Notes from Annual NAMI National Convention – San Francisco. July 6-9, 2015
NAMI convention was held in San Francisco July 6-9, 2015. Over 2000 were in attendance, a record for the convention.
The two primary themes were EARLY INTERVENTION AND RECOVERY. A lot of the research dollars have been poured into early intervention, because it is thought and some research has shown that there is a greater possibility of a single event of mental illness if the consumer is diagnosed and treated at the first occurrence of mental illness.
Recovery is defined by NAMI as an improvement of symptoms that make it possible to function at a higher quality on a daily basis. ONLY THE CONSUMER can define their recovery.
There is great focus now on the psychosocial therapy, where the family, friends, peers are the “the team” all participate with the doctors in the consumers’ recovery. This is now considered as effective in many cases as the medication only approach.
I attended many panels on signature programs and CIT. I got updates on changes that will be occurring shortly in the programs. I will write a summary of these.
I met with Liz Smith and she outlined very clearly what we need for re-affiliation. She emphasized that this will be a one time occurrence, and that it is meant to “get everyone on the same page nationally”.
I also met with Bob Carroll who felt very strongly that Kumi and all the affiliates be trained in NAMI profile training. He is willing to accommodate our time difference to do that.
I sent Kumi the profile of the candidates who won election to the national board. Hawaii was one of only three states that had all of their eligible voters participate in the elections. We were recognized at the business meeting. 93% of the voters attending did vote, and that was a record!
The major buzz at the Change the Frame general session was the willingness and capacity of NAMI to partner with others in the future to carry our message. Building a movement was the theme, because we realize that NOW IS THE TIME. If NAMI is going to be a leader, we have to change our mind sets and the ways in which in which we partner. NAMI by it’s sheer numbers needs to take the lead in mental illness education and recovery. A new partnership with cosmetics company “PHILOSOPY” was announced. They will do fund matching. Several other partnerships have been formed as well.
A new smartphone-based platform is being developed to improve mental health care for people living with mental illness and their providers. There is a movement in general, to teleconference with nurse practitioners and doctors, and it is thought that this will very much be the standard of care in the future. There are defined best practices in human-centered design, engagement and retention and how to integrate evidence-based mobile technologies into modern care delivery.
Mary Gilberti talked in the opening session on Embracing the Future-It’s time to talk. Her theme “if not now, when”? “If not here, where”?
The workshops were too many to talk about here. I actually attended a family-2-family support group in real time. I am happy to announce that Kauai is doing the support group correctly!
Research updates-rTMS has been shown to be effective for depression but it is not yet known if it helps for bi-polar. DBT has been shown to be effective for borderline personality disorder, and will soon be delivered online for free! This will be so important for rural communities. The best treatment for bi-polar depression continues to be a mood stabilizer with an antidepressant. There are no new mentionable drugs in the pipeline. In fact, drug companies are backing away from the neurosciences. Side effects of medications and non-compliance are the main reasons. First generation antipsychotics still remain the first line treatment for schizophrenia. The new generation of antipsychotics don’t do anything for uptake of dopamine and cause huge weight gain. New research shows that this drug class weight gain is not because of carbohydrate metabolism as previously thought, but because the part of the brain that controls “fullness” response when eating, does not work. Depacote remains the best medication for rapid cycling bi-polar. Lamectol has become a popular alternative. ECT remains a last choice, due to cognition issues following therapy.
There is a new suggestion based on research: DO NOT WORK PM SHIFT; Do not take Red Eye Flights if you have a major mood disorder. It disrupts circadian rhythm.
STEP-Ed is a newly recognized social rhythm therapy: it’s important to to modulate your body rhythm. Go to bed when it’s dark, wake up with the daylight, EVERY DAY!
A consumer needs a role that has meaning to society and themselves-be it work, or volunteering. It is paramount to serve others and interact with peer groups if you are a consumer.
The research plenary focused on community effort to raise clinical trial duration of untested prescription drug practices. Cardio metabolic risk is still the biggest problem in side effects and most consumers are not receiving adequate medical care. The recommendation is to start slow with the dose and frequency.
Sophia Vinogradov presented interesting research on reprogramming the “brain plasticity” with special computer software. Because we now know we get new brain cells, it is possible to reprogram the brain. However, computer games are actually dangerous to the consumer, as they are too repetitive and have not been know to show new cell generation programmability.
