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Monday, 26 June 2017

RLC Articles

The RLC produces a newsletter each and every month that offers monthly calendars, announcements and articles. Although old newsletters are archived on the website, the articles - often on important advocacy-related issues - run the risk of being buried and difficult to find. In an attempt to make that information more accessible, we still also list RLC-published articles from the newsletter (and other relevant sources) here for your ease and perusal.

 

Supported Decision Making, NOT Shared

‘Shared Decision Making’ is taking up a lot of space in system conversations as the next ‘hot new thing’, but there’s a lot to think about whenever taking on a new ‘next thing’. For example:

  • Is it really changing things or just repackaging the same old stuff?
  • If it really is making a change, is it definitely headed in the right direction?
  • How consistent is it with other efforts a group or system is currently working on?
  • If it’s not consistent, what else needs to change so that one isn’t constantly stuck in a circle of defeating all movement by trying to do opposing things all at basically the same time?

This article will not address all these issues, but it will start with one:

Should we be working on ‘Shared’ Decision Making… or ‘Supported’?

Shared is not the same as supported. Specifically, unless two people are truly making a decision that is close to equally impactful for both of them (e.g., when a couple decides to move to another state or similar), then a decision is not shared. To suggest that it is shared, when what we’re really talking about is a doctor or other treatment provider being a part of making a decision that they get to walk away from when they return to the rest of their life, will ultimately feel dishonest, patronizing, and possibly even coercive to a lot of people.

Instead, we ask that people adopt the language of ‘supported decision making’ (already in use in many legal circles) to much more clearly signify that decisions often belong to one person, but that that person may sometimes benefit from a supportive process that helps them learn about and weigh options, concerns and the realities of various situations.

This may seem like a trivial matter, but how we talk about and name things can impact our ability to work with them and with each other in dramatic ways. Once we agree that we’re talking about ‘Supported Decision Making’ and not ‘Shared’ that leaves room for many other conversations!

Stay tuned for more in coming months!

Watch Out! - Mental Health & Artificial Intelligence

Joy BotIn a world where so many of us can agree that human connection is essential to emotional health and healing, there is a growing trend to try and create artificial intelligence that can take the place of (or at least fill in for) all that.
 
Chatbots and other forms of ‘artificial intelligence’ are showing up all over the place trying to offer pre-programmed support to people who might be lonely, struggling, or otherwise wanting connection.
 
“Joy” is one particularly visible support bot attempting to use pre-programmed responses to simulate support and help people track their emotions over time. “Woebot” is quite similar,
although this version comes with multiple choice buttons rather than allowing for so much free-form typing. And while Joy and Woebot both got their starts through the Facebook chat system, “WYSA” is a phone application that is meant to work as a ‘coach’ trained in such popular approaches as Cognitive Behavioral Therapy and Motivational Interviewing.
 
Unfortunately, fake or ‘programmed’ connection is often like no connection at all, and sometimes these bots give responses that are quite dismissive or hurtful. While they tend to come with lots of disclaimers, the disclaimers are not prominently displayed, and some people who use these services will likely never see them or necessarily even understand quite what they’re interacting with or why it gives the responses it does.
 
In addition to that, there’s the question of privacy. Who can see what you say to a bot? Is it programmed to call in ‘emergency’ professionals when you might not be expecting it? What if these bots cause more harm than good?
 
These are all questions well worth thinking about.
 
Read “Killjoy: the Story of a Misguided Mental Health Bot” by Sera Davidow for more on this topic:

National Certification is Bad for Peer Specialists

Mental Health America (MHA) just released the first ever national certification for Peer
Specialists, and we want you to understand why that is terrible news.
 
First, although Mental Health America bills themselves as an advocacy organization, they do not speak for, nor are they run by individuals who have first hand experience receiving services in the psychiatric system. Their president, Paul Gionfriddo, is a parent who has supported forced treatment laws. He is also known for the development of the ‘4 Stages of Mental Illness’ model that equates ‘Stage 4 mental illness’ with (basically) Stage 4 cancer (a concept that is misleading and insulting to many of us). Additionally, MHA is known for taking extraordinary amounts of funding from pharmaceutical companies.
 
