History of Consumer-Operated Services in the United States

By Deborah Potter, MA PhD candidate; Project Director at HSRI ©

There is a relatively long and complex history of consumer-operated mental health services in the United States and elsewhere.  As a result, a variety of programs, run by consumers/survivors/ex-patients[1], now exists. In order to understand the current constellation of mental health programs run by consumers/survivors, it is helpful to recount some of the earlier influences and seminal events.

Some of the earliest influences on consumer-operated mental health services in the United States can be traced back to the 1970’s.  First the effects of deinstutionalization from the release of thousands of individuals previously hospitalized in psychiatric hospitals, which had begun in the 1950’s, were now being felt much more acutely.  Public policies by then had proven inadequate to address the pressing housing and employment needs of those who had previously been institutionalized.  The pressing need for community-based psychiatric services was readily apparent.

In addition, in the 1970’s, the public began to hear from consumers/survivors about the negative experiences they had within the traditional mental health system.  Movies such as “One Flew Over the Cuckoo’s Nest” and “I Never Promised You A Rose Garden” were popular.   Publishers also reprinted previously published work by Clifford Beers (1908 “A Mind That Found Itself”) and issued new publications which would go on to become classics in the field, such as Judi Chamberlin’s 1978, “On Our Own: Patient-Controlled Alternatives to the Mental Health System”. 

In addition, theoretical bases for critiques of the mental health system were articulated by those in the anti-psychiatry movement (e.g. Thomas Szasz and R.D. Laing).  Articles and books by such authors were popular among college students and others, and many consumers/survivors identified allies among those in the anti-psychiatry cadre.

A fourth factor which strengthened the voice and message of consumer/survivors was the prominence of a variety of civil rights issues in the 1960s and 1970’s.  The emphasis which many black activists, feminists, and others active in civil rights placed on self-help and empowerment resonated with consumers/survivors. Consumer-run mental health support groups were a natural outgrowth and these groups developed their own philosophies, political agendas, and became recognized as distinct entities within the expanding civil rights arena.  Self-help and advocacy were cornerstones for the earliest consumer-run efforts in this country

Different grassroots consumer/survivor groups such as the Insane Liberation Front were formed, initially in cities on the east and west coasts, and often met in individuals’ living rooms or basements in churches.  The publication of a “how-to” book by former patients explaining how to form self-help groups (“Reaching Across” by Zinman et al, 1987) fueled the growth of such groups and helped position consumer-operated groups as alternatives (not adjuncts) to treatment within the traditional mental health system.  Consumer/survivor groups provided peer support, education, and advocacy and developed more formal means of disseminating information through newsletters (e.g. Madness Network News).  Visibility and networking with like-minded individuals and organizations was increased through community- advocacy.  The International Conference on Human Rights and Against Psychiatric Oppression, held annually beginning in 1973, also provided a venue for consumers and survivors to organize. 

As a result of these diverse and co-occurring social forces, a variety of consumer/survivor groups emerged.  While the initial groups articulated more radical stances, overtime more moderate viewpoints were represented by groups such as GROW which focused less on advocacy and emphasized peer-support.  Therefore, by 1985 several types of consumer/survivor groups were visible.  Some groups opposed all forms of involuntary treatment and sought to abolish the mental health service system.  Others, while critical of it, sought to reform the system.  Still others saw themselves as partners with the traditional mental health system.  Some of these same differences remain among consumer-operated programs.  Yet, over time and across issues, what once may have been clear-cut divisions have become less static, and groups/ individuals with differences on certain issues may collaborate when and where they can.  Furthermore, the consumer/survivor movement has a history of questioning labels and therefore any classification of consumer/survivors should be used with great care.

As consumer/survivor-operated groups have grown and matured, the 1980’s and 1990’s saw more formal peer-run programs develop. While peer-led mental health services once may have been synonymous with informal grass-roots efforts, this was no longer true.  Nationwide groups, such as the National Association for Rights Protection and Advocacy (NARPA), were formed.  In addition, consumer/survivor-operated services have expanded to include a range of groups for family members, such as the Nationally Alliance for the Mentally Ill (known as NAMI) first established in 1979.   

Furthermore, beginning in the late 1990’s, with the advent of the internet and increased use of electronic communication, peer-led efforts in mental health services have multiplied and spread more rapidly than they might otherwise have done.  There are many consumer-run websites, bulletin boards, chat rooms and listservs which meet the needs and specific interests of consumers/survivors.

Consumer/survivor –operated programs have had a significant impact on the delivery of mental health services in this country.  The central values of consumer-operated services (empowerment, choice, and to a growing extent, self-determination) now are recognized within the traditional mental health system.  At a systems level, consumers/survivors have a formal and recognized voice in planning, implementation, and research.  There is an established consumer/survivor presence on national policy boards/organizations (e.g. National Advisory Board at CMHS) and a mandated presence of consumers in planning, delivery and evaluation of mental health programs.  Many states have established offices of consumer affairs within their mental health authority/agency.  As a result, not only do consumers/survivors run their own programs, but there has been an increase in the number of consumers/survivors hired as employees within traditional mental health programs and agencies.  Consumers/survivors also have a recognized role, not only in participating in research, but also in designing, conducting, and publishing research.  

