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Snowbird

Hope you have a good weekend everybody!

FOR NOW, I'M THANKFUL ADAM IS ALIVE by Audrey Adams Auernheimer

We traveled, yet again, to another state for our son’s court appearance on Tuesday of this past week. Adam has spent five months in the county jail. We’ve traveled the five-and-a-half-hour distance from our home eight times in order to support him in his desire to represent himself in court. Most of his court dates were postponed at the last minute.

At long last, he got his requested bench trial before the judge. Of course, our son's defense was scattered and unfocused, and he failed miserably. The judge ordered him to be released to our care, with mental health treatment. That is about the best outcome we could hope for, considering the broken mental health system.

It’s winter. We don’t want Adam released to the streets. However, he’ll have a six-month probationary period, during which time he can be returned to serve a two-and-a-half-year jail term on charges of harassment by phone, and breaking a no-contact order.

This is our third child who’s been diagnosed with serious mental illness. Our two other children are deceased by suicide. My husband and I are tired. For now, I’m thankful Adam is alive. Thanks to those of you who are prayer warriors in this unfolding, seemingly never-ending drama. Only our strong faith keeps us moving forward. We have very low expectations for effective care through the medical or legal community. We’re not trying to be negative. We’re just well versed in the ineffectiveness of the system. 

Audrey

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Winter waves.

Hope you have a good weekend everybody!

SUPPORT RECLASSIFICATION OF SCHIZOPHRENIA AS A NEUROLOGICAL DISORDER by SARDAA

Many, in the mental illness community, support SARDAA’s (Schizophrenia and Related Disorders Alliance of America) efforts to have schizophrenia reclassified as a neurological disorder. Read their background information and arguments. If you agree, click on the link below to submit your support of their letter. Thanks so much. Dede

May 21, 2018

Dr. Elinore McCance-Katz
Assistant Secretary for Mental Health and Substance Use
Interdepartmental Serious Mental Illness Coordinating Committee
Substance Abuse and Mental Health Services Administration
5600 Fishers Lane
Rockville, MD 20857

Dear Dr. McCance-Katz,

On behalf of the Schizophrenia and Related Disorders Alliance of America (SARDAA), we are writing to applaud the Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC) on your work advancing the understanding and delivery of services to those with serious mental illness (SMI) and serious emotional disturbance (SED). In light of the scope of work outlined in your charter, we would like to submit our recommendations for the reclassification of Schizophrenia as a neurological disorder. One place to start is including schizophrenia in the implementation of the National Neurological Conditions Surveillance System with the 21st Century Cures Act (P.L. 114-255).

Founded a decade ago, the Schizophrenia and Related Disorders Alliance of America promotes improvement in lives affected by schizophrenia-related brain illnesses (mental illnesses involving psychosis). SARDAA promotes hope and recovery through support programs, education, collaboration, and advocacy. Our vision is that every person living with schizophrenia-related brain illness receives respect, appropriate treatment and an opportunity to live a meaningful and satisfying life in a compassionate community free of discrimination.

What is Schizophrenia?

According to current DSM-5 criteria, the diagnosis of Schizophrenia requires two of the following symptoms, with at least one from the first three:

• Delusions

• Hallucinations

• Disorganized speech

• Disorganized or catatonic behavior

Negative symptoms (e.g. diminished emotional expression or motivation)

Although the precise causes and mechanisms underlying schizophrenia continue to be actively researched, there is scientific consensus that the illness is a brain-based, highly heritable illness. There is also overwhelming evidence that schizophrenia is a neurodevelopmental disorder. (1,2) with disease processes commencing early in neurodevelopment and manifesting as subtle neurologic and behavioral abnormalities long before overt DSM-defined illness onset.

