This letter we (McCubbin, Weitz, Spindel, Cohen, Dallaire, Morin) sent to the U.S. Presidential Consultation regarding availability of community supports for clients of the mental health system.

30 November 2001

To: New Freedom Initiative Group <newfreedom@cms.hhs.gov>

Department of Health and Human Services

U.S.A.

SUBMISSION FOR THE PRESIDENT'S CONSULTATION

REGARDING COMMUNITY MENTAL HEALTH SERVICES

Dear Madams and Sirs,

The undersigned are Canadian (one living in the U.S.) researchers, advocates, and/or professionals within the mental health field, who have collaborated together in various ways. Michael McCubbin is a policy scientist and population health researcher, Saskatchewan Population Health and Evaluation Research Unit (associated with the universities of Regina and Saskatchewan) and a Lecturer at University of Regina. Don Weitz is a prominent antipsychiatry and human rights activist, and journalist. Patricia Spindel is a sociologist, Professor of Social Services and Founder of the Centre for Progressive Social Work Education, Humber College, Toronto. David Cohen is Professor of Social Work, Florida International University, Miami. Bernadette Dallaire is a sociologist and Assistant Professor, Faculty of Kinesiology and Health Studies, University of Regina, Saskatchewan. Paul Morin is a sociologist and coordinator of mental health client advocacy services in Montreal. We have all published articles regarding the mental health system or mental health intervention in scientific and/or professional peer
reviewed journals, some of which are listed in the appendix.

We would like to express our views as to not only the directions that reform in the mental health system should take, toward enhancing community mental health services, but also regarding the barriers that have consistently stymied attempts at meaningful reform for a very long time. Many of the statements below are documented in the appendix.

With the exception of the U.S. "managed care" system, our community mental health programs, in all their diversity, are similar to yours. We have studied both Canadian and American systems, and find that the barriers to implementing intensive support programs which can create a context for psychiatrically labelled people to empower themselves are quite similar in both countries.

The bulk of the scientific evidence (we are not referring to multiply repeated but poorly documented claims, like those supporting PACT - programs for assertive community treatment - for example), and importantly, the views of persons who receive or have received mental health services (note that the views of family lobby groups like NAMI diverge significantly from psychiatric survivor views), suggest the following:

PSYCHIATRIC SURVIVOR NEEDS

People with mental health problems need a full continuum of basic services and supports to promote their recovery:

PSYCHIATRIC SURVIVOR POWERLESSNESS

Many psychiatric survivors have experienced great oppression and abuse in childhood and/or later life which is a major contributing factor to emotional/psychological difficulties and, notably, concomitant internalized oppression, decreased sense of control, increased powerlessness, and increased dependency. Traditionally, mental health systems, treatments and services have tended to reinforce these negative impacts of life-long oppression. Most frequently pharmaceutical treatments like neuroleptics (or widespread regimen of polypharmacy which are virtually unstudied or unevaluated in the scientific literature) have the impact of blunting emotion, cognition, energy, etc.

While for some these drug treatments are seemingly effective insofar as visible symptoms are reduced, in part they actually do this by significantly reinforcing psychiatric survivor passivity, sense of powerlessness, and long term dependence upon the mental health system. Clients typically report more concern with negative than positive symptoms, yet critical analysis of the literature supporting the efficacy of drug treatments shows that benefits are systematically exaggerated and side effects systematically ignored: as shown by a recent Cochrane Collaboration study with respect to neuroleptics (Thornley and Adams, 1998), which worsen negative symptoms, and a very recent meta-analysis in the Canadian Medical Association Journal, with respect to methylphenidate treatment of "ADHD" (Schachter et al., 2001). The negative impacts of pharmaceutical treatments have their counterparts in other somatic "treatments" like electroshock and psychosurgery (Breggin, 1997). Clients could be helped by therapists or counsellors (not just biomedical professionals) of their choosing; such services
should be covered under Medicaid.

HOSPITAL CONTROL OF RESOURCES AND PACT

Most money in "mental health services" is tied up in hospitals and controlled by physicians. The major barrier to setting up adequate community supports and services is the fact of hospital control over resources and program decisions. Today, many or most PACT programs are run by hospitals and function primarily to coercively administer medical treatments - to the detriment of psychiatric survivor choice and empowerment and the satisfaction of the wide variety of very concrete, non-medical, needs of the psychiatric survivors. PACT teams may be "in" the community, but they are neither of the community nor a true model of community care and support (as is the PACE - personal assistance in community existence - program of the National Empowerment Center; Fisher & Ahern, 2000). In the vast majority of cases PACT programs are simply extensions of the hospital institutional walls and biomedical orientation into the community.

