True Stories–Mental Illness

RIGHT TO TREATMENT IS A CAMPAIGN BY MENTAL ILLNESS FACTS- Family And Consumer True Stories-TO DEMAND EQUALITY UNDER THE LAW.

 HOW TO POST YOUR TRUE STORY OR COMMENTS HERE: 

1. CLICK REPLY TO A COMMENT/STORY BELOW. FILL IN FORM WITH EMAIL ADDRESS, YOUR NAME OR A BLOG USER NAME OF YOUR CHOICE.   
Your Personal Information– or Name– or Email –Are Not Published or Stored,

                                                                  OR 

2. EMAIL YOUR COMMENT/STORY TO right2treatment@gmail.com, INDICATE THE PERSONAL OR BLOG USER NAME YOU WANT TO USE ON YOUR POST. “Anonymous” is acceptable; provide name of county if possible.  

3. REPORT YOUR STORY–please keep each contribution close to 600 words or less as possible. We realize this cannot cover a life story. That may take many reports–they are all welcome.    As you see from those stories already shared, consumers, family members, and providers tell us about the consequences of being denied timely, appropriate treatment, or a particular perspective they have today about their life experiences, or report early experiences that influence their relationship with the system for a lifetime, or discuss what is going on right now in efforts to find competent and appropriate treatment for themselves, a family member or friend, or a client.

TRUE STORIES TELL THE DECISION-MAKERS WHY CALIFORNIA MUST END DISCRIMINATION.

  • MAKE THE CASE FOR AN END TO DISCRIMINATION & PENALIZATION. 
  • CHANGE CALIFORNIA’S SHAMEFUL HISTORY.
  • CHANGE THE REALIGNMENT LAW THAT DENIES MEDICALLY NECESSARY TREATMENT.

FUND PARITY NOW– EQUAL ACCESS AND QUALITY FOR PHYSICAL AND MENTAL ILLNESSES.  

 

 

 

 

Thank you for your contributions. 

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7 responses

  1. ROSE KING. My young son Michael was diagnosed and treated in Sacramento before discrimination was legalized in California–and before mental health parity became the law. We turned to public mental health, he had an outstanding social worker with caseload of about 50, a good doctor on occasion, and service at numerous questionable clinics over the years with professional staffing in decline. Caseloads increased to 150 and training of providers decreased. In 2000, Michael had been in public mental health for about 15 years in several counties, as we fought to get treating doctors to talk to each other, to get medication records, to get capable counselors, housing that was not in crime/drug-ridden areas, and he sought respect and honesty. Around that time, he first went for treatment in Placer County for Hepatitis B and C–a serious and often chronic and deadly medical disease. A specialist told him he had a 50/50 chance of living five years.
    We learned that specialists will generally not treat people with mental illness who have hepatitis because the medication often causes depression, suicidal ideation and other risks–and the doctor lied to us about the deadly diagnosis. Devastated, we persisted and found a humane, extraordinary specialist at UC Davis when he moved to Sacramento; Michael stuck with and made it through six months of treatment, including injections to deal with a threatening drop in blood cell count almost every week. At the same time, the quality of mental health services was inadequate, inappropriate, humiliating, underfunded and neglected by county officials.

    On MediCal and Medicare, Michael was denied mainstream medical care for his mental illness, but he got the very best, top quality treatment for Hepatitis and was completely free of the virus, according to his doctor, and according to the autopsy taken after he died by suicide two years later. He could get life-saving medical treatment for Hepatitis, but only substandard, unethical treatment for his mental illness. He had no right to a decent standard of service in California. This unspeakable, criminal neglect is legal in our home state, where mental illness can be a deadly disease–and MHSA/Prop 63 Money treats special interests instead of mental illness.

    I have told Michael’s story at DMH “stakeholder” meetings, but Brown Administration leaders have no questions about this discrimination. Rose King

  2. Shannon Jonson | Reply

    As an MHSA paid peer-mentor and person with a serious mental illness, I attempted to change the status quo and on several occasions I mentioned (on the record) that MHSA is supposed to be held to a higher accountability. This was in the Prop. 63 Declaration-a promise to the public. I was terminated in Kern County for speaking out and questioning the misuse of MHSA funds. An “Axe-Man” was hired to drive from Delano to Tehachapi daily (taxpayers funds at work?) to get rid of me. Once I was gone, he was no longer needed. Retaliation is real and the abuse will not stop until the public demands “oversight and accountability.”