A landmark research study identified 108 genes associated with risk for schizophrenia, including those relating to dopamine receptors, glutamate transmission, synaptic plasticity and the immune system. (3) The prevailing hypotheses concerning the pathophysiology of schizophrenia include the dysregulation of the dopamine, glutamate and GABA neurotransmitter systems. Synaptic pruning — a critical process that refines neural circuits during neurodevelopment — is perturbed, in particular during adolescence, consistent with the typical onset of illness during this period and into young adulthood. (4,5)

Importantly, such disturbances in pruning have recently been linked to the Major Histocompatibility Complex (MHC), by far the strongest of the 108 risk gene associations in the aforementioned study. Specifically, certain variants of complement component 4 (C4) of the MHC have been found to lead to excessive pruning, (6) thereby providing a mechanistic link between genetic basis for schizophrenia and the observed neurobiological findings in the illness (for commentary, see https://www.youtube.com/watch?v=s0y4equOTLg).

Pruning anomalies are significant enough to show up as decreased grey matter volume in structural MRI studies of schizophrenia. (7) A myriad of functional MRI and electrophysiologic studies have shown disturbances in brain and cognitive functioning. (8,9) Thus, while much work remains in fully elucidating the origins and mechanisms of schizophrenia, there is consensus and overwhelming evidence of the genetic and brain basis for the illness.

What is the Personal and Public Health Impact of Schizophrenia?

Schizophrenia can be found in approximately 1.1% of the world’s population, regardless of racial, ethnic or economic background. Approximately 3.5 million people in the United States are diagnosed with schizophrenia and it is one of the leading causes of disability. Three-quarters of persons with schizophrenia develop the illness between 16 and 25 years of age, thus derailing affected individuals during this critical period in successfully reaching important educational, vocational and social milestones.

Unfortunately, the delays from the illness onset to receiving treatment is typically very long, ranging from 22 to 150 weeks, (10) with longer durations of untreated psychosis associated with poorer clinical and functional outcomes. (11,12) After the first episode, psychosis relapse rates are very high, up to 82% in the first 5 years. (13) At five years following the first episode of psychosis, only 13.7% achieve both symptom remission and adequate social functioning. (14)

The long-term consequences of this chronic illness can be devastating. Eleven percent of the homeless population have a diagnosis of schizophrenia, with higher rates in younger persons (13% for 18–30 years old; 21% for 31–40 years old), women (twice the rate of men) and the chronically homeless (18%), with slightly less than half not receiving treatment. (15) Individuals with schizophrenia are prone to premature death, with life expectancy 14.5 years shorter than the general population. (16) Sadly, 40% of this is due to suicide, (17) with 5% lifetime completed suicide rates in schizophrenia, (18) most being shortly following illness onset, with suicide attempts at 25-50%. (19,20) Whether patients receive timely, appropriate treatment has great consequences.

Treatment and other economic costs due to schizophrenia are enormous, estimated at $156 billion annually, with the largest

What is the Stigma Associated with Schizophrenia?

Patients with psychosis are frequently exposed to negative stereotypes, stigma and social exclusion associated with their diagnosis. Unfortunately, patients and their families often engage in self-stigmatization, blaming themselves for the disorder and wondering what they could have done differently to prevent the illness. Understanding schizophrenia and other psychotic illnesses as neurological disorders would help the community at large in viewing these illnesses as they do other medical illnesses such as cancer or diabetes.

To reduce stigma and increase understanding, SARDAA initiated the Hearing Voices of Support initiative. During Schizophrenia Awareness week in 2017, SARDAA spearheaded an interactive public art installation in New York City, entitled Psychosis: Changing Perceptions Through Art & Science. This exhibit, in coordination with creative agencies The Bloc Communication Partners, Cavort and Glowing Bulbs, Inc., allowed participants to step into “cones of light” where they experienced the associated symptoms of schizophrenia (lights, auditory effects, fog, etc.) while experiencing a personal story including suggestions of what is helpful.

Congressman John Culberson (R-TX) and Congresswoman Eddie Bernice Johnson (D-TX) are co-sponsoring a similar, smaller-scale installation in the first-floor foyer of the Rayburn House Building Offices June 27-29, 2018. The Capitol Hill installation aims to promote better understanding of schizophrenia among Members of Congress and congressional staffers; unfortunately, the larger obstacle of stigma for those with schizophrenia still remains. On June 28, 2018 in Rayburn 2103, SARDAA will present a Scientific Legislative Briefing presenting neurological evidence of schizophrenia and anosognosia.

