Monday, January 19, 2015

Liza Long - "Mental illness is not a choice. But hope is."

Powerful words written today by The Anarchist Soccer Mom and author of The Price of Silence: A Mom's Perspective on Mental Illness  

All across the US, we are at a loss for words, as we share the sad news of our friend and Tb4T advocate Laura Pogliano's son tragic passing. Liza has helped us find the right words. WORDS do matter. Many times wishful thinking to decrease stigma, actually discrimaintes against those who need help the most.

My heart hurts today. My friend Laura Pogliano has lost her 22-year old son Zac, who had paranoid schizophrenia. Both Laura and Zac were tireless and passionate advocates for ending the stigma of mental illness. Their story was featured in USA Today's "Cost of Not Caring" series, where Laura described herself as a "fortunate" mother--fortunate because despite personal bankruptcy, she had been able to obtain treatment that seemed to be working for her son. This tragic turn reminds all of us mothers just how fragile life is for our children who have serious mental illness. As a parent of a child with bipolar disorder, my worst nightmare is what happened to Laura and her son.

There's a popular quote floating around mental health advocacy circles: "Mental illness is not a choice. But recovery is." I know people will disagree with me, but today, I'm tired of that sentiment, and I wish we would retire the word "recovery." When local and national mental health policy is shaped by high-functioning consumers who have been able to manage their illnesses rather than by the sickest patients and their families, it's the equivalent of only allowing stage 1 cancer survivors to drive the narrative and take most of the funds. While their courage is admirable and their struggles are genuine, too often, we lose sight of those who are suffering the most. They become invisible to us, marginalized on the streets or in prison. Or they die young, like Zac.

I wish we would stop talking about recovery and replace it with a more useful, less stigmatizing word: hope.

Here are five reasons I wish we would stop using the word "recovery" for serious mental illness. 

Read Liza's 5 reasons here:

Sunday, January 4, 2015

Behind the Gates of Gomorrah: An Insane Situation - interview by Julia Robb

A new book was recently published by Dr. Stephen Seager. Below are a few of my favorite quotes from an interview with Julia Robb.
"Here’s some figures: 1% of the population everywhere on earth is schizophrenic so in the US that’s 3.25 million people of which maybe 1 million or so are paranoid.
There are 50,000 state hospital beds nationally.
The real question is why aren’t they in mandatory out patient treatment?
When I said that people don’t care about the mentally ill, I wasn’t kidding. The reason foreign doctors are over represented at state mental hospitals is because most American doctors won’t do it. It’s the same reason inner city clinics are populated by international physicians as well.
 Americans don’t care about the mentally ill, so we have out-sourced their care."

Read the entire interview here:

Thursday, January 1, 2015

"Shot in the Head”, by Katherine Dering - Brutally honest, can't-put-it-down-kind-of-book

By G.G. Burns, Book Review

I just finished an incredible book, "Shot in the Head”, by Katherine Dering about the Flannery family and the life and death of their dear brother Paul. Paul is blindsided by the onset of Schizophrenia in his late teens and like other families the disease impacts the entire family unit.  

Katherine does as excellent job describing the devastation we feel with raw emotion that puts the reader in the shoes of Paul as he is "institutionalize", then later released to a world of insanity much worse than his disease. 
"While picking up the pieces after Paul's Mother died, Katherine (and her eight siblings) learned how dysfunctional and fragmented the "mental health system" is. Along the way, her perception of her ill brother, Paul, changed as well."
Over the past 10 years, I have read dozens of books about “living” with serious mental illness, some by psychiatrists or psychologists, others by research scientist, family members or individuals impacted themselves. In all the books describing tragic deaths or suicides, none touched me in the way "Shot in the Head" did.

Perhaps it was because I had just left my fagile 84-year old Mother, who like Paul in his final days suffered with cancer in a nursing home. 

My Mother suffers not only with dementia, depression and social anxiety that has paralyzed her much like horrible neurological disorder, but she has also survived breast cancer this year. For years, she lived in fear of "what if a bad thing happens" and now it has. Just as Paul believed he was James Bond or he had been shot in the head. 

