Notes from NAMI California Annual Conference May 30–June 1, 2019

Thursday May 30:

President’s Reception:  Dr. Tom Insel, Advisor to Governor Newsom on Mental Health – He became acutely aware of how broken the CA mental health system was after relocating to CA from Washington, DC in 2015:  “There really isn’t a CA mental health system, but rather 58 systems”(one for each county); “if the state suicide rate doubles, there’s no way to find out who to fire” – (essentially zero accountability); “what gets done is often based more on funding streams than on critical need”; siloed nature of mental health services prevents leveraging skills and services across providers and geographic locales;  “result is that those with most severe mental illness often don’t get the care they need”.  A recent survey revealed that the top health concern of Californians was access to mental health care.

Shortly after the election Insel was invited by governor-elect Newsom to meet and discuss MH in CA.  During meeting it became clear they had common perceptions and concerns about MH in CA. As S.F. Mayor, Governor discovered that homelessness was one greatest social issues facing big cities and  couldn’t be solved without fixing mental health.  He was calling for complete “redo” of the mental health system statewide and asked Insel to serve as a primary advisor.  Dr. Insel eschews the title “mental health tsar” –  said he would be more like a M.H. ‘sherpa’.  Insel will volunteer his time to this assignment, working with CA Health and Human Services Secretary Mark Ghaly and previously announced task force on homelessness to potentially re-invent CA mental health care; the governor has said: “everything’s on the table – soup to nuts”.

Dr. Insel said he would spend the first 2 months or so mostly listening to stakeholders including MH professionals, clients and families and the community at large, framing the conversation in the form of a single question:  “What would a ‘Camelot’ California mental health system look like?”  After meeting with NAMICA CEO Jessica Cruz, she responded with a letter describing NAMI’s vision. (NAMI members received an email copy).  He then plans to develop an initial plan/proposal for changes “within few months not a few years”.  He cautioned that it was likely that not every proposal could be immediately implemented but that developing a clear plan that could work will be first step; hinted that any implemented service would be measured to determine impact of results. 

Friday, May 31:

Welcome:  Jeffery Nagel, PhD, Behavioral Health Director, Orange County – Orange County first large county to fully adopt Assisted Outpatient Treatment (AOT); described how, despite his department initially opposing AOT, “NAMI got it done” and the program has been quite successful in engaging those in greatest need of care.  Two other recent NAMI impacts shaping M.H. in the county are:  1) getting Knott’s Berry Farm to shut down the “Asylum” ride which was extremely stigmatizing, and 2) participation/leadership in “Be Well Orange County”, a coalition of payors, health plans, providers and community stakeholders which envisions mental health care for all in the county irrespective of insurance.

Steve Pittman, President, NAMI Orange Co.; Immediate past president, NAMI (national) Board of Directors – Described NAMI OC’s advocacy efforts on behalf of AOT, Be Well OC, etc.; NAMI OC’s advocacy mantra is:  “Show Up, Speak Up, Stand Up” for better mental health services.

Keynote Speaker:  Keris Jan Myrick, MBA, MS; Chief of Peer Services, Los Angeles County Department of Mental Health – you don’t really understand mental illness because you are “well”; the journey is a “process” and no 2 people are alike although we’re all human; described her early experience when in 20’s she first experienced voices telling her that food was poison – she was so frightened she told no one. When diagnosed with sz, (schizophrenia) she viewed it as a thief which stole her capabilities, self-concept and goals of being a mom and having the life she wanted; was frustrated by her treatment team because their only focus was on controlling illness with meds; believes focus must be on limiting illness encouraging recovery efforts together. Was discouraged in early years when she wanted to get back on track and return to work because team said it would be “too stressful” – this in itself was disabling – life is stressful!  Dostoevsky:  “The mystery of existence is not in staying alive but in finding something to live for”. Dr. would hear her but not listen or engage in shared decision-making so she fired him.  In reading research she found that 40% of population lacks skills/knowledge to manage personal health care decisions – same % as people with sz. Relationships = 70% of recovery; her recovery components included:  symptom management, having engagement and active support, involvement in decision-making, “Navigate approach” (team based, including family and shared decision-making, CBT and lowest possible meds dose as needed).  With this support a person develops “resilience” which protects against effects of stress/fear – “learn how to fall and get up again”; “nothing is impossible because I’m possible”.  HIPAA comes between us and our families – no one is wrong but rather touching different parts of the elephant –ie our experiences are different. Key for families is to understand and LISTEN to person with the MH disorder.  Best way to address HIPAA:  “Who do you want to know you’re in the hospital?”  Her regret was that her Mom, who stood by her, didn’t live to see her “well”.  RE: forced treatment, “it’s human nature that force repels people; best way to avoid that is to catch people young focusing on prevention and early intervention.

NAMICA 40thAnniversary Celebration:  Jessica Cruz, CEO, NAMICA – briefly reviewed accomplishments of past 4 decades but focused mostly on FUTURE and Dr. Insel’s challenge of describing what CA “Camelot” M.H. System would look like: Mental Health=Physical Health; no need to “fail first” before getting most effective treatments; treatment is based not on payor or funding stream, but on need; crisis services needed only when all else fails; 911 not the point of entry into MH treatment; no one is afraid to ask for services they need; no one (family or person with lived experience) feels alone or isolated; family is part of the treatment team; peer support and care are freely available.