Hiding in Plain Sight: Is Schizophrenia Not Already a Neurological Illness/Disease?

Some may ask — why is this even a question? Depending on the audience, it may not actually be a question. The defining feature of schizophrenia is psychosis, manifested primarily by delusions and hallucinations. Psychosis is not only associated with schizophrenia but also dementia, Parkinson’s disease, stroke, brain tumors, and the use of drugs or alcohol. With such clear associations with brain-based processes, it would seem clear that schizophrenia-related psychosis is also rooted in the brain. In the mental health treatment context, it is a no-brainer, so to speak — of course it is a brain disease! It is no more a question that it arises from disturbances in brain function than one questions whether Parkinson’s disease or epilepsy arises from the brain.

In the clinic, or even more poignantly, in a psychiatric inpatient unit or emergency room, a patient with severe auditory hallucinations or delusions is excused from any immediate responsibility or culpability for their symptoms. The symptoms are not simply a ‘behavioral problem’ — rather, any clinician with experience treating schizophrenia will recognize how a patient’s thoughts, emotions and behavior have been hijacked by a process that is beyond their control. Historically, the ‘hijacker’ may have been assumed to be the result of a demon or spirit (c.f. epilepsy which, historically, was attributed to demonic possession), or poor parenting; in the modern day, there is no question that it is a neurological process.

Stepping from the clinic and into the lab, one will find assumptions regarding the biological basis of schizophrenia even more firmly ensconced. We are well beyond what are now considered quaint notions of the ‘schizophrenogenic mother’ or psychosis as a social construction, and questions regarding the biological basis of schizophrenia have long since moved from ‘if’ to ‘how’. A plethora of genetic, post-mortem and neuroimaging studies have demonstrated clear evidence of the biological underpinnings. Perhaps one of the more simple, compelling facts that undergirds the biology argument is heritability and twin concordance: if one of an identical twin pair has schizophrenia, the other will have a 50% chance of also having schizophrenia, even if raised in a different environment. This number is comparable to that for Alzheimer’s disease and greater than that for Parkinson’s disease. (24,25,26)

If schizophrenia having a neurological basis is such an obvious given for clinicians and scientists — people that are ‘in the know’ — why does this question remain in the general public? The answer is likely to be a complex mix of factors that includes a lack of proper education of the public and historical inertia in the systems of care that cater to the schizophrenia population (e.g.psychiatry vs. neurology), as well as how this care is paid for (e.g. structure of reimbursement codes by Centers for Medicare and Medicaid Services).

Whatever the reasons for the disconnect between established clinical/scientific knowledge regarding schizophrenia and the inadequacies in the systems of care for the illness, there is utmost urgency in bridging this gap. As outlined above, for many individuals with schizophrenia it is literally a matter of life and death. We believe that re-classifying schizophrenia formally as a neurological disease will be an important first step for this urgent priority.

Why Should Schizophrenia Be Included in the National Neurological Conditions Surveillance System (NNCSS)?

We have general prevalence estimates indicating that 1.2% of all Americans – roughly 3.2 million people — have schizophrenia from the National Institute of Mental Health (NIMH). Beyond that broad approximation, we just do not know much more about this patient population. In particular, if we turn to public mental health agencies, who provide the vast majority of publicly financed inpatient hospital and community-based services for people living with schizophrenia, the lack of basic data is striking. For example, baseline demographic data on gender, average age of onset, race, religious affiliation, ethnic background and income are often completely absent. That lack of information often extends to the realm of service delivery. State mental health agencies often struggle to identify the specific type of care provided, the penetration rate for mental health and related support services in a given geographic area, the intensity of service delivery for each patient with schizophrenia and, most importantly, verifiable clinical outcomes. An amendment to the National Neurological Diseases Surveillance System could begin to help answer these baseline questions.