In summary, state wide crisis intervention was said to be of major, significant necessity for the welfare of all states. NAMI is taking a look at how to adapt the training for all states.
NAMI National Convention 2016 will be in Denver, Colorado, July 6-9! My wish is that we get funding to allow Kumi to attend the convention next year. I believe it would be a valuable experience for her in being our Executive Director….
Notes from Annual NAMI National Convention – Washington, DC. September 3-6, 2014
Wednesday, September 3
Special Research Presentations on Advancing Recovery
Steve Daviss, M.D. U of Md.; “M3 Tool” – Whatsmym3.com is only validated, evidence based, digital M.H. screen; a 27 question online survey which quantifies one’s m. h. condition; results can prompt suggestion (prescription) for supportive svcs.; used for depression, Bipolar, etc. but not schizophrenia (because of possible interference of the thought disorder with ability of person to answer survey questions objectively); can decrease misdiagnosis, mistreatment, hospitalizations;
Richard Shelton, M.D. U of Alabama; “Depression, Inflammation and Obesity” – each successive bout of depr. Leaves pt. less recovered; many depressed people have elevated levels of inflammation; 1/3 of people taking interferon get depressed and idiopathic inflammation interferes with depression treatment; obesity is driver of inflammation and vice versa; inflammation driven by “visceral” fat (fat within abdominal cavity as opposed to external fat); current obesity epidemic is largely the result of low fat diet movement of 70’s when food mfgrs. began to eliminate or reduce saturated fat from packaged foods replacing it with larger amounts of carbohydrate/sugar which led to increased obesity and diabetes; take home message is to limit intake of prepared, packaged foods; best ways to fight obesity and inflammation is to limit intake of prepared foods and eat more “intact” foods (whole grains etc) which are lower on glycemic index. Deplin may be useful to help reduce obesity/inflammation
Q&A: didn’t look at atypical antipsychotics and impact on weight but ziprazadone seems better than others in that regard; M3 could be used by crisis team, police etc; abuse and trauma are also associated with visceral fat and obesity thus diet is often key treatment for PTSD; USDA “diet pyramid” should be ignored – no more than 30-35% of caloric intake should be from carbs; Mediterranean diet (sans pasta) recommended; first approach in fibromyalgia: diet (to reduce inflammation) plus SSRI.
Chris Gordon, M.D. Advocates Inc. Boston; “Open Dialogue Therapy – A Recovery Oriented Practice” – when people are treated badly in first encounter with M. H. system, it stays with them forever; what it is: team based treatment for inpt. outpt. by crisis team, psychs, nurses; makes commitment that “person at center of concern” calls shots; uses same team inpt and outpt.; light hand on rx pad. Results – in 1st episode psychosis, 80% are working or in school and most are not on neuroleptics chronically; uses “crisis” model not “disease” model using open dialogue to help person regain grip on life; many are able to get back to work and relationships; voice of person at center of concern is listened to and respected (even if psychotic); every decision about treatment is made in front of person (and family if possible); all decisions include person’s social network, offer immediate, flexible, mobile help; uncertainty tolerated and REAL conversation is encouraged; treatment approach is bio-social-pycho-spiritual; schizophrenia is neurotoxic and neuroleptics are neuroprotective but chronic use can “freeze” situation and inadvertently block natural resolution; persons treated with “respectful curiosity”; open dialogue can be overdone too: it’s not for everyone, not anti-medication, not anti-hospitalization; Mary Olsen, PhD is premier trainer of technique to M.H. professionals; only 15 families served to date but 9 persons are working or in school and hospitalization rate reduced by 70%; main reason persons go off meds is distrust of treatment team; best outcomes in chronic illness always come from self-determination; recovering peer with PhD in “street smarts” often very helpful in OD. Contact: [email protected]
Paul Summargrad, M.D. President, Am. Psychiatric Assn. “Integrating Body/Mind/ Heart/Soul” – discussed mostly problems with payment streams in mental health, problem of co-morbidity of physical and mental disorders but said nothing about the topic of the talk when I left 5 minutes before the end.
