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.

5 Real Ways to Combat Mental Illness

The brain is the mind.
Photo courtesy of Cabeza Rapada,
www.freeimages.com

(Hint: One of Them Isn't Calling It "Mental Health")

Every morning, I wake up to an inbox with messages like this (identifying details changed):

"I just read your piece titled 'I am Adam Lanza's mother.' It rang true to me in every way. My son is 10 years old and he has been in 12 different schools, four behavioral centers and continues to get worse. He talks openly about how he is going to kill us all. He hides knives in his room, attacks, steals, screams profanity."

Or this: 

"I've been diagnosed with depression, anxiety, panic disorder, PTSD, Intermittent Explosive Disorder, Bipolar, and I'm recovering from drug/alcohol addictions. I have never been able to see a quality therapist or psychologist. One time I found one that I liked and then stopped going because my insurance changed. The mental health care system in this country is appalling."

Or this:

"I have experienced aspects of what you are writing about with a sibling who has bi-polar--extreme depression and suicide attempts. In fact she's been in ICU for the past two weeks, so my other sister and I continually search for answers in how best to care for her."

Or this:
"I never know how to tell people how scared I am. Right now I am well controlled with medication but I am terrified. What happens if my meds stop working and I can't control myself?"

And then, as I'm searching the Internet for real solutions to help my friends, my HuffPost mental health alert sends me this: "5 Real Ways to Combat the Stigma around Mental Health." 

Apparently, a bunch of experts got together and came up with some suggestions for ending stigma. The problem is that they're the same suggestions we've been hearing for 20 years now. And the stigma needle, despite all this anti-stigma talk, is not budging.

I'm all for ending stigma, especially the self-stigma that keeps parents from asking for help or consumers from feeling okay about their medical treatment. As an example, I just had a conversation with a friend who has bipolar disorder. She admitted that she felt bad that she had to take medication to manage her condition. 

"But when I don't take my meds, I don't feel like me," she said. "Plus, my life starts to fall apart. I like this me, the 'me' that is in school, working, making a better life for myself. But I feel like I should be able to manage this on my own, without meds."

My jaw dropped. I have hypothyroidism. I have never once felt guilty for taking my daily thyroid medication or thought that I ought to manage my thyroid condition "on my own, without meds." 

You know what might end the stigma of mental illness? Treating it for what it is: illness.

While the experts talk about mental health, here are my suggestions for five real ways to combat mental illness:

1. Make early intervention a top priority. Pediatricians should all be trained to include mental health questions in well child visits. Shocked that a child of 5 might express suicidal thoughts? I know hundreds of families who have had that experience. The earlier we can get children and families help, the more likely they are to manage the illness and lead productive lives. And new care models developed at Yale University suggest that intervention right after first episode psychosis can improve long term outcomes for young people with schizophrenia. 

2. Train more psychiatrists and increase access to care for people with mental illness. Instead of teaching community leaders to look for signs of depression, we should be focused on training a workforce that is competent and capable of delivering evidence-based care to people who need help. The shortage of psychiatrists, especially those who work with children, is a real and growing problem.

3. Stop saying "mental illness," and start saying "illness." I'm not suggesting that we should stop talking about mental health, by the way. But serious mental illness is physical illness. Mental health is important to everyone, and people with any type of chronic health condition are at greater risk of depression . But as long as we keep artificially separating serious mental illness and serious physical illness, stigma will remain, and true parity will never be achieved. People will continue to think that mental illness is a choice or a character flaw.

4. Listen to families and provide them with actual support. Maybe you saw the story about the Virginia mother who is prepared to face child abandonment charges rather than bring her 12-year old son home from jail.  The comments on this story show just how pervasive this problem is. People who aren't living this experience seem to think that there's some place we parents can go to get help for our children. Some of us jokingly refer to this place as "CandyLand." 

5. Enough talk; it's time for action. We are getting really good about talking about mental illness. I have no problem telling you that I was treated for depression. My son, who has bipolar disorder, has no problem telling strangers in the grocery store checkout line that lithium has completely changed his life. It seems like every day, a celebrity or athlete shares his or her struggle with mental illness. And that's a good thing. But what about those whose voices aren't being heard? What about the people in prison, or living on the streets? When will we stop talking and take action to help them? Peer support is a good start, but some of us need more. Assisted Outpatient Treatment is one community services program that has enabled people with serious mental illness to live in their communities and stop the revolving door of incarceration and homelessness. 

I'm tired of hearing stories from suffering families. It's time for the experts to sit down and have a real conversation about mental illness and how we, as a society, can offer them help and hope.