Saturday, July 26, 2014

Knock Knock, Who's There?

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

Thursday, July 24, 2014

Pioneer Day

Celebrating my roots by letting go

My Pioneer Day outfit, circa 1978
On July 24, 1847 (as every young Mormon child knows), Brigham Young and an advance party of brave pioneers entered the Salt Lake Valley in what would someday (once the Mormons officially renounced polygamy) become the state of Utah. “This is the right place,” the prophet declared, evidently unaware that the California coast was just a few mountain ranges away. The Mormons, my people, exiled from their homes in Nauvoo, would build a new Zion in the shadow of the Wasatch Mountains and celebrate every Pioneer Day with picnics and parades.

This year on Pioneer Day, I sent a two-page letter by certified mail, return receipt requested, to my Mormon bishop, a man I have never met, requesting that he remove my name from the church records. Elaborating on a template I found here, I wrote:
I am taking this formal step as a direct result of your (not my) church’s decision to excommunicate Kate Kelly. A church that cannot allow good women to ask legitimate questions without fear is not the place for me. I am aware that according to church doctrine this cancels all blessings, baptisms, ordinations, promises, covenants, and my hope of exaltation in the Mormon celestial kingdom, and I have made my decision with that consideration well in mind. The Mormon version of heaven is not something I could ever look forward to as a woman. Please do not have anyone from the church contact me to try to change my mind.
Why now? For years, I lived comfortably in the ambiguous space of inactivity, accepting welcome plates of brownies, joking that I am now in a polygamous marriage to my remarried Mormon ex-husband while I have never been married in the eyes of my new Catholic faith (I had my Mormon marriage annulled). I never took the formal step of resigning from the church because I told myself it just didn’t matter that much to me.

The truth is that I left the church a long time ago, first mentally, as I had to face the growing cognitive dissonance that left me feeling broken and inadequate, then physically, as I drifted away to things that were more spiritually meaningful to me. As a practicing Mormon, I found that no matter how hard I worked or prayed, I simply did not feel a reassurance of a loving God. I did not have a testimony that Joseph Smith was a prophet. And I really didn’t think being Mormon was much fun. “If this life is all we have,” I thought to myself in 2007, realizing that I really did believe that, “then I’m wasting it.”

Kate Kelly’s excommunication was the catalyst for me to finish what I started so many years ago, when I found myself sifting through the ashes of a refiner’s fire I had never expected—my longed-for temple marriage broken, my faith destroyed. The reason I stayed active for so many years before my divorce, judging people who drank coffee, telling myself that a testimony would be the reward for obedience to rules that made no sense to me, was because of fear, not love. That fear kept me in the church for several years.

In 1993, I was a junior at Brigham Young University. One of my favorite professors, Cecilia Konchar Farr, was fired that summer, in part for supporting a woman’s right to choose. In September of that same year, six prominent Mormon intellectuals were called before church disciplinary courts and excommunicated for speaking their minds, for talking about the possibility of a Heavenly Mother, or for telling the truth about Mormon history. Joanna Brooks has written in excruciating detail about this experience and how it affected young Mormon feminists in her must-read memoir, The Book of Mormon Girl 

I heard the message the LDS Church sent then to women with doubts like mine. Get with the program, or get out. I stopped writing anything other than ward newsletters. And I got with the program—marriage, babies, ward callings, temple service, staying home to raise the children—for 13 long years.

I don’t regret the babies (now growing into lovely, independent people). I do regret all the rest. Like many who have left the Church, formally or informally, I feel betrayed by my former religion. That sense of betrayal is likely something that I will struggle with for the rest of my life.

Still, it’s no easy thing to leave the faith of my fathers. Like most people born into the Mormon church, I will never really be able to leave everything about that faith: so much of who I am was shaped by its culture and customs. And there are some things—the focus on family, the self-reliance, the way Mormons take care of their own in times of need, and of course, the music—that I continue to admire.

I am also tremendously grateful for the few church members who have remained my friends through my faith transition, and for the Kate Kellys of the world who continue to fight from within for what they believe is right. “Do what is right, let the consequence follow” was one of my favorite hymns when I was a child. I tried then—and I try now—to follow that advice. It’s just that I no longer believe that there is one right path for everyone, or that the bright-line path of Mormonism was right for me. The easy answers the church provides are no substitute for the hard questions I now ask myself about meaning and happiness. 

That's why I am joining other Strangers in Zion this Pioneer Day to declare that the Mormon church is not the right place for us. But that doesn't mean it's not the right place for you. One of my frustrations with the faith is the "us vs. them" mentality born in the persecution of the church's beginnings, the desire to be separate that drove the pioneers to seek safety in the mountain West. But this separateness does not always support the goal of building the Kingdom into a worldwide church.

The response of many faithful Mormons to Kate Kelly's personal tragedy was not Christlike by any measure. She was not a money changer in the temple. She is a faithful wife and mother in Zion. As a Mormon who chose to leave, I still remember the excuses I told myself when I watched others slip away. "It must be sin." Or "S(he) is too proud." Or "It's a pity s(he) would give up eternal salvation just because someone offended him/her." Or in the case of someone like Kelly, "What a tragedy that Satan has influenced him/her."

Maybe it's none of those things. Maybe people have genuine spiritual experiences that cause them to question their faith. I think most of us have these experiences. Some stay, ultimately finding peace and fulfillment in the Gospel. Others leave, finding peace and fulfillment in something else. But denying the validity of a person's experiences, or whitewashing the truth about your religion's doctrines, is not a good template for sustaining long-term membership in the club.

On this day, I celebrate my pioneer ancestors--their courage and faith in giving up one life to seek a better one in the Kingdom of God, "far away in the West." And I celebrate the heritage that gave me the strength to take my own spiritual journey. In the words of that still-dear Mormon pioneer hymn, "Happy day! All is well."