2019 Update and Giving Tuesday Letter

December 3rd(ish), 2019

Dearest Family and Friends,

This year, as in the past, I find myself beginning my annual Giving Tuesday letter with an apology for not getting the letter out in time for the national day designated for charitable giving. In the past, I have been pretty tough on myself for letting the day catch me unprepared, but I know none of you really mind the slight delay.

Anyhow, I have a pretty good excuse; and it’s the same excuse I use every year. For most people, Thanksgiving marks the start of the holiday season, but for the Harris-Ornstein family, it marks the beginning of the countdown to the anniversary of our dear Matthew’s death. This January 3rd, we will face the fifth such anniversary and it never gets easier. However, it really helps us to use Giving Tuesday(ish) to take stock of all the good things we have been able to do to help others, in Matthew’s name, thanks to your generosity.

This year, we have been busier than ever, and our work continues to be focused on those areas where our “lived experience” is most relevant and where we believe we can have the most positive impact. I will begin by briefly reporting on our three major projects.

I. DEBATE CAMP

This past July/August, we celebrated the fifth Matthew Ornstein Summer Debate Institute (or MOSDI), our first project (which we began just six months after Matthew’s death.) Our faithful readers are probably already aware of how the Institute has prospered since that first summer. For the rest of you, allow me to summarize.

We started Matthew’s debate camp in July 2015, with about 30 students, rising 9 th graders and above, who were introduced to the art of policy debate (Matthew’s passion) over a five-day period. Those students came almost exclusively from Title I (free lunch) public and charter schools in DC and Prince Georges County, Maryland. At the time, only 3 of those schools had debate teams.

Now, through our partnership with the four-year-old Washington Urban Debate League (WUDL), www.urbandebatewashingtondc.org, a chapter of the National Association of Urban Debate Leagues (NAUDL), there are teams in 39 core schools and that number is growing. Tournaments are held monthly during the school year and each average about 225 participants.

Last year, thanks to the efforts of a fabulous staff and the impetus provided by the Institute, WUDL was the 7th largest urban debate league in the nation and it has already served several thousand students. Not only does WUDL provide a much needed extra-curricular activity, but the core of its program, and that of debate camp, teaches students to understand both sides of key issues facing the nation; builds research and critical thinking skills; instructs students in the arts of analyzing evidence, constructing arguments, communicating effectively and performing under pressure. WUDL and MOSDI students work hard to overcome resource disparities and build successful futures.

WUDL has been named “One of the Best” Local Non-Profits (DC) by the Catalog of Philanthropy; was named NAUDL’s “Outstanding Debate League” in 2017-2018 (the last year that award was given); and its debaters were Urban Debate Middle School National Champions in 2018-2019. Additionally, one of WUDL’s debaters, a MOSDI participant for several years, and winner in one of those years of the highly prized Matthew Harris Ornstein Award, was NAUDL’s 2019 National Urban Debater of the Year (out of a field of 10,000) and started at Harvard this Fall, recruited by the school’s debate coach.

The Matthew Ornstein Summer Debate Institute has been the springboard for much of this success, itself having grown from 30 to almost 200 students and from 5 days of camp to two weeks. (Depending on our resources, we hope to provide three weeks of training for our varsity debaters in 2020, to prepare them to compete in regional, not just local, tournaments during the 2020-2021 school year.) Additionally, we have gone from accepting rising 9 th graders and up to rising 6 th graders and up.

Our kids work hard, and with enthusiasm, 8 hours a day, 5 days each week of the program. It’s awe-inspiring to watch. They barely break for the two meals we provide daily and they master sophisticated subjects with an unquenchable thirst to learn and a visible love of learning. This year, for example, the nationally established debate topic is foreign arms sales, not exactly child’s play. But the students dove right in and, as a result of being in Washington, we were able to supplement their learning with classes taught by some of the country’s foremost subject matter experts.