Another reason this book was so impactful, my son is surviving his serious brain disease with "no treatment" due to his civil rights to say no! Like Paul, he too believes he works for the FBI. 

I began reading the book on my flight home from Washington, D.C., in early September after attending the national NAMI conference, where I was delighted to meet both of Paul’s sisters, Katherine and Ilene. I believe our paths have crossed over the years for a positive reason, as I know Paul’s story will help mental health policy to change one day.

"Shot in the Head" also allowed me to develop humanity for those dying a slow painful death with “mental illness” and how at times we need hospice care, just as dying slowing with cancer. It brought me to tears and laughter   sometimes on the same page.

As soon as I read the last page, I wrote a note to Paul’s sisters on my iphone as my husband and I traveled north to Kentucky on I-75. My first message: “Thank you for writing your eloquently written memoir and for sharing Paul’s story.” My second message: “Thank you for inspiring me (and hopefully others) to write about the challenges we face."

The writing of Paul’s story inspires me to attempt the unthinkable  to write a book about my son because his right to deny treatment trumps his health. It will be a story of anosogosia or lack of insight of ones own illness is definitely not something one can easily find on a shelf or online.

Bravo to Katherine and Ilene for their efforts to help families like ours by creating Paul’s Legacy Project and for writing, "Shot in the Head"

It is a must read. 

Sunday, December 28, 2014

Anne Francisco's grief and her memory of her son ... will help others

Guest Blog post by: Anne Francisco

Did you know? The American Civil Liberties Union (ACLU) fought for the rights of those with mental illness to refuse medication to treat their illness. Josh would never have refused treatment for a major debilitating illness or injury that was located below his head. But his brain, comprised of millions of working parts, was malfunctioning. He was unable to understand that he had a brain disorder. So he refused treatment. His probation officer felt Josh's psychosis put him at great risk of hurting himself or someone else. This was just after Adam Lanza, the seriously ill young man, killed his mother first and then 20 children and 6 adults at Sandy Hook Elementary School in Newtown, CT. So the PO had Josh brought back to St. Louis, where she was sure he could get the treatment he needed. So he was taken away by police in Merced to a jail where he was punished for his anger by having to sleep the first three nights without a mattress. 

The state of Missouri sent two of their officers to California to pick him up and accompany Josh back to St. Louis where he was put in jail. It took TWO MONTHS for a psychiatric bed to open at the state psychiatric hospital where he was put in the forensic unit to await evaluation, which took 30+ days. Because he still had the right to refuse medication, Josh refused it. Paranoid and delusional, several weeks after he arrived at the hospital he used the patient telephone to call his ex-wife who reported the calls. When the evaluation was completed the judge signed an order forcing Josh to take medication which he did for 8 more months until he regained mental competency. His psychiatrist at the state hospital has told me that Josh had major depression and should have had electrotherapy treatment. When I asked why he didn't receive that treatment while hospitalized, he told me that it wasn't the hospital's job to provide treatment. 

Their responsibility was to make sure Josh regained competency. That meant forcing powerful antipsychotic injections which made Josh feel like a zombie. He had uncontrollable movement in his muscles, along with other undesirable side effects. When Josh regained competency after 9 months of being psychiatrically incarcerated, he was returned to the jail where he waited another four months for a hearing, and again exercised his right to refuse medication. If he'd been able to reapply for his Social Security Disability benefits to start BEFORE he left the hospital, he could have transitioned almost immediately to a supported housing facility which provided wrap around services to begin his recovery. When the place found out his SS hadn't been restarted they refused to take him. Because he refused medication, group homes and halfway houses refused to take him as well. THERE WAS NO PLACE FOR HIM TO GO so the judge sentenced him to prison for the phone calls he'd made while UNTREATED IN THE PSYCHIATRIC HOSPITAL. You know the rest of Josh's story which ended in tragedy when he lost all hope and saw no way out of the madness of CRIMINALIZATION that had trapped him BECAUSE HE WAS ILL.

