Finally, someone is listening to the families!

Last week, as I watched Rep Tim Murphy’s latest briefing I cheered with total triumph! For too long families like mine have been ignored. We have watched our loved ones suffering with acute psychotic episodes, deteriorating to the point we're afraid for our safety and the safety of others. 

Instead of systems working together for solutions, people look the other way, ignoring the warnings – yes this happened in Isla Vista, it happened in the Navy Yard, and it will happened again – somewhere in the USA.

And oh my God, what do these very individuals say after the latest preventable tragedy hits the airways?  

“How could we have prevented this unspeakable tragedy? Do we need better gun laws? Where were the parents of these individuals, and why didn't they do something?”

Let me explain what it’s like to be a parent of a brilliant young man who has a 21-year documented history of living with a neurological brain disease. Now as an adult, it has developed into a psychotic disorder and like other diseases will continue to deteriorate without treatment. Currently he lacks capacity, due to anosognosia or an inability to recognize he has symptoms and refuses treatment! 

1.) We have reached out to our family and church – but they alienated our son by turning away, not knowing what to say.   

2.) We reached out to the local community mental heath system (CMHC) and they are unable to help unless our son seeks help voluntarily. He doesn’t believe he has symptoms so there is no way he’ll agree to see a doctor.

3.) We reached out to our local and state law enforcement agencies and they said, "It's not our job” or “it's not against the law to be delusional.” 

4.) Out of desperation, we turned to the justice system, criminalizing our son, hoping to have him hospitalized against his will – a horrific ordeal that no family or individual should endure! Yet instead, our son wound up behind bars, punished for the brain disease he was born with.

Yes, only in America!  

Many naysayers report that ‘trauma’ causes brain diseases. The lack of treatment creates more traumas than a person can bear! My point, last year there were over 40,000 suicides and over a million suicide attempts! Additionally, 356,000 individuals with serious brain diseases were in the United States’ de facto institutions: jails and prisons last year. 

The cost of not caring: Nowhere to go: 

THE FINANCIALAND HUMAN TOLL FOR NEGLECTING THE MENTALLY IL 

by Liz Szabo, USA TODAY

5.) We reached out to state advocacy groups asking them to lobby for policy amendments and they said, “Now is not the time – maybe next year.” Or we heard, “We need to be careful what we advocate for – or we might lose our funding from SAMHSA!”

6.) We contacted CEOs of state agencies and they said, “We need to be careful about asking for system changes or the FEDs might close the psychiatric hospital!” (How is that for intimidation when you have joined forces with other exhausted family members to advocate to replace a 200-year-old antiquated hospital?)

7.) We reached out to state leaders such as the Governor, Commissioners and Secretaries of the Cabinet of Health and Family Services, (CHFS). We spent countless hours arranging meetings and their response was: “The system is broken and sorry we have failed your family members.”

8.) Then finally years later, when we are so exhausted we think we can do no more, we generated hundreds of letters and phone calls and attended dozens of strategic planning meetings with state legislators, and they said, “We will sponsor bills to amend the current mental health law, but the CHFS added expensive fiscal notes, stating it would cost too much.”

Year after year, we have watched our son cry out for help in the most inhumane way and no one listens. Due to symptoms of his untreated illness, he has been discriminated against, labeled ‘moderate risk of violence’ , with a file marked ‘CASE CLOSED’ by ‘service agencies’ that receive federal funds, with absolutely no accountability.

Finally, families like mine have a hero in Congress who is listening and his name is Rep. Tim Murphy. 

For over 2 years, Rep. Murphy has worked tirelessly to bring changes to the federal government’s wasteful spending of your tax dollars, by sponsoring a bill that would over-haul a broken and dysfunctional mental health system.

As of today, Rep. Murphy’s bill H.R. 3717, The Helping Families in Mental Health Crisis Act has 89 Cosponsors – Republican [57] Democratic  [32].

H.R. 3717 needs a few additional co-sponsors so it can pass out of committee.  

"Our loved ones need treatment before tragedy!"   

We need the Families in Mental Health Crises ACT, (H.R. 3717) now!