Workshops:  Crisis Communication:  Gaining Voluntary Compliance, Cooperation, and Rapport – Sgt. John Wilson, Mental Illness Response Manager, CHP – 3 Key elements:  1) Knowledge – understanding the task and what’s required to perform the mission; 2) Patience – capacity to accept delay, trouble and suffering without getting angry/upset; 3) System – changing classic CHP process (Ask, Tell then Make person to cooperate) – low  predictability of situation increases stress in officer and their cognition goes down;  when they don’t know who/what/when/where/why, their stress levels go up and leads to “emotional” vs. “rational” thinking (using amygdala vs. cerebral cortex) which makes them more likely to “screw up”.  The way to fix this is to increase predictability using techniques to slow things down, gain information by asking questions then listening, practicing “operational honesty” (ie.  someone called us saying that there was someone in the park screaming and dispatch made me respond– do you know what was going on?); other helpful techniques include using TACT (Tone, Atmosphere, Communication, Timing) – use professional polite, warm tone; establish non- threatening atmosphere (way you act/speak); use effective communication skills (manner of speech, body language, listening);  don’t rush but take time ie count to 4 after other person speaks and resist urge to fill silence with your speaking – if you shut up, people will tell you what you want to know – slow things down.  If all these approaches fail, use “READ technique:  “Request” and if that doesn’t work, “Explain” why person needs to comply with request, if that fails, then give “Alternatives” (here are your choices), then finally “Demand”.  ABC process de-escalates situation:  1) Assess – ask open ended questions (what, when, where, why) to get other person to talk; 2) Bond – show empathy (I understand you); sameness (me too); relatability (prime person to say yes); Control – yourself first, then scene, then the other person. 

Plenary Sessions:  NAMICA Legislative Update: Kirsten Barlow, MSW, Behavioral Health Policy Consultant – Bills we’re most in support of:  AB680 to establish CIT training for public safety dispatchers; SB11 to mandate MH parity requirements of Dept. of Managed Health Care ( won’t make it this session); SB10 to create statewide peer certification process (still alive); AB8 to require public schools to have a MH professional on staff for every 600 students by 2025; SB660 to require MH First Aid Training (for Law Enf.?); SB66 to permit federally qualified health clinics to treat patients for more than one condition on same day.  Bills about which NAMICA has concerns:  AB480 mandates funding additional older adult MH services via MHSA funding (could be another raid on MHSA); AB734 would provide special funding for pilots in just 5 counties for specific MHSA services (concern of fairness to other counties with equal need).  Highlights of governor’s May revise of FY 19/20 budget:  $3.6 M for peer run crisis line; $241.7 for in home supportive services; $50M for statewide health planning for pub M. H. practitioner training; $100M for 5 years funding renewal for MHSA Workforce Education and Training; $55M (prop 56 + Gen. Fund) for required trauma screening of MH clients; $100M (Gen. Fund) for whole person care pilot for high risk high utilizers of MH/LE svcs. for housing; $25M (Gen Fund for early psychosis intervention (like NAVIGATE); $35M for POST tng. In de-escalation sklls for LE; $98M (Gen Fund) for full service MediCal benefits for undocumented adults; $50M (Gen. Fund) for local govts. for homeless emergency aid.

Federal Legislative Update: Andrew Sperling, Director NAMI Legislative Policy and Advocacy:  Fight to repeal ACA is OVER!  Good news: Trump pressing drug companies on pricing but any benefits won’t help MH clients much as almost all psych meds are generic already; CA Atty. General has been champion of fight to save ACA; bill to strengthen MH care passed House on 5/16 but action doubtful in Senate; 42CFR Part 2 – integration of tax records – would align HIPAA discrepancies  between physical and mental health care to remove huge barrier to sharing of medical records by practitioners in those 2 venues; bill under consideration in House to require Medicare Part D to make all antipsychotics and antidepressants available to all Medicare pts. eliminating the current “fail first” situation.  FY20 MH budget should continue upward trend of last 5 yrs. (2019 NIMH budget was $1.8B up ~ $100M/yr in each of last 5 yrs.) unless Congress can’t reach 2 yr. budget agreement in which case President will cut all “discretionary”  expenses including most MH budgets 9.5% except VA which would be exempt. 

Psychiatry Mini-Medical School:  UCI Medical School Faculty – Asians access mental health care at one third rate of Caucasians for uncertain reasons needing more study; Short session on family member self-care – family caregiver self-assessment:  When was last time you did something you enjoyed? What? ; When was last time you felt frustrated/resentful at not engaging in some enjoyable activity because of another obligation?; What do you wish you could do more regularly?; What activity that you can’t do regularly but really want to do?  Idea is to plan some one time activity to do in next 2-4 weeks and one activity to participate in regularly.  Families need to replenish their reserves on regular basis, choose one day (per week or month) that you do only what you want to do for the whole day; remember that “the bad days will pass” when you’re feeling most down and challenged. 

