FASMI

Advocacy/Activist Updates

We founded FASMI (Families Advocating for the Seriously Mentally Ill) in about 2018, to continue the work of Voices of Mothers and Others (VOMO).

My own journey with my family member has gone on seven years.  Like so many people I met through VOMO and FASMI, I journeyed from worry and bewilderment, to naivete and optimism, to disbelief, and then to rage at the terrible risks the system was putting my dual-diagnosis daughter through.  They let her spend a couple summers wandering the streets of the Bay Area taking meth and being alternately helped and abused by strangers.  She had “the highest level” of case management, but her case manager couldn’t find her or do anything for her.  She was discharged to a licensed, official “board-and-care” that provided no care but gave her every chance to take meth and disappear.   At times I was prevented from seeing her, communicating with her, or finding out what was going on with her illness.  It made no sense at all.

Someone advised me then that family members like me had a choice of sinking into resignation or resolving to fight the system and force it to commit to keeping our family members alive and safe.  

Along with people in VOMO and FASMI, I went to meetings, shared stories, learned impenetrable acronyms, picked up all kinds of advice and generalizations about what the system could and couldn’t do, and tried to figure out who was on our side (if anyone), who was the enemy (if anyone), and where these barriers and disappointments were coming from.

Why FASMI Wants Beds

FASMI has an agenda that is a work in progress, but at the top our agenda always has more acute and subacute beds.  

It is so obvious to us that there are not enough beds. So many times, our family members could go one way or another.  They could get treatment or they could wait. They could be held or they could be turned away.  They could go to jail, or they could go on the street and get in trouble.  So many times we were told that they couldn’t be held at somewhere that might help—John George, Villa, Gladman, Psynergy—because there just wasn’t a space for them.  And if they got in, often we were told that they had to be discharged before they were ready so someone else could have their spot.

So many innovations and changes are proposed to help the seriously mentally ill—72 of them recently by a county task force—but so many of these changes do nothing to fix the problem we see.  This is why we decided to demand actual, concrete things, hospital beds as well as board-and-care beds, and see who is with us. 

This county can be measured and judged by the places it holds its seriously mentally ill.  Several hundred of them (25-30 percent of the jail population) may be in Santa Rita on any given day.  Three thousand or more may be homeless on the street.  Others are living at home in shaky circumstances, with family members hoping for help with their next crisis.  But only some 300 people with SMI at a time can be in hospital beds, even if they need them desperately, and even if a couple months of treatment would have a good chance of restoring them to some kind of autonomy.  

Solutions that don’t address the lack of these actual places do not solve our problem.  In coalitions and in national groups we are accused of talking about beds too much.  But we have to talk about them, or our coalition partners will just put these beds further and further off into the future. 

And when our national and state organizations fail to talk about beds—fail to talk about getting rid of Medi-Cal’s IMD exclusion, fail to talk about funding for new construction—they put off a solution further and further into the future.  The “big tent” that embraces all mental illness and substance abuse can get so big that the troublesome 1 or 2 percent that are too sick to demand treatment are left out of the solution.

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Homeless figures—2019 everyone Home count, 8000 homeless, 39% report self-report psychiatric conditions

Santa Rita figures:  DAC’s discussions with ACBH and the Jail

PUBLIC POLICY involves local, state and national legislative advocacy. It is the intent of this web site to note relevant current bills and provide an overview for the reader. The following websites are valuable as references in that they will explore the bills in a more comprehensive manner, with more detail at times than will be provided here.

http://mentalhealthcrisisday.com/hr2646.html

http://lauras-law.org

http://mentalillnesspolicy.org/states/lauraslawindex.html

http://mentalillnesspolicy.org/states/lauraslawindex.html

http://mentalillnesspolicy.org

Urge California to Appy for an IMD Exclusion

   An IMD is an Institute for Mental Disease facility that can offer more than 16 acute inpatient hospital beds. The federal IMD exclusion has barred the use of Medicaid payments for these facilities.

Historically, the exclusion was considered a preventive measure against the “warehousing” of individuals with mental illness. In the light of the housing crisis and the recent instances of mass shooting violence, there are efforts being put forth to have waivers given to states to address society’s needs for an increase of treatment interventions. Waivers will be awarded where robust community-based treatment services are offered as well.

The absence of appropriate mental health treatments offered within a full range of service options has brought us to the point where jails and prisons have become the primary dumping ground for our family members. So we join with NAMI California and other NAMI affiliates across the state in advocating for application for the waiver.

Please address your concerns regarding this to Jennifer Kent, Director, Department of Health Care Services, PO Box 997413, MS 0000, Sacramento, Ca 95899-7413 or jennifer.kent@dhcs.

SARDAA – Schizophrenia and Related Disorders of America

      Current advocacy efforts for the hoped-for reclassification of Schizophrenia as a neurological disorder are being spearheaded by the nonprofit Schizophrenia and Related Disorders Alliance of America (SARDAA), whose website is sardaa.org. We recommend you take a look at the site along with the comprehensive, well researched letter and join the advocacy by sending on the letter or your own.

 The letter provides an excellent overview of the disorder, describing the research evidence as “overwhelmingly … indicating that the disease is a brain- based highly heritable … neurodevelopmental disorder. … Prevailing hypotheses … include dysregulation of the dopamine, glutamate and GABA neurotransmitter systems. Synaptic pruning—a critical process that refines neural circuits … is perturbed, in particular during adolescence … significant enough to show decreased grey matter volume in structural MRI studies of schizophrenia.”

