This year, I will be doing my best to live-blog from the National Association for Rights Protection and Advocacy (NARPA) 2019 conference in Hartford, CT. Check back often for updates on programming through Saturday the 21st.
Thursday Morning Awards Presentation
The conference opened with Imani Barbarin receiving the Pearl Johnson Award. Imani (aka Crutches & Spice) is an amazing activist working at the intersections of race, disability, and mental health. If you aren’t already, you should follow Imani on Twitter (@Imani_Barbarin) for excellent education and commentary in disability justice.
Keynote – It’s Urgent: Trauma, Human Rights, and Social Justice from Cathy Cave
Cathy’s talk focused on how systemic oppression (racism, sexism, heterosexism, and other forms of oppression) is dismantling community wellbeing – making it impossible for people to live and thrive. Wellbeing is a social justice issue.
“What does it mean to be able to talk out loud about difficult things… and have those voices be heard?”
I was inspired by Cathy’s defintion of trauma – defining trauma not by a specific event, but by the feeling of being overwhelmed or unable to cope. She also stressed that individual trauma cannot be separated from historic and collective trauma – trauma that is often overlooked by healthcare providers offering support to marginalized individuals and communities.
[Image of Twitter Post by Kathy Flaherty: “The solutions for collective trauma are to listen to the people who’ve been harmed. They know what will help.” Cathy Cave at #NARPA2019]
Another thing Cathy discussed that resonated with me was discussing the impact of organizations on collective trauma – how organizations can contribute to trauma, othering, and disconnect. Traditional mental health organizations are notorious for this behavior (at least in radical mental health spaces), and I have personally experienced significant trauma from organizational othering in a field that is supposed to be about “healing” and wellness.
Labels can undermine healing, and this includes demands of compliance (“Take your meds,” “Come to treatment,” “Stay sober” in order to continue getting care). I wish this was common knowledge in healthcare. Providers make decisions on who is worthy, who deserves treatment, who should be included in healing, all without the buy-in of the individual. Rather than person-driven care, we need survivor-defined care. !!! We need to listen to what people say works for them in regards to their care. Safety first for healing, and safety is not defined by the provider, but the client.
In closing, Cathy asked, “What action will you take?” Will you center what people want for themselves? Are you willing to advocate with folks, not for folks? What can you learn, what can you share, and what will you do? Then commit to something.
Cathy Cave is Co-Founder of Inspired Visions, LLC and Senior Training Consultant for The National Center on Domestic Violence, Trauma, Mental Health.
Workshop – Advocating for Prisoners with Mental Health Issues in Jails and Prisons: Lessons Learned from Recent Efforts in Mental Health Legal Advisors Committee, Massachusetts Prison Legal Services, and The Harvard Prison Legal Assistance Project with Jennifer Honig, JD, LaToya Whiteside, JD, Joel Thompson, JD
Very informative workshop on advocating for prisoners with mental health labels. Prisoners with mental health labels are routinely subjected to solitary confinement / seclusion, restraints, abuse, and other forms of violence. Lawyers told stories of their clients being giving disciplinary action for “bleeding on the guards” after self-harming. Of guards “gaming diagnosis” to get prisoners held in long-term solitary confinement. Institutions changing the name of their solitary confinement units to get around legal restrictions (sometimes keeping prisoners in cells for 22 hours a day). Prisons are such low trust (imo no trust) environments – so how can anyone receive therapeutic mental health care in such a state? (Liebling 2004; Harvey 2011 Link)
Overall, research on prisoner mental health is severely lacking – a lack of studies, small sample sizes, poor access to treatment, lack of autonomy in selecting treatment. We received a handout with tons of data and research, which I will put into here later.
Luncheon Keynote – Lessons from the Heartland: Stories from the Illinois Legal Advocacy Service with Laurel Spahn
One major interaction I’ve noticed at NARPA is between lawyers (some without lived experience) and individuals with lived experience. I noticed that some advocates feel their issues in society are trivialized at these conferences, whether it’s restraint / seclusion, forced treatment, or overall discrimination in society. There are always a sizable group of lawyers working in mental health law that have no knowledge around what it’s like to actually live with a psychiatric or mental health label in our current society. I applaud these lawyers for choosing to attend a progressive conference (as opposed to a NAMI-esque one), but sometimes tensions arise when there’s an obvious difference in types of expertise.