Essentials of DBT: Bridgid Conn, PhD, Childrens Hosp. LA – Strong relationship with therapist is greatest predictor of success; pt. needs to know that therapist isn’t going to give up on them; pts. often feel that “if I showed you the person I really am, you’d hate me”; challenge is for pt. to believe that therapist is there for them but to keep “therapeutic distance”; goals are to help pt. achieve interpersonal effectiveness and emotional regulation; mindfulness is key approach; DBT can be effective down to around age 13; hard to get DBT on MediCal.

Saturday June 1:

Keynote Speaker:  Science of Childhood Adversity and Resilience – Andres F. Sciolla, MD, Assoc. Prof. of Clinical Psychiatry, UC Davis School of Medicine – In childhood psychiatry bio-psycho-social has become bio-bio-bio model; psychiatry is in disarray as DSM categories have become confusing and less useful, genetic research hasn’t yielded single magic bullet gene (108 genes implicated in sz); there are only 8 or 9 meds for 4-5 disorders in kids and most not well studied in kids. Recent research of early life trauma shows that early life stress can cause biological, psychological, sociological changes which are lifelong.  Things expected to get worse before better over next decade; the world breaks everyone but afterward, many are “strong in the broken places” (Hemingway) but sometimes social resources aren’t enough to counter effects of trauma; Kaiser weight loss study first linked trauma and obesity; then ACES, Adverse Childhood Experiences Study investigated 10 kinds of trauma, some related to household dysfunction; also found that youngsters and adults with childhood trauma history had higher prevalence of not only obesity but smoking coronary artery disease, COPD, depression, suicidality and anger issues;  ACES Pyramid:  Impairment leads to risky behavior which leads to early  medical and M. H diagnoses and early death; research has found epigenetic changes, dysregulation of stress response, low grade inflammation and hyper-responsive amygdala; modest increase in stress can be a positive and stress can be buffered (to a point) by supportive relationships; resilience is a process and requires relationships not rugged individualism and seeds of resilience are sown during childhood; even one person (relationship) can make a difference; trauma-informed care should be standard for all kids receiving mental health care.

Workshops:  Wellness Recovery Action Plan – Larry Reyes, Sr. Community Worker, LACO M. H. Dept. – WRAP not just for people doing well – peer support and role modeling can be important; 5 Foundations of Recovery:  1) HOPE; 2) Self Responsibility –must come from inside out, “change begins with me”; 3) Education – motivational interviewing approach to set goals, aim is consistency not perfection; 4) Self-advocacy – standing up for self and others (advice to families:  let your loved one have their struggles – just love them); 5. Organizing – become part of something bigger that will help larger community of those experiencing mental health issues.  Key Quotes:  I may not be the man I want to be, but I’m glad I’m not the man I was”; “Don’t ask what’s wrong, but rather, what’s strong”; “trust your gut and look for answers in unusual places”

Paula, Peer Support Specialist, LACO MH Dept. – WRAP is a class, a process and a group that helps one focus on recovery by helping you select and use those “tools” from WRAP “toolbox” which you as an individual believe can help move you forward on your recovery journey; WRAP helps with “self-discovery”, personal responsibility, identification and avoidance of relapse “triggers” checking the thoughts in your head and changing them, finding and keeping hope;  WRAP teaches how to avoid what you don’t like and encourage what you do like, how to avoid picking up negative vibes from others. WRAP helped her recognize how important SLEEP was to her recovery and how to get more.

Workshops:  Working Towards a Better Crisis Response:  Building a Co-Responder Model in a Medium Sized City – Paul T. McCormick Sergeant, Fremont Police Dept. Sophia Singh, Crisis Counselor, Washington Hospital Healthcare System – City of Fremont (pop. 225,000) geographically remote from county M.H. services and on the BART line from SF (delivering new homeless Mentally Ill daily, experienced dramatic increase in 5150’s from 2014-2016, 3/4ths of whom didn’t meet criteria so became “frequent flyers cycling among streets, jail and ER – made more difficult by fact that police and Hosp. MH staff didn’t know them (out of towners); started with CIT training for PD’s 190 sworn officers – 2/3 have now completed 40 hour CIT training; FPD convinced city council to fund specific position for MH Officer but couldn’t get county Mental Health Dept. to fund/supply mobile MH crisis worker for co-response, so they approached the local hospital overflowing with mentally ill ER pts. to provide a MH worker for Co-Response team, with goal of trying to avoid 5150 holds, convince contacts to get treatment instead – use various outreach techniques and continuous contact to build trust and encourage self-care. Team collects and records information in written report after each contact – detailed information collected over repeated contacts until team has quite complete info on most frequent contacts, which is available in car to co-response team and beat cops.  Key element is to get Case Mgt. to contact families which can be most helpful in a number of cases to help person get off streets and sometimes reunited w/family.  First year encouraging with fewer 5150’s and repeat contacts among highest utilizers of LE services.  Will continue to track and report progress.  Workshop was if limited relevance to Santa Barbara Co. since their county mental health department wasn’t directly involved.