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!

Read Anne's story here:

http://www.peteearley.com/2014/11/04/son-killed-josh-deserved-better/

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

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. 

Read more here on the Tb4T website: http://treatmentbeforetragedy.wordpress.com/2014/12/17/aging-out-of-treatment-a-mothers-fear/

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).

FOURTY-FOUR!!!

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!

Rep Murphy Announces Opposition to Government Funding Measure

Thank you Congressman Murphy for not giving

up on families who need treatment before tragedy!

12/10/14

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 editors, physicians, 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 18^th 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.

Treatment rather than punishment -- long overdue!

It's Time to Change Tennessee's Mental Health Laws!: Treatment rather than punishment: Let's Do This in...: New York City Announces Plan to Overhaul Criminal Justice System for People with Mental Illness (Dec. 4, 2014) New York City announced a...

Policing the Mentally Ill by: Chief Michael Biasotti

"Treatment before tragedy …

New Windsor (NY) Police Department Chief Michael Biasotti, former President of the New York State Association of Chiefs of Police, writes in Law Enforcement Today: 


is important to people with serious mental illness and their families. But families sometimes fail to recognize it is also something police have a vested interest in..." Our families recognize what you are saying, Chief Biasotti. Thank you to NAMI New York State for recognizing your good work. We all have a vested interest in a safer society for all.  Treatment Before Tragedy

"Today there are approximately 35,000 mentally ill persons in public hospitals. However ten times that number, 350,000 are in prisons and jails."

- See more at: http://www.lawenforcementtoday.com/2014/11/20/policing-the-mentally-ill/#sthash.xE3pfJe0.Kt7Pqo3O.dpuf

ABC this is NOT OK! Disney/ABC Marginalizes Mental Illness In Tasteless Modern Family Episode

I am writing to ask why Disney/ABC Television ridiculed and marginalized our nation’s veterans and millions of other Americans during the October 29th broadcast of its prime time television show, Modern Family.

Pete Earley writes 2 spot-on articles this week about the distasteful, insulting and discriminating “Modern Family” show portraying asylums and mental illness as funny.

Mr. ABC executive, I challenge you to live in my shoes just one day. Try living my life … ask me if I'm amused by my son's horrible 21-years of documented brain disease? Imagine watching your son's brain deterioate, due to civil rights laws that keep him from gaining access to treatment? Please click here: http://abc.go.com/feedback and provide your thoughts on how families and individuals coping with the most challenging and deadly disease on the planet deserve an apology! Thanks, GG Burns  

BY PETE EARLEY

‪

 An Open Letter to Anne Sweeney, Co-Chair Disney Media Networks President, Disney/ABC Television Group

Dear Ms. Sweeney,

Twenty-two veterans commit suicide each day in our nation. Nearly all have a diagnosable mental illness. Many have Post Traumatic Stress Disorder that they suffered fighting for your safety and freedom. Yet, the writers of Modern Family:Halloween 3: AwesomeLand decided to make these proud warriors the butt of belittling jokes. Read more here: http://www.peteearley.com/2014/10/30/stigmatizing-modern-family-disneyabc-marginalizes-mental-illness/

Small Steps: 50,000 Read My Complaint About Modern Family; Express Anger and Disappointment

read more here: http://www.peteearley.com/2014/11/01/small-steps-50000-read-complaint-modern-family-express-anger-disappointment/

How Liza Long's blog post helped families organize to become #Tb4T

I’m so excited because Liza Long's new book, "The Price of Silence" arrived in my mail today! I am late in ordering it, but can't wait to read it!

Like thousands of other Moms, I wrote to Liza the day her "I am Adam Lanza's Mother" blog post went viral. (NOTE: 1.2 million people have read Liza's story on Huffington Post to date.) 

Additionally, I wrote my own story and published it on my blog titled: “My response to I Am Adam Lanza's Mother.” 

That day, millions were in shock, disbelief and mourning the senseless death of 26 children, but it was also significant turning point. It was the beginning of families like mine that survive in mental health crises connecting across the US! 

In the past 2 years, we have used social media to develop relationships that eventually led us to organize and become a new non-profit organization/movement call "Treatment Before Tragedy".

In another post, I'll share more details of how I met Asra Nomani, after she published "Did Nancy Lanza live in fear? Why many mothers of the mentally ill do” in the Washington Post. Asra has been and remains instrumental in helping families acheive the unthinkable!

  

For now, please join me in thanking Liza Long for her brave stand to ask the  questions publically ... that many of us were too afraid to ask.

I alone cannot change the world, but I can cast a stone across 

the waters to create many ripples. – Mother Teresa

In the days after the Newtown, Ct., tragedy, one mother represented the voices of so many: Liza Long, "Anarchist Mom." She testified to the abyss in which so many families are drowning in trying to get care for loved ones with serious mental illness, or brain disease, as we want to reframe the issue.

For being a champion for families everywhere, we thank Liza and congratulate her on her release of her new book, "The Price of Silence." 



Let's support this mom who has supported us and let the world know: 

We matter. Our loved ones matter. 