    Now I am back on disability. MHSA was supposed to keep me employed in Kern County, so I can contribute to society.

    I am lucky to have people in my life that love me. If not, this could’ve turned out very badly for me. As a person with a serious mental illness, I am appalled by the “MENTAL HEALTH ADMINISTRATION/MANAGEMENT involved in this unethical behavior toward me. Those involved in the retaliation against me should have their licenses revoked by the Mental Health Board of California.

    MHSA Oversight for Kern County is Lacking!!!!! If the public were to press the Department of Mental Health (DMH) for answers to the complaints they have received by by clients such as myself and various others, the public would quickly see that the promise of “Accountability” to the taxpayer doesn’t exist.
    I found this out first-hand.
    Oh it gets better. Then there was talk of diverting these same funds (8 Billion) to the counties throughout California…these same Counties that retaliate against those who question the waste of these funds. I’m speaking from experience. Now how can the DMH divert anything without public input? I do not recall any verbage on the ballot in 2004 that states “when the DMH decides not to be responsible to the taxpayer for their hard earned money, the DMH will hand away Billions to the counties to ensure zero oversight.”
    -Shannon Jonson. Tehachapi, Ca.

  3. I posted this locally requesting Ventura County Mental Health Services Act (MHSA) stakeholders process,
    better and more frequent communications from VCBehavioral Health department regarding positive outcome.
    There is inadequate partnering with consumer/family member stakeholder in systems process here. I experience
    little outreach and engagement from Ventura County Behavioral Health department on systems change. The best innovative programming
    has been consumer sourced, or NAMI. The original recovery model MHSA contract language is meant for an engaged trasformational process. I save everything, and have many systems related contributions that get non-utilized or marginalized.
    Everytime I discuss woeful shortfalls in local and state administrative of stakeholder funding, I am told by Ventura County
    Behavioral Health ” we are not perfect.” VCBH has added 150 positions, for a total of 500, but consumer and family member partnering are not adequate to that mix, resulting in the growth of the department as an expanding bureaocracy without providing needed direct services . As is the funding, which is unbalanced and top heavy- a two tier system, with the bulk of monies going towards county salaries and administration. Hope to have on-going discussions on inclusive systems change and transformation as written into Services Act.

    Moving forward to OVERSIGHT- we have been waiting over a year for a Ventura County MHSA oversight meeting.
    It is overdue and neccessary for Systems Transformation and Compliance: In a pro-MHSA article by local agency Telecare which touts the broad success
    of the services act here- my written rebuttal: “Not at all my experience as consumer:” No unified approach to MHSA. It is a WE (County) verses You
    (Stakeholder-Consumer) and feels like common and acceptable governmental inertia. Many of the rank and file county staff are hardworking
    thoughtful personnel, who need view broader
    picture of MHSA Stakeholder design, not forthcoming from from the director, who practices unilateral decision making. I have experienced endless promises,
    endless requests, no results, no communications, no meetings as indicated. My treatment here can be compared to Charles Dickens novel from 19th century
    England- traumatized for rest of life, left for dead or somehow sort through things. MHSA intended results have been a train that never left the station,
    waiting for something promised that will never come. It resembles shades the Dark Ages of consumer movement, surviver background, where people lived
    underground in campsights and organized to put the services act on the state ballot. County shortfalls result in a Two tiered system, creates misery and
    backwards motion. My desired outcomes, based on lived experience, are for designated employment with parity and fair compensation, upward mobility
    as written by MHSA, and on-going healthy broad discussion of systems transformation for stakeholder/consumer/family member
    and Ventura County Behavioral Health officials access towards broadly realized goals and policy formation.

    Pete LaFollette 5/9/12
    MHSA Consumer/Stakeholder/Advocate- Ventura California

    1. Patricia Guterez | Reply

      Along with Shannon Jonson’s story, I’ll add mine. I was “let go” after losing my husband of 25 years and having a workman’s comp. injury on the job. This all happened very close to each other. The judge in Oxnard ruled that I was erroneously terminated and that I should be able to get my job back. Who wants to go back to the mismanagement of Prop 63? Not me. Not anyone. I feel there should be more public hands on control over this money that is provided by the tax payers. I have suffered enough due to my schizophrenia all my adult life, but to have to suffer by the people who are supposed to be protecting you is unforgivable. Where is the justice? I am someone who believes in Shannon Jonson’s outrage over being “let go” after years of dedicated service to our mentally ill in our community. I’d like to see her win her case against MHSA or the abuse that happened to her within our so called “mental health system of care!” Phooey! All they care about is lining their pocket books.
      Patricia L. Guterez