Please help us! Call your US Representative in Congress today and ask them to cosponsor this important bill. 

Click here to contact your US REP: http://www.opencongress.org/people/zipcodelookup

Congressional Briefing after Isla Vista -- We need HR 3717 now more than ever

MAY 29, 2014Mental Illness Report

Representative Tim Murphy (R-PA), chair of the Energy and Commerce Committee’s Oversight and Investigations Subcommittee, held a briefing on the subcommittee’s report on its investigation of federal programs that address severe mental illness. Topics included a bill to overhaul the current mental health system sponsored by Representative Murphy and a competing bill sponsored by Representative Ron Barber (D-AZ). Representative Murphy, a practicing clinical psychologist, was joined in responding to questions by a forensic psychiatrist, a mental health advocate, and a father whose son suffers from schizophreni

"We've found it easier to focus both the discussion and public resources on gauzy programs for "behavioral wellness" and "emotional well-being" than to confront the painful reality that those with schizophrenia or severe psychosis are more likely to up without care (4.4m), homeless (250,000), in prison or on parole (1.3m), or dead by or attempting suicide (1.38m) than in appropriate psychiatric treatment (approximately 4m)."

http://www.c-span.org/video/?319616-1/house-report-mental-illness-programs

PEOPLE IN THIS VIDEO

• Murphy, Timothy "Tim"U.S. Representative[R] Pennsylvania
• Jaffe, D. J.Founder and Executive DirectorMental Illness Policy Org

• Kelley, EdwardFather
• Welner, Michael M.D.Founder and ChairForensic Panel

How Nancy Pelosi Broke My Heart, By Susan Inman

Susan Inman

Author, After Her Brain Broke: Helping My Daughter Recover Her Sanity

GET UPDATES FROM SUSAN INMAN

Like

191

Posted: 05/20/2014 12:30 pm

Follow

Nancy Pelosi, Canadian Mental Health, Democratic Party, Helping Families In Mental Health Crisis Act, Keris Myrick, Laura's Law, Rep Tim Murphy, American Psychiatric Association, Involuntary Treatment,Mental Illness, Psychosis, Schizophrenia, Canada Politics News

1

0

0

0

The U.S. is in the midst of a historic battle about how to fix its disastrous mental health system. During the decades that mental health care has been under the control of the Substance Abuse and Mental Health Services Administration (SAMHSA), there have been significant changes. Now there are ten times as many people with mental illnesses who are incarcerated as there are psychiatric hospital beds.

These horrific conditions have developed because SAMHSA, headed by a human rights lawyer, has chosen to support the beliefs of the alternative mental health movement rather than to promote science based care. These beliefs make it inconvenient to acknowledge that most psychotic people have a brain based inability to understand that they are ill. As a result, SAMHSA funds groups like Protection and Advocacy for Individuals with Mental Illnesses (PAIMI) that help ill people refuse treatment that could help them get better. Families wish someone would protect their severely ill family members from the groups that advocate for their right to be severely psychotic. As well, these groups block efforts of families to get the information they need to care for very ill relatives.

To remedy this situation, a Congressional subcommittee, after a lengthy investigation,developed a bipartisan bill, the "Helping Families in Mental Health Crisis Act." Developed under the leadership of Republican Tim Murphy, a clinical psychologist, the bill currently has 28 (out of 80) Democratic co-sponsors. However, other Democrats have been slow to come aboard.

Now the lack of Democratic support has morphed into something even more dangerous. Under the guidance of House Minority Leader Nancy Pelosi, the Barber bill has been introduced. It guts every important change proposed in the Murphy bill.

Nancy Pelosi justifies the Barber bill by saying that she wants legislation which "the mental health community can support." She seems to think that the vast array of psychiatric survivor groups that SAMHSA's largesse has nurtured represent the "mental health community." These groups have organized an intense campaign to lobby members of Congress with petitions, and letter writing campaigns.

Meanwhile, there's been a lack of leadership from the groups that should be actively lobbying to get the Murphy bill passed.

