Guidelines for Consumer and Family Participation

SAMHSA is committed to fostering the involvement of consumers and their families in developing policies and programs related to mental and/or substance use disorders. Encouraging consumer (mental and/or substance use treatment recipients) and family participation in design, development, and implementation of projects funded through SAMHSA's grant programs is a key part of that commitment. The guidelines that follow can be used by applicant organizations to promote consumer and family participation in SAMHSA grant programs.

Applicant organizations should have experience and a documented history of positive consumer and family program involvement. The involvement should be meaningful and span all aspects of organizational activities as the following guidelines describe.

Program Mission

Your organization's mission should reflect the value of involving consumers and family members to improve outcomes.

Program Planning

Involve a substantial number of consumers and family members in developing initiatives, including:

• Identifying community needs, goals, and objectives
• Identifying innovative approaches to address those needs
• Developing budgets to submit with applications

Approaches should include peer support methods.

Training and Staffing

Organization staff should have training and familiarity with consumer and family-related issues. Staff the initiative with people who are themselves consumers or family members. Base the payment to the consumer and family member staff on their work, consistent with other staff.

Informed Consent

Recipients of project services should be fully informed of the benefits and risks of services. They should 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 Guidance for Applicants. These requirements must be addressed in SAMHSA grant applications and adhered to by SAMHSA grantees.

Rights Protection

Fully inform consumers and family members 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
• Consumer responsibilities

Program Administration, Governance, and Policy Decisions

Make an effort to hire consumers and family members in key management roles that allow them to provide project oversight and guidance. In meaningful numbers, consumers and family members should sit on all boards of directors, steering committees, and advisory bodies. These members should be fully trained and compensated for their activities.

Program Evaluation

Consumers and family members should be closely 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
• Writing/submitting journal articles