Please remember Josh's story when Rep. Tim Murphy, the only psychologist in The U.S. Congress , reintroduces legislation in 2015 that would bring comprehensive reforms to mental health care and policy. I pray that Josh's suffering which directly resulted from the dire state of affairs for all who suffer from serious mental illness and lack the capacity to know that they need treatment will provide a clarion call to our nation's lawmakers and the people who elect them into office (that's you and me). I hope his story and the stories of so many other hurting people and hurting families will result in actions that will restore hope and life to others in the years to come. PLEASE get involved in helping to rewrite the future for others. That would bring honor to Josh's life and provide a measure of dignity to his death. Thank you all for walking beside us as we grieve the loss of Josh, a person who deserved treatment but got punishment.

My Son Killed Himself: Josh Deserved Better!Josh_Sales Specialist-1

Read Anne's story here:

Wednesday, December 17, 2014

Mental illness is the only illness that has an age limit for care: By Leisl Stoufer

Like Cody, at age 17 our son was in recovery due to early interventions and treatment that worked; plus supports and resources! 10 years later, we're surviving the broken system nightmare due to his rights to say no and a serious condition called anosognosia!" gg
original (3)

One Year Away: A Mother’s Fear

By Leisl Stoufer

Today is his birthday and just like every kid on their birthday, Cody is excited.  He is growing up  and he knows he is  just one year away from the magical age of eighteen.  Eighteen. When Cody thinks about eighteen, he sees independence and the  freedom to make his own choices. He sees nothing but promise as he imagines the possibilities for his future.  Today he’s just one year away. For Cody this is a very happy day.

Today our son, Cody, turned seventeen.  Seventeen.
I wish I felt the same.
On one hand I do.  I  see promise.  For the first time in several years, Cody is doing well in school, he has started a part-time job so he is gaining work experience, and he is considering what life will look like after high school.  Cody is thriving. There is definitely promise.
But on the other hand, I feel dread.  Fear rises in my chest and tears sting my eyes.  I am scared. I am sad. I am angry.
Today we are one year away.  This is it.  We are running out of time.
Cody suffers from mental illness. 

Sunday, December 14, 2014

2 years since Newtown and still no changes!

By Kathy Day

December 14, 2014

Two years ago today, a young adult with untreated mental illness killed his mother, and then drove to the elementary school that he attended when he was a child. He opened fire in a classroom, killing twenty children and six staff before turning his weapon on himself.

After that terrible tragedy, our elected officials vowed to make changes in our system so that this would never happen again. 

Those changes have not been made.

We have had 44 school shootings since the Newtown tragedy (as of June, 2014 according to CNN).


These tragedies are preventable. 

It's not only schools that bear the brunt of our dysfunctional system. There are many unseen tragedies of smaller proportion. Law enforcement officers often kill people with untreated mental illness when they are in crisis. On average, 40,000 people take their own lives each year, due to mental illness. It's estimated that 2/3 of homeless people have untreated mental illness and 1/3 of those incarcerated.

Years ago, there was an outcry to move mentally ill people out of the psychiatric hospitals and into the community. What a noble idea. But the community wasn't ready for the influx of people who need support. The laws changed, making it more difficult for families to get help for their loved ones. We have arbitrary 72-hour holds for people who do get hospitalized, but that can be appealed in front of an administrative law judge.

The LAW is all over the place in these mental illnesses, but in NO other illness is it so prevalent. Judges often make the call about whether or not a person with mental illness needs medical treatment, frequently going against the advice of the medical doctors. This must stop. We are supposed to be more civilized than this.

We need to bring dignity to people with mental illness and treat them when they are too sick to seek help on their own. We do that for people who are brought into the ER unconscious and unable to speak for themselves. We do that for people with dementia.

Why don't we allow the same dignity of a Right2Treatment for people with severe mental illness?

What we need is Treatment Before Tragedy and #‎HR3717.

We needed this two years ago. We've wasted two years arguing about which party has the better plan. We've argued that people have the right to be homeless and psychotic.

The bottom line is that everyone has the right to receive treatment so that they can enjoy life and be productive. We should at least try, shouldn't we? 