This disorder shares features with the two neurologically based disorders of Alzheimer’s and Parkinson’s disease (brain/cognitive deterioration along with social/sensory/motor/affective disturbances, brain structural and functional changes, clinical rather than lab-based diagnosis, genetic basis, treatment via meds and research approaches). The main difference is the paucity of timely and appropriate care for the individual with schizophrenia, with “striking rates of patients being untreated, homeless and incarcerated … associated with much suffering, debilitation and public health cost.”

 So if you’d like to encourage a more humane and studied approach to mental illness that fully realizes that we are dealing with a brain/neurological disorder, we recommend that you take a look at the SARDAA website and do some advocacy towards that end.

Help Build the Mental Health Movement

By Laura Greenstein

Together, we are a movement. Our movement explains what it really means to experience mental illness. Our movement shows people experiencing mental illness that they are not alone and there is hope. While it’s a slow process, our movement is becoming louder and more persistent every time a celebrity speaks out, an article is published or an individual shares their personal story. Our movement is growing, strengthening and becoming more visible.

We need to keep this momentum going. The harder we work, the more people will learn, understand and empathize. The societal perception of mental illness won’t change if we don’t work to change it. So, here are just a few ways we can continue to push our cause forward:

With Words

Start conversations. To reduce mental illness-related stigma, we need to feel comfortable having conversations about it. The more we talk about mental health conditions, the more normalized it becomes. Starting the conversation is the first step.

Correct stigmatizing language. Language won’t evolve unless people realize their words are hurtful. Calling someone “insane” or “crazy,” defining a person by their condition or using mental health adjectives are all harmful habits that perpetuate stigma. If you hear someone using stigmatizing language, let them know.

Share your story. Sharing mental health struggles helps spread the word that mental illness is real. And sharing mental health recovery stories helps spread the word that if you live with a mental illness, you can get better.

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Become an author. One of the best ways to spread awareness is through writing. Articles circulate all over social media and the Internet. They can be seen by thousands, even millions, of people. If you have something to say or a piece of advice, don’t hesitate to share your wisdom with the world-wide web.

With Actions

Represent the cause. There are many ways to show that mental health is an important cause to you, but it’s even more powerful to make that dedication visible. Consider wearing the NAMI x Lokai bracelet, a bracelet that represents the highs and lows of mental health. Lokai created this piece to let everyone know: “We’re in this together, so don’t walk through your toughest day alone.” If you catch someone eyeing your bracelet, tell them what it stands for.

Educate. Teach people about mental illness by becoming a NAMI In Our Own Voice presenter or teaching NAMI Ending the Silence to a group of young people. Be the one who teaches someone struggling that what they’re going through isn’t their fault and how they can get help.

Advocate. With the current mental health system, not everyone is getting the services and treatment they need. When you see an opportunity to influence your local government about mental health legislation, call, email or tweet at them to let them know the importance of mental health care.

Volunteer. There are so many ways to get involved—volunteer for an information line or crisis line, walk or volunteer at your local NAMIWalk, join a NAMI on Campus club—it’s up to you how you can support the movement.

Your effort to end stigma, to advocate for mental health reform, and to build better lives for those affected by mental illness are the reasons why our movement is growing stronger every day. We appreciate your support and everything you do to make our cause visible.

– See more at: http://www.nami.org/Blogs/NAMI-Blog/March-2017/How-You-Can-Help-Build-the-Mental-Health-Movement?utm_source=naminow&utm_medium=email&utm_campaign=naminow#sthash.5OA0N8Ex.dp

Communicating with Hospitals and Mental Health Professionals

If your relative/friend has been hospitalized . . .

Naturally, you are concerned and have an understandable desire for information. You may also have helpful information to share. In fact, it is likely that no one knows the situation like you do.

If the patient is 18 or over, confidentiality laws protect his/her right to privacy. This means that your relative, partner or friend must authorize the treatment facility to contact or disclose information to you before they are allowed to involve you in these ways. A separate Release of Confidential Information form must be signed for each admission, and for each individual seeking to be involved in the care. Ask your loved one if they will add you to their list of individuals authorized to speak to their providers. Staff at the nurse’s station have this form in your loved one’s files.

YOU CAN GIVE INFORMATION, EVEN IF YOU CAN’T RECEIVE IT

AB 1424 is a California law requiring that relevant information provided by the patient’s family about the historical course of a patient’s mental disorder be considered in the legal process when determining whether probable cause exists to involuntarily detain a person for up to 72-hour for evaluation and treatment or for up to 14 days of additional treatment.

Filling out the AB 1424 form developed for use in Alameda County is the best way to assure that your particular, personal understanding of your loved one’s situation can be considered. Alameda County’s AB 1424 Form is available on-line at www.acbhcs.org>AB1424-form.

If feasible, you should fill out the form in advance, keep the information current and have extra copies on hand. If the police or other professionals are called to determine if your family member shall be detained and treated involuntarily (“5150”), give a copy of the AB 1424 form to them to take to Psychiatric Emergency Services. You also can deliver or fax the form.

Confidentiality is often a barrier issue for family members of adults as you try to help your loved one. The AB1424 Form can help by putting a medical history as only you know it in the hands of professional care providers. The care providers would not know this material without your input. For you to hear the facts about your adult loved one’s case requires that he/she sign a release of information. The release form given here is a sample form that might be recognized by an institution, though most prefer their own form. Release forms can specify particular information and dates when it is in force.