Right to Treatment-Civil Rights Battle of our Times

In 2016, the demand for an equal RIGHT TO TREATMENT of serious mental illness is becoming a central force for positive change.

OUR PRIMARY MISSION: California Must Budget Equal Access and Quality in Public Health Care for both mental and physical illnesses. End the separate and unequal system.  MediCal Insurance Must Guarantee access to the same “medically necessary treatment” for mental and physical illnesses.   EQUAL & UNIFIED

THESE CONDITIONS MUST CHANGE: 

  1. California does not recognize serious mental illness as a legitimate medical condition.
  2. Medicaid insurance in public health guarantees “medically necessary treatment”for physical illnesses–and  denies this right for serious mental illnesses.
  3. The state obtains a “waiver” from the federal government that allows county systems to deny equal treatment for serious mental illnesses. There are no guarantees.
  4. Medicaid/MediCal insurance isolates serious mental illness from mainstream medicine –and creates an artificial divide between mental and physical Health Care.
  5. Prop 63 annual revenue of $1.5 billion must fund full parity to expand programs required by MHSA law, serve individuals required by law, and end the crisis-driven system.

FACTS is a partnership with families, consumers, and direct providers who are fighting for mental health parity, which means equal rights to treatment for physical and mental illnesses, equal access, and equal standards of care.

PROP 63 REVENUE MUST NOW TARGET EXPANSION OF EQUALITY–and the state must enforce provisions of the law enacted by voters.

SEE OUR WEBSITE –ACTION ON RIGHT TO TREATMENT  right2treatment.org

TRUE STORIES START IN POSTS BELOW.

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A FACT of “Societal Neglect”

Ten years ago our oldest son was graduating from high school with a 4+ GPA, perfect SATs, and offers of admission to top universities across the nation. He was handsome, athletic, witty and poised, seemingly happy and well adjusted, with an intellectual passion and creative talents that we thought would serve him well as he ventured into the world on his own.

Our beautiful brilliant son now roams the streets in a free box wardrobe, eats from dumpsters, and sleeps on the grates outside the University of California at Berkeley buildings where he once attended classes. Despite our increasingly more desperate attempts to get him into treatment for Schizoaffective Disorder, with which he was diagnosed eight years ago,  and despite what doctors confirm is a  deteriorating mental condition, we have found that the current system of laws have thwarted every best attempt to get our son the care he needs. Although we now have highly effective medications and other treatment modalities that can restore people to a life of sanity, we are told we must not violate their civil liberties by giving them these remedies unless they are sane enough to realize they need them. A tragic Catch 22 that guarantees the right to be psychotic, delusional, haunted, homeless. Over the past ten years my son has been in and out of the hospital dozens of times. His typical stay is of two weeks duration or less. During the last of my son’s 7 short hospitalizations this past year, the doctor told me his prognosis for full recovery was excellent if he would stay in treatment but that, given the way our system works, that would probably never happen. Because my son responds to the medicine very quickly, he would likely be released very soon; once released he goes off the medicine, refuses to engage in any type of treatment,  and deteriorates till he can be rehospitalized, and the cycle repeats endlessly, futilely. Despite the profound losses over the past ten years, he  does not believe he has a mental illness.

I can’t tell you the desperation of families like mine, the horror and helplessness we deal with every waking hour. Families are the frontline of support and sustenance for the mentally ill, but without the support of our institutions and laws we are helpless to protect our loved ones, and our family members become society’s problems- the dangerous or simply deluded lost souls that populate our jails or wander our streets. When tragedies occur, families are the first to get blamed.

The passage of Proposition 63 in 2002 funneled millions of needed dollars into the Mental Health Care System, but little of that has trickled down to those in the gravest need: those with Schizophrenia, Schizoaffective, and Bipolar Disorder. Our Mental Health System needs to offer services that are sustained long enough to address the chronicity of these illnesses. That means switching from a crisis management mode, and instead intervening before people are in crisis. We need to adopt AB1421 to offer community-based intensive services. Doing so will prevent many from deteriorating to the point that they wind up in  Psychiatric Emergency Rooms, and will free  hospital beds for those in need of more sustained treatment. We also need Mental Health Parity Laws so that these medical conditions will receive the same reimbursement from insurers as other illnesses. We need  to acknowledge that people in the throes of psychosis may not be competent to make medical decisions for their own care, and to fail to intervene is not compassion, it is societal neglect.

