Communication to the Public

Letter from Director of Public Policy Lauren Spiro to PBS Re: "Minds on the Edge: Facing Mental Illness"

National Coalition of
Mental Health Consumer/Survivor Organizations
1101 15th Street, NW Suite 1212
Washington, DC 20005

February 4, 2009

Dear Mr. Kilberg & Mr. Lasseur,

Thank you for including me on the panel of the Fred Friendly Socratic Dialogue on January 31, 2009.

I am writing to express my disappointment concerning the fact that the panel did not actually constitute a dialogue. The word “dialogue” implies that more than one opinion is well-represented.

There are at least two perspectives on the issue of forced treatment. Some believe that it can be lifesaving – and that position was given a disproportionate percentage of attention during the taping. Others believe that forced intervention is, by definition, traumatizing and counterproductive. I am hoping that the final version of the program addresses this imbalance by including more information about the need for choice and self-determination in regard to mental health treatment, and the short- and long-term damage inflicted by the use of force and coercion.

Because of the pervasive abrogation of individuals’ civil rights – even a person accused of serious criminal behavior is given greater legal protection and due process than a person diagnosed with mental illness – these issues are not being properly considered by the courts (Gottstein, 25 Alaska L. Rev. 51 [2008]; see, also Perlin, 42 San Diego L. Rev. 735, [2005]; and Morris, 42 San Diego L. Rev. 757, 772–74 [2005]). Research clearly shows that forcing patients to take medication is not supported by clinical evidence (Jarrett et al., Coerced medication in psychiatric inpatient care: literature review, Journal of Advanced Nursing, 538-548, Dec. 2008), that coercive interventions are routinely traumatizing to the individuals they purport to help and make people fearful of seeking treatment (Campbell and Schraiber, In Pursuit of Wellness: The Well-Being Project, 1989). In addition, involuntary interventions are a poor substitute for building recovery-focused, culturally attuned, community-based mental health and social support services.

There is an alternative to force and coercion: the fostering of trusting and stable relationships while emphasizing choice in treatment plans.

For example, peer-directed services – services directed by individuals who themselves have psychiatric diagnoses – and peer support workers can often help persons whom traditional services cannot reach. Training and education are needed to ensure that mental health professionals – and the public – understand that there is always a person inside even the most severely distressed individual. That person is usually frightened and may appear trapped in a personal version of reality or temporarily lost in an internal monologue. At times like this, what is needed is someone patient and skilled at engaging this individual in dialogue. He or she can often be reached by a peer who has been through a similar experience, or by a provider specially trained by peers.

Another way to avoid force is by giving person-centered crisis plans the weight of law, as some states have done. (Such plans are written documents in which an individual expresses his treatment preferences so that, if he later is not competent, his preferences can be adhered to. The individual can also identify someone to act as a health care agent who can make sure his wishes are respected.)

The goal of treatment should be recovery of a full role in society, not mere maintenance of “symptom-free” behavior. In 2003, the President’s New Freedom Commission on Mental Health, charged with reviewing the public mental health system in the United States, reported “that the current system is unintentionally focused on managing the disabilities associated with mental illness rather than promoting recovery, and that this limited approach is due to fragmentation, gaps in care, and uneven quality. These systems problems frustrate the work of many dedicated staff, and make it much harder for people with mental illness and their families to access needed care. Instead, the commission recommends a focus on promoting recovery and building resilience – the ability to withstand stresses and life challenges” http://www.mentalhealthcommission.gov/press/july03press.htm.

The more the public becomes aware that alternatives to force and coercion work, the more the public will support them. I had been hopeful that the Fred Friendly Socratic Dialogue would help educate the public about the harm that results from involuntary treatment and the fact that such methods have been shown to be ineffective, as well as the fact that alternatives to force have a proven track record. My hope now is that, even after the taping, something can be done to convey this message to the public.

Peer-run crisis respite centers are the most recovery-oriented, cost-effective alternatives to psychiatric hospitalization. These voluntary centers provide hope, trust, person-centered treatment, and interpersonal connection from the outset. Unlike involuntary hospitalization, which disconnects and disempowers the individual, these centers start individuals with psychiatric disabilities on their road to recovery at one-third to one-fifth of the cost. Several examples of these peer-run crisis respite centers are attached below.

Thank you in advance for making sure that the final product presents a balanced view of the issues. If you would like to include more interviews, I would be happy to provide you with names and contact information of people who would make an excellent contribution to the program.