For decades families coping with mental illnesses were represented by the National Alliance on Mental Illness (NAMI), an organization that was started by family caregivers of people with schizophrenia. There are over 1100 chapters of NAMI across the US and many might have expected the NAMI website to be teeming with initiatives to support the Murphy bill. Unfortunately, NAMI no longer represents the perspectives of families advocating treatment for people with the most severe mental illnesses.

During the years that I have attended NAMI's national conferences, I have noticed a disturbing trend. A growing number of families talk about being unable to get any care for their daughters and sons who have become psychotic. When I ask what their NAMI chapters are doing about this, they have told me the chapters have come to rely on SAMHSA money to operate and don't want to anger these funders.

It has become harder to distinguish NAMI's beliefs from those of SAMHSA. Its new Executive Director, Nancy Giliberti, is a former lawyer for the Bazelon Center, the major force behind efforts to block any involuntary treatment of people with mental illnesses.

And SAMHSA's perspectives on mental health care have been well represented by Board President, Keris Myrick, who blogs for Mad in America. Ms Myrick is part of an upcominggroup presentation in Toronto that promises new perspectives on psychosis, or what the group prefers to call "extreme mental states." Characterizing neuroscience based understandings of psychotic disorders as "reductive" and "narrow," presenters at this event bring their "existential and intellectual authority" to explain how psychosis is a state of mind that "passes." They believe it can leave people "weller than well."

This might come as quite a shock to the many American families I know who can't get treatment for their very ill sons and daughters whose psychotic states aren't 'passing.' Instead, these are families whose deeply loved and sensitively nurtured children have joined the millions of Americans living with untreated severe mental illnesses. They are homeless, victimized, and cycling in and out of jails and prisons.

I hope Ms. Pelosi will watch the reception that Rep. Murphy received last week at the American Psychiatric Association, a group she apparently doesn't consider to be part of the "mental health community."

And she needs to read the testimony of parents in her own state. Last week, families in California finally persuaded the Board of Supervisors in Orange County to fund Laura's Law which provides Assisted Outreach Treatment services to those who stumble back and forth between the street, emergency rooms, and prisons. The delays in implementing this common sense and proven strategy have occurred because of the opposition of the groups SAMHSA helps fund.

The Democratic Party has mostly been consistent in its support of the value of science. However, it has failed to protest when, as Rep. Murphy says, SAMHSA has behaved as if schizophrenia and bipolar disorder don't exist. As a lifelong Democrat and enthusiastic supporter of President Obama, I urge Ms. Pelosi to get the Democratic leadership to endorse a sensible approach in responding to the reality of severe mental illnesses. They must stop blocking the desperately needed transformation of the US mental health system.

real solutions to fix America’s broken mental health system

For the first time in 50 years,
real solutions have been proposed to fix
America’s broken mental health system…

HR 3717

The Helping Families in Mental Health Crisis Act

Congressman Tim Murphy, PhD, a psychologist by training, has introduced comprehensive legislation to help individuals and families living with severe mental illness.

This bill, HR 3717, called the Helping Families in Mental Health Crisis Act, is designed to reduce the barriers to treatment for those who need it most.

HR 3717 WILL:

• EMPOWER parents and caregivers
• ADDRESS the shortage of psychiatric beds
• STABILIZE patients beyond the emergency room
• PROMOTE alternatives to institutionalization
• ENCOURAGE greater use of criminal diversion programs
• REACH underserved and rural populations
• FOSTER evidence-based care
• ADVANCE critical medical research
• IMPROVE the quality of community behavioral health services
• REDUCE mental illness stigma in schools
• INTEGRATE primary and behavioral care
• INCREASE physician volunteerism in community mental health facilities
• REFORM the Substance Abuse and Mental Health Services Administration

SPECIFIC ACTIONS OF HR 3717:

• Requires states to authorize assisted outpatient treatment (AOT) in order to receive Community Mental Health Service Block Grant funds.
• Clarifies HIPAA to permit a “caregiver” to receive protected health information when a mental health care provider reasonably believes disclosure to the caregiver is necessary to protect the health, safety or welfare of the patient or the safety of another. (The definition of “caregiver” includes immediate family members.)
• Establishes a new National Mental Health Policy Laboratory in the Department of Health and Human Services
• Prevents federally funded Protection and Advocacy organizations from engaging in lobbying activities and counseling individuals on “refusing medical treatment or acting against wishes of a caregiver.”
• Requires the U.S. comptroller general to submit a report to Congress detailing the costs to the federal and state government of imprisoning people with severe mental illness.
• Increases congressional oversight of SAMHSA programs and seeks improvements to the programs it supports.