Sincerely,
Patricia Fontana

Right to Treatment for All-A Rally Cry for Equality

Opening Comments by Teresa Pasquini—Thursday June 19 – West Steps Capitol

Rally for equality for mental illness in MediCal 

My name is Teresa Pasquini. I am a Contra Costa County Mental Health Commissioner and Chair of the Behavioral Healthcare Partnership of Contra Costa Regional Medical Center. I am here today as the proud mom of a 31 years old son who has lived heroically with schizoaffective disorder. I am also very proud to be a founding partner of Mental Illness FACTS, Family and Consume True Stories. Welcome and thank you for joining our fight for a right 2 treatment -For ALL! And, “All means All,” as Don Berwick, a candidate for Governor of Massachusetts and the former head of CMS said recently.

We are here today to call for local change and statewide change to end prejudice in funding of public mental health. We will tell the FACTS of the Mental Illness Community through the stories of those who have experienced the discrimination first hand, both the users and providers of the system. We are joined by people from across the state to demand Mental Health Parity-Equal Funding for Mental Illness in a whole health system.   

We are told that healthcare is now a right. We are told that there is justice for all. We are told that the disabled are protected from discrimination. I know for sure that this is untrue. I know for sure that our California healthcare delivery system denies equitable access to treatment for mental illness and that today we are redesigning systems that will maintain the status quo. I refuse to accept the status quo. I refuse to accept that my family does not deserve equal access to medical care.

Systems are designed to get the outcomes that they achieve. I believe we have achieved chaos. We have good people working in a broken, underfunded system. We have good people trying to survive in that system and they are suffering. The outcomes being celebrated by the highly paid key stakeholders are not representative of the many poor and disabled who depend on the public mental health system. This is by design. This is legal. This is unacceptable.

The California legislators and Governor Brown have supported legal discrimination in access to health for ALL diagnosed with a mental illness whether it is mild, moderate or severe. Right 2 Treatment, a campaign of Mental Illness FACTS expects change for all, not for the few, not for the lucky, not for those who are well enough to navigate the chaotic system, not only for the privately insured or for those who are not yet disabled …but for all. 

Mental Illness FACTS refuses to settle for less than equality. We refuse to settle like other state and national stakeholder organizations who are supposed to be fighting for all. They are NOT! They are fighting to protect the status quo. These are the groups being paid to end stigma and discrimination and they are failing without a Right 2 Treatment.

We don’t have pretty green colored ribbon or bumper stickers to hand out today. We don’t have a big screen TV behind us showing slick, Hollywood video production. But we do have a force to be reckoned with behind us and it is building across this state and across the country. That force is a partnership of consumers, families and provider and it is inviting the policy makers and politicians to pay attention to our demand for a Right 2 Treatment before tragedy, jail time, suicide and harm.

Last Sunday the California legislature approved a budget and 18 trailer bills allocating more than $150 billion—but- no funds to extend parity in public mental health. State and federal governments guarantee equal access and quality of treatment for every insured person except those with a diagnosed mental illness.

With the Isla Vista tragedy still fresh in our minds and hearts but fading from front pages and memory, we are here to agree with the victim’s father who said, “ –NOT ONE MORE!” Before Another preventable tragedy that reminds the world of California’s failed mental illness system, we call for Change that Matters NOW…no more waiting. Not another day, another month another year.

Today is the 50th Anniversary of U.S. Senate approval of the Civil Rights Act of 1964; we recall Martin Luther King’s wisdom:

“Justice too long delayed is justice denied.” We will not be denied a Right 2 Treatment for our families, our communities. Waiting is no longer an option!

OUR PURPOSE today is as follows:

  • We will spell out the benefits of parity and the results of denying a right to treatment. We want politicians and public to know that we are lifting the veil of secrecy that covers up conditions in mental health.
  • 
We want the governor to initiate a plan to allocate Prop 63 taxes to expand parity, as anticipated by provisions of the law and the voters, to integrate all MHSA programs into one coherent county system, thus reducing bureaucracies and funding more direct service providers.
  • We are calling upon the governor to place a moratorium on all Prop 63 expenditures that are not treatment focused and are not in demand by consumers, including conferences, unnecessary travel, public relations, brochures, movies, billboards, and “swag” claiming to encourage people to seek treatment — when there is no access to treatment.