Ray Gonzalez, ACSW, Center for Cognition and Recovery, Cleveland; “Cognitive Enhancement Therapy” – Provided an update of CET reviewing much of what he covered last year; now several additional CET centers around US and several more in development.
Thursday, September 4
Opening Legislative Plenary
Patrick Kennedy, former U.S. Rep. from Rhode Island – compared current M.H. system reform efforts to Civil Rights Act of 1963 in that people told them then that change will come if they just wait 10-15 yrs. – we don’t have 10-15 yrs.; all we seek is to treat diseases of brain as we do any other organ; current M. H. treatment compared to waiting until stage 4 to treat cancer; as with diabetes, early treatment of M. Hl disorders prevents complications and chronic severity; aot/guardianship saved his mother’s life (dementia); today we must win the new battle for deinstitutionalization – from jails/prisons, not hospitals.
Creigh Deeds, State Senator, Virginia – told heart-wrenching story of brilliant son’s suicide last year in his early 20s as result of the family being unable to get the help he desperately needed from M. H. system.
Demi Lovato, Recording Artist – discussed her personal story of illness and recovery from bipolar illness; reminded audience that suicide is #2 cause of death in young adults and that treatment works.
Workshops: Group A
Mike Runningwolf, Recovery Ed. Specialist, R.O.C/Recovery Innovations, Tucson, “Facing Up to Health” – this is a 7 week course which meets on Mon. and Fri. for classroom instruction and Wed. for fitness activity; covers common health related issues in people with M. H. disorders like smoking, weight gain, diabetes, hypertension etc; uses peer approach and self-determination techniques which don’t “beat attendees over the head but get them to think about health implications of their lifestyle choices; over 7 wks. attendees draft personal wellness vision stmt., tame wild animals (address problems that sidetrack or hijack efforts), learn how to use positive energy, prepare to meet their primary care doctor, complete health screening, develop ways to deal with stress, get good at reading food labels, plan a healthy diet, gain personal expertise in nutrition, learn benefits of physical activity and rest, explore building of spiritual muscles, write “whole health” goals statement, develop “team” action plan, prepare to facilitate a class, and celebrate graduation; people living w/m.i. die younger because of CVD/smoking, suicide, obesity/diabetes and due to secondary factors of sedentary lifestyle, lack of access to preventative and therapeutic health care and labeling by primary care docs of a person’s health concerns as a symptom of mental illness; participants get knowledge/skills for healthy lifestyle, become healthier, make friends/give and get peer support, and a potentially a career as facilitator. Facilitator tng. Is 40 hours in one week after which participant gets certificate of completion, syllabus to teach class
Thursday Night at the Movies
“Art and Craft” – Tells the story of a 59 year old man who for several years after the traumatic experience of the death of his mother with whom he’s been very close, used his brilliant artistic talent to create fake works of famous artists of many styles and genres then pose as a wealth philanthropist wishing to donate them to museums across the country. He fooled the experts for several years until one curator from an Oklahoma museum “outed” him. When FBI investigated, they found no crime because he didn’t benefit financially. It became evident over the viewing of the film and subsequent live Q and A session with the artist, who has lived with paranoid schizophrenia for 40 years, that this was his attempt at recovery and socialization. While he called himself a “hack” not an artist, most art critics believe he has remarkable talent especially to work in so many different media and genres with such skill – a truly remarkable story and individual. Mark Landis is a unique character which reminds us that recovery has many faces. Film debuts in mid Sept. in LA and other cities.
Friday, September 5
Special Topic Sessions
Earning a Living: Work, Mental Illness and Recovery – Cohen and Drake, Dartmouth; Discussed extensively researched (4 studies over 10 yrs.) technique called IPS or Individual Placement and Support; showed that in long term, M.H. costs go down, work outcomes improve; grew out of J&J/Dartmouth M.H. voc. rehab collaborative; in Europe, IPS is the standard employment intervention, is paid for by most governments and produce outcome of 40% employment of clients; has huge evidence base: 22 randomized trials; sparsely available in U.S.; costly initially but saves $ in long run; programs like this have demonstrated they foster recovery by increasing sense of self-worth and increase social relationships.
