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.

Singing to End Stigma

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

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

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

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

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

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

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

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

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

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

The Price of Silence

Dear Friends,

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

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

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

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

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

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

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

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

 

Only when love and need are one, 

And the work is play for mortal stakes

Is the deed every really done

For heaven and the future's sakes.

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

Best to you all!

Liza

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

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

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

Knock Knock, Who's There?

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

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

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

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

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

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

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

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

“Yes,” I replied.

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

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

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

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

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

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

Revising HIPAA Laws and Medicaid Reimbursements

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

Providing Alternatives to Institutionalization through AOT

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

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

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

“Which did you prefer?” I asked.

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

Restructuring SAMHSA funding

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

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

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

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

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

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

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

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

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.