This luncheon keynote opened with a game of legal discrimination case Jeopardy!, which drew some looks and upset some members of the audience (in addition to the idea of trying on restraints in a case against shackles in legal settings). I think we need more conversations around education vs trivializing experiences, but I also want to honor the important work Laurel Spahn has done (including defending a case against forcing an 80-year-old into involuntary ECT).
Combating Five Myths on Psychotropic Medication Treatments with Julie Zito, Ph.D.
1) New drugs are better and safer.
To begin the workshop, Dr. Zito examined esketamine for “treatment resistant depression,” for which she was on the FDA panel of experts (drug approved 14 to 2 in February 2019). Dr. Zito argued that there is weak evidence of benefit in the esketamine for a number of reasons: design issues in the major studies, weak definition of treatment resistant depression (two “failed” anti-depression treatments), short trial period of only four weeks… Terrifyingly, only 1 of 3 trials had positive outcomes – with 6 deaths in the esketamine group, and no deaths in the placebo (with a sample size of around 200). It’s important to find more effective drugs, but you need to prove they are safe and effective first.
2) Clinical trial effectiveness data are enough.
3) Better post-marketing data aren’t needed, because safety data from clinical trials are enough.
Dr. Zito brought up “Phase 4: Post-Marketing Surveillance” in the FDA Drug Approval Process. Clinical trials don’t tell us about how medications affect youth and elderly individuals, off-label use, or how well a drug treats individuals from community-treated populations that are often left out of clinical trials (BIPOC, people experiencing homelessness, people with poor access to mental health treatment). Dr. Zito advocated for written and signed informed consent (patients given literature to review and sign) in all mental healthcare settings, especially in regards to off-label use. Another important effect to know about is the positive publication bias – that 60% of negative clinical trials are never published. An interesting idea she proposed – training people taking medications to monitor their own side effects, symptoms, functioning, and outcomes to present to their doctor. Overall, clinical trials are too short, too simple, too small, too median aged, and too narrowly focused. (I would also add “too white”)
4) 21st Century Cures Act will improve treatments.
Uses “innovative drug” or break-through therapy designation to fast-track new drugs to market.
5) Children are just little adults.
We ran out of time, but nope, not in terms of medication.
Labeling Norms as Disordered: Young Adults’ Loss of Identity with Michaela Fissel
“The under-achievement of young adults with serious mental illness suggests that mental health services are not effectively meeting the unique needs of the cohort.” (GAO 2008) We are failing to meet the needs of young people with psychiatric or mental health labels.
We did an activity that hopefully was enlightening for many people in the room. We did a word association for how we think about young people, and how we think about mentally ill people (turns out, there’s a lot of overlap). Young people are a marginalized community that experience oppression, which intersects with other forms of oppression like racism, sexism, heterosexism, transphobia, sanism, ableism.
[Image of a poster that is comparing beliefs about mental illness and young poeple. There is overlap among terms like “lazy,” “incompetent,” “delusional”]
Note for Audience: Adults need to learn how to uncenter themselves from conversations about youth and young people. A lot of angry parents attempted to hijack this conversation and make it about them, which thankfully, the presenter redirected.
What’s Going On In Washington? with Jennifer Mathis, JD
One session I look forward to at NARPA is the federal policy update session with the Bazelon Center for Mental Health Law. Naturally, the session opened with an analysis of Trump’s recent comments on mental illness and gun regulation, including calls for rebuilding the institutions (citation). (If you are reading my blog I hope you know this, but reinstitutionalization is NOT the answer to anything, and the link between mental illness and gun violence is nonexistent to weak at best). To be completely fair, politicians from all parties are saying stigmatizing and discriminatory things about mental illness and gun violence, so this issue is much bigger than Trump alone.