But debate camp is not all work! This year, thanks to the incredible generosity of the Lerner Family and the Washington Nationals, we were able to take 230 campers, coaches and staff to a baseball game, the first live game for most of our students—and see the team that went on to win this year’s World Series no less!!!!

Finally, before we leave the topic of debate: PLEASE notify us if you are a former debater and are willing to judge at one of our tournaments during the school year and/or at the end of the Summer Institute. As we continue to grow, so too does our need for volunteers and mentors!

II. LEAP

Our second core program involves a partnership between the MHOMF and the Leap Foundation for Research to Practice, led by the brilliant psychologist Dr. Xavier Amador, author of “I’m Not Sick, I Don’t Need Help.” In that seminal book, published in fifteen languages and read around the world, Dr. Amador tackles the difficult, and often misunderstood, subject of anosognosia, or lack of insight, a symptom from which a large percentage of those with serious mental illnesses (SMI) (schizophrenia and also, bipolar disorder) suffer. In most cases, Anosognosia is the cause of so-called “refusals” to seek, or accept, treatment, and of ancillary conditions like homelessness.

Many of you know that Matthew suffered from anosognosia, believing that his circumstances were the result of somehow having displeased God rather than a medical condition. Like countless others, Matthew spent his time focused on spirituality and acts of contrition rather than seeking, or agreeing to, medical treatment, which he believed would only exacerbate the problem.

Based on years of experience trying to help his brother, who suffered from anosognosia as a core symptom of his schizophrenia, Dr. Amador developed a method for loved ones and others to communicate with, and build productive relationships with individuals who lack insight into the fact that they are ill. Dr. Amador calls his method, best described as a form of reflective listening, LEAP, an acronym for “Listen, Empathize, Agree and Partner.”

While the basics of Dr. Amador’s approach seem simple, LEAP is far more difficult to apply than one would imagine. For that reason, Dr. Amador has developed a training program to enable loved ones, first responders, medical professionals and others to understand and communicate better with those suffering from SMI and, in the process, often helping avoid the potentially tragic escalation of conflict. To get a sense of Dr. Amador’s technique and how he teaches it, check out his TED talk and other presentations, available at: https://lfrp.org/free-leap-vids .

For the past two years, we have joined with Dr. Amador and the LEAP Foundation to offer trainings, for only nominal fees, in cities around the country. This year, for example, we brought LEAP to Detroit, Bethesda, MD. and Cincinnati. In each case, the trainings filled up almost immediately, with 150-200 people registering for the workshops, many of whom traveled from other states to attend the full-day training. Moreover, a number of those (between 25-35 in each location) also registered, and stayed, for a second day, to begin the process of themselves becoming certified as trainers.

While there are rarely miracle cures for those with anosognosia, we hear story after story of how our LEAP trainings have helped family members and others re-establish relationships with loved ones, often with people from whom they had been estranged for years. The rapt attention participants pay in these long, intense and often dramatic sessions and the uniformly high praise the programs always receive from attendees make us wish that we had the resources to do many more in-person trainings each year. However, they are very expensive (between travel, meals, facilities and training fees they run about $50,000 each). One of the things we are considering for the future is developing an interactive online training tool, but nothing substitutes for face to face learning and the opportunity it provides for bonding among participants who often feel so alone when trying to help a loved one with no insight.

There is little we can do, by ourselves or overnight, to develop more effective drug therapies without horrible side; to change the laws regarding court ordered care; or to get the money for more community mental health centers and more hospital beds, all of which are badly needed. But we can offer LEAP trainings as an immediate tool to improve the lives of those living with mental illness and the people who love, care for and/or interact with, them.