Other issues include, but are certainly not limited to:
  • Training peer supporters to not "get in the way"
  • A peer supporter refusing contact on these sorts of bases would be a violation of the very nature of peer-to-peer relationships.
  • This training is being offered online. Peer support is centered around human connection and relationships. It does not fit with the impersonal nature of a computer screen.
While MHA claims to have consulted with a select few that have psychiatric histories, this is not the same as the process having been led by a peer-run organization or group. When questioned on this point, Patrick Hendry (Vice President of MHA’s Peer Advocacy, Support and Services) essentially said that MHA took it on because no peer-run group had already done so.
 
This is not sufficient justification.
 
We hope that you will join us in boycotting this certification and asking others to do the same.
It is costly both in dollars and to our integrity.
For details on the training itself: www.mentalhealthamerica.net/center-peer-support

Read more: National Certification is Bad for Peer Specialists

Why Diagnosing Donald Trump is Harmful to Us All

Trump Diagnosis HeadlineThere has been a recent trend of attempting to diagnose Donald Trump as ‘severely mentally ill’. Some are using it as an opportunity to make fun of him. For example, Andy Borowitz published a ‘satirical’ piece in the New Yorker about Trump hearing voices: "Trump Accuses Media of Not Reporting Voices He Hears in Head". Although meant to be funny, the piece pokes fun at Trump at the expense of people who do actually hear voices, and reinforces negative stereotypes.

But most articles about diagnosing Trump aren’t meant to be funny, including a petition started by a psychologist and demanding his removal from office on that basis. Why is all of this a problem? There are several reasons including (but certainly not limited to):

The suggestion that psychiatric diagnosis means one is unfit to be president is discriminatory. There are many people who’ve been diagnosed, hospitalized, and so on, who are extremely smart, reliable, gifted, loyal people working in jobs where they have a great deal of responsibility and much positive impact.

The suggestion that we need to diagnose someone to see their actions as good or bad is harmful. People are perfectly able to look at what Trump is doing, and decide how they feel about it or evaluate his actions against the law and ethical standards without a diagnosis.

Pointing the finger at a supposed ‘mental illness’ does nothing but further harm already marginalized groups in this country. The people this will ultimately harm the most will not be people with lots of power and money, like Donald Trump, but the rest of us who’ve also been diagnosed and are mostly just trying to survive in this world. For more on this topic see the following two articles:

Trump and the Diagnosis Free-for-All ~ by Sera Davidow.

The Truth about Trump & Psychiatric Diagnosis ~ by Paula J Caplan

and to read the entire article, choose "read more" below

Read more: Why Diagnosing Donald Trump is Harmful to Us All

The Murphy Bill: Take 2

On Thursday, June 4, 2015 the Helping Families in Mental Health Crisis Act was re-introduced by Representative Tim Murphy of Pennsylvania. It is also known as H.R. 2646 or, perhaps most commonly, as the ‘Murphy Bill.’ Although it is claimed that the second version of this Bill contains several compromises, it seems just as bad as the first.

In fact, it may actually be worse, and here’s why: The second version of this bill uses toned down language and seems like it’s let go of some of it’s original (and more controversial) priorities. However, most of the ‘toning down’ seems superficial in nature, and so what this actually means is that the Bill is all the more likely to get passed while still essentially allowing for the same setbacks, invasiveness and rights violations to those receiving (or targeted as needing) services in the mental health system.

