Saturday, August 27, 2016

#27. The Time is Now: 100% Voluntary, User-Controlled, Community-based

This is Day 27 of our 30-day blog on the Declaration of Principles adopted by the 10th Annual Conference on Human Rights and Psychiatric Oppression held in Toronto, May 14-18, 1982.  (More info here.)  Today we are talking about Principle 27.

Principle 27 reads in full as follows:

We believe that voluntary networks of community alternatives to the psychiatric system should be widely encouraged and supported.  Alternatives such as self-help or mutual support groups, advocacy/rights groups, co-op houses, crisis centers and drop-ins should be controlled by the users themselves to serve their needs, while ensuring their freedom, dignity and self-respect.

Basic Rationale

Today's piece outlines a proposal for making this Principle accessible and real. Originally published last fall, the proposal challenges the Murphy Bill as the only mental health reform legislation on the table.  It opposes the government policies, like those in the Murphy bill, that seek to coerce people into institutional or treatment settings.  It asserts instead that the proper role of Government is to encourage the natural, inherent capacity of community members to grow, develop and meaningfully support each other to navigate the life crises that inevitably occur.

Here is the proposal:

Federal Minimum Standards for a Community Mental Health Infrastructure

An Outline for Public Policy Reform and System Overhaul Legislation

Principle 1: Grow and Support Community Capacity. 

We must reverse the alarming trend toward permanent disability that results when people come into contact with our current system of mental health services. This system "treats" mental health crisis by yanking people out of their lives, dislocating them from natural supports and making their issues the exclusive prerogative of 'experts.' When public or private health insurance runs out, this profit-dependent system of professionals dumps these same people back into the real world with even fewer supports and resources than they had before their crisis began - and then blames them (or their families) when they fail to successfully reintegrate.

To counter these harms and reverse this trend, we must build the capacity of ordinary people to support each other through difficult times. Far from being the aberration, challenges and hardships are are a normal part of life as vulnerable beings in an uncertain, high-stakes, resource-scarce world. We therefore should anticipate difficulties and breakdown, not pathologize them.

To this end, every community and every citizen in United States should have access to:

1. A safe place for respite

2. A peer support center

3. Hearing Voices groups and training

4. Intentional Peer Support groups and training

5. Emotional CPR crisis supports and training

6. Icarus Project groups and training

7. Wellness Recovery Actions Planning (WRAP) training and wellness supports/ groups that make available health- promoting, capacity-restoring activities like art, exercise, creativity, writing, social interaction, nutritious eating, meaningful vocation, relaxation, meditation, spiritual development, body work, massage, yoga, dance, etc.

8. Alternatives to Suicide training and groups

9. Peer and professional support for coming off psychiatric drugs
10. A 24 hour support line staffed with people who care and want to listen

11. A "When Johnny & Jane Come Marching Home" (citizens listening to veterans) Project to support, honor and begin to appreciate the experiences of our veterans.

12. Trauma informed local governments, agencies and policies.

13. Open dialogue as a support for family communications during times of distress or crisis

14. Support for human rights

Principle 2: Fund Technical Assistance

The above are cost effective promising and/ or evidence-based practices that have the potential to vastly improve the quality of community relationships for citizens at all levels, including individuals, families and neighbors. To make these activities accessible and sustainable, Federal and State Governments must invest the resources necessary for communities to know what that these options exist and how to develop and sustain them. The federal government should therefore expand, prioritize and/or redirect existing funding to a nationwide network of technical service centers that support States, communities, organizations and interested individuals to:

1. Develop and offer the TA support and training infrastructure needed to build the above capacities.


2. Ensure that new and existing practitioners are supported to grow and develop their skills

3. Design and implement a robust and integrated public health research approach for collecting broad scale system performance data.
  • The data collected should include not only not only costs and outcomes but also service users' subjective ratings as to how their lives have improved (or deteriorated!) as a result of services received. 
  • It should affirmatively seek out service user recommendations for improvement;
  • It should follow service users over time and see if they continue to rate services the same over the long haul and also to capture the learning effects of hindsight and reflective insight into what, in the long run, was most helpful (and what wasn't!)
This publicly funded research initiative is necessary to counter the current abuses where the only research that gets done into what works is done by corporations with products to sell and profits to make, thereby creating huge incentives to distort and massage results.
Resources for development:

4. Develop independent oversight and regulatory infrastructures needed to ensure that communities and provider organizations meet these standards and support them in meaningful ways.