Getting Off the Emotional Rollercoaster (Ed. Program for Families of People Living with Borderline P.D.) Edith Mannion, LMFT, MHA of S.E. Pa. – this 10 week, once weekly class provides tools families need to cope with specific impacts of BPD on family; NAMI participants found it to be good follow-up to F2F; one of most common results of conflict between persons with BPD and their families is for affected persons to go into “fight, flight or freeze” mode; course explores how to de-escalate; BPD folks have exquisite sensitivity (to criticism) caused by intense fear of rejection; good book: “Loving Someone with BPD” by Shannon Manning; course teaches emotional regulation skills for families – combination of mindfulness, eastern relaxation skills, and other cognitive therapy skills; also teaches how to emotionally validate ill relative via empathy (acknowledge behavior but not approving of it); whenever BPD person’s emotions dysregulated, family take emotional rollercoaster ride with them; foundation of self-care for family members includes adjusting expectations balanced with limit setting and developing crisis mgt. skills (dealing with self-injury, suicide, violence; story of illness/recovery from BPD: “Boom Boom Retreat” by Tayla Lewis; course facilitated by therapist/family member, family member and person recovering from BPD; uses format of lecture, discussion, role play and recovery speaker; MHA SE Pa. willing to train facilitators nationwide but need funding to do – approaching NAMI National.
Recovery from Both Sides of the Couch
Keris Myrick, former President NAMI, SAMHSA, recovering consumer – Why do police insist on handcuffing everyone? Why use 5 point restraints in ambulance? for many clients, first encounter with mental health “system” is traumatic and may even involve law enforcement; psychiatric sessions should include talk about work, relationships, hopes and dreams, not just how meds are working
Ken Duckworth, M.D. Harvard, NAMI Medical Dir. – challenge for psychiatrists is to change focus to recovery from stabilization; whole environment of care should be recovery oriented, with entire treatment and support team treating people with respect – relate to the “whole” person; grow a relationship on patient’s level – meet them where they are and go with what they bring to you; recovery is functionality and successful living – loving accepting relationships; when discussing pharmacotherapy, TALK about the meds, any problems, plans to reduce meds, risk vs. benefit and bring in families as sources of feedback; Ken’s mantra: I’m your co-investigator on your journey; doctors also need self-care
Research Updates: Group 2
Early Intervention: The RAISE Early Treatment Program – John Kane, M.D., Hofstra North Shore –LIJ Sch. of Medicine – Dr. Kane is lead investigator of multi-center NIMH funded study to determine benefits of early aggressive treatment of first episode psychosis; 34 centers in 21 states with more than 400 subjects treated to compare early treatment with usual care; some children as young as age 6 who later develop schizophrenia (sz) show dysfunction in certain tests – this early “at risk” state may be followed by other changes in function but often not enough to justify childhood diagnosis (dx); dx occurs mostly occurs later, in young adulthood when symptoms become florid; RAISE sought to effectively treat first episode untreated psychosis of <1 yr. duration; early tx is important because it’s been demonstrated that response to tx is poorer in those with longer term untreated symptoms; goal of RAISE to find effective way to reduce untreated sz using current treatments and payment streams; recruited subjects with e-surveys of h.s. and college students; also developing social media techniques/points of contact; initial tx with low dose atypical antipsychotics had high response rate but relapse also frequent due to overwhelming drive by subjects to stop tx. – 82% relapse by year 5 and relapse fuels illness progression (less complete recovery, less response) with consequences including school dropout, loss of friends, lovers ie “life’s opportunities eroded”; by end of 5 yrs. only 13% classified as “recovered” by rigid UCLA criteria (symptom relief, normal role function [work/school], ADL’s and social interaction outside family); one finding: depot injections of atypical antipsychotics are grossly underused in U.S. and can be helpful in maintaining tx.; symptom relief in first 1-2 yrs. predicts longer term outcome; with each relapse, subsequent response isn’t as good as previously; final results of study to be published in Dec. 2014.