Teach-Touch-Transform-Change That Matters- a sample of mitruestories

Mental Illness FACTS-Right 2 Treatment –Change That Matters

Storytelling Event-Guidelines

Califorinia’s Medicaid population is denied a guarantee of medically necessary care for mental illness.  On June 19th we will gather at State Capital to describe the personal or professional consequences of California’s official discrimination. California”s Mental Health system does not meet national quality standards of Safe, Effective, Efficient, Timely, Patient/Family Centered, Equitable care.  In a maximum of 600 words/3 minutes, tell your story, your FACTS, of mental illness treatment discrimination.  Respectfully, “Teach-Touch-Transform “ with your truth and use your story to shatter the system’s shameful and legal neglect. Without a Right 2 Treatment, mental Illness is life threatening whether it is stage 1, 2, 3  or 4.  

There are many ways to tell a story. But all good stories have this in common: Something has to happen. The world has to change. Below is an example by Teresa Pasquini.

“I am the proud mother of a 31-year-old son with schizzoaffective disorder who has spent the majority of the past 15 years in California’s psychiatric facilities behind locked doors. My son has been hospitalized over 40 times. He has never received “whatever it takes” although he was surely a candidate for the often-touted Full Service Partnerships. His failed care is a case study of inhumanity and suffering. Yet California’s MHSA funds movies and parities instead of parity.    

His first involuntary hold occurred at the age of 15.  It was a suicide by cop type event.  He was psychotic, high or drunk and was running from a sheriff deputy and when caught, he begged to be killed.  We received a call that he was being taken to the psychiatric hospital in Walnut Creek, CA, which like many psychiatric hospitals, has since closed.  Although I had experienced the mental health system, with my brother, many years before, nothing would prepare my husband or I, for what was to come into our lives.  

The past 15 years have been a blur of suicide attempts, over 70 involuntary holds, revolving hospitalizations, and a permanent conservatorship which has lasted for the past 13 years. With a diagnosis at age 16, we began to navigate a maze of services in one of the most integrated healthcare systems in California. It was a nightmare.  I had been a soccer mom, a room mom and a stay at home mom but I didn’t know how to be a mom to a child with a serious psychiatric illness.

There is absolutely no way to prepare for the chaos and continuous crisis that this medical illness brings into a family home.  Some people fear those with mental illnesses but what they should fear is the California mental health system, with all of its inequities, complexity and discrimination, which prevents appropriate medical and recovery supports. It was the health system, not our son, who became the monster in our family.

I reflected on our family experience during a visit to our son while my husband and I drove a total of 5 hours round trip. Psychiatric patients are often not treated near their home, but in out of county placements. When we arrived, our son, who was 29 at the time, came running with such happiness at the sight of our car and stopped at a high wire fence, waving to us. It reminded me of when he was in kindergarten and he used to run to the schoolyard fence to greet me. The fence reminded my husband of a prison and it took him a while to get out of the car and head into the visit.

My husband still struggles with his inability to rescue his son from his symptoms and the system. They have stolen his son’s freedom, dignity, and often the will to live. How do we hold on to hope when our son continues to suffer by a broken, fragmented, under funded mental health system? I choose to fight for a Right 2 Treatment for all families like mine to end the fiscal and human waste of mental illness and to possibly save our souls.