For more information on HR 3717, visit:http://murphy.house.gov/helpingfamiliesinmentalhealthcrisisact

IMMEDIATE ACTION REQUIRED!

Congressman Murphy’s legislation is not simply Democratic or Republican. The bill addresses a humane issue that affects people eveywhere.

TELL CONGRESS TO:

Say YES to
Expanding Treatment Options for those with Severe Mental Illness
Say YES to HR 3717

PLEASE CONTACT YOUR REPRESENTATIVE IN CONGRESS ASAP AND TELL HIM OR HER HOW IMPORTANT THIS LEGISLATION IS TO YOU AND YOUR LOVED ONES. FEEL FREE TO USE THIS SAMPLE LETTER AND THE ATTACHED LINK TO FIND YOUR REPRESENTATIVE.

Dear Congressman [insert last name]

My name is ________________________________ and I live in ______________________.

Please support HR 3717 because it addresses the obstacles families face when trying to save loved ones from untreated serious mental illness. This bill will expand access to treatment for individuals who miss out on mental health services because they are too ill to seek them. It will lead to treatment before tragedy.
We desperately need HR 3717 to help us appropriately care for our loved ones, who while in crisis, cannot care for themselves. It truly is a matter of life and death.

Thank you for your support!

To find your representative: http://www.house.gov/representatives/find/

FREQUENTLY ASKED QUESTIONS

 What is assisted outpatient treatment (AOT) and how does HR 3717 promote it? 
AOT is court-ordered outpatient treatment (including medication) for individuals who have a history of struggling to stay in treatment. It is mandated as a condition for them to remain in the community rather than be hospitalized.

AOT laws are intended to help those individuals with severe mental illness who are most at risk for revolving-door hospitalization, incarceration, homelessness and other consequences of not receiving needed treatment.

The Helping Families in Mental Health Crisis Act requires the five states that don’t have laws authorizing the practice of AOT to pass them in order to remain eligible for certain federal block grant monies.

A grant program to help counties implement AOT programs was originally included in HR 3717 but was subsequently incorporated in the Protecting Access to Medicare Act. This act has already passed, been signed by the president and is now public law.

Does assisted outpatient treatment work? 
The US Department of Justice has deemed AOT to be an evidence-based practice for reducing crime and violence. Multiple studies have found that AOT reduces incarceration, homelessness and hospitalization and helps people regain dignity and control of their lives. Independent research also has found that AOT can save sufficient taxpayer money to expand other mental health services with the savings. The majority of patients who have utilized AOT say it helped them; many credit AOT with saving their lives.

What is a need-for-treatment standard and what does HR 3717 say about it?
A “need-for-treatment” commitment standard authorizes court-ordered treatment for individuals who are deteriorating psychiatrically but have not yet reached a point where they are unable to provide for their basic survival needs or are at risk of endangering themselves or others.

Need-for-treatment standards are particularly important for individuals who lack insight into their illness because they focus the court’s attention on needless personal suffering and/or deterioration, from which the person is incapable of escaping without assistance.

HR 3717 requires states to include need-for-treatment commitment standards in their civil commitment laws in order to remain eligible for certain federal block grant monies.

What are the changes to HIPAA and how will they affect patient privacy?
HR 3717 clarifies existing sections of the HIPAA Privacy Rule and codifies those sections in statute to assure that doctors and caregivers can communicate during a mental health crisis. Currently, providers frequently misinterpret or over-interpret the guidelines, which restricts participation by family members and impairs the ability to act in the best interests of patients in psychiatric crisis. This clarification enables “caregivers” to receive protected health information when a mental health care provider reasonably believes disclosure is necessary to protect the health, safety or welfare of the patient or the safety of another. The definition of “caregiver” includes immediate family members.