Research Updates: Group 2
Schizophrenia, Ken Duckworth, M.D. Harvard – Reviewed “greatest hits” of past year: Broad Foundation made huge bet on genetics in M.I. ($650M) with Dr. Steve Hyman and others now having documented at least 108 genes associated w/sz which will lead to better understanding of root cause but only in 10+ yrs.; Cognitive Enhancement Therapy (CET) now rapidly expanding has been shown to “muscle up” the brain which is important because meds don’t do much for cognition or neg. symptoms; pending publication of RAISE study may have implications for early tx. of sz.; recent studies of Chantix + buproprione demonstrate quite good quit rates which is important because smoking is associated with ½ of premature sz. deaths; every person who fails on 2 meds for sz. deserves trial on clozapine – “chemotherapy for sz”!; on tech front, NAMI got grant to study tech devices in self-mgt. of sz.; new study of F2F demonstrates improvements families experience hold up for at least 7 months after course; Cognitive Behavioral Therapy (CBT) looks good and useful in sz.; use of peers and recovery model/shared decision making are on the rise but psychiatrists and social workers need to be trained and to accept more collaborative approach; Ken also introduced new NAMI volunteer “Associate Medical Director”, Jackie Feldman, M.D.
Special Presentation: Patricia Deegan, PhD, Creator of “Common Ground”: Shared Decision Making
Pat discussed in detail her illness and recovery stories beginning with first symptoms and involuntary hospitalization at 17 when she was given high dose neuroleptics and told to avoid stress and “retire from life” and her subsequent isolation, somnolence and disturbed thinking despite “chemical restaints” which “maintained and stabilized” her but did not put her in “recovery” – felt hopelessly disabled by her treatment, a condition she calls: “Handicaptivity”; at this stage, there was no shared understanding of either her situation (as she saw it) or her goals, by anyone on treatment team; help can only be co-created by clinician and patient; clients spend 5,000 hours/yr outside M. H. clinic so “self-care is primary care”; M. H. professionals must be taught to partner with client to achieve outcomes client thinks are important; she uses concept of “personal medicine” – things she’s learned which make her feel better and better about self: peer counselling/role modeling, exercise, building relationships, learning; recovery came slowly for her because treatment team “gave up” on her after 2nd hospitalization; she couldn’t tell them they were wrong about her for fear of being labeled delusional, so she just kept telling herself: “you’re wrong about me”; every day her grandma asked her to go to market and when Pat said no, she accepted answer without further comment but asked again next day and every day until Pat said: “yes” – that’s the way assertive engagement works; after she earned her PhD in psychology, Pat founded Common Ground to encourage partnering of clinician and client and created tool to help client tell clinician what’s important to them and what they are experiencing in 15 minute appt. which was otherwise hard to do; the tool starts with question: “how are you doing with your personal medicine and is treatment getting you where you want to go?; tool used at 58 sites in 5 states; Pat has also developed complete and accessible online library on recovery skills and Common Ground;
Q&A: How do you approach someone with lack of insight? Find out what their hopes and dreams are, then work from there (also she contends clinician also has anosognosia about what’s important to client!); what is your view of the role of Assisted Outpatient Treatment? When AOT is used, it is a treatment failure – we have to stop spending money on services that don’t work and focus on what works for individual.
Saturday
Research Plenary
Thomas Insel, M.D., Director, National Institute of Mental Health, Bethesda, NIMH Update – 4 Inconvenient Truths about Mental Illness:
#1) we’ve failed to “bend the curve” to reduce morbidity/mortality of mental illnesses over past couple decades while other illnesses have seen dramatic reductions (CVD: -65%, stroke: -30%,AIDS now “chronic disease” not fatal) but suicide rate and illness burden of MI are flat; key reasons are that MH disability begins so early in life, dx. Is limited to observation of symptoms, etiology is unknown, treatment is trial & error, lack of accountability of MH system, fragmentation of care, and criminalization of MI.
#2) more people get treatment today but outcomes are no better – we must improve both quantity and quality of care which might come from both genomic revolution and neuroscience revolution; genomics won’t likely lead to more effective treatment in coming decade but should lead to better understanding of illnesses – problem is >100 genes identified to date so likely no single silver bullet for a particular MI; many genes seem to be expressed at neuron synapse; genetics not the same as heritability; in area of neuroscience, we know less about brain than any other organ and need to develop a “parts list”; Human Connectome Project helping us understand structure/function of brain and circuitry – esp. in depression, PTSD, OCD.