Read this essay by Liza on what this day means to her: http://treatmentbeforetragedy.wordpress.com/2014/08/28/the-price-of-silence/

GG Burns is a Mother, Artist and Kentucky Mental Health Advocate

Cofounder: http://treatmentbeforetragedy.org/

Founder: http://changementalhealthlawsinky.blogspot.com 

Stigmatizing and Shunning the Severely Ill | Huffington Post

This article by Dr. Allen Frances hits the nail on the head. People with severe mental illness/brain diseases, who don't believe they are ill and lack capacity for informed consent, are allowed to live in the community delusional, dysfunctional, and "YES" often dangerous to themselves and their family! Medical providers in our community recently stated that perhaps my son would received "treatment in jail" … since he has the right to refuse it in the community! Yet even in prison, he has rights to refuse the care he needs to restore his brain function! Only in Amercia are laws this insane! Thanks to the laws that protect his civil rights … he had only received “3 weeks of medical treatment in 2014” for a brain disease that has a 21-year documented history! 

While NAMI and other national mental health groups focus on bringing awareness that mental illnesses are treatable and spend millions on anti-stigma campaigns … both they and society are turning a blind eye to what is really going on behind the scenes due to the fight over funding. Consequently funds are being rerouted to the justice system, jails and prisons. Dr. Frances’ article explains this with great detail.

Families of individuals with “severe mental illness/brain diseases” deserve humane "TREATMENT Before TRAGEDY". 

GG Burns - 
"Advocate and a Mother who is unable to help her son" 

BY ALLEN FRANCES|Posted: 07/30/2014 7:26 pm EDT Updated: 09/29/2014 5:59 am EDT

"We are civilized people in the United States. We don't set up leper colonies or concentration camps or psychiatric snake pits to banish people with severe mental illness. Instead we send them to jail or prison -- almost 400,000 of them, more than 10 times the number receiving care in hospitals. And we also blithely ignore the fact that additional hundreds of thousands live homeless on the streets or in squalid housing and have little or no access to treatment.

The extreme absurdity of our system is perhaps best illustrated when some of our mentally ill are reduced to repeatedly inviting arrest in order to get "three hots and a cot." For them a restricted life behind bars beats a chaotic and dangerous life on the streets.

But for most prison is a living nightmare. People with mental illness don't adapt well to its rituals and dangers. They are vulnerable targets for physical abuse, rape, and prolonged (further crazy-making) solitary confinement. Our society's mismanagement of the severely mentally ill is a disgrace -- perhaps not quite as bad as medieval witch hunting, but close behind."

We can't in any way excuse it, but how do we explain the lousy care and subsequent shunning to prison and street? Some of the neglect certainly arises from felt economic necessity; many states have been forced to sharply slash spending to balance budgets, and one of the easiest things to cut is mental-health funding. But the fundamental reasons must go much deeper. The same states, simultaneously and without much notice or qualm, have radically increased their appropriations for prisons, despite the fact that it is much more expensive to cruelly imprison people with severe mental illness than to compassionately treat them in the community. It is penny-wise and pound-foolish to shortchange community treatment and housing while wasting funds on inappropriate prison beds.

The best explanation for this irrational distribution of scarce resources is the stigma of severe illness. We begrudge the severely ill the necessary funding for humane and cost-effective care but don't seem to mind locking them up in expensive and soul-destroying prisons.

Dictionary definitions of "stigma" describe it as a mark of disgrace, shame, dishonor, ignominy, opprobrium, humiliation, or bad reputation unfairly attached to a person, group or quality. Tellingly, the "the stigma of mental disorder" is almost always offered as the first and most classic example.

A troubling paradox has, I think, developed in the stigma attached to mental illness: Never has there been less stigma for having mild psychiatric problems, but never has there been more stigma for having severe ones.

This has come about because the definition of "mental illness" is now so loose: One in four of us qualifies every year, one in two across a lifetime, and one in five is taking a psychiatric medicine. 

There is enormous power in these numbers. 

The sting of having a psychiatric diagnosis or receiving treatment is much reduced when so many people take psychiatric medication or participate in psychotherapy."

READ THE ENTIRE ARTICLE HERE: http://www.huffingtonpost.com/allen-frances/stigmatizing-and-shunning-the-severely-ill_b_5634135.html

Lets do more than "WALK" or "TALK" during Mental Illness Awareness Week

Some people will spend a few hours this week talking about stigma and how they wish they could help a friend or loved one living with a mental illness. Take a pledge to do more than "WALK" or "TALK" … call your US congressman and help pass national legislation that will stop the discrimination of the sickest, eliminating barriers to gain timely treatment before tragedy. 

‪#‎passhr3717‬ ‪#‎tb4t‬ 

As Mentally Ill Fall Through Net, Insurers Asked to Take Up Slack

MANAGED CARE September 2014. © MediMedia USA

Innovative government projects might point the way toward how plans can save money while addressing a growing public policy concern

Joseph Burns

Contributing Editor

Quoted by Andrew Sperling (NAMI):

"The other program would establish a four-year initiative to award as many as 50 grants each year to entities establishing assisted outpatient treatment (AOT) programs for people with serious mental illness. Congress authorized spending $60 million for four years, beginning next year.

“This provision would be for people at the severe end of the spectrum who don’t come voluntarily to services and who might need court-ordered treatment,” says Sperling. “It’s a pilot AOT program for patients with severe mental illness. There are laws in 45 states that require such treatment, but many of those states don’t require AOT, which is for people who have failed to engage in treatment. This is not about putting people into institutions. It’s about mandatory treatment in the community.” Read more here: http://www.managedcaremag.com/archives/2014/9/mentally-ill-fall-through-net-insurers-asked-take-slack