A comparison of schizophrenia to Alzheimer’s disease and Parkinson’s disease — two disorders that unambiguously have a neurological basis — quickly makes a compelling case for schizophrenia finding its proper diagnostic home in the neurological disorders (see Table below). All three disorders share multiple features including significant brain and cognitive deterioration, diagnostic approach, types of treatment, having a strong genetic basis, clearly speaking to the consideration of schizophrenia as a neurological disorder (interestingly, schizophrenia appears more heritable than Parkinson’s disease).

Where these disorders depart company, unfortunately, is the personal and social impact for diagnosed individuals. With a diagnosis of Alzheimer’s or Parkinson’s disease, the clinical paradigm of providing timely and appropriate care is robustly in place. With schizophrenia, a similar paradigm is far from guaranteed, especially in the longer term, with striking rates of patients being untreated, homeless and incarcerated. Thus, while schizophrenia appears to legitimately deserve consideration as a neurological disorder based on clinical and scientific grounds, the lack of recognition of this reality has sadly been associated with much suffering, debilitation and public health cost.

We believe that the inclusion of schizophrenia in the NNCSS could be an important first step towards understanding schizophrenia better, reducing stigma in the illness, and re-invigorating our orientation towards timely and appropriate treatment as well as making incarceration and homelessness unacceptable outcomes for schizophrenia. We appreciate the chance to provide our recommendations to you on this matter. We are happy to provide any additional information or comments that you may require.

Regards,

Linda Stalters, MSN, APRN (ret)
Chief Executive Officer & Founder
Schizophrenia And Related Disorders Alliance of America

Raymond Cho, M.D., M.Sc.
Chair of the Board of Directors
Schizophrenia And Related Disorders Alliance of America

Click on the link below to sign on to support this letter. Thanks so much.

www.sardaa.org

HAPPENING NOW: HAVE YOU SEEN MY SON? by Kelli Nidey

February 19, 2019: I don't usually talk about this. My oldest son, Mitch, has battled bipolar disorder for a long time, and has suffered from a head injury. He’s overcome addiction and the extremes of mania with medication and religious devotion, but a few months ago, he went off his medication.

Today, after the best week he’s had in many years — painting a beautiful picture for me, hanging out with old friends, volunteering at Helping His Hands, cleaning the house, and walking the dog — Mitch packed his bag and left while I was in another room.

He messaged that he’s headed to California because, “God wants me to save the lost there.” He’s taken off, before, and gone as far as Colorado where he was lost in a snowstorm and rescued by a good samaritan. He went to California with a homeless veteran, during a very bad time in his life. He’s always survived but I’m terrified, every time he leaves like this, I’ll get the worst kind of call or never hear from him again.

I don't know why I'm sharing now. I’ve been down this road so many times. I guess I’m tired. And I know there are other people struggling with PTSD or the neurological disorders that we label mental illness. I'm also hoping, if anyone sees him, they’ll help him get home.

I’ve rented him a hotel room in Carlyle, Illinois. I feel like I am enabling him, but right now, I don’t want him to freeze to death.

February 22, 2019: Mitch is hitchhiking and stayed at a hotel in St Charles, Illinois last night — the Sleepy Inn near highway 370. He was leaving there, this morning, to go further west. The night before, he stayed outside and I had the police check on him. He stopped at a hospital there for back pain but he didn’t stay. At the time the police talked to him, he was dressed warmly, cooperative, and spoke lucidly. They didn’t feel like they had enough to force him into the hospital. The local hospital wouldn’t help because he’d crossed state lines.

People helped him, this evening, and he’s now in Troy, Missouri. Someone fed him, and bought him socks and foot medication. I rented a room for him, in Troy, so I can sleep tonight. I feel like I’m on a roller coaster. Mostly, I’m trying to keep track of his whereabouts, and praying he stays warm.

My other son is away at college, with his girlfriend, so he’s been able to separate from the drama. I started a demanding job a few months ago. Thank God I have it or this would be even more stressful, financially.

A friend shared that her son is traveling the country in a bus he bought, and that he lived on the streets one winter. I had no idea her son was sick. We all hide and isolate.