Will HR 3717 put people in the hospital who don’t belong there?
The Helping Families in Mental Health Crisis Act strengthens the community system of care so people with the most severe illnesses receive treatment in the least restrictive settings. In fact, the legislation provides alternatives to involuntary hospitalization and imprisonment.

How will HR 3717 affect the trend of incarcerating people because of acts they commit while in psychiatric crisis?
HR 3717 promotes the use of jail diversion programs such as mental health courts and crisis intervention team (CIT) policing, which provides training in handling mental illness to law enforcement officers. These programs consistently have been proven to reduce incarceration rates in the population with untreated mental illness. Yet less than 40% of the US population currently lives in jurisdictions with mental health courts, and only 49% lives where CIT is in use.

How will the suggested funding cuts to Protection and Advocacy programs affect services for those with severe mental illness?
Protection and Advocacy for Individuals with Mental Illness (PAIMI) was originally enacted by Congress to protect the rights of individuals with serious mental illness. Unfortunately, PAIMI programs utilize federal funding to create barriers to treatment through lobbying efforts and unauthorized activities, including counseling patients in crisis to refuse treatment against their physicians’ advice and caregivers’ wishes. Preventing treatment was not the intent of PAIMI.

HR 3717 redirects these funds and actually restores the original intent of PAIMI by prohibiting any organization receiving PAIMI funds from engaging in any form of lobbying or actively fighting against caregiver and physician efforts.

Read Joe Bruce's tragic story with deadly consequences when a federally funded patient rights advocate convinced a severely psychotic young man to refuse treatment and leave the hospital.

HR 3717 Bill Information

            

      

In Memory of Amy Bruce - we must continue to fight for reform

 (1​958 - 2006)

www.amybruce.org

"My Son Has Killed My Wife"

Late one afternoon in June 2006, Joe Bruce of Caratunk, Maine, came home from work to find his wife dead. He called 911 and told the dispatcher that his 24-year-old schizophrenic son, William, had killed her, that he couldn't find the son, and that he was arming himself for self-defense. 

 On June 20, two months after his son's release, Joe Bruce returned home from his office to find his wife'sbattered, bloodied body. William was gone.

According to the medical examiner's report, Amy died of multiple blunt-force trauma and chop injuries to her head. She was 47 years old.

Police arrested William Bruce at his grandparents' house and later charged him with killing his mother. He told a psychologist that the Pope told him to kill his mother because she was involved with al Qaeda and Saddam Hussein. Joe Bruce became William's legal guardian and gained access to his medical records. When police returned Amy Bruce's purse to Joe, he found an unsent letter she had written to her eldest son. It read...

 "I've always had this horrible feeling that I've let you down in some way," she wrote. "The only wish I have is that someday we can look each other straight in the eyes and say I'm sorry and I love you more than life itself." She added: "I will not give up on you ever."

About Amy and Joe’s son:

William said the first time he came to Riverview, he refused to believe he was mentally ill and approached the PAIMI advocates because he wanted out. 

The PAIMI program, operated by the Substance Abuse and Mental Health Services Administration with a 2008 budget of $34.8 million a year, funds protection-and-advocacy agencies in each state. Typically nonprofits, these groups sometimes receive supplemental funding from states. 

"They helped me immensely with getting out of the hospital, so I was very happy," he said. He later added,"The advocates didn't protect me from myself, unfortunately."

These days, William is taking criminal-justice classes online through Colorado Technical University. He points proudly to his 3.94 grade-point average and says he hopes to attend law school to learn more about mental-health laws. William and his father talk on the phone almost every day. "He stood by me the whole time despite the horrible tragedy...despite what I did," William said. "I am the man I am today because of my dad."

While William believes patients deserve some protection, he said he understands his father's fight to strengthen commitment and treatment laws. 

read more here:

http://nebula.wsimg.com/8b3af4d4fcbf63616ab1a1a2206899bc?AccessKeyId=CCF6196A1C1D710D93FD&disposition=0&alloworigin=1