SHAPLEIGH, Maine - TelAve -- The National Shattering Silence Coalition (NSSC)—a grassroots, nonpartisan group that advocates for the needs of people with serious brain disorders such as schizophrenia and bipolar disorder—urges the Biden Administration to appoint a person with a doctoral degree in medicine, osteopathic medicine, or psychology as the Assistant Secretary for Mental Health and Substance Use. This person must have clinical and research experience regarding mental health and substance use disorders and an understanding of biological, psychosocial, and pharmaceutical treatments of mental illness and substance use disorders.

We also urge them to prioritize care for the most severely mentally ill. As head of the Substance Abuse and Mental Health Services Administration (SAMHSA), this political appointee must be supportive of the scientific evidence that serious brain illnesses such as schizophrenia are disorders of the brain that require sophisticated treatment from well-trained medical professionals.

We strongly oppose appointing a person based on their "lived experience." Having a mental illness does not qualify one for a leadership position any more than having COVID-19 would qualify one to lead a White House COVID-19 Task Force. When someone is in congestive heart failure we send them to a cardiologist, not a person who has survived a heart attack. The brain is an organ of the body that can malfunction, and this malfunctioning organ needs to be examined in its complexity by well-trained medical professionals. The head of SAMHSA needs to understand this to ensure coveted federal funds are directed toward the most evidence-based practices that benefit individuals whose lives are at risk.

Homelessness and incarceration of individuals with mental illness is the humanitarian crisis of our times. SAMHSA is uniquely poised to correct errors that have led to a system that discards people in their darkest hours of need--often in the name of "civil rights"--because leaders in the past have dangerously misunderstood the nature of mental illness and how it impacts a person's ability to self-manage.

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We advocate for policies that align with the medical model of care, based on science. The alternative "recovery model" emphasizes a person-directed approach without acknowledging that individuals with the most severe brain illnesses often are so impaired that they are incapable of coordinating their own care. Many family caregivers at NSSC have watched loved ones "die with their rights on" because of this dangerous misunderstanding.

People with brain disorders have a right to medical treatment, especially when they are too ill to recognize they need medical care. When we ignore their right to treatment in the name of civil rights, too many of our most vulnerable citizens suffer needlessly and end up homeless, incarcerated, or dead. As family members, professionals in the trenches, and individuals who suffer from these brain diseases, we have experienced firsthand the tragedy of untreated serious mental illness.

"Our loved ones have been denied needed medical care, cycled through the revolving doors of hospitals without adequate treatment, been discriminated against, mistreated, criminalized, and left to die in our streets," said Jeanne Gore, Coordinator of NSSC. "All the while, we have been shut out of communications with health care providers in the name of patient privacy. Our goal is to make sure people with brain disorders receive the compassionate care and treatment they have been denied for far too long."

NSSC supports a medical-based system of a non-discriminatory, high-quality, comprehensive, coordinated continuum of care. NSSC supports the following priorities:

End the IMD Exclusion

We must eliminate the IMD Exclusion, a discriminatory law that prevents Medicaid payments for care provided in "institutions for mental disease" (IMDs), which are psychiatric hospitals or other residential treatment facilities with more than sixteen beds that mainly provide services to people with mental illnesses. This law is why we have psychiatric bed shortages, resulting in a lack of access to care for people with serious brain disorders. Many leading advocacy groups, including NAMI and the Treatment Advocacy Center, agree that the IMD Exclusion should be eliminated.

People with serious mental illness need access to a full continuum of treatment, including inpatient hospitalization. We offer this care continuum for all other illnesses, so it is discriminatory to exclude people who need psychiatric treatment.

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Create and implement a Federally Mandated Model of Assisted Outpatient Treatment (AOT)

Assisted Outpatient Treatment (AOT) is an evidence-based practice that has been shown to reduce hospitalization, criminal justice system involvement, homelessness, victimization, and violent acts associated with mental illness, including suicide and violence against others.

AOT is both compassionate and effective. It provides community-based mental health treatment under civil court commitment as a means of:

• motivating an adult with mental illness who struggles with voluntary treatment adherence to engage fully with their treatment plan,
• focusing the attention of treatment providers on the need to work diligently to keep the person engaged in effective treatment.

Reform HIPAA

We must reform the Health Insurance Portability and Accountability Act (HIPAA) to encourage greater involvement of family members and natural supports in the care of individuals with serious brain illnesses. Currently, many health care providers are unwilling to discuss treatment with family members due to concerns about violating HIPAA privacy laws, despite solid evidence that the involvement of long-term supporters in care planning dramatically improves outcomes. One of the roles SAMHSA must fulfill is to provide clarity about HIPAA requirements and proper training so that providers do not misuse HIPAA to avoid the critical work of family engagement.

Individuals with brain disorders who lack insight into their illness are unable to make medical decisions in their best interest. Without HIPAA reform, family members will remain excluded from participating in the care of a person with serious mental illness. In the U.S., we allow family members of people with all other brain disorders, such as Alzheimer's, to participate in care decisions. To treat people with mental illness differently is discriminatory.

Reform PAIMI

We must reform the Protection and Advocacy for Individuals with Mental Illness (PAIMI) program to return to its original mission, focused on abuse and neglect, instead of lobbying to prevent medically needed inpatient and outpatient treatment. SAMHSA must not allow Protection and Advocacy organizations to continue using critical federal resources to impede access to medically necessary treatment in the name of civil rights.

ABOUT THE NATIONAL SHATTERING SILENCE COALITION

NSSC is a nonpartisan alliance of family members, individuals suffering from serious brain disorders (SBD), professionals in the trenches, and people who care. We have united to ensure that brain illness and criminal justice systems count those with SBD, and their families, in all federal, state, and local policy reforms. We are voices for the 11.2 million adults and 7 million children living with and dying too young from serious brain illness. Learn more at www.nationalshatteringsilencecoalition.org.