Participation Guidelines for Individuals with Lived Experience and Family
SAMHSA provides these guidelines to encourage applicant organizations to involve individuals with lived experience of mental and/or substance use disorders and families in grant proposal development, implementation and review.
SAMHSA is committed to encouraging the involvement of individuals in recovery and families to support development of policies and programs related to mental and/or substance use disorders. Maintaining individuals (mental and/or substance use program 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 should be used by applicant organizations to promote individual and family participation in SAMHSA grant programs.
Applicant organizations should have experience and a documented history of their contribution. The involvement should be meaningful and span all aspects of organizational activities as the following guidelines describe.
Your organization's mission should reflect the value of involving persons with lived experience and family members to improve outcomes.
Involve a substantial number of persons with lived experience 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 service methods.
Training and Staffing
The initiative should include individuals with lived experience and/or family members as staff. Organizational staff should have training and familiarity with peer focused and family-related issues.
Recipients of project services should be fully informed of the benefits and risks of services. They will 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 Notice of Funding Availability. These requirements must be addressed in SAMHSA grant applications and adhered to by SAMHSA grantees.
Fully inform individuals 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
- Participant responsibilities
Program Administration, Governance, and Policy Decisions
Make an effort to hire persons with lived experience and family members in key management roles that allow them to provide project oversight and guidance. In meaningful numbers, these individuals should sit on all boards of directors, steering committees, and advisory bodies. These members should be fully trained and compensated for their activities.
Persons with lived experience and/or their family members should be closely involved in designing and carrying out all data and program evaluation activities. These activities include:
- Determining research questions
- Adapting/selecting data collection instruments and methodologies
- Conducting surveys and other data collection activities
- Analyzing data
- Writing/submitting journal articles