Ultimately, as with the first time this bill was introduced (2013), it suggests many changes to existing laws and programs that pose a serious risk to our work and movement. Some of the most notable points include:

  • Increased Forced ‘Treatment’: The Murphy Bill seeks to loosen restrictions on when force can be used and ties certain types of federal funding to state implementation of Involuntary Outpatient Commitment (IOC) laws (also known as Assisted Outpatient Treatment or ‘AOT’). Although the Bill no longer requires a block on federal funds to a state that does not employ IOC, it still incentivizes it by giving more to states that do. IOC is a particular form of forced ‘treatment’ that allows for forced medication and a number of other requirements and limitations regarding how someone lives their life, sometimes for reasons as simple as the system feeling that that person has been hospitalized too frequently. (For more on IOC, see this article: www.westernmassrlc.org/rlc-articles/214-outpatient-commitment-laws-a-massachusetts)
  • It Guts the Substance Abuse and Mental Health Services Administration (SAMHSA): SAMHSA has and continues to provide funding that many feel is important and highly impactful both for people who   struggle with addictions and substance abuse and those who struggle with emotional or mental distress, trauma and psychiatric diagnosis. For example, they provided the initial funding for Second Story Peer Respite in California. They are also responsible for funding peer-to-peer technical assistance centers like the National Empowerment Center in Massachusetts and Peerlink in Oregon, as well as for the funding that helped the Western Mass Recovery Learning Community develop the Handbook on Peer Roles (available here: www.psresources.info). Whatever complaints their may be about SAMHSA, gutting them and moving funds under the control of the Assistant Secretary for Mental Health and Substance Abuse Treatment would inevitably lead to the loss of many supports, particularly in the peer-to-peer realm.
  • It Severely Limits How Advocates Can Support People Whose Rights are Being Violated: In the first version of the bill, Murphy sought to gut the budget of the ‘Protection and Advocacy for Individuals with Mental Illness’ (PAIMI) programs (i.e., operating under the Disability Law Centers). This version shifts its tactic from budget reduction to placing limits directly on the authority of such advocates to act on complaints. In the end, the result is the same: Less support and advocacy to people whose rights are being violated.
  • It Loosens Restrictions on HIPAA: The Health Insurance Portability and Accountability Act (HIPAA) is what requires medical and mental health professionals to go to great lengths to keep your information private. In this second version of the Bill, Murphy has pretended that he is compromising by no longer okaying the release of psychotherapy notes. However, his new Bill still allows for the release of diagnosis, treatment plans, medication plans, and so on to family and caregivers even when against the person’s will.
  • Murphy Pretends to Support Peer-to-Peer Support as a Method to Control and Limit It: In the first version of the Murphy Bill, funding for peer roles was not supported. In what is being marked by some as a ‘concession’ by Rep. Murphy, the new bill encourages funding for peer support. However, the funding comes with a strict definition of what people in peer roles are able to do along with a requirement that they be supervised by mental health clinicians. Should this come to pass, it would devastate the concept of independent peer-run efforts and severely limit some of the most impactful peer supports currently available.

 

There’s a great deal more to this Bill and if you’re interested in reading it for yourself, you can do so here:  http://docs.house.gov/meetings/IF/IF14/20150616/103615/BILLS-1142646ih.pdf

A hearing on the Bill was also held on Tuesday, June 16 and should be available for viewing on the Energy & Commerce Committee’s website here:  http://energycommerce.house.gov/hearing/examining-hr-2646-helping-families-mental-health-crisis-act#video

You may also be interested in reading Harvey Rosenthal’s written testimony for the June 16 hearing below.

Harvey is the Executive Director for the New York Psychiatric Rehabilitation Association Services (NYAPRS) as is a longtime outspoken advocate against Involuntary Outpatient Commitment.

http://docs.house.gov/meetings/IF/IF14/20150616/103615/HHRG-114-IF14-Wstate-RosenthalH-20150616.pdf

Also of note, Doris Matsui has proposed an alternate Bill, ‘The Including Families in Mental Health Recovery Act.’ While many feel this Bill does not go nearly far enough, others are choosing to support it as a much preferred alternative over the Murphy Bill. You can view this alternate Bill here:

http://matsui.house.gov/uploads/Matsui%20Mental%20Health%20Legislation.pdf

BUT MOST IMPORTANTLY:

Call your state Representatives and Senators and tell them you oppose the Murphy Bill (HR 2646) and are asking them to do the same!!!!!

