Guidelines for Consumer and Family Participation

SAMHSA is committed to fostering consumer and family involvement in substance abuse and mental health policy and program development across the country. A key component of that commitment is involvement of consumers and family members in the design, development and implementation of projects funded through SAMHSA’s grant programs. The following guidelines are intended to promote consumer and family participation in SAMHSA grant programs.

In general, applicant organizations should have experience and a documented history of positive program involvement by recipients of mental health or substance abuse services and their family members. This involvement should be meaningful and span all aspects of the organization's activities as described below:

Program Mission —The organization's mission should reflect the value of involving consumers and family members in order to improve outcomes.

Program Planning —Consumers and family members should be involved in substantial numbers in the conceptualization of initiatives, including identification of community needs, goals and objectives; identification of innovative approaches to address those needs; and development of budgets to be submitted with applications. Approaches should incorporate peer support methods.

Training and Staffing— Organization staff should have substantive training in, and be familiar with, consumer and family-related issues. Attention should be placed on staffing the initiative with people who are themselves consumers or family members. Such staff should be paid commensurate with their work and in parity with other staff.

Informed Consent— Recipients of project services should be fully informed of the benefits and risks of services and make a voluntary decision, without threats or coercion, to receive or reject services at any time. SAMHSA Confidentiality and Participant Protection requirements are detailed in SAMHSA GFAs. These requirements and must be addressed in SAMHSA grant applications and adhered to by SAMHSA grantees.

Rights Protection —Consumer and family members must be fully informed of all of their rights including those related to information disclosure, choice of providers and plans, access to emergency services, participation in treatment decisions, respect and non-discrimination, confidentiality of healthcare information, complaints and appeals, and consumer responsibilities.

Program Administration, Governance, and Policy Determination— Efforts should be made to hire consumers and family members in key management roles to provide project oversight and guidance. Consumers and family members should sit on all Boards of Directors, Steering Committees and Advisory bodies in meaningful numbers. Such members should be fully trained and compensated for their activities.

Program Evaluation— Consumers and family members should be integrally involved in designing and carrying out all research and program evaluation activities. These activities include: determining research questions, adapting/selecting data collection instruments and methodologies, conducting surveys, analyzing data, and writing/submitting journal articles.

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