February 25, 2019: This past weekend, in Troy, Missouri, Mitch said, “I still plan to travel west.”

He’s walking.

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Great news from Gold Country Wildlife Rescue: Our #CampFire bobcat — the one whose paw pads had fifth-degree burns down to the bone — was released back into the wild. His rehabilitation took 11 weeks of continuous care at our rescue facility. From the day this bobcat arrived at our Wildlife Intake Center, he wanted to kill us. We consider that a success for two reasons — despite his critical injuries, he had the will to survive and our patients must remain wild to be able to be released. Click here to watch full YouTube video.

Hope you have a good weekend everybody!

THIS IS A MORAL MOMENT by Teresa Pasquini

Please share and use my comments, delivered to the CA 1115* (explanation below) Stakeholder Advisory Committee, to educate and advocate for families like mine in California. Feel free to forward them to Governor Newsom, your state representatives, your local board of supervisors, your local NAMI chapters, faith communities, district attorneys, law enforcement agencies and to anyone who will listen and learn and help us stop the inhumanity. Tell them about my Danny and how he survived solitary because he received long-term care in a IMD (Institution for Mental Disease).

The IMD Exclusion* (explanation below) is the nexus to the criminalization of serious mental illness. It defunded adequate hospital care 50 years ago and incentivized the SMI (Serious Mental Illness) patient to prisoner pipeline. It is not civil and it is not right.

FEBRUARY 13, 2019

My name is Teresa Pasquini, a local state and national advocate for people who live, heroically, with severe mental illnesses. I am here, today, to urge this committee to support families like mine from around the state who are calling on Governor Newsom, the legislature, DHCS, CSAC, CBHDA, and all county leaders to apply for the IMD Exclusion Demonstration Waiver for the SMI/SED (Serious Mental Illness/Serious Emotional Disturbance) population as soon as possible. 

If we want a California for all, then we need a psychiatric continuum of care for all. And all must mean all. If we are truly going to prevent, intervene, integrate, and transform the disparities in the health and criminal justice systems in California, then we must focus on the most seriously mentally ill population. We must agree to not only complete the community mental health system, but to also rebuild the psychiatric hospital-based systems. This should be a both/and, not an either/or priority. This new waiver provides this opportunity. 

Following the Newtown tragedy in 2012, families from across the country united to lobby Congress and tell our stories. Many of us believe that serious mental illness is the greatest health disparity of our time. We believe that understanding the implicit bias, cultural disparities, and system prejudice against all people with serious psychiatric disorders is critical to transforming the systems that have led to the trans-institutionalization of our loved ones. 

Few people understand the legal and fiscal discrimination against people with serious mental illnesses in California. They know that we have a lot of money from Prop 63 and ACA but they don’t know that federal and state parity does not apply to those on Medicaid and Medicare. They don’t know that public community services are only funded “to the extent resources are available.” Few people understand that, when we cut the 1991 Realignment budget to fund other entitlements, we prevented counties from providing adequate, medically necessary treatment in a mental health rehabilitation facility for people with SMI. Few people understand that the IMD Exclusion prevents federal funding for long-term psychiatric hospital beds; or the direct correlation between the closing of hospital beds and the increase in mental-health jail cells.

But, I understand it because I am the proud mom of a 36-year-old son, who lives with schizoaffective disorder, and has spent the majority of his adult life in locked facilities throughout the state including two state hospitals, PHFs (psychiatric health facility), MHRCs (mental health resource center), and county jails. Because my son’s right to treatment has been waived, he’s been failed, jailed, and criminalized. He’s been insured by Medicaid and determined to be disabled because of his illness since the age of 19. However, until recently, that hasn’t guaranteed him access to the continuous, medically necessary treatment he needs to fully stabilize and live in the community. The archaic IMD Exclusion has discriminated against my son and families like mine for too long. It is not civil and it is not right. 

