As we enter the first few weeks of 2022, advocates at the National Shattering Silence Coalition have renewed hope for the coming year. With our newly formed nonprofit, we are attracting new members and gaining momentum to accomplish our goals. In the months ahead, our work will be guided by our vision to create a more compassionate and just world for people with serious brain disorders. We call this our North Star.
We imagine a better future for those who have been suffering, discriminated against and abandoned for far too long. We can bring this future closer, one step at a time, if we all come together and use our collective power to create change. We have identified eight pillars of change below to make our vision a reality. Imagine a better future for your loved one who suffers from a serious brain disorder, for yourself if you are a person who suffers, or for your patients if you are a professional in the trenches. IMAGINE THE POSSIBILITIES ... #JUSTICEFORSBD What if discrimination based on serious brain disorders were no longer socially acceptable or tolerated and the world was as outraged about the injustices faced by people with serious brain disorders as they are about racism, LGBTQ+ discrimination and xenophobia? The U.S. is outraged about discrimination against people of color, the LGBTQ+ population and other marginalized groups, and rightly so. The COVID-19 pandemic shed light on widespread racial inequities, and with the death of George Floyd, the country came together to support Black Americans. Conversely, when scientists discovered that people with severe brain disorders were disproportionately dying from COVID-19, our country did not have a similar reckoning. People with serious brain disorders are 16 times more likely to be killed during a police encounter, according to the Treatment Advocacy Center. They are disproportionately incarcerated, living in poverty, homeless, living with medical co-morbidities and have shorter lifespans. They suffer horrific abuses and neglect, and yet Americans have shown no widespread outrage—there have been no marches on Washington, no protests or national conversations about these injustices. It’s time for that to change. The National Shattering Silence Coalition is giving a voice to all those who have suffered injustices. It is time for us to shatter the silence and finally bring these inequities to light, so that our loved ones will suffer no more. IMAGINE THE POSSIBILITIES ... #RIGHTTOTREATMENT #SHATTERINGSILENCE What if people understood the true nature of serious brain disorders? The National Shattering Silence Coalition provides information to the public to correct the misperceptions about brain illness. We speak out so people can fully understand that illnesses currently labeled as serious mental illnesses in adults and serious emotional disturbances in children, such as schizophrenia, schizoaffective disorder, bipolar disorder, and major depressive disorder, are biologically based, no-fault brain disorders. They are not a failure to control one’s behavior, a character weakness or the result of a traumatic childhood. What if we created a world where it was universally recognized that disorders originating in the brain were not “behavioral” but medical disorders? Imagine if everyone understood that when the organ that allows a person to think, behave and reason is impaired, the ability to make informed, rational decisions is also impaired. We advocate for laws and policies reflecting the truth that as many as half of those with schizophrenia and 40 percent of those with bipolar disorder lack insight into their illnesses, known as anosognosia. They should not be expected to ask for help. Providing the right to medically necessary treatment is the only humane response. It would eliminate needless suffering, prevent incarceration, homelessness and death, and offer the best chance of recovery. IMAGINE THE POSSIBILITIES ... #HIPAAHANDCUFFS What if family members who know their loved ones best were welcomed as part of a person’s treatment team, just as we do for family members of those with dementia, brain injuries and other brain disorders? Family members have vital insight and information about their loved ones’ health history and must not be shut out of communication with medical professionals due to overly restrictive or misinterpreted HIPAA privacy laws. Participation of family members, especially when a person lacks insight due to their brain illness, is critically important to ensure the best care. Just as doctors share health information with family members of those with dementia, brain injuries, and stroke, we envision a world where doctors actively seek out input from family members of those with serious brain disorders and communicate openly with them. Doctors and families who desperately want to help their loved ones would collaborate to ensure the best possible outcome for the person with brain illness. IMAGINE THE POSSIBILITIES ... #LIFELONGCARE4SBD What if people with serious brain disorders received a full continuum of care at every stage of their illness? Serious brain disorders are chronic, life-long illnesses that require differing levels of treatment depending on the severity and stage of illness. These individuals need a full range of services—including long-term inpatient care, step-down units, intensive outpatient services, community programs, supportive and independent housing options and supportive services—instead of a revolving door of short-term inpatient stays with inadequate treatment and no follow up services in between. We must provide enough treatment beds and centers to serve all who need them, just as we do for every other type of illness. People with serious brain disorders need and deserve comprehensive wrap-around services in the community, including counseling, social supports, education, job training and opportunities, connection to resources, and assistance with legal issues (e.g., applying for SSI/SSDI, creating mental health advance directives, filing tax forms). Their family members/caregivers also need and deserve education, social and financial support, and assistance with legal issues such as applying for guardianship and setting up trust funds on behalf