Recovery has escaped my son and he has had little joy in his adult life. He sits today in the Napa County jail following an arrest at Napa State Hospital. He was placed there on a civil commitment but now faces criminal charges. He is awaiting an Incompetent to Stand Trial hearing in July. I contend that the California mental health system should be on trial for incompetence. “

A Shameful California Reality Check

Ventura County Client writes to mitruestories:

The  following MHSA policy statement comment/emergency room testimony is as about as compelling as it gets- don’t take it only from me. I am a MHSA stakeholder doing systems transformation since 2004:

“We treat over twenty two hundred individuals each year on our inpatient unit but that is only a small portion of the five thousand plus individuals who come to our Emergency Department seeking help for the most severe psychiatric symptoms.  Our unit is always full and we send many more patients away to other hospitals or community programs than we can serve.  Our medical emergency department is impacted with psychiatric patients who are denied services supported by MHSA funds because they on an involuntary hold.  They are too acutely ill to receive psychiatric services from the Agencies that are the recipients of these funds.  By default these acutely ill psychiatric patients become the responsibility of medical community, not psychiatrists or anyone with psychiatric experience.  They are held without treatment in our medical emergency rooms.  This is the story of the misuse of these resources and the lack of psychiatric services for the mentally ill in the majority of communities.  Because of unfunded mandates like EMTALA it becomes the responsibility of our medical emergency departments across the State to house these individuals even though they have no services to offer them and  the vast majority of the individuals have no medical issues.  Yet the money from the Mental Health Services Act continues to be sent to the Counties where these funds are diverted from providing any care for these, our most acutely ill neighbors.  The funds are used to provide new, very low yield services such as anti-stigma campaigns to grade school children or art shows in the park.  Shame on all of us who claim to be advocates for  the mentally ill. “ 

T. L. MSW, MPA

DIRECTOR OF BEHAVIORAL HEALTH SERVICES

The Fight for the Right to Treatment

Mary Palofox, Family member, nurse, Advocate-Orange County writes: 

The “right to medical treatment” is based on the FACTS that the brain diseases of bipolar and schizophrenia manifest PHYSICAL symptoms. They are not “made up” or “all in someone’s head”. Lumping all human behaviors into the category of “mental illness” confuses the hell out of everyone. The right to medical treatment is BECAUSE certain ILLNESSES are physical NOT mental. The NIMH knows this! Based on their own brain research>>>they should be called upon to lead the way to pull these brain illnesses out of behavioral health care (which has ZERO liability and a full shield of immunity under the LPS act-which keeps the system broken)

There will never be true parity when we segregate health into two streams of health care delivery>mental and physical

If we cant fully integrate these two systems>then at least lets drawn the line and relocate the brain diseases of bipolar and schizophrenia under physical health

Many physical health conditions (like lung cancer) need “psychosocial/behavioral “services -like a stop smoking program.

The disparity is in the label and federal oversight.its time to reclassify brain illness under physical…and behavioral health can “treat”conditions within their “scope of practice” >like cognitive behavioral therapy, counseling, relaxation techniques. They have “contracted” with Medicine long enough. They policies and procedures are extremely inadequate to manage ILLNESS. They are essentially “practicing medicine without a license”

Families in crisis are screaming for help>when they see the physical symptoms of psychosis, hallucination, delusions, and agitation medically ignored. They see these physical symptoms treated for conditions of sepsis, electrolyte imbalances, other neurological brain/CNS disorders, etc….

Brain disease is not “human experience” and their reaction to stress in their environment (behavioral health care/science)

Every illness has “environmental” factors (like diabetes with obesity) but we FIRST treat and acknowledge it medically >not behaviorally 

And that’s the problem…

Behavioral health care is an extremely substandard health care system to set policy and procedure for complex diseases of the brain

if i had my way, BHCD’s would be demolished and money given to medicine to provide medical care and treatment based on genetics, neuroscience, cytology, biology, immunology, radiology, laboratory testing, and physical exams. Behavioral health is based on human behaviors with an emphasis on counseling, recovery and therapy. Its akin to “cardiac rehab” after coronary bypass surgery>> But here we are heavy on the rehab side with out providing the surgery. 

Behavioral health needs to be a “service” like occupational health…an adjunct to Medicine>>not a whole separate health care delivery system 

^^^^^That’s the fight^^^^ for “right to treatment

True Story of Treatment Inequality and Tragedy

July 16, 2014; Right 2 Treatment

We are the proud parents of a 25 year old who first became ill with paranoid schizophrenia just after high school   The disease and our inability to get help for him through our mental health system robbed our young son of a quality life and lead to great suffering.    This is the same boy that loved fishing as a young boy, that played endlessly in the fields catching lizards and making forts and later was an all-league football player, a talented writer and had a passion for music.  Today, our young son sits at Napa state hospital incompetent to stand trial for a crime that he never could have committed in his right mind and another family has lost a loved one. Our son’s life and two families now will not ever be the same.