You can find out who your State Representative is here: http://www.house.gov/representatives/find/

You can find out who your State Senator is here: http://www.senate.gov/

The life of a Bill is unpredictable and so it’s not clear how long the Murphy Bill might take to pass or be dismissed, but we hope that you’ll join us in staying on top of what’s happening and what we can do to stop the Murphy Bill. In an effort to support that, we will be launching a ‘Stop the Murphy Bill’ webpage on our website by mid-July to help everyone stay up-to-date. Stay tuned for more!

Outpatient Forced Commitment: An Update on ‘Forced Treatment’ in Massachusetts

Massachusetts is one of the last states (alongside our neighbors in Connecticut) to not have a formal ‘outpatient commitment’ law (often referred to as ‘AOT’ or Assisted Outpatient Treatment in the media). These laws can be extremely far reaching in how they applied.

For example, a person can be ‘sentenced’ to this kind of forced treatment when they get in legal trouble or simply because others feel they’ve been hospitalized too frequently. As a part of this kind of forced treatment, they can be required to do anything from taking particular psychiatric drugs to attending therapy and/or day programs to living in a particular area and so on. And, when they fail to comply, that can be grounds for them to immediately be picked up and incarcerated in a hospital (even if they are doing well overall in the community and simply based on the theory that something might go wrong for them because they are not complying with the order).

Overall, Massachusetts has resisted Outpatient Forced Commitment laws in spite of ongoing pushes from legislators like Senator Ken Donnelly and Representative Kay Khan along with the national Treatment Advocacy Center. However, in the last year, proponents of this kind of forced treatment were successful in pushing through a $250,000 pilot program. The pilot program is currently underway at Eliot Human Services based in Lexington.  This pilot is dangerous even if Eliot finds a 'nicer' and more 'progressive' way of implementing it (which could, more than anything, lead to a dangerous blending of force and choice-oriented approaches that ultimately only serves to distort the concept of 'person-centered' and 'self-determination').

This pilot program is extremely problematic for a number of reasons including:

  • It’s a slippery slope: Although the door is not fully open to widespread Outpatient Forced Commitment in the state, this pilot is like a ‘foot in the door.’ The longer it is allowed to continue, the more likely it becomes that this sort of forced treatment will shift into a full Outpatient Forced Commitment law.
  • Eliot is employing people in peer roles in this program: Peer-to-peer support is absolutely inconsistent with the use of force. Employing someone working in a peer role as a primary team member of a program built around the concept of Outpatient Forced Commitment is an abuse of the peer role. Some are even calling for the individual working in that peer role to have to give up their certification as a ‘Peer Specialist’ because this represents a violation of the Certified Peer Specialist Code of Ethics. To allow this to continue will do a great deal of damage, including to the integrity of the peer role itself.
  • Eliot is using Pat Deegan’s Commonground as a part of this program: Commonground is a computer program that supports informed choice and full participation for people when they are meeting with their psychiatrists. It is based on the concept of person-centered and person-driven care and the wisdom that comes from living your own life and knowing what is right for you. It is dishonest and disingenuous to employ this tool in an environment that is based on the concept of Outpatient Forced Commitment. It was also put in place as a component of this program without the knowledge of Pat Deegan (who herself was once diagnosed with schizophrenia and has gone on to build a full life, including the development of this program).

This program must be stopped. Unfortunately, the Senate Ways & Means Committee just earmarked $250,000 for the pilot program to continue. However, before the budget becomes final, the Senate and House must form a joint council to review the differences in their budget recommendations and come up with a joint plan to submit to the Governor.

TAKE ACTION: You can help stop this effort by contacting own Senators and Reps (wheredoivotema.com) along with leadership of the Ways & Means Committee today. Consider saying something like, “Forced Outpatient Commitment (also known as AOT) is harmful. It has been proven ineffective and a waste of resources by a number of studies (for details: ncmhr.org/downloads/NCMHR-Fact-Sheet-on-Involuntary-Outpatient-Commitment-4.3.14.pdf). Please oppose the earmark for the continuation of the AOT Pilot in Massachusetts.”

To find the contact information for members of the Ways & Means: malegislature.gov/Committees/Joint/J39

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