Provided by David Satcher, M.D., Ph.D.
Surgeon General of the United States of America
Chapter 2
Overview of Consumer and Family Movements
Accomplishments of Consumer Organizations
Consumer organizations have had measurable impact on mental
health services, legislation, and research. One of their greatest contributions
has been the organization and proliferation of self-help groups and their impact
on the lives of thousands of consumers of mental health services. In 1993, a
collaborative survey found that 46 state mental health departments funded 567
self-help groups and agencies for persons with mental disabilities and their
family members (National Association of State Mental Health Program Directors,
1993). A nationwide directory lists all 50 states and the District of Columbia
as having 235 different mental health consumer organizations (South Carolina
SHARE, 1995).
On a systems level, the consumer movement has substantially influenced mental
health policy to tailor services to consumer needs. This influence is described
by consumers and researchers as “empowerment.” A concept from the social
sciences, empowerment has come to be defined by mental health researchers as
“gaining control over one’s life in influencing the organizational and societal
structures in which one lives” (Segal et al., 1995).
Consumers are now involved in all aspects of the planning, delivery, and
evaluation of mental health services, and in the protection of individual
rights. One prominent example is the passage of Public Law 102-321, which
established mental health planning councils in every state. Planning councils
are required to have membership from consumers and families. Having a planning
council so constituted is required for the receipt of Federal block grant funds
for mental health services. Other Federal legislation required the establishment
of protection and advocacy agencies for patients’ rights in every state (Chamberlin
& Rogers, 1990; Lefley, 1996).
Another significant development has been the establishment of offices of
consumer affairs in many state mental health authorities. Offices of consumer
affairs are generally staffed by consumers to support consumer empowerment and
self-help in their particular states. A recent survey of state mental health
authorities identified 27 states as having paid positions for consumers in
central offices (Geller et al., 1998). In 1995, the Federal Center for Mental
Health Services hired its first consumer affairs specialist.
The consumer movement also has had a substantial influence on increasing the
utilization of consumers as employees in the traditional mental health system,
as well as in other human service agencies (Specht, 1988; U.S. Department of
Education, 1990; Schlageter, 1990; Interagency Council on the Homeless, 1991).
Consumers are being hired at all levels in the mental health system, ranging
from case manager aides to management positions in national advocacy
organizations, as well as state and Federal governmental agencies.
Finally, consumers continue to be involved in research in several ways: as
participants of clinical research; as respondents who are asked questions about
conditions in their life; as partners in some aspect of the planning, designing,
and conducting of the research project with professional researchers in control;
and as independent researchers who conduct, analyze the data, and publish the
results of the research project (Campbell et al., 1993). The past decade has
witnessed the blossoming of a vibrant consumer research agenda and the growing
belief that consumer involvement in research and evaluation holds great promise
for system reform, quality improvement, and outcome measurement (Campbell et
al., 1993; Campbell, 1997). In an effort to enhance the active role of consumers
and others in the research process, the National Institute of Mental Health is
developing a systematic means of including public participants in the initial
review of grant applications in the areas of clinical treatment and services
research. This innovation follows up on a recommendation made by the Institute
of Medicine and Committee for the Study of the Future of Public Health (1988).
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