Dear supporters, I am providing another letter that was sent to NAMI last night by an amazing advocate and family member from my home county of Contra Costa, CA. Doug Dunn is a tireless advocate who fought along my side to see that Laura's Law (California's version of AOT) would be adopted in our county. We were successful in winning it's adoption after Doug did a cost analysis to show the fiscal costs of continuing with the status quo. Doug provides NAMI with a "lived experience" perspective on the implementation of AOT in Contra Costa that demonstrates that we are still failing to engage in reality about the 4% who lack capacity to accept treatment voluntarily. And, while we wait for voluntary engagement, the fiscal and human costs continue to rise. "To: Mary Giliberti, JD Executive Director, NAMI Ron Honberg, JD Policy and Legislative Affairs Director, NAMI RE: NAMI Reply to Activists Letter Speaking for myself, I greatly appreciated getting acquainted with both of you at the NAMI National Convention in nearby San Francisco in July, 2015. As one who led efforts to bring Assisted Outpatient Treatment (AOT) to Contra Costa County, I clearly remember our discussions on this topic. At that time, Contra Costa was in the process of designing and implementing this program. Because of lack of timely topic notification, I was not invited to the July 9, Thursday afternoon main meeting which discussed San Francisco’s AOT approach, principles which are being used here in Contra Costa County. As a result, the citizen family voice of one who was intimately involved “on the ground” in advocacy, program design, implementation, vendor selection, and oversight was not heard. Except for Dr. Angelica Almeida, San Francisco AOT Director, the other participants could not and did not talk from a position of actual program knowledge. Along with Dr. Almeida, with whom I have a good working relationship, I could have also given a comprehensive PowerPoint presentation overview of an “in progress” AOT program. Sadly, this did not take place and the meeting, in my view and those from NAMI-Contra Costa that attended, was not nearly as informative as it could have been. Including “grass roots” advocacy presentations rather than just “outside expert opinion” at public meetings is something to think about for future national conventions. The AOT program in this county has had a “very bumpy start” since its implementation in early 2016. For example: • County referrals and investigations are taking way too long before referred persons are finally approved to the contractor for treatment program outreach. As a result, of 101 referrals so far (as of July 31, 2016—latest complete evaluation report), 64 persons could not be located because of the extremely lanky county investigation process. • In addition, there have been no call backs and no record of any follow-up to desperate referring families. • Also, because of the presiding Judge’s Protection and Advocacy background, there is extreme reluctance to use the AOT Court Order as a means of “judicial recovery therapy” for this most hard to reach and engage population. For example, out of 36 referrals, only 3 Voluntary Settlement Agreements have been issued. Most other implementing counties are experiencing 35-40% of referrals going to court with most agreeing to Voluntary Settlement Agreements rather than an involuntary Court Order. Once finally in the program, families and consumers are beginning to express gratitude for its great quality of life long-term recovery potential. County Supervisors are also very grateful for its growing cost avoidance savings. We are also diligently working to strengthen the court order process to even more actively engage the most treatment resistant (such as our loved one) among us. To correct your AOT statements in our reply, here in Contra Costa County, we are diligently working to insure that families as well as their referred loved ones are actively included as much as possible (within the 2014 new HIPAA clarifications) in their treatment plans. As much as possible, we want family wraparound services to be an integral part of this program. Also, here in this county as well as California, families are NOT concerned about either their relationship with or what may happen to their loved ones after AOT, but getting desperately needed help NOW!!! That is how badly broken the mental health system is in this state! Therefore, NAMI National really needs to be far more “forthright” in its support of AOT and similar programs! In our experience, NAMI National’s trepidation about AOT’s court order functions is absolutely unfounded. In your reply, a bolded paragraph talked about the tremendous long-term challenges of getting our loved ones to consistently engage in treatment. At a main meeting during the 2015 NAMI Convention, Drs. Brian Aldersheim and Nev Jones from Stanford University spoke. In particular, Dr. Jones, in great self-disclosing fashion, detailed her single schizophrenic break, the stigma and struggles that followed, and the chance that Stanford University gave her. As a consumer, she also discussed her extensive research on Anosognosia, in which approximately one half of persons with psychotic mental illness cannot realize they live with a severe mental illness. During her presentation, she stated that the results of 500 scientific studies since from the mid 1990’s up to now overwhelming demonstrate an unmistakable primary link between Anosognosia and the person’s refusal to consider or participate in treatment for their severe mental illness. She also stated that this issue was scientifically closed and beyond “score pointing debate” between advocates of AOT and