D.J. Jaffe

Jaffe picUse these links to go to specific areas of the profile:
Candidate speech
Experience with mental illness
Skills, knowledge and experience relative to the NAMI Strategic Plan:
Driver 1: Build a Movement
Driver 2: Leverage Technology
Driver 3: Drive Advocacy
Driver 4: Focus on Youth
Driver 5: Strengthen the Organization
Employment and other affiliations
Candidate statement in the Advocate
Letter of Nomination

Nominated by NAMI of Buffalo & Erie County (New York State)

Member, NAMI of Buffalo & Erie County (NY), NAMI Albany Relatives (NY)

Listen to D.J.'s speech here.

I love my sister-in-law, for whom I was guardian. She has schizophrenia. During her psychotic episodes, I spent nights in ERs because there were no beds for her, and days tracking down housing and treatment programs only to find they won’t serve the most seriously ill. I’ve taken antidepressants.

Please describe how your skills, knowledge and experience will contribute to the NAMI Board of Directors role in delivering on the strategic plan. Using no more than 300 words per driver, respond to each of the five drivers in the 2015-2019 NAMI Strategic Plan.

Driver 1: Build A Movement - NAMI will broaden public awareness and inclusion in every part of the alliance.

As a former senior marketing executive, and current op-ed writer, I know the best way to build a movement is to inspire people.

  1. Let the public see the horror. NAMI should broaden public awareness of the horror of untreated serious mental illness. If there is no horror, then why should anyone support more services? But we hide that. For example, NAMI urges the media to not use the word ‘suffer’ when describing mental illness and rarely shows psychotic people in publicly distributed materials. But trying to gain support for the seriously ill by only showing the highest functioning, is like trying to gain support for hungry children by only showing the well-fed. Letting the public see the horror of untreated serious mental illness would build awareness of the problem that needs fixing.
  2. Use media reports of violence to propose solutions. When there is headline grabbing violence, we historically use it to argue that people with mental illness “are no more violent than others” and “more likely to be victims.” But people with untreated serious mental illness are more violent than others and we should use these tragedies as opportunities to propose solutions, not hide behind platitudes. The best way to reduce stigma is to reduce violence by the minority because it tars the non-violent majority.
  3. Partner with law enforcement. An individual with mental illness is ten times more likely to be incarcerated than hospitalized, and more likely to be homeless, criminal, arrested, and/or suicidal. Mental health system neglect causes them to become a criminal justice responsibility. Criminal justice officials want to return care and treatment of these individuals back to the mental health system. They are natural partners, and influential, so we should build a coalition with them. I’ll make introductions to help NAMI do that.

Driver 2: Leverage Technology - NAMI will expand use of technology to build capacity and connection.

Many of the services NAMI provides can be performed more efficiently online. Because we were late to technology, there are now thousands of non-NAMI Johnny-come-lately Facebook support and advocacy groups (including ones I started: Mental Illness Policy Org and National Alliance on Serious Mental Illness) that provide education and opportunities for participation that NAMI should. These non-NAMI groups have embraced dial-in teleconferences, webinars, twitter-storms, podcasts, and live-streaming. I’ll help NAMI do that.

NAMI should run webinars and create online learning modules to teach practical skills (i.e., de-escalation and using Dr. Amador’s LEAP approach for the non-compliant); treatment and benefits issues (ex. clozapine, ECT, Medicaid, Medicare, SSDI, housing, early intervention); and advocacy (ex. ending the IMD Exclusion, implementing AOT, influencing the media).

NAMI should use social media to create networks of common interest in concert with local affiliates and state organizations. NAMI used to have active sibling, legal, and multicultural networks. They largely withered. NAMI should turbocharge those with social media and create others on housing, clubhouses, civil commitment laws and other interests. NAMI should live stream the convention.

We could also use technology to survey members. In 1990s NAMI distributed a paper survey to members and found that 11% had a family member who harmed someone during the past year. They created a report from the survey that generated media coverage on the importance of treatment in reducing violence. That’s easier now with online technology. We could even inform affiliates and state organizations about how their members surveyed so they could use the results for local advocacy.

If NAMI used tech this way, and connected each touchpoint to a donate button, and shared the proceeds with affiliates and states, both income and participation would increase.

Having spent years as a senior advertising executive, I’ll help NAMI leverage technology better.

Driver 3: Drive Advocacy - NAMI will lead advocacy efforts that drive increased access and quality.

We have to focus advocates on what’s most important, not least. That means we have to stop focusing on stigma and start focusing on changing laws and policies that cause our loved ones to suffer. Stigma is far behind cost, lack of services, lack of transportation, no doctors and anosognosia in preventing care for the seriously ill. Schizophrenia and bipolar are no-fault biologically based disorders. There is no stigma. We should not teach that there is. Stigma is the black hole of advocacy sucking up thousands of advocacy hours that would be better spent improving services.

We have to eliminate the Institute for Mental Disease (IMD) Exclusion which prevents Medicaid from being used for individuals between 18-64 who have serious mental illness and need long-term hospitalization. It is federally mandated discrimination against the seriously ill that is causing psychiatric hospitals to close and patients to get dumped. Olmstead suits are doing the same. As hospitals go down, incarceration goes up.

We should advocate for more group homes in addition to scatter-site supported housing and increase the use of AOT, the only program proven to reduce homelessness, arrest, incarceration, and hospitalization in the 70% range for the seriously ill adults who are eligible for it.

NAMI should try to end the diversion of mental health dollars to pop-psychology and pseudo-science. Mental Health First Aid (MHFA) teaches the public how to identify the asymptomatic. But identification is not the problem. Lack of services is. Moms beg and plead for treatment for loved ones they already know are seriously ill but can’t get it.

