Substance Abuse & Mental Health Services Administration

CMHS Consumer Affairs E-News
February 9, 2006, Vol. 06-12

Consumer/Survivor Subcommittee Seeks Comments on Draft Definition of "Consumer-Driven" Care

The Substance Abuse and Mental Health Administration (SAMHSA) has produced a Federal Action Agenda for the transformation of the mental health system. The Action Agenda calls for a mental health system that is consumer-driven with the goal of recovery. The Center for Mental Health Services (CMHS) National Advisory Council's Subcommittee on Consumer/Survivor Issues has initiated an activity to help develop a draft definition of consumer-driven care (which appears below and is also available on the SAMHSA Web site at http://www.mentalhealth.samhsa.gov/cmhs/AdvisoryCouncil/consumerdrivenDraft.asp ) and seeks your comments. Please send your comments to chris.marshall@samhsa.hhs.gov.

Draft

Principles of Consumer-Driven Care

These principles are stated in the affirmative to set forth an ideal to which systems should strive rather than being indicative of steps to be taken toward a positive direction.
Consumer-Driven Definition
Consumer-driven1 means consumers have the primary decision-making role regarding the mental health and related care that is offered and the care received. In addition, the consumer voice is paramount in determining all aspects of care for consumers in the community, state, and nation. The consumer voice must be present and fully represented both collectively and individually with regard to all aspects of service delivery from planning to implementation to evaluation to research to defining and determining outcomes. This includes, but is not limited to the policies and procedures governing systems of care, choosing supports, services, and providers; setting goals; designing and implementing programs; monitoring outcomes; and determining the effectiveness of all efforts to promote mental health and wellness.

The term "consumer" as used in this document is used for the sake of brevity and should be understood to mean those people who are receiving or have received mental health services either voluntarily or involuntarily and in that context, "consumer" is intended to include those who refer to themselves as survivors, ex-patients, ex-inmates, clients, users or other similar terms. Mental health services includes those services, including vocational rehabilitation, employment services, housing services, social security and other services that are designed to be supportive of a person living their life to the fullest in the community of their choice.

Guiding Principles
1. When communities, states, or the federal government design policies
affecting the mental health care for consumers, the following principles
must be honored:

a. Consumers are the primary authors and decision-makers in
developing policies affecting local, state, and national mental health
service delivery. All meetings and preliminary discussions about the
scope of policy design efforts involve consumers. Consumers
outnumber government staff, contractors and secondary stakeholders
(non-recipients of mental health services) and are the first and
primary stakeholder.

b. As primary authors and decision-makers, consumers are
compensated with comparable wages paid to other staff and service
providers. Public entities lead the way in hiring consumers thereby
setting an example for private business.

c. Input from consumers is meaningful beyond mere tokenism. Internal
meetings including only government employees and providers or
their contractors, and excluding representative consumers are
discrimination and contrary to the ideals that define consumer-driven.

2. Consumers are given accurate, understandable, and complete
information necessary to make informed, consensual choices regarding
services and/or supports. Information will be provided in a language and
method/format the consumer is able to understand.

3. Consumers are organized to collectively use their knowledge and skills as
an engine for systems transformation.

4. People who provide services and/or supports embrace the concept of
sharing information, decision-making authority and responsibility for
outcomes with consumers. Community organizations, states, and the
federal government ensure that providers are trained by consumers on
culturally competent shared decision-making, and consumer culture.

5. Providers take the initiative to change practices from provider-driven to
consumer-driven care and support the new role of consumer-provider
partnership. Community organizations, states, and the federal
government ensure that providers are trained by consumers on the
meaning and benefits of consumer-driven care.

6. Administrators allocate resources, staff, training, and support resources
to make consumer-driven practices work at the point where services and
supports are delivered to consumers.

7. Consumers and consumer-run organizations engage in culturally
competent peer support activities to reduce isolation and strengthen the
consumer voice, with targeted outreach to include the voice of consumers
in diverse ethnic and special population communities.

8. Consumers are treated with dignity and respect and within the full
contexts of their lives, including awareness and sensitivity to culture and
cultural worldviews, language, sexual orientation, housing and
employment preferences, social and economic status, religious
preferences, political opinions and other life choices.

9. Commitment to cultural competence is evident in all consumer-driven
strategic planning, policy and program development.

10. Services are culturally and linguistically appropriate, with sensitivity to
historical, cultural and religious experiences of diverse populations.

11. Programs eliminate disparities for cultural, racial and ethnic consumer
populations.

12. Services to cultural, racial and ethnic consumer groups include and
value the concept of inter-relational approaches that may embrace
participation of extended family, tribes and other natural self
-determined definitions of community inclusiveness.

13. Consumer driven approaches recognize the diversity of beliefs and
values held by different racial/ethnic and cultural communities.
Recognizing different world views of the concepts of interdependence
vs. independence, self-sufficient, self-determined vs. person in their
community, and embrace the diversity of values in definition of
consumer-driven and self-determination.

14. Prejudice, racism, discrimination, and stigma are not accepted at any
level.

15. Consumers are entitled to the full enumeration of rights as listed in the
Universal Declaration of Human Rights.

16. Consumers lead, control, exercise choice over, and determine their own
path of recovery by maximizing autonomy, self-agency, and
independence.

Characteristics of Consumer-Driven Care

1. Consumers' experiences, their visions and goals, their perceptions of
strengths and needs, and their guidance about what makes them
comfortable, steers decision making about all aspects of service and
system design, operation, research and evaluation.

2. Meetings and service provision occur in culturally and linguistically
competent environments. Consumers' voices are heard and valued,
everyone is respected and trusted, and it is safe for everyone to speak
honestly.

3. Administrators and staff actively demonstrate their partnerships with all
consumers by sharing power, resources, authority, and control with
them.

4. Consumers have full access to useful, understandable information and
data in their primary language, as well as sound professional expertise
so they have good information to make decisions.
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The Center for Mental Health Services is a component of the Substance Abuse and Mental Health Services Administration, United States Department of Health and Human Services.