More generally, heightened biomedicalization often leads to increased use of institutions and a focus on coercion and compliance. This increases dependency and segregation, which leads to longer and shorter term costs (i.e., PACT is more expensive than other types of case management and has not proven to be more effective in terms of empowerment, psychosocial functioning, and community participation) (Gomory, 1999 & 2001; Spindel & Nugent, 2000 & 2001).

STYMIED REFORMS AND BIOMEDICALIZATION OF MENTAL HEALTH PROBLEMS

Dating back at least to President Kennedy's Community Mental Health Centers Act of 1963, major government efforts had been made in the U.S. to establish community mental health systems. These reform efforts stressed (even if the terminology came later) the necessity to help integrate psychiatric survivors into society and to aid, via empowering processes, in psychiatric survivor recovery. This did not, could not, and does not just mean reduction in "symptoms" but, more importantly, means improved social functioning, better quality of life, and a greater sense of satisfaction and belonging.

Since reform was initiated it has been consistently stymied and sidetracked - sometimes by initiatives which become very fashionable and masquerade as psychosocial community support programs, like PACT. By far the major reason for reform failure is the fact that hospital and medically dominated agencies and institutions controlled the purse strings, prevented reallocation to community supports, and resisted permitting community agencies from operating independently from the traditional institutions. As long as hospitals and physicians run the system, we will never have adequate systems of empowering community support and service programs that aim to address the psychiatric survivors' own needs.

It has been difficult to rally public opinion and subsequently policy toward a reduction in biomedical control of power, programs and resources given the widespread biomedical thinking reproduced and reinforced by mainstream media: apart from propagandizing biomedical interpretations of distressed or distressing behaviour, they promote the violent mental patient myth-stereotype, and they systematically exclude feature stories of survivor views-opinions and exploration of non-medical alternatives (eg., self-help and advocacy groups, affordable supportive housing, survivor action and study conferences).

These barriers are increasingly evident today: while decades ago a number of physicians, including psychiatrists, were enthusiastic advocates for such a community system that was not centered around medical treatments (notably, for example, Dr. Loren Mosher of the National Institutes of Health) the evidence is now strong that medical practice and research is becoming severely compromised by pharmaceutical company funding - as demonstrated by the recent spate of editorials in medical journals decrying, as one titled it, the "harrassment" of medicine by commercial pharmaceutical company interests (Hailey, 2000; see Cohen et al., 2001; Lehrman and Sharav, 1997; Wazana, 2000).

The psychiatric profession today essentially serves one and only one function: social control via the writing of prescriptions for psychoactive drugs. Psychiatric drugs such as the neuroleptics do not cure and are not meant to cure or relieve disease but to disable and disempower through their unique disabling effects (Breggin, 1997; Gelman, 1999). The psychiatric and other health professions (including psychology and social work) are increasingly becoming biomedicalized.

Hence, firstly mental health systems should not be run by physicians, and secondly they should not be controlled by the professions - but rather by psychiatric survivors themselves. Only then will it be possible to design and implement the kinds of community mental health systems that psychiatric survivors themselves say they need and countless experts since the 1960s have described as essential for the social integration and recovery of psychosocially distressed or distressing persons. Secondly, psychiatric survivors need to be given the resources and training to be able to participate effectively in helping to deliver and run community mental health services and their governing bodies. Thirdly, action needs to be taken to enable psychiatric survivors to be heard at least as much as the pharmaceutical companies, whose direct and indirect contributions to professions and their associations and to the most powerful lobby groups - who do not represent survivor interests - are enabling those companies to more or less dictate the direction of the mental health system toward profits as opposed to toward
meeting the needs of the people the system is supposed to serve.

Yours sincerely,

 

Michael McCubbin
Regina, Saskatchewan, Canada

Don Weitz
Toronto, Canada

Patricia Spindel
Toronto, Canada

David Cohen
Miami, Florida (formerly Montreal, Canada)

Bernadette Dallaire
Regina, Saskatchewan, Canada

Paul Morin
Montreal, Quebec, Canada

 

APPENDIX: SUPPORTING DOCUMENTS (several are freely available on-line)

 

Bassman, R. (2001). Whose reality is it anyway? Consumers/survivors/ex-patients can speak for themselves. Journal of Humanistic Psychology, 41(4), 11-35.