[1] While some prefer to call themselves “consumers”, others use the term “survivors”, “ex-patients”, “clients”, “inmates”, “psychiatrically labeled”, “primary consumers”, “users”, or “recipients.”  This brief uses the commonly-used term “consumers/survivors” to include all of these designations.

Below you will find links to internet-based resources on consumer-operated mental health programs in the following areas:

 

Contact information for consumer-operated organizations and programs

Consumer Empowerment and Leadership Training – www.mhav.org/celt.html  or www.contac.org

Consumer Organization and Networking Technical Assistance Center – www.contac.org

Mental Health Association of Southeastern Pennsylvania – www.mhasp.org

National Association for Rights Protection and Advocacy – www.narpa.org

National Empowerment Center – www.power2u.org

National Mental Health Consumers’ Self-Help Clearinghouse – www.mhselfhelp.org

  

Consumer-directed on-line/electronic resources (websites, listservs, chat rooms)

Advocacy Unlimited – www.mindlink.org

Agoraphobics Building Independent Lives – www.anxietysupport.org

CHARG Resource Center – www.charg.org

ACT-MAD – www.actmad.net/nuke/

Depressed Anonymous – www.depressedanon.com

Healing Touch (self-injury) – www.healthyplace.com/Communities/Self_Injury/healingtouch/ 

MadNation – www.madnation.org

People Who – www.peoplewho.org 

Support Coalition International: Human Rights and Psychiatry – www.MindFreedom.com

 

A few of the many sites which contain links to consumer-directed on-line/electronic resources:

Center for Mental Health Services – Consumer/Survivor related links: www.mentalhealth.samhsa.gov/consumersurvivor/links.asp

ERIC Clearinghouse on Disabilities and Gifted Education: ericec.org/mental.html

National Empowerment Center: www.power2u.org/dont.html 

 

Other resources and organizations (with significant consumer input)

American Self-Help Clearinghouse – www.mentalhelp.net/selfhelp

Also see summary of peer support studies: www.mentalhelp.net/selfhelp/selfhelp.php?id=864

Consumer Operated Services Program – updated study results www.cstprogram.org

International Association of Psychosocial Rehabilitation Services (IAPSRS) – www.iapsrs.org

National Association of Consumer/Survivor Mental Health Administrators (NAC/SMHA) –  www.nasmhpd.org/consurdiv.htm 

National Association of Protection and Advocacy Systems, Inc (NAPAS) – www.protecitonandadvocacy.com

National Association of State Mental Health Program Directors (NASMHPD) – www.nasmhpd.org

NAMI (Consumer-supporter TA) --- www.nami.org 

National Health Law Program – www.healthlaw.org

National Mental Health Association (Consumer-supporter TA) – www.nmha.org

National Research and Training Center of the University of Illinois at Chicago

(Workgroup on self-determination and empowerment: www.psych.uic.edu/UICNRTC/uicnrtc-sdbib.pdf ; also see www.Psych.uic.edu.UICNRTC/self-determination.htm  

Recovery Tools – www.recoverytools.org

Substance Abuse and Mental Health Services Administration (SAMHSA) www.samhsa.gov

Technical Assistance Collaborative – www.tacinc.org  

 

Selected documents about consumer-operated services available on-line: 

Beaulaurier,R.L., Erwin, N., Mirsky, J., and Teague, GB. 2003.  “Evidence-based practice in consumer-operated services: Avoiding the landmines.”  Paper presented at the 13th Anniversary Conference on State Mental Health Agency Services Research, Program Evaluation and Policy (The National Association of State Mental Health Program Directors Research Institute Inc. (NRI.)) Available online at  www.nri-inc.org/conference/Conf03/Beaulaurier.htm   

Brown, N.B., Fox R.S., and Blyler, C.R.  2001.  “A report on the Consumer and Consumer Supporter National Technical Assistance Centers”   Available online- at http://tecathsri.org/consult/tacs-2001-report.pdf .

Campbell, J. 1998.  “Involuntary mental health interventions and coercive practices in changing mental health care delivery systems: the consumer perspective.”  Available online at www.networksplus.net/fhp/madnation/campbell.htm.

Campbell, J. and Leaver J.  2003.  Emerging New Practices in Organized Peer Support:   Report from NTAC’s National Experts Meeting, March 17-18, 2003. Available online at www.nasmhpd.org/ntac/reports/peersupportpracticesfinal.pdf.

Marzilli, A.  2002.  “Controversy surrounds evidence-based practices.”  The Key, Winter.   Available online at www.mhelfhelp.org/pubs/key/wi02/evidence.html .

Salzer, M.  2002.  “Best Practice Guidelines for Consumer-Delivered Services.”  Available online at http://www.bhrm.org/guidelines/salzer.pdf .

Van Tosh, L. and Del Vecchio, P.   2000. Consumer-Operated Self-help Programs: A Technical Report. U.S. Center for Mental Health Services, Rockville, MD. Available online at ftp://ftp.health.org/pub/ken/pdf/SMA01-3510/SMA01-3510.pdf