#3) Despite progress we still don’t know enough to ensure prevention, recovery, or cure of MI – in diagnostic area we need to go from “behavioral disorder” orientation to “brain disorder” one and from viewing MI as “chemical imbalance” to “circuit dysfunction” – future treatments to focus on “circuit tuning”; today we diagnose by symptoms using criteria determined by consensus (DSM) which may be reliable but not necessarily valid, then follow with treatment focused on these symptoms, not on actual source of illness in a care system where access is difficult and adherence is poor; there is little treatment innovation or R&D on new treatments partly due to how little we know about etiology of disorders; even psychotherapy is poorly researched (we don’t know ideal “dose” or duration because it hasn’t been studied) and it isn’t adequately paid for by pub. or priv. insurance; few bright spots: ketamine for depression – works in 6 hours vs. weeks for conventional tx., family focused tx. for anorexia, deep brain stimulation to correct circuit dynamics; new treatments must be “person centered”, pre-emptive, and network solutions (focused on several aspects); main thrust will be on earlier identification and intervention – sz has 4 stages: stage 1 -age 0-11 = “risk”, stage 2 – age 12-18 = “prodromal”, stage 3 – age 19-24 = “1st psychosis, stage 4 – > age 24 = “chronic”; good evidence that early intervention in stage 1, 2, or 3 could produce better outcomes or even perhaps prevent “chronic” phase; Stage 3 intervention: NIMH funded RAISE study (summarized earlier) will likely demonstrate that current treatments applied aggressively at time of 1st psychotic episode can lead to better outcomes; RAISE treatment approach to be required by all states by 9/30/14 to obtain M.H. block grants; Stage 2 intervention: figuring out who’s at risk – NIMH funded NAPLES study looking at pts. 15-17 who are having unusual thinking or mild psychotic symptoms – by studying 7 variables in these pts, they were able to improve prediction of who would develop full blown psychosis from 11% to 70% of the time; intervention for those “high risk” pts. could include CBT (quality of evidence is moderate) value), Omega 3 fatty acids (a “maybe” first small study encouraging but needs replication) and targeted cognitive training like CET or cognitive enhancement therapy (value unknown); antipsychotics likely NOT used at this stage; Stage 1 intervention: personalized genomics – this will likely take years and years to study since it’s likely that individual combinations of genes may be operative in etiology of any given individual; summary: 1) early intervention works, 2) therapeutics needs to be aimed at “tuning the brain circuits”, 3) forget the search for a “magic bullet” and focus on “network” solutions (ie circuitry), 4) It’s likely that there will be lots of interventions bundled together an paid for together (like diabetes care)
#4. Science is slow but we know how to bend the curve – some promising areas: Pcori study $1B to study BP and Depr.; remove stigma as Goldie Hawn is doing in her foundation, reaching kids to talk about M.I., epigenetics or the study of how environment affects expression of genes (ie how trauma impacts genome), 3 dimensional brain cell/tissue models, formation of standards/regulation for psychosocial treatments – and FDA for non-drug interventions, aligning payment streams with best practices.
Shaping NAMI’s Future (Annual Business Mtg)
State of the Union: in past year,facebook fans grew from 63,000 to 156,000 this year, membership grew from 44,000 to 49,000, 190,000 people graduated from NAMI Signature Programs, Ending the Silence successfully launched; Mary Giliberti, new Exec. Dir: best friend in college committed suicide, fostering her interest in M. H., she became disability lawyer and observed firsthand profound discrimination vs. m. h. disabilities, works every week on national help line, seems like smart enthusiastic individual dedicated to our mission; NAMI Strategic Plan: make PEOPLE part of our movement, use technology to tell us where things are going (future belongs to the adaptable), Drive Advocacy( health care reform, parity, underserved/hard to engage persons, military/Veterans are key issues for next 5 yrs.), focus on bringing youth into our movement (75% of MI diagnosed before age 25), and form strategic partnerships (Boys & Girls Clubs of America to help with outreach to youth, Alpha Kappa Alpha Sorority to help with outreach to African American community)
Special Policy Forum, Refocusing The Conversation – Strategies for Engaging People in Needed Svcs/Spts
Lisa Dixon, MD, NY State Psychiatric Inst., RAISE Primary Investigator – we must make treatment match what people want; learned how engage difficult clients as ACT psychiatrist using strategies of trust building, community outreach, assistance with basic needs, use of modest discretionary funds, and providing whatever care client will permit; ACT team consumer advocates were usually better able to build trust than other clinicians, had street smarts, were role models and helped reduce stigma; family member on team worked with staff, clients and client’s family and result was the more family contact the client (and team) had with family, the greater the number of days of housing for clients; RAISE focuses on “shared decision making” and uses EBPs including supported employment, Recovery skill tng., CBT and family support/education and 91% of the 65 enrollees in her center continued engagement; guiding principle – focusing on client’s life goals to provide individualized care/supports; 90% of study participants felt that decisions were “joint”.