of their loved ones. IMAGINE THE POSSIBILITIES … #PARITYFORSBD What if the determination of whether to receive medical care were based on a doctor’s expertise rather than a judge or the law, or lack of bed availability? If we treated serious brain disorders like we do every other medical illness, doctors would decide the appropriate medical intervention instead of laws that are designed to thwart the right to treatment. Instead of waiting until a person has deteriorated to the point of danger, we would ensure medically necessary treatment. The inhumanity of withholding treatment can no longer be justified in the name of civil liberties. With the success of many Assisted Outpatient Treatment (AOT) programs and what we now know about early intervention, those with serious brain disorders would be freed as victims of their illness, no longer prisoners of their own minds. Psychosis, including delusions and hallucinations, would no longer be a right to protect–instead we would focus on the right to treatment that would restore one's sanity, dignity, free will, and the ability to exercise their liberties. We envision a country where a person with a chronic serious brain disorder would not be denied treatment because of an arbitrary limit on the number of treatment days or lifetime caps. They would be cared for as compassionately and humanely as a person with Alzheimer’s or Parkinson’s. IMAGINE THE POSSIBILITIES ... #FUNDINGEQUITY What if we spent as much on serious brain disorder research as we do on mental health or on other serious illnesses? Our society’s lack of caring has seeped into our government’s research priorities. We spend far less on research into serious brain disorders than we do for mental wellness, mindfulness, and stress reduction, or for other serious illnesses such as Alzheimer’s. For example, the National Institutes of Health, our leading government agency for public health, spent $519 million on serious mental illness research with a 14.2 million prevalence in the adult population compared to $3.5 billion on mental health research or $2.9 billion on Alzheimer’s with a 6 million prevalence. If you do the math, there is a glaring mismatch: $36.55 spent on adults with serious brain disorders compared to $478 on those with Alzheimer’s, which is 13 times or 1,327% more per person. If the U.S. invested more in research, people with serious brain disorders would have better treatment options than medications that come with terrible side effects such as obesity, permanent movement disorders and lethargy, to name just a few. Research may finally reveal the causes of these disorders, paving the way for new treatments and therapies that would reduce suffering and lead to a better quality of life. We would learn why people with schizophrenia and bipolar disorder die 25 years earlier than the average life span and, in time, eliminate this disparity. IMAGINE THE POSSIBILITIES ... #ABEDINSTEAD What if we no longer criminalized serious brain disorders and instead offered compassionate treatment? There are approximately 383,000 inmates with serious brain disorders in jails and prisons. Individuals with schizophrenia and bipolar disorder are 10 times more likely to be in a jail or prison than a hospital bed. These individuals need treatment, not handcuffs. Serious brain disorder should be treated as a public health issue, not a criminal issue that is addressed with punitive and restrictive environments that lack the appropriate resources, supportive housing and adequate treatment support. In a just world, we would provide treatment to those with serious brain disorders rather than sending them to jail to decompensate further. Compassionate care delivered through Assisted Outpatient Treatment programs when needed and appropriate would help end criminalization of serious brain disorders by connecting those in crisis to treatment and a continuum of care. These services are vital to helping individuals maintain stability and safety. Timely intervention would help avoid a criminal record, which becomes a significant barrier to many essential aspects of healthy living, including employment, income and housing. A collaborative program that involved interdisciplinary health care teams providing intensive treatment services designed to promote stability and achieve recovery in the community would replace incarceration and hospitalizations. Instead of the criminal justice system deciding the fate of those with serious brain disorders, a collaborative medical team would determine the appropriate medical care needed. Having a brain illness is not a crime – we must continue to work on decriminalization by offering comprehensive treatment as an alternative to jail. IMAGINE THE POSSIBILITIES... #TREATMENTBEFORETRAGEDY What if we provided treatment at the earliest symptom of disease instead of waiting until after a tragedy to intervene? Research has shown that allowing brain illnesses to go untreated–to grow progressively worse–causes irreparable damage to the brain and reduces the likelihood of recovery. Withholding treatment for a neurodegenerative disease is cruel and causes immense suffering to both the individual and their family. In addition, allowing an individual to deteriorate can lead to tragic consequences. While perpetrating violence is relatively uncommon among those with serious mental illness, it is more prevalent when untreated psychosis involves paranoia or command hallucinations. According to the Treatment Advocacy Center, roughly 3% of the population with serious brain disorders are estimated to account for approximately 50% of mass killings, 20% of law enforcement fatalities, 10% of all homicides and 29% of family homicides. The tragic and costly consequences of untreated serious brain disorders are preventable. The best outcomes occur with early identification and intervention focusing on a full continuum of care with comprehensive services. It is possible for those with serious brain disorders to overcome challenges and lead meaningful, productive lives. We cannot make this world a reality without the help of advocates who are willing to shatter the silence and make change. Please join us.
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