If you do not have someone in your life with mental illness, it would be hard for you to sit helplessly as he or she loses their life to such a devastating disease as paranoid schizophrenia without any ability to make a difference given our current mental health system and laws.    Our son had been in and out of the hospital over four years, a situation known by all as the revolving door for the chronically ill.   No matter what we did, we could not get any sustained help. And although we met wonderful and dedicated staff and health professional along the way, their hands were most often tied by the laws and qualifications for treatment and insurance company’s requirements for medically necessary treatment.

The tragedies we read about in our newspaper headlines need to stop and the many silent tragedies of our most severely ill that end up on our streets living homeless, in back rooms or in jail because they are unable to get sustained treatment needs to stop.   We can no longer sit by and pretend this ineffective and inefficient system is ok. We need equality of treatment and accountability. We have a mental health crisis in our communities and there needs to be change now.

We need to adopt AB1421, Laura’s Law that compels engagement but ensures that personal human rights are respected.   This law helps an individual stay stable and out of crisis and the revolving doors or jail and is one more tool in the toolbox in addition to the many voluntary programs. Laura’s Law can help reach a population of people we have not been able to reach in hopes to keep them out of forced 5150s, jail and homelessness.

We need to end discrimination against treatment of mental illness and demand that Pro 63 funds support programs that help our most severely ill and integrate physical and mental health systems that are effective and accountable.

We believe members of our community stricken with debilitating disorders deserve the compassion to someday choose a path to wellness.   These are not the few but the many with bipolar illness and schizophrenia and they are not just slipping through the cracks but are falling into a chasm. They need our help and they deserve mental health parity.

As a society, we are cruelly turning our backs on these individuals by not providing appropriate care and we should no longer tolerate this discrimination.

Please yell, scream, advocate, don’t stop calling for change that matters, for Right 2 Treatment for all.

Hans and Candy DeWitt

A FACT of Inequality

  For the past twenty years the system has failed my son.  He is now 39 years old and suffers from severe and persistent schizoaffective disorder.  He is not getting effective care,  is not functional nor stabilized and he is costing a fortune. In the past two months his cost to Medicare in ER visits and short term inpatient stays has been more than $33,000. He is now homeless, delusional and has persistent homicidal ideations, yet he does not meet grave disability standards in San Francisco.   The residential treatment programs repeatedly send him back to the hospital because they say that he needs a higher level of care and upon release they refuse to take him back.  He is considered too much of a liability and too dangerous to be in their care yet the higher level of care turns out to be a homeless shelter!! The medications no longer work, he keeps begging to be readmitted to a locked facility but there is no room at the Inn.  The officers who repeatedly come to my home are kind, understanding and very frustrated because they know that this cycle will just keep repeating itself.  He is homeless for the first time in his life and it is a direct result of DPH policy.

 

In 2000 SFGH had approximately 150 acute in patient beds. Today they have 19 and our director of public health is not promising to keep them open!!   The claim is that they are not needed, that people are not sick enough to meet criteria to be inpatients and that voluntary outpatient care is more than adequate.  Case manager loads are increasing and the number of community residential treatment beds is rapidly declining. People with severe psychosis are rushed through a system that expects them to “recover” in a month and uses single room occupancy hotels and so called stabilization beds for psychotic people released from the hospital before they are at all stable enough to care for themselves.  The city has adopted the tough love let them hit bottom mantra of AA and those with severe schizophrenia and other psychotic disorders that do not quickly respond to medication are said to “not want to get well.”   No one who works for the department of health is allowed to talk to the press.  It is almost impossible to track where the money goes.  

 

Anonymous to protect from retaliation

Right to Treatment–Civil rights battle of our time.

The Campaign for a RIGHT TO TREATMENT of mental illnesses is a central force for positive change.