      1. Thank you for your call for justice. Shannon is fortunate to have your support

  4. Best of luck. Keep fighting the good fight. Thanks for starting this

  5. Dear friends,

    The recent video and story (http://on.myfox8.com/WDMdtlF) about the father of a young boy with autism sparked appropriate debate and outrage. His young disabled son was being cast as unruly and violent, behavior not consistent with the father’s experience of his son. To find evidence of this behavior, the father placed a recording device with his son, which captured unspeakable abuse and unprofessional conduct. The father appeared to be seeking the truth and a just culture solution. He didn’t want to sue and get rich off of a broken underfunded system. He wanted accountability. He wanted to fix the system, protect his son and all of those like his son.

    I have often used these words to describe my passion and advocacy for change in the California mental health system. I want accountability. I want to fix the system, protect my son and all of those like my son. I wonder what I would hear if I placed a wire on my son at Napa State Hospital. Unfortunately, I cannot place a wire on my 29year old son who has been locked up and institutionalized his entire adult life because of a brain disability. I must rely on newspaper events, rumors or the confidential confessions of line staff that are often the brave whistleblowers. I am frightened to my core by the things that I read, hear and know based on my own lived experience. I am also frightened by the silence and the tendency to look the other way when we know that harm is being done.

    Whistleblowers are heroes in our society. They are the brave individuals who challenge the status quo, demand accountability and seek justice for the public, our communities and our most vulnerable. I have described Rose King as a hero to me. She spoke out about the waste and failed implementation of Prop 63. She formally blew the whistle in a complaint filed with the California State Auditor. The lack of public response was stunning. The silence was frightening.

    Behind closed doors or in trusted conversations people were championing Rose’s complaints. But, the wagons were circled, public relations campaigns were launched, myths about system transformation were perpetuated and the status quo remained. I know that there are heroes among us who are living in silence out of fear of retaliation, stigma or shame. We need you to join us.

    We have family members who go to support groups and describe crisis level trauma that exists for their loved ones and their families but many are too exhausted or frightened to take their pain public. They thought that Prop 63 was going to help them and their loved ones. They have had their children left in emergency rooms for days because inpatient beds were not available. They have watched their children discharged too soon. They have watched their children incarcerated. They have watched their children released in the dark of the night to the streets and disappear. They have watched their children die by suicide. They have watched their children and other people’s children kept out of sight and out of mind…. literally.

    We have line staff and administrators that go to work everyday to do good work in a public mental health system that has been “underfunded from the start”(Van Maren, 2000). They are tired, stressed, and afraid to speak out for fear of losing their jobs. They thought that Prop 63 was going to provide the extra staff to the crumbling system of care, increase access to their clients who are dying too young, provide more housing for less restricted care, more supports for their clients who have no family. Have they seen the funds used appropriately? Have they been given respect for their service? I don’t think so, but they still show up and do heroic work and hope that things will improve.

    We have consumers who are experts in surviving the discrimination. They had the courage to stand their ground and demand change. They rightfully commanded, “Nothing About Us Without Us.” They blew the whistle and they were heroes. Some of these survivors have lived in Napa State Hospital where my son lives today. They know the truth. They have watched their friends die while asking for help. They have stood before local leaders and respectfully stated, “We are not throw away people.” But, were they heard? Was there sustained, measurable improvement? Has the core system been transformed after 8 years and 8 billion dollars of MHSA funding? Are ALL of their fellow consumers being given the necessary supports to recover in the community?

    In many cases, consumers and families are being propped up as mouthpieces to help maintain the status quo. Those who speak against the status quo often experience retaliation and are told, “It isn’t the right time.” When will it be the right time? If not now, when? Have we not waited long enough for equity in health? If we are to have the right care, at the right place, then it is the right time to speak up and tell our true stories.

    My purpose is not to personally attack, play gotcha games or deny success and improvements. I acknowledge the efforts of many who have given their all to system improvement and I celebrate every recovery success. I will partner with all who seek equity, justice, continuous improvement and health for all. We are not even close and until we are, we must continue to respectfully challenge the status quo and never, ever give up.

    Please join Rose King and I and share your FACTS on mitruestories.wordpress.com.
    Create a unique Username in order to aid anonymity, if desired. Please be assured that identifiable information and emails are never published.

    In Partnership,
    Teresa Pasquini, Mom

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