We all agree that there are massive rates of homelessness, arrest, incarceration, violence, suicide and hospitalization of people with serious mental illness. NAMI advocacy must focus on solving those problems first. If elected, that’s what I’ll do.

Driver 4: Focus on Youth - NAMI will develop and implement strategies that engage youth, young adults and their families, expanding our reach across the lifespan.

NAMI should focus on people with serious mental illness, not any specific age group. Yes, we should help children who have been diagnosed as having a serious emotional disturbance, but be wary of focusing on children as the core mission of NAMI. There are other organizations focused on children, but no organizations focused on adults with serious mental illness like my own family member. We need NAMI to do that. Almost 100% of children will age out of the children’s system and they need an organization to advocate for them.

Half of all mental illness begins below age 14, but half of those are mild. Anxiety, mild depression, and ADHD may remit without treatment and do not become schizophrenia or bipolar. Research shows serious mental illness most often begins in late teens and twenties. Schizophrenia, bipolar, OCD and other serious mental illnesses cannot be prevented, nor reasonably predicted so focusing exclusively on children generates many false positives.

The First Episode Psychosis (FEP) research and Recovery After Initial Schizophrenia Episode (RAISE) research suggests, as we have always known, that treating people who are mentally ill early and comprehensively improves outcomes. It suggests that a constellation of specific indicators if found in a single individual may indicate a propensity for psychosis. But no single indicator does that. The PR on prediction and prevention is far ahead of the research.

Finally, many of the problems in children--bad grades, poverty, having divorced parents, being uncomfortable with sexual identity, and losing a sibling are not mental illnesses. Worthy social service programs are masquerading as mental illness programs in order to get mental health funds. That leaves less money for the truly ill.

So NAMI should keep the focus on people who have serious mental illness but not prioritize children over adults.

Driver 5: Strengthen the Organization - NAMI will grow and develop financing, infrastructure and capacity that support a vibrant and bold organization.

To differentiate ourselves and inspire politically active younger people to join us, we can’t be a politically correct milquetoast “me-too” organization, focused on everything for everyone who has any “condition.” We can inspire people to join and donate – attract the best and the brightest – by being bold which means being honest:

  1. We have to admit that as a group, people with serious mental illness who are untreated are more violent than others. We can’t reduce the violence, if we don’t admit it exists.
  2. We have to increase hospital beds for those who need them. We can’t pretend everyone can be served in the community.
  3. We have to reform civil commitment laws and spread assisted outpatient treatment so those too sick to volunteer can get treatment before tragedy.
  4. We have to admit that serious mental illness can be devastating rather than normalizing it by only showing the high functioning.
  5. We have to partner with police, sheriffs, and others in criminal justice who are running a shadow mental health system for the seriously ill the mental health system avoids.
  6. We have to stop SAMHSA and CMHS from shunning people with serious mental illness and science, funding antipsychiatry and driving mental health block grants away from seriously ill adults.
  7. We have to counter the protection and advocacy programs, Disability Rights, and Bazelon when they defend the right of psychotic to remain psychotic.
  8. We have to stop states from consenting to close hospitals to comply with Olmstead suits.
  9. We have to focus on adults with serious mental illness since all children will age out.
  10. We have to admit that not everyone recovers.

If NAMI does this, it will become a vibrant organization with dedicated and generous members. I’ll help NAMI do that.

Job Title or Position: Volunteer Executive Director until 2025

Employer: Mental Illness Policy Org.

Previous NAMI Board of Directors Service: 1992-1995, 1995-1998

Candidate Statement as Published in the NAMI Advocate

I love my sister-in-law, for whom I was guardian. She has schizophrenia. During her psychotic episodes, I spent nights in ERs because there were no beds for her, and days tracking down housing and treatment programs only to find they won’t serve the most seriously ill. I’ve taken antidepressants.

I am running on the “Focus On Serious Mental Illness” ticket with Lauren Rettaglia, Mary Zdanowicz and Rob Laitman. Serious mental illness brought us to NAMI and if elected, we’ll return NAMI to a focus on it. Please vote for the whole ticket.

I founded Mental Illness Policy Org., a think-tank that provides legislators and media detailed policy analysis. In the 80’s and 90’s, I served multiple terms on the NYC, NYS and National boards and used my advertising skills to help my affiliate gain unprecedented media visibility and become NAMI’s second largest. I wrote NAMI’s policy on “Involuntary Commitment and Court Ordered Treatment (9.2);” the business plan that launched the Treatment Advocacy Center with Dr. Fuller Torrey and Mary Zdanowicz; and the just released, “Insane Consequences: How the Mental Health Industry Fails the Mentally Ill,” endorsed by Glenn Close, Pete Earley and others.

NAMI originally focused on helping the 4% (11 million) adults with serious mental “illness” including schizophrenia and bipolar. Affiliates still do, but NAMI National now represents anyone with any mental health “condition” (43 million). We want to fix that.

Homelessness, arrest, violence, incarceration, hospitalization and suicide are going up. By focusing on seriously mentally ill adults, we can bring them down. We want NAMI to focus on seriously ill adults by supporting more hospital beds, group homes, and clubhouses; expanding use of Assisted Outpatient Treatment; and humanizing commitment laws. We’ll oppose anti-psychiatry, Bazelon and Disability Rights lawyers and support the medical model. That will stop criminalization of our loved ones. Finally, we recognize that fighting stigma is not as important as fighting laws and policies that deny our family members care.

We love NAMI. Vote for us to help return it to its glory days when research, change and seriously ill adults were the top priority.

Read D.J. Jaffe's nomination letter [pdf]