III. DOCUMENTARY

The most exciting developments for our Foundation in 2019 relate to the documentary that we have been working on for the past two years with documentarians Gabe London (a high school friend of Matthew’s) and Charlie Sadoff. The film, entitled “Definition of Insanity,” is the story of Miami-Dade County Circuit Court Judge Stephen Leifman tireless efforts over the past two decades to decriminalize the treatment of those suffering from mental illnesses. We believe that Judge Leifman has done more than probably anyone else in the country to focus attention on the hundreds of thousands of men and women with mental illnesses who are currently warehoused in our country’s jails and prisons, generally for the most minor of offenses, without access to treatment, and often without insight into their illnesses. Ever since we first heard his story, we wanted to do whatever we could to amplify his revolutionary and empathetic model.

Twenty years ago, as a young, newly minted judge, Leifman found himself powerless get help for a man who appeared before him for the unlawful possession of a shopping cart—a man living on the streets of Miami and suffering from psychosis (and a graduate of Harvard Medical School and formerly Chief Resident in Psychiatry at Jackson Memorial Hospital.) Judge Leifman made a promise that he would never allow himself to be in that position again.

Our film tells the story of what Judge Leifman decided to do to fix a broken system and how he went about doing it.

The film focuses on the total eco-system that Judge Leifman has been able to integrate into a diversion program, complete with wrap- around services for everything from medical help and housing assistance to lessons in job skills and executive functioning. To hear Judge Leifman tell it, the secret sauce in his system is reliance on peer counselors, including some who themselves have been through the program.

Judge Leifman has built partnerships between and among those who do not usually or naturally work on the same team, including law enforcement officials (to date more than 6,700 of them have received mandatory CIT or Crisis Intervention Training and dramatically reduced the number of shootings and arrests of those with mental illnesses); other judges; prosecutors, whose natural inclination is to prosecute offenders, no matter what the circumstances; public defenders and private defense counsel, whose natural inclination is to set all their clients free, even if that results in homelessness and often even worse. With Judge Leifman’s guidance, all have come to accept the underlying premise of the program and every day they combine forces to make it work.

Our hope is that that by showcasing Judge Leifman’s vision, and the extraordinary success he has had, our film can serve as a template for cities, counties, and states facing the same challenges (and that is virtually every city, county and state in the country). But it will take money to ensure the widest possible distribution of the film. We’ve worked hard to secure several grants to help with that effort and, only recently, Matthew’s Foundation received almost $100,000, at a fundraiser hosted by Lynne and Andy Redleaf, a wonderful, incredibly philanthropic couple in Minneapolis. However, the need is great and there is still much work to be done.

Now here is all the good news! WETA, the PBS affiliate in Washington, has contracted to air the film, which hopefully will be distributed through PBS and aired nationally in the spring. Moreover, the Definition of Insanity was recently selected for the Miami Film Festival in mid-March, which will likely be when the documentary officially premieres! Make plans to join us!! With this first film festival acceptance under our belts, we now intend to apply to other festivals. And more good news: a first-rate composer has been retained to do the film’s musical score and Rob Reiner appears to have agreed to do the narration. We currently have a 58-minute version of the documentary for public television and a longer version (of about 75 minutes) for festivals and other public screenings.

We would be grateful for any support, not only financial, that you can provide towards this effort. For example, we need partners all over the country to help arrange screenings at secondary schools, religious institutions, universities, behavioral health facilities, legal and mental health conferences, medical school meetings and the like, after the national broadcast. If you have any ideas, please reach out to one of us and, for those of you who haven’t yet seen the trailer, here’s a link: www.mornstein.org/trailer .

IV. MISCELLANEOUS

In addition to the foregoing, I have been serving on a Model Code Working Group, organized by Judge Leifman and composed of an impressive collection of psychiatrists, jurists, law professors and me (in the lived experience category, I’m sorry to say), with marching orders to draft a model code or develop a list of best practices reflecting current knowledge of brain diseases and their symptoms for state legislatures to consider in updating their generally very antiquated statutes. For those of you familiar with the details of our journey with Matthew, you know how near and dear to my heart this issue is.