Breggin, P. (1997). Brain-disabling treatments in psychiatry: Drugs, electroshock, and the role of the FDA. New York: Springer.

Breggin, P., and Cohen, D. (1999). Your drug may be your problem: How and why to stop taking psychiatric medications. Reading, MA: Perseus.

Burstow, B., and Weitz, D. (Eds.). (1988). Shrink resistant: The struggle against psychiatry in Canada. Vancouver: New Star Books.

Cohen, D. (Ed.). (1990). Challenging the therapeutic state: Critical perspectives on psychiatry and the mental health system (special issue) Journal of Mind and Behavior, 11(3/4).

Cohen, D. (Ed.). (1994). Challenging the therapeutic state, part two: Further disquisitions on the mental health system. Journal of Mind and Behavior, 15(1/2).

Cohen, D. (1997). A critique of the use of neuroleptic drugs in psychiatry. In S. Fisher and R.P. Greenberg (Eds.), From placebo to panacea: Putting psychiatric drugs to the test. New York: Wiley.

Cohen, D., McCubbin, M., Collin, J., Pérodeau, G. (2001). Medications as social phenomena. Health, 5, 441-469.

Conrad, P. (1992). Medicalization and social control. Annual Review of Sociology, 18, 209-232.

Dallaire, B., McCubbin, M., Morin, P., & Cohen D. (2000). Civil commitment due to mental illness and dangerousness: The union of law and psychiatry within a treatment-control system. Sociology of Health and Illness, 22, 679-699. Abstract and ordering info. available HTTP: http://www.blackwellpublishers.co.uk/asp/journal.asp?ref=0141-9889&src=ard&aid=226&iid=5&vid=22

Fisher, D.B., & Ahern, L. (2000). Personal Assistance in Community Existence (PACE): An alternative to PACT. Ethical Human Sciences and Services, 2, 87-92.

Funk, W. (1999). What difference does it make? (The journey of a soul survivor). Cranbrook, B.C.: Wild Flower.

Gelman, S. (1999). Medicating schizophrenia: A history. New Brunswick, NJ: Rutgers University Press.

Gomory, T. (1999). Programs of assertive community treatment (PACT): A critical review. Ethical Human Sciences and Services, 1, 147-163.

Gomory, T. (2001). A critique of the effectiveness of assertive community treatment. Psychiatric Services, 52(10), 1394-1397.

Hailey, D. (2000). Scientific harassment by drug companies: Time to stop. Canadian Medical Association Journal, 162, 212-213.

Jacobs, D.J., and Cohen, D. (1999). What is really known about psychological alterations produced by psychiatric drugs? International Journal of Risk and Safety in Medicine, 12, 37-47.

Lehrman, N. S., & Sharav, V. H. (1997). Ethical problems in psychiatric research. Journal of Mental Health Administration, 24, 227-250.

Lurie, S., McCubbin, M., & Dallaire, B.(Eds.). (forthcoming, 2002). Innovation in community mental health: International perspectives [special issue]. Canadian Journal of Community Mental Health, 21(2).

McCubbin, M. (1994). Deinstitutionalization: The illusion of disillusion. Journal of Mind and Behavior, 15, 35-53. Abstract available HTTP: http://kramer.ume.maine.edu/~jmb/jmb66.html#abstract3

McCubbin, M. (2001). Sweet words that hurt: The make-believe world of user participation, rights and voice. The Rights Tenet — Quarterly Newsletter of the National Association for Rights Protection and Advocacy (Spring/Summer, 2000), pp. 5, 8. Revised and republished in 2001 by the Academy of Psychoanalytical Arts at http://www.academyanalyticarts.org/mccub1.html (page accessed 27 Nov. 2001).

McCubbin, M., & Bostock, J. (Eds.). (2001). Power, control and health [special issue]. Journal of Community and Applied Social Psychology, 11(2). Table of contents, abstracts, and (for subscribers) texts available HTTP: http://www3.interscience.wiley.com/cgi-bin/issuetoc?ID=80503057

McCubbin, M., & Cohen, D. (1996). Extremely unbalanced: Interest divergence and power disparities between clients and psychiatry. International Journal of Law and Psychiatry, 19, 1-25.