How better to honor the children who have died at the hands of someone with mental illness?  We all have to work together. Mental illness has been said to affect 1 in 4 Americans. I disagree. It affects all of us in one-way or another. 

Let's speak up and change the system!

Wednesday, December 10, 2014

Rep Murphy Announces Opposition to Government Funding Measure

Thank you Congressman Murphy for not giving
up on families who need treatment before tragedy!

Murphy Pledges to Keep Fighting For Families in Mental Health Crisis
Announces Opposition to Government Funding Measure
For Immediate Release: Wednesday, December 10, 2014
Contact: Brad Grantz, 202.225.2301

(WASHINGTON, DC) — Congressman Tim Murphy (PA-18) released the following statement today explaining one of his many concerns with, and why he will oppose, the $1.1 trillion government funding package expected to be voted on in the House of Representatives tomorrow:

“Access to evidence-based treatment significantly improves the lives of those with serious mental illness and brain disorders. I am disappointed the Assisted Outpatient Treatment program was not funded in this spending bill. Authorized by Congress and signed into law by the President this year, AOT is a life-saving program to help patients and families in mental health crisis for whom the alternative has been a revolving door of jail, homelessness, victimization, and violence,” said Rep. Tim Murphy.

“What we need is treatment before tragedy. This bill continues to fund the tragedy side and not the treatment most needed for the severely mentally ill. Instead of continuing to fund the status quo of failed and wasteful SAMHSA programs, money for prisons to incarcerate the mentally ill, and homeless programs for those with brain disease who live a life of misery on the margins of society under the worst of conditions, there are models of tremendous success across the country we could be investing in like Assisted Outpatient Treatment.

“AOT empowers families and treatment providers to work together so patients can function in the community with the highest degree of independence. I’ve met with countless family members from across all corners of our country who have the unconquerable courage to fight the stigma of serious brain disease and never given up hope to find care for their loved one in our broken mental health system. They inspire me every day and I remain steadfast in my commitment to achieve meaningful mental health reforms in Congress on their behalf.”

Background on the Assisted Outpatient Treatment Grant Program for Individuals with Serious Mental Illness:

Section 224 of the Protecting Access to Medicare Act (Public Law 113-93) authorized an Assistant Outpatient Treatment (AOT) program. AOT is a successful alternative to long-term inpatient care for those with mental illness cycling through the system but never receiving needed care. AOT has been proven to save money for state and local governments by reducing the rates of imprisonment, homelessness, substance abuse, and costly emergency room visits for individuals with a persistent and serious mental illness.

AOT is a component of the bipartisan Helping Families in Mental Health Crisis Act, which Dr. Murphy authored following a year-long investigation into the nation’s broken mental health system. Nationwide support for his legislation to grow from newspaper editorsphysicians, and parents of children with mental illness. The legislation includes provisions to increase hospital beds and proper care while decreasing criminalization for people with serious types of mental illness; reform the Health Insurance Portability and Accountability Act (HIPAA) and Family Educational Rights and Privacy Act (FERPA) to increase family access to information and eliminate barriers to communication between families and providers; permit federal Medicaid dollars to be used to pay for acute inpatient psychiatric treatment by creating an exception to the current Institutions for Mental Diseases (IMD) exclusion in Medicaid; expand effective Assisted Outpatient Treatment (AOT) services; increase funding to the National Institute of Mental Health (NIMH); re-appropriate the budget of the federal Substance Abuse and Mental Health Services Administration (SAMHSA) to increase support for programs designed to help those with the most severe cases of mental illness.

Beginning this January, Rep. Tim Murphy will enter his seventh term representing Pennsylvania’s 18th congressional district, which encompasses suburban Pittsburgh and parts of Allegheny, Washington, Westmoreland and Greene Counties. Rep. Murphy also serves as a Lieutenant Commander in the Navy Reserve Medical Service Corps as a psychologist treating Wounded Warriors with post-traumatic stress and traumatic brain injury. Prior to serving in Congress, Dr. Murphy, author of “The Angry Child” and “Overcoming Passive-Aggression,” was a practicing psychologist specializing in child and family treatment.