those adamantly opposed to it. Coming from a well-educated and informed consumer, this absolutely settles the debate over ansognosia and the need for AOT. In another statement, you indicated an AOT judicial order is a last resort. This is not the case in California counties where at AOT judicial order, if necessary is the “first resort.” • In Nevada County, from 2008 through 2012, 37 persons were evaluated and referred to AOT, 22 went to court and resulted in a Voluntary Settlement Agreement, and 11 were court ordered into treatment. • In Orange County, from October 1, 2014 thru June 30, 2015, the first year of AOT, 120 persons were referred and evaluated, 46 cases went to court with 45 Voluntary Settlement Agreements and 1 person court ordered into treatment. These counties are experiencing tremendous cost avoidance savings and far superior long-term treatment and potential life recovery outcomes! In these counties, the AOT judicial order first approach is working!! By contrast, San Francisco allows up to 138 days of voluntary outreach and up to 3 missed psychiatric appointments in 90 days before a judicial petition is even remotely considered. In the first year, from November 1, 2015-October 20, 2016, there were 108 referrals, 7 court cases with 6 Voluntary Settlement Agreements, and 1 person court ordered into treatment. San Francisco’s AOT program is focused on the homeless, to the almost total exclusion of family referrals. As a result, families feel “frozen out” as their loved ones deteriorate into continual “revolving door” hospitalizations, jail, or suicide. As a result, San Francisco is not seeing the savings and near the superior treatment outcomes it has been expecting. Here in Contra Costa County, in the first 6 months, from February 1-July 301, 2016, there were 101 referrals, 36 investigations, 17 persons (including our loved one) accepted into the program with 3 court Voluntary Settlement Agreements. The 17 person’s hospitalization and crisis stabilization costs dropped from $1M in the year previous to AOT to $400,000 in AOT, a 60% decrease. That is the “bright side.” Unfortunately, there is also the “dark side.” Due to the very inefficient referral and investigation process which is endlessly ongoing in some cases, 64 of 101 persons, have been lost and are untraceable in the community! For example, Teresa Pasquini has been trying to help a person in west county for 12 months despite the fact that the Full Service Partnership, which can make a referral, refuses to do so. Our own loved one has experienced 3 hospitalizations in this program and is on the verge of a 4th while I have ardently pushed county behavioral health for a judicial petition and a crisis team evaluation, so far, with absolutely no response whatsoever! Clearly, in San Francisco and Contra Costa County, the AOT court order “as a last resort” approach is not working!!! In addition, AOT Court is not the “last resort” here in Contra Costa County and in California. The last civil commitment resorts are Temporary (30 days), Demonstrated Danger to Others (180 days-renewable), and Grave Disability (1 year-renewable) locked facility conservatorships. Now, unlike even court order AOT, a person’s freedom of movement and other civil liberties are greatly restricted!! Financially, 660 or 4.6% of Contra Costa’s 13,000 mentally ill cost $36M or 40% of its $90M in Federal Financial Participation (FFP-Medi-Cal/Medicare) annual reimbursement. Furthermore, just 181 or 1.5% cost 63% or $6.3M of $10.1M annual county psych ward costs. Finally, in a recent year, Dan and Teresa Pasquini’s loved one and Doug and Linda Dunn’s (our) loved spent 91 days each in the county hospital psychiatric ward (4C). The hospitalization costs alone were over $250,000 (see attached). Including ambulance and other crisis costs, the county cost ballooned to over $400,000. Those wasted crisis stabilization costs could easily treated 10 or more clients in an AOT program with far superior long term treatment and potential life recovery outcomes!!! If nothing else, it is time NAMI National realize the financial and quality of life costs of only tepidly supporting AOT and other related programs that really benefit the 4% severely and persistently mentally ill among us. In this vein, I do strongly support NAMI National’s effort for: • Significant HIPAA reforms to fully address the barriers that caregivers face in getting basic information about their loved ones. • Greatly expanding First Episode Psychosis (FEP) programs. • Repeal of the Institutions for Mental Diseases (IMD) exclusion. • Preserving Medicaid (and, by extension, Medi-Cal, California’s version of Medicaid). In addition, I strongly urge NAMI National to join with us grass roots activists to actively support: • Meaningful PAIMI reform to focus on abusive housing situations, not advocacy to avoid treatment! • A Need-for-Help (or Treatment) standard to replace or primarily supplement the scientifically outdated danger or grave disability commitment laws. In our view, the current dangerous and grave disability standard completely ignores the “quantum leap” in scientific understanding of anosognosia as the cardinal symptom of why many severely mentally ill persons refuse to consistently engage in treatment. The Need for Treatment Help standard absolutely needs to incorporate such mental health scientific advances. These changes would go a long way toward greatly helping all of the mentally ill and families among us, including the 4% that are most severely and persistently mentally ill. Thank you carefully reading and considering my reply. Sincerely, Douglas W. Dunn NAMI-Contra Costa 1st Vice President NAMI Family-to-Family Teacher"