So, I urge a different policy mindset on the local, state, and federal level for the SMI population. This is a moral moment when all stakeholders must unite to stop the deliberate discrimination that incentivizes the current human log jam in our jails, prisons, hospitals, and streets. This new waiver opportunity will bend both the cost and the harm curve in our state for many, and truly create a system of whole-person care.

Thank you,
Teresa Pasquini, mom
Co-founder, Right 2 Treatment/Mental Illness FACTS, Family and Consumer True Stories

NOTE: The IMD Exclusion is part of the 1965 Medicaid Act that prevents the use of Medicaid as a payment source for certain psychiatric inpatient facilities. In November 2018, The Centers for Medicare and Medicaid Services(CMS) announced the availability of a 1115 demonstration waiver that would allow 30-day stays in IMDs for SMI/SED (Serious Mental Illness/Serious Emotional Disturbance) Medicaid enrollees. The State Medicaid Director Letter #18-011 provides formal guidance on this opportunity, https://www.medicaid.gov/federal-policy-guidance/downloads/smd18011.pdf.

A GOLDEN LIGHT by RNP

FEBRUARY 6, 2019

Yesterday morning, the boy, who had gone away for more than a week, returned. He looked rough, and was crying. I employed my usual coping mechanism. I shut down, failed to acknowledge him, and left for work. I was about a block away when I began thinking about how to avoid coming home, and hoping he would leave again. I’m not proud to share these thoughts. It’s been damn hard. I’m in a constant state of fear when he’s around, and the past five years have conditioned me this way. 

Today, I’d been at work, for about an hour, when the flood of messages began. I wish I could tell you those messages were easy to read. They were not. It’s incredibly painful being this boy’s mom — for so many reasons. 

This afternoon, I dug deep inside myself. I stuffed the bitter, angry mama who’s been grieving the loss of the son, she once knew, way too long. No matter how awful things have been, or how hard they may get in the future, this child is still my child. This evening, I persuaded him to get in the car with me. My heart told me to drive east. He kept asking, “Where are you going?” I didn’t know and he began to panic. The uncertainty was too much for him. 

I turned left, and an impromptu shopping trip at a low-populated, outdoor shopping mall began. My son was surprised. I was too. It wasn’t planned. (It’s been more than a year since I’ve bought anything for him.) As we entered the Polo Ralph Lauren store, my son made a beeline to a clerk. They shook hands, and I realized he was a neighbor kid. There was another person there, too. A man. He began talking to my son like he knew him. I watched as they had a conversation. Soon, we had a bag with six polo shirts, four t-shirts, and a jacket. The man helped my son find all the best deals, and told me how to get an additional twenty-percent off.

At the register, the man told a story about giving a coat to someone at his church — a coat like the one my son was getting — and he began talking about C’s upcoming birthday. I had no idea who this man was, but it was clear he knew my son. My heart swelled. Turns out, my boy had been in the store several times looking at clothes, and talking about getting a job there. The man knew a side of my son that was full of light. After the clothing store, we headed to the Nike store to buy shoes. I only planned on buying one pair. We left with two. As we drove away from the mall, I told my son, “I love you, and I hope you’ll take good care of your new things.” 

That shopping trip was worth every penny. I really needed to see my son from a different perspective. Oh, how I hope and pray, someday, more people will see him as having a golden light — the golden light the man, in the Polo store, saw in my boy.

POSTSCRIPT: As of today, RNP’s son has a new title — Retail Associate, Ralph Lauren.

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Snowflakes.

Hope you have a good weekend everybody!

MY NAME IS LANCE by Lance Soberg

My name is Lance. I struggle with severe depression and anxiety. I have admitted myself to psych wards, spent time in a mental treatment facility, lived in recovery homes, and take medications. My psychiatrist, whom I visit monthly, helps me adjust my meds according to my symptoms. I visit a psychotherapist daily, which has now been reduced to bi-weekly.

In conjunction with all this professional help, and my support team of both friends and family, I am determinedly working my program (despite stigmas about mental illness) to become a healthier person mentally.

An important fact: My mental health issues didn't come about just before I started my journey in the world of hospitals and medications. Mental illness has been a life-long, deadly serious fight.

Lance