McCubbin, M., & Cohen, D. (1999). A systemic and value-based approach to strategic reform of the mental health system. Health Care Analysis, 7, 57-77. Abstract available HTTP: http://www.wkap.nl/oasis.htm/205677

McCubbin, M., & Cohen, D. (1999). Empirical, ethical and political perspectives on the use of methylphenidate. Ethical Human Sciences and Services, 1, 81-101.

McCubbin, M., & Cohen, D. (1999, June). The rights of psychiatric survivors of the mental health system: The tight knot of power, law, and ethics. XXIVth International Congress on Law and Mental Health, Toronto. Available HTTP: http://www.oikos.org/mentalrights.htm (page accessed 27 Nov. 2001).

McCubbin, M., Cohen, D., and Dallaire, B. (2001). Obstacles à l’empowerment en travail social: Vers un changement professionnel dans les interventions en santé mentale (barriers to empowerment in social work: Toward professional change in mental health interventions). GRASP Working Papers Series, 30. Montreal: University of Montreal (GRASP). Ordering information available HTTP: http://www.grasp.umontreal.ca/WORKINGP1.htm

McCubbin, M., & Dalgard, O.S. (2000, May). Social determinants of population health: Power, powerlessness and empowerment as determinants of health and well-being. GRASP Scientific Conferences, University of Montreal. Available HTTP: http://www.mailbase.ac.uk/lists/radical-psychology-network/2000-06/0024.html (page accessed 27 Nov. 2001).

McCubbin, M., Dallaire, B., Cohen, D., & Morin, P. (1999). Should institutions that commit patients also be gatekeepers to information about civil commitment? Implications for research and policy. Radical Psychology, 1(2). Available HTTP: http://www.radpsynet.org/journal (page accessed 27 Nov. 2001).

McCubbin, M., & Weisstub, D.N. (1998, July). "Meeting the needs of the mentally ill": A case study of the "right to treatment" as legal rights discourse in the U.S.A. Presented to XXIIIrd International Congress on Law and Mental Health, Paris. Presentation version published by the Academy for the Study of the Psychoanalytic Arts (on-line archives). Available: http://www.academyanalyticarts.org/cnmccweiss.html (page accessed 27 Nov. 2001).

Mosher, L.R., & Burti, L. (1994). Community mental health: A practical guide . New York: Norton.

Risser, P. (2001). Battered and abused. Available: http://home.att.net/~PatRisser/personalinfo/book/book.html (page accessed 21 Oct. 2001).

Schachter, H.M., Pham, B., King, J., Langford, S., & Moher, D. (2001). How efficacious and safe is short-acting methylphenidate for the treatment of attention-deficit disorder in children and adolescents? A meta-analysis. Canadian Medical Association Journal, 165, 1475-1486.

Shimrat, I. (1997). Call me crazy: Stories from the Mad Movement. Vancouver: Press Gang.

Spindel, P., & Nugent, J.A. (2000). Polar opposites: empowerment philosophy and assertive community treatment (ACT). Ethical Human Sciences and Services, 2, 93-100.

Spindel, P., & Nugent, J.A. (2001). The trouble with PACT: Questioning the increasing use of assertive community treatment teams in community mental health. Available: http://www.interlog.com/~baycom/PACT.htm (page accessed 27 Nov. 2001).

Thornley, B., & Adams, C. (1998). Content and quality of 2000 controlled trials in schizophrenia over 50 years. BMJ, 317, 1181-1184.

Wazana, A. (2000). Physicians and the pharmaceutical industry: Is a gift ever just a gift? JAMA, 283, 373-380.

Weitz, D. (1997). Electroshocking elderly people: Another psychiatric abuse. Changes: International Journal of Psychology and Psychotherapy, 15(2).

Weitz, D. (1999). Who’s really dangerous? Media bias-Forced drugging-Outpatient committal. In educational package for People Against Forced Treatment (PACT), Toronto. Available HTTP: http://www.tao.ca/~pact/stopbias.htm (page accessed 27 Nov. 2001).

Weitz, D. (2000, Sept./Oct.). Fighting words - Community treatment orders and "Brian's Law". Canadian Dimension, pp. 12-13.

Authors Notes

Correspondence concerning this letter may be sent to Michael McCubbin <Michael.McCubbin@uregina.ca>, Don Weitz <dweitz@interlog.com>, Patricia Spindel <trishs@rogers.com>, David Cohen <cohenda@fiu.edu>, Bernadette Dallaire <bernadette.dallaire@uregina.ca>, Paul Morin <coll.droitmonteregie@videotron.ca>.

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