault, one adult staff, several residents and neglected, all while under the State's care! She has been moved 5 times due to abuses and other violations and her traumas were so bad she could not let her pain out until she felt safe back at home. She came home for 3 weeks and ended up back in the hospital for severe behaviors. Our children are NOT safe once the State has control. I am appalled by the dangereous situations my daughter had experienced. My daughter was orphaned before the age of 3 and developed RAD, both bio parents have BiPolar and an impulse control disorder. She now has chronic PTSD, severe depression, a 3rd grade education and she will be 14 years old soon! Her IQ was 86 before DHS removed her almost 3 years ago and reunification has been the plan since day one! The State has tortured my child and all she wanted for Christmas was to be home forever.

    Does HB 3717 reflect families raising their children in their own homes and the services to provide in home services? Services such as: safety components, respite, community living services, therapy that meets the direct needs of the child, tutoring, mentor, recreational or social needs? Does this Bill reflect privacy and confidentiality of the recipient, so neighbors view services as welcome and receptive? Does it include surveys of consumers and secondary consumers where they mail in their responses to a secure unbiased data collection source?
  3. Joan's avatar
    Joan
    | Permalink
    Liza,
    Thanks for such an enlightening article. I will definitely read your book.
  4. Mary Murphy's avatar
    Mary Murphy
    | Permalink
    Thank you Liza Long for speaking the truth. Lives depend on your message being heard far and wide.
  5. Elizabeth's avatar
    Elizabeth
    | Permalink
    I do not have children, but your article is compelling. I just pre-ordered your book. I look forward to reading it.
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