Demand for Action to Fulfill NAMI MA’s Mission to Support Massachusetts’ Most Vulnerable Citizens 

Families and Advocates for Mental Health in Massachusetts
MHAdvocatesMA@pm.me
Nov 16, 2024

NAMI Massachusetts
331 Montvale Avenue, 2nd Floor
Woburn, MA 01801

Dear NAMI Massachusetts Board of Directors,

Subject: Demand for Action to Fulfill NAMI’s Mission to Support Massachusetts’ Most Vulnerable Citizens with Serious Mental Illness

As family members, caregivers, and concerned residents of Massachusetts, we are reaching out with deep consternation regarding NAMI Massachusetts' lack of action in supporting the state’s most vulnerable individuals with serious mental illness (SMI), specifically those with a symptom of lack of insight.

Massachusetts remains one of only two states without an Assisted Outpatient Treatment (AOT) law—a critical pathway for individuals with severe mental illness and anosognosia, those too impaired to recognize their own need for treatment. This failure to act not only contradicts NAMI’s mission but also represents a potential deviation from key provisions within NAMI’s national bylaws.

1. Advocacy for Legislation:
According to NAMI’s national bylaws, NAMI is charged with the "promotion of new and remedial legislation" to support individuals affected by mental illness. However, despite the glaring need for AOT legislation in Massachusetts, NAMI Massachusetts has yet to publicly advocate for this or similar policies that would provide immediate, timely and life-saving support to individuals who cannot seek help independently. This gap in advocacy fails to align with NAMI’s stated commitment to advancingswift legislative solutions for mental health.
2. Protection of Rights:
NAMI’s bylaws also emphasize the "delineation and enforcement of rights of persons with serious mental illness and their families." Without proactive support and advocacy for AOT legislation, individuals with SMI in Massachusetts are left vulnerable to criminalization and death due to untreated mental illness. By not actively supporting this necessary intervention, NAMI Massachusetts risks neglecting the rights of those with severe mental illness, who deserve access to treatment rather than punishment or suicide. 
3. Promotion of Community Support Programs:
The national bylaws mandate NAMI to promote "community support programs, including appropriate living arrangements linked with supportive social, vocational rehabilitation, and employment programs." To date, there has been a lack of leadership and support from NAMI Massachusetts in advocating for or implementing such programs for individuals with SMI who cannot advocate for themselves. These individuals require compassionate, structured support that an AOT would promote, rather than being left to navigate their challenges in isolation or, worse, within the criminal justice system.
4. Non-Discrimination and Inclusion:
The bylaws further state that NAMI shall not discriminate on any grounds, including disability and lived experience. By failing to support policies for those with anosognosia—who are often too impaired to advocate for their own needs—NAMI Massachusetts may be inadvertently neglecting this principle of inclusion and equal treatment.
We are calling on NAMI Massachusetts to:

• Publicly support legislation, such as AOT, to ensure timely access to necessary, structured care for individuals who are too impaired to recognize their own urgent need for help.
• Collaborate with policymakers, families, and individuals with lived experience of anosognosia to implement compassionate, preventative solutions that protect individuals with SMI from criminalization and suicide.
• Realign advocacy efforts with the principles outlined in NAMI’s bylaws to promote community support and protect the rights of our most vulnerable citizens.
 

Families and caregivers across Massachusetts look to NAMI for leadership, advocacy, and hope. We urge you to take immediate steps to address this critical gap in support and fulfill NAMI’s commitment to the mental health community.

“I can share what happened to me and how I eventually did get into treatment. I was having all sorts of mental challenges including paranoia, sleeplessness and delusions. I put my family in what I call a little piece of hell. I tried to join the Army. That didn’t work out. I tried to go to NewYork from San Diego but that didn’t work out. I couldn’t hold down a job and soon was isolating and totally withdrawing from all interactions except with my mom and dad. Thank God for them. I really believe their love sustained me for so long. They held the hope for me. My mom spent so much time sacrificing so that their oldest son could lead a decent life. Man, I Miss them. Actually, I was compassionately forced to get help. Not too many people talk about this from the perspective that I do. But it was a wise move by my mom and dad to convince me to see a psychiatrist and eventually get on some meds. And later learn about recovery and what it takes to stay on the path of the recovery process…compassionate involuntary treatment seems counter to American liberty and civil rights but talk to any family with a loved one diagnosed with Sz and they’ll express the frustration in getting them into treatment! “ Jeff Simpson, peer with Schizophrenia https://www.linkedin.com/posts/jeff-simpson-91b8a169_the-families-of-individuals-struck-by-schizophrenia-activity-7263329121156440065-mC4x?utm_source=share&utm_medium=member_ios

“NAMI Massachusetts Mission

We seek to improve the quality of life for people living with mental health conditions, their families, and their caregivers. We work to ensure that all people impacted by a mental health condition receive the support they need when they need it. We use our voices as people and families with lived experience to challenge discrimination and advocate for a more equitable and just world.

NAMI Massachusetts Vision

NAMI Massachusetts envisions a society that humanizes the experience of mental health challenges, promotes the values of respect, agency, self-determination, non-coercion, and non-violence, and supports individuals and families wherever they are in their journey of healing and recovery.” https://namimass.org/nami-mass-overview/

The reason nonprofits have a board is to ensure they are following its mission. They are granted tax exempt status by IRS based on mission, bylaws and nonprofit status. Reading the mission statement above do you feel NAMI MA is following its mission statement? We do not. 
We also fault every single NAMI MA affiliate and blame them too.

We look forward to your response detailing how NAMI Massachusetts will act to protect and support our most vulnerable citizens immediately.

Sincerely,

Families and Advocates for Mental Health in Massachusetts

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