OUR PRIMARY MISSION: California Must Budget Equal Access and Quality in Public Health Care for both mental and physical illnesses. End the separate and unequal system.  MediCal Insurance Must Guarantee access to the same “medically essential treatment” for mental and physical illnesses.   EQUAL & UNIFIED

THESE CONDITIONS MUST CHANGE: 

  1. California does not recognize mental illnesses as a legitimate medical condition.
  2. MediCal coverage in public health systems guarantees “medically necessary treatment” only for physical illnesses–and  denies this right for mental illnesses.
  3. The state obtains a “waiver” from the federal government that allows county systems to deny equal treatment for mental illnesses. There are no guarantees.
  4. MediCal insurance isolates mental health care from the mainstream medical system—and creates an artificial divide between mental and physical Health Care.

FACTS is a partnership with families, consumers, and direct providers who are fighting for mental health parity, which means equal rights to treatment for physical and mental illnesses, equal access, and equal standards of care.

PROP 63 REVENUE MUST NOW TARGET EXPANSION OF EQUALITY–and the state must enforce provisions of the law enacted by voters

What Are MHSA Systems of Care?

The proven model developed over decades with extensive stakeholder review and contributions.

SYSTEMS OF CARE — the model programs tested in the field for 20 years, reviews by stakeholders over period of years.

 These model programs for children and youth, adults and older adults have standards of care described in law. The code sections describe the range of treatment options that should be offered in a model program — counties and stakeholders can set priorities within the active model.

MHSA law allocates 95% of all tax revenue to these systems of care, which are supposed to have integrated, new prevention program.  The Oversight and Accountability Commission, Chaired by Senator Steinberg for the first three and half years, and the Dept of Mental Health Director agreed upon a different, private plan. The STATE DMH AND OAC changed the law through regulations, proclamations, and public relations campaigns.  MISINFORMATION continues to be repaid today. Clear language in the law requires that the money be held in “TRUST FUND” and used only to expand and upgrade quality of care in the model programs.

Requirements were tossed out.

Spending and policy-making is invented to suit ideas of the people running the show–politicians and bureaucrats are still operating an Ad-Hoc strategy, unknown to the public.

The multi-billion dollar program has no rules in the law.

what-are-systems-of-care1

NAMI REPORT ON TWO-TIER 2008

In 2008, NAMI Ca reported to the OAC:

NAMI MHSA Survey Cover Letter Nov 2008

 

WE WERE ROBBED! PROP 63 Amendments Authorize Diversion of Prevention $$

PROP. 63, MENTAL HEALTH SERVICES ACT, NOT AS ADVERTISED

SFGate.com July 8, 2012 San Francisco Chronicle
By Rose King
Updated 12:10 a.m., Saturday, July 7, 2012

In 2004, voters approved Proposition 63, which levied a 1 percent tax on millionaires to expand mental health services, and created a state plan to ensure progress toward providing them. Before we passed the law, the official ballot pamphlet told us “how the money would be spent.” New tax revenue would:

— Expand existing county mental health Systems of Care for children, adults and older adults, based upon a proven model of service; and

— Create prevention and early intervention programs within the model systems to help prevent mental illnesses from becoming more severe and disabling.

As one of several co-authors of the Mental Health Services Act, the official name of Prop. 63, I thought the purpose and intent provisions spelled out a clear path to implementation. The Systems of Care model that would receive 75 percent of the Prop. 63 revenue was fully explained in legal codes; government couldn’t screw this up.

I was wrong. Incompetence and politics led the state Department of Mental Health to change the law for private reasons and required counties to follow a different path altogether.

In 2007, the director of the department explained to me that we now were prioritizing services to “those most in need.” To do so, the department tossed the proven model to begin anew, with startups, and a new costly and endless stakeholder, planning and training process. This generated a bonanza for the consulting and contracting industry.

Mental health care in California is provided through a partnership of the state with each county. The new state regulations directed counties to spend the majority of Prop. 63 revenues on new programs for new clients. Counties were told to ignore the existing mental health programs, which, while underfunded and understaffed, are the primary source of treatment for mental illness.

Twenty percent of Prop. 63 funds are to be spent for prevention and early intervention so as to keep mental illnesses from becoming “severe and disabling.” But few such programs exist because state regulations prohibit counties from spending this prevention money to serve those “diagnosed with a serious mental illness or serious emotional disturbance.”    Continue reading →

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