Sincerely,

Lauren Spiro

Director of Public Policy

Attachment can be found at: http://www.power2u.org/peer-run-crisis-services.html 

Stop Judging and Start Helping Those With Mental Health Needs

By Lauren Spiro, Director of Public Policy, National Coalition of Mental Health Consumer/Survivor
Organizations & Judi Chamberlin, Director of Education and Training, National Empowerment Center

H.L. Mencken said, "For every complex problem there is a solution that is simple, neat, and wrong." The Virginia Tech tragedy in which a student was responsible for the shooting deaths of 33 people, including himself has been generating this kind of solution.

Governor Tim Kaine of Virginia recently suggested one such misbegotten plan: the creation of a list of individuals ordered into involuntary mental health treatment, to be reported on a state's Central Criminal Records Exchange. On the Hill, there is a proposal to develop a national list of everyone who has ever
been involuntarily committed to a mental hospital, which would be shared with law enforcement personnel.

These are examples of knee-jerk, ill-informed, short-sighted "solutions." Eroding civil liberties will not make our community safer. Instead, it will waste precious resources that could be better spent on solving the problem. Lists such as the one the governor has ordered and the one proposed on the Hill would have
the following unintended negative consequences:

• Such a national list would include the names of millions of people whose mental health history does not involve violence.
• The possibility of ending up on the list would drive people away from mental health services.
• There is a great likelihood that the list would become public and expose private health care information.
• The list would inevitably lead to further stigma and discrimination (for example, in renting an apartment or applying for a job).

Instead, a thoughtful approach to the real problems exposed by the tragedy can lead us toward a future in which complex problems have complex but workable solutions. Some facts:

• Research shows that people diagnosed with mental illnesses are no more violent than other citizens, and, in fact, are more likely to be victims of violence than perpetrators. (Steadman,
  H. et al., Arch. of General Psych., 55:393-401, 1998; Teplin, L. et al., Archives of General Psych. 62:911-921, 2005.)
• Stigma and discrimination are major obstacles for people diagnosed with mental illnesses.
• Treatment approaches that are voluntary and non-coercive are most likely to engage people, while force and coercion drives them away from treatment.

Countless individuals have recovered from mental illness and e productive citizens, aided by the right mix of services and supports, including peer-run self-help programs. Those of us who have recovered have much to share about our experiences and our knowledge about what is helpful and what is not. In the aftermath of this tragedy, we have an opportunity to work together to insure that people get effective mental health care that responds to their individual needs.

The President's New Freedom Commission on Mental Health (2003) called for major changes in our nation's mental health system so that it could better meet the needs of individuals and communities. The Commission recommended that the mental health system be consumer- and family-driven and ensure that everyone diagnosed with a mental illness has a chance to recover and become a full participant in society. It is a disgrace that the recommendations in the Commission's Report, which are supported by
many national mental health organizations, have not been implemented. There continues to be a lack of voluntary, accessible, affordable, culturally appropriate mental health services and supports across the United States. We need to invest in such programs and services, which have a proven track record in
helping people recover.

A transformed mental health system would not let people fall through the cracks. It would focus on programs that promote wellness, recovery and resiliency. People who have psychiatric histories would be included in discussions concerning them just as other groups are included when decisions are made about them. Trauma such as bullying, physical and sexual abuse, exposure to violence or natural disaster, physical and emotional neglect, and general disrespect of people who appear different or odd would
be recognized as playing a major role in the development of emotional distress and the diagnosis of mental illness. Peer support and open dialogues with diverse stakeholders two of the most promising methods of engagement for people with histories of trauma, emotional distress, or mental illness would be widely practiced.

Lastly, there would be "nothing about us without us": We who have recovered from mental illness would be consulted by the media and others when mental health topics are in the public policy arena. We can provide a broader understanding of the issues involved and offer positive solutions. We also can offer information about self-help/advocacy organizations we have developed around the country and about the active role we are playing in transforming the mental health system. Allowing others to speak "for" us perpetuates the myth that we are unable to represent our own interests.

For more information about the National Coalition of Mental Health Consumer/Survivor Organizations or for recommendations addressed to young adults, the media and the academic community following the Virginia Tech tragedy, go to www.ncmhr.org.

Source: Coalition of Mental Health Consumer/Survivor Organizations; and National Empowerment Center

This article also published at American Association of People with Disabilities 

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