Principle 3: Leverage Existing Federal Funding to Gain Local Buy-In

Without spending a penny more of federal tax dollars, existing federal healthcare funding has tremendous power to encourage local communities to change in the above directions. To this end, no State, community, organization, agency or hospital should be able to receive federal funding or any taxpayer healthcare dollars unless it:

1. Offers individuals and families non medication alternatives on a par and as an equally respected alternative to invasive high-risk interventions like medications, ECT, TMS, psychosurgery or other procedures.

This is necessary to counter the strong alliance between traditional services and the corporate interests that benefit financially from the medical/ high-tech model of services. This alliance has been resulted from the billing considerations - not participant service needs. It stems from the reality that Medicare and insurance reimbursers have conflated concepts like 'health' and 'wellbeing' with the delivery of traditional medical services. Thus, in order to bill for services, mental health providers are required to offer services that fit the insurer's criteria of 'medical.' This steers treatment recommendations in the direction of expensive high tech services (like Pharmaceuticals, ECT, TMS and psychosurgery) that benefit corporations and 'experts' - but which, in reality, few people in crisis really want or need.To the contrary, the vast majority of those who find themselves interacting with the mental health system would vastly prefer, if given a choice, to be offered basic human qualities like caring, listening and hands on assistance. These services are no more expensive compared to the high tech options. They are time and labor intensive, however, and therefore would require service systems to shift resources away from expensive impersonal technologies and into adequately staffing mental health organizations. It would also require organizations to shift hiring priorities from finding professionals who are good at technology, regulations and paperwork to people who can offer personal qualities like caring, interest, flexibility, creativity and a willingness to meet someone from their own frame of reference in a way that makes sense to them. 
Resources for making this shift include: 

2. Monitors, reports and makes publicly available data related to any and all symptoms and reactions from all high-risk high tech interventions like neuroleptics, ECT, TMS, psychosurgery, seclusions, restraint, hospitalization and the like.

3. Monitors, records, reports and makes publically available data on any and every use of force by any service, program or law enforcement

4. Conducts a post-incident debrief with regard to the above that invites the person of concern to share their experience and recommendations.

5. Implements an ongoing community-based research and system like that above to insure ongoing learning and quality improvement as a result of the federal dollars expended. Such a system should, as a minimum assure that an outside, independent body collects customer satisfaction and recommendation data and that a sincere effort is made to collect such data from every person who uses its services.

6. Has a community review board staffed by at least 50 percent of current or former service users that reviews all services, programs and incident reports and customer satisfaction surveys and makes enforceable recommendations.

Questions for Reflection

We are building this work together.  Your lived experience is needed and valued.  It is essential to building our shared knowledge and expertise as a movement.  Please comment on any or all of these questions or in any way that speaks to you personally.

1. Have you ever experienced voluntary peer-run or self-help alternatives? 
2. Compare them to your experience of forced psychiatry or professional services.   
3. What would you like people of conscience to know about the differences?
4. What other voluntary, community-based or natural alternatives have you found helpful?  
 5. If we were serious about encouraging voluntary alternatives, what would need to change and how could we make this happen?  

September 27, 2016:  Conference on Principle 27 

We will talk about Principle 27, including your responses, on September 27 from 9-11  PM EST.  Call-in details TBA

1 comment:

  1. Glad to see you taking a stab at overall policy and framework for how services could be changed in practice.

    The one thing that isn't said, is that there has to be a guarantee of no force or coercion in services, including no forced drugging, no forced electroshock, no restraint, no solitary confinement, no involuntary commitment. Without that, there is not going to be free choice for anyone to stay away from services altogether or to fight to get their needs met by creating services that don't exist yet.

    I would therefore suggest adding this as a principle to the proposal, and using the model that exists in the proposed federal legislation, the Disability Integration Act as a starting point (for these aspects).


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