Another thing to watch out for are Extreme Risk Protection Orders (ERPOs), which while often not specifically targeted to people with psychiatric labels, can be used to target our community (for the Pittsburgh community, an ERPO has been proposed this year after the Tree of Life shooting). There will be a bill coming to the Senate soon, but Bazelon reported that it will not have a separate mental health category. School threat assessment bills will be coming up as well – a method to profile children and bring police into schools.
We also discussed the Health Advanced Research Projects Agency (HARPA), which would seek links between mental illness and violence through monitoring and surveillance through smart watches, smart phones, and other surveillance means. Lydia X. Z. Brown attended the workshop and brought important insight on this proposed project and the school threat assessment bills, bringing a more realistic (sometimes labeled as pessimistic) view on the policy landscape for those of us with psychiatric labels or who are disabled.
There are ongoing, dangerous conversations about trying to reform HIPAA to reduce privacy protections for people with psychiatric labels. Thankfully, these talks are not even at a proposal stage yet (only a request for information), so advocates are hoping to “run out the clock” on those trying to pass something to attack patient privacy. Another dangerous conversation to watch is politicians attempting to remove IMD exclusions on funding institutions (the ruling bars Medicaid from paying for treatments in mental health facilities with more than 16 beds). Vermont currently has an IMD waiver that institutions can apply for, open to public comment, and Bazelon posts their talking points on their website.
Ethical Guidelines: Hiring and Working With Peer Specialists with Darby Penney, MLS
Is it possible to salvage the concept of genuine peer support in the context of rampant co-optation of peer support specialists? Are there options that might work better?
Immediately, we started discussing the fact that there is no agreed upon definition of “peer support.” A lot of the alternative mental health communities use a definition similar to mutual aid, while SAMSA and other regulatory bodies use a definition rooted in the medical model, illness, and disorder. These definitions vary widely, occupy different roles, and attract different individuals. Peer support has also been co-opted in some circumstances, applying functioning labels to peers, labeling peers as unable to hold “other low-functioning jobs,” and extending the reach of psychiatry through peers as “paraprofessionals.”
Another problematic aspect of current peer support positions is the working conditions: low pay, insufficient hours, negative/rejecting attitudes of non-peer staff, and being treated as patients instead of colleagues. Overall, everyone supported the idea that peer support is best provided through independent, peer-run organizations that are not affiliated with traditional mental health organizations. I completely agree – this is what Inside Our Minds does, though its extremely difficult to find funding that meets these guidelines to continue to provide our programming for free.
Would it be possible to develop a Code of Ethics for peer support specialists? Could something like this be enforced in all settings? I will be pondering these questions for myself.
Significant Developments in Mental Health Law with Robert Dinerstein
Saturday – Final Day
Extreme States Across Context: Building a Bridge Between Psychiatric Survivors And People Who Use Drugs with Katherine Celentano and Queen Adesuyi
I was excited for this workshop (as well as a bit apprehensive), because the idea of bridging the psych survivor and harm reduction communities is something that is much needed (and often very difficult). In my experience in both communities – some psych survivors have harmful and ableist views of drugs and drug use, and some people working in harm reduction have archaic views on mental illness. I was hoping for this workshop to foster some meaningful conversations, and hopefully not fights and divisions.
The workshop started with short presentations by Katherine and Queen. We talked about the intersections among the alternative mental health communities and harm reduction – expanding civil comittment laws and conservatorship for drug users, making statements on drugs like marijuana causing psychosis and violence. We discussed positive policies, like safe injection sites or overdose prevention spaces, needle exchanges. We also discussed how people are kept away from drugs that are beneficial to them (eg marijuana), and instead pushed into psychiatric medications that may not be the best choice for them. The criminalization of drugs and its effects on future ability to get a job, find housing, drive, get healthcare, etc.
Another huge topic of discussion is medical paternalism – “a set of attitudes and practices in medicine in which a physician determines that a patient’s wishes or choices should not be honored.” Doctors deciding on behalf of a client what works for the client, rather than having buy-in, informed consent, and conversations around what the client wants. Prescription drug monitoring programs (PDMPs) promote this paternalism, criminalizing drug testing strips, keeping drugs away from people with chronic physical pain.