Marvin Swarz, M.D., Duke – 2 Legal Tools for When Engagement Fails – 1) psychiatric advance directives: to refuse or give consent to future tx. or authorize another to make decisions for them if incapacitated; supports autonomy, may improve continuity of care; activated when, in opinion of treatment professional, one lacks sufficient understanding to make decisions and revoked when again deemed capable. 2) assisted outpatient treatment: last resort when all else has failed, a judge orders person to comply with treatment; used inconsistently; controversial – “if M. H. system is so bad, why blame victim?’ – but until system improves, this is sometimes only tool available; in study comparing case mgt. alone vs. case mgt + aot, the aot group 1/3 less likely to be rehospitalized or incarcerated if aot duration was 6 mo. or longer; in NY state, Kendra’s law cost $32M to run but saved $125M in comm. svcs. cost; used in only 4 persons/1000 and used overwhelmingly at discharge from involuntary in pt. tx.; in survey of clients with sz, clinicians, community at large, top reason to use aot was to avoid hospitalization, followed by desire to avoid violence and desire to contain cost of services – actual cost of svcs decreased 50% in aot group after 2 yrs.
Harvey Rosenthal, Exec. Dir. NY Assn.of Psychiatric Rehab. Svcs. – 40 years in recovery from sz – unfortunate that pro and anti aot folks agree on so much but let this issue divide us – “there’s way too much conflict for two groups who agree on so many other important MH issues” – recovery movement has peer support/free will fixation while families and professionals sometimes don’t understand how traumatizing involuntary tx. is; what we agree on: Employment is key, people shouldn’t be patronized, relationships (with professionals, peers and friends/family) are everything; people resist care because of: shame, stigma, loss of control, poverty, living with people they didn’t choose; we have to fix MH system and quickly – it’s often non responsive to those who resist yet we continue to pay for things that don’t work.
Doris Fuller, Exec. Dir., Treatment Advocacy Center – made persuasive argument for aot acknowledging infrequency of use mentioned by previous speaker and provided all the statistics we cite for judicious use of aot.
Mike Weaver, M.S. Consumer Affairs Specialist, Cardnial Healthcare Solutions – long term recovering person with sz who was also incarcerated described how frightening it was to lose control of decision-making around his illness; cited comments of Pat Deegan’s presentation (reviewed above) about how the totally dysfunctional system including many psychiatrists and case managers prevents people from accepting treatment.
Ken Duckworth, MD, Harvard, NAMI Medical Director – Described his total commitment to recovery model of care and agreed that most M.H. professionals don’t embrace, or sometimes understand the model; described his experiences as ACT psychiatrist and current job as clinician in a program specifically designed to treat younger clients with anosognosia; his experience is that in almost every case with patience and proven engagement techniques (like those Dr. Dixon mentioned plus motivational interviewing) his group has been able to build sufficient trust and practice shared decision making to gain cooperation (he also says that not every person needs meds all the time, so agrees to periodic discontinuation of meds if pt. objects – most times person ends up going back on meds voluntarily); however, in a very tiny minority of clients, aot has been necessary and effective; the goal should be to never use aot but to recognize that it might be last resort in a few instances.
Ron Honberg, J.D, NAMI Director of Policy & Legal Affairs (moderator) – reiterated that there is much more common ground among supporters and foes of AOT than disagreement but that NAMI’s position (though I haven’t seen it in any official statement specific to AOT) is to continue to support reforms in system of M.H. care toward greater self-determination, the result of which should be less resistance to early engagement and thus less need for AOT in future; however, there remains and will likely continue to remain, a very small proportion of people with severe mental health disorders for whom AOT may be crucial – NAMI’s position is to ensure that every plausible way to elicit cooperation be employed before AOT is used as last resort.