I have also been “vetting” with interested individuals and groups the idea of a post-residency fellowship to provide extra training to psychiatrists interested in working with those suffering from serious mental illnesses. The extra training would cover the latest in brain science research, including with respect to the causes and symptoms of SMI; up to the minute drug developments (and other potentially promising therapies and procedures); relevant laws regarding the rights of those suffering from serious mental illnesses; and the shameful history of the treatment of the seriously mentally ill in our country.

Such extra training, reflected in an added credential (and perhaps a higher rate of reimbursement from insurers) would not only attract more and better educated practitioners to the field, but would allow loved ones to find the right help, without wasting precious time searching (and often coming up empty).

Finally, I am thrilled to report that this fall, we were finally able to hire, on a part-time basis, an Executive Director for the Foundation. Dr. Jessica Berenson, like almost everyone else we work with, was a friend of Matthew’s. She was in our son Danny’s class at the Georgetown Day School and was mentored by Matthew when she was a freshman and he was a senior on the GDS Debate Team. After college, Jess went on to get her M.D. and has trained, then worked, as a physician in a variety of settings. She has also had some professional and personal experience with serious mental illness, which is already proving invaluable to her work. A copy of Jess’ bio is posted on the Foundation’s website.

We can’t believe our good fortune in finding someone to serve as the Foundation’s E.D. with expertise in ALL of the somewhat disparate areas relevant to MHOMF’s work. Jess has already taught us, though, that missions which at first blush might appear disjointed (debate and mental health, for example!) only serve to underscore that those suffering with serious mental illnesses are far more than just their diagnoses. Like Matthew, and like the rest of us, they are WHOLE PEOPLE and must always be acknowledged and respected as such.

Jess’ devotion to our cause is remarkable and her enthusiasm is contagious. Hopefully, one day, we will be able to bring Jess aboard full-time. That said, she is already putting in 40 hour work weeks. Truth be told, the only thing about Jess’ job that is currently part-time is her salary!!! PLEASE FEEL FREE TO REACH OUT TO DR. BERENSON FOR INFORMATION, QUESTIONS, SUGGESTIONS OR ANYTHING ELSE. She can be reached at [email protected] .

V. CONCLUSION

In conclusion (yeah!), I urge you to spend some time on our Foundation website, www.mornstein.org . In addition to photos and scores of touching tributes to Matthew from his friends, the website contains a wealth of information about our programs, and much more. In the New Year, we hope to post a monthly column on the website about various topics relevant to the Foundation’s work and containing references to recent articles, books, and films that we think you might find of interest.

The website is also where you will be able to find the dates and locations of debate tournaments during the academic year, of debate camp this coming summer, of future LEAP trainings and when/where our documentary will be shown. Also, check out our new Twitter ( @MattOrnsteinFnd ) and Facebook ( facebook.com/mornstein ) pages (thanks, Jess!) I urge you to attend, observe and volunteer to participate in any of our programs. I promise you will find them enlightening and inspiring.

Most of you who receive this letter will have already contributed to Matthew’s Foundation this year without any coaxing and for that, Norm, Danny, my sister Pam and I thank you from the bottom of our hearts. For the rest of you, and for those who are so impressed with the breath of our activities that you want to give once more in 2019, there is still time!!!!!! Donations can be made via Paypal on the Foundation’s website or by sending a check payable to MHOMF, to Andrew Rothenberg at Morgan Stanley Wealth Management, 7500 Old Georgetown Road, Bethesda, Maryland 20814. Special kudos to Andrew who handles all the Foundation’s finances and so much more without charge.

Tax receipts will go out in the first quarter of 2020…and what a year that promises to be. Among other things, it is the year in which Matthew would have turned 40, a fully-formed adult in the fullness of his life; a person we will never get to know or even meet. Thank you for helping keep Matthew’s memory alive. May it be a blessing for us all. Health, love, laughter…and good luck to each of you in the New Year.

With deep appreciation for your support,

Judy (Norm, Daniel and Pam)