Meaningful Consumer and Family Involvement: Report out from the Consumer/Family Ad Hoc Committee to the Behavioral Health Home Working Group
“Meaningful involvement” of consumers and families in mental health system and policy development isn't just about inviting people to meetings, input, and the opportunity to respond to decisions that have already been made. Rather, it includes acknowledgement, understanding, and actions that reflect the knowledge that without the inclusion of consumers and families in these discussions and decisions, what works - and what does not - cannot be known or offered.
The following recommendations represent the synthesis of a series of discussions about how to support “meaningful consumer and family involvement” in the process of implementing, improving, and evaluating the Behavioral Health Home model. While additional work is needed, these recommendations provide an initial framework for further discussion.
Recommendations to the BHH Implementation Group
- Understand the context
People with serious mental illness and their families often experience a power imbalance in their interactions with mental health providers, policymakers, and systems. Consumers in particular are subject to involuntary commitment and restrictions in civil liberties; this has an impact on how they experience interactions with policymakers, providers, and service systems. To understand the context:
- Seek out training from consumers and families for providers, policymakers, and others on consumer/family movements.
- Provide facilitation that explicitly and concretely values diverse opinions, respects all voices, and continuously encourages and clarifies the discussion.
- Don’t expect consumers and families to become experts in policy, jargon, or bureaucracy.
- Listen for what consumers and families are saying in the language of lived experience. Apply that input towards the common goal of quality, humane, effective treatment.
- Promote and value the expertise of consumers and family members through recognition of their lived experience, thus mitigating stigma and paternalism.
- Don’t isolate the consumer/family voice: integrate into broader discussions with providers and other stakeholders.
- Time should be allocated to discuss with the full working group providers’ understanding of meaningful involvement, the value of it to their organizations and services, the questions and problems they have encountered in trying to achieve it, their successes, barriers, and their ideas for moving forward. Families and consumers should be involved in creating the agenda for this meeting.
2. Support involvement
Support meaningful involvement early and often: at the beginning, middle, and end; in planning and design, training and implementation, and ongoing quality improvement.
- Provide orientation, context, training, and resources to enable consumer and family participants to better understand the issues and participate in discussion.
- Ask about consumer and family priorities and build those issues into the agenda for meetings.
- Ask about and be prepared to address barriers to full participation such as transportation, interpreters, child care, meeting times. Look for solutions to logistical problems.
- Offer stipends, if possible.
- Create a glossary with definitions, acronyms and terms that are used in each workgroup or project.
- Provide materials in advance to allow ample time to read and understand. Allow time for clarifying questions or to do further research, especially if it is a new concept.
- Find or cultivate a champion who will lead and encourage cultural changes that embrace the value, necessity, and effectiveness of meaningful consumer and family involvement.
- Promote better understanding of the Learning Collaborative: who are the current consultants to the collaborative, how are decisions made as to what experts are brought in to train, and what information and/or treatment approaches are being taught as best practices. What are the values guiding the work of the collaborative? How are decisions made as to who participates, both as presenters/trainers, and audience?
- When training/presentations center on treatment approaches, staffing structures, etc., specific to supporting people to deal with their distress and live self-determined satisfying lives, primary recipients of services should always speak for themselves, and from that diverse knowledge base.
- People should be able to speak for themselves: For instance, provider or family organizations should not take the lead in organizing or reflecting consumer/survivor experience and expertise, even if they employ consumer/survivors in identified peer positions (although self-identified peers working within provider or family organizations should have the opportunity to offer training and presentations).
3. Cast a broad net
Meaningful consumer involvement does not rely solely on a small group of highly engaged or experienced advocates, but also draws from the larger population, supporting involvement on a number of levels and via varied channels.
- Avoid tokenism and isolation: encourage at least 2 family and/or consumer representatives.
- Avoid favoritism: no one person or organization is an expert on everything. Reach out to include those that have no affiliations.
- Offer multiple ways to participate:
- Email –especially via established consumer/family organizations and groups who have broad contacts.
- Social media, websites
- Community/local meetings, support groups, social clubs - bring the message to consumers and families where they are most comfortable.
- Focus groups, surveys
- Reach out to multiple consumer and family organizations for training, speakers, or for suggestions for consumer and family representatives.
- Actively recruit family and consumer representatives, don’t wait for them to come to you.
4. Track if it is working
- Survey consumers and families to see if they are hearing about the work and understand how they can get involved.
- Gather satisfaction/improvement feedback regularly from participants
- Identify successes and improvements that would not have happened but for meaningful consumer and family involvement.
5. Beyond the BHH Working Group:
The Ad Hoc Group discussed a number of issues that went beyond the specific charge of the BHH Working Group. The following points do not necessarily represent a consensus recommendation from the committee; rather, these points are captured here because they were raised in these discussions. While beyond the scope of the BHH Work Group, individual members of the ad hoc committee (and/or others) may want to pursue these items as part of other advocacy efforts:
- Create funded advocacy as part of Maine’s Mental Health Plan for a Consumer TA Network or a funded Community of Practice (CoP) to standardize and set guidelines for consumer involvement. Include “real” consumers as paid consultants to our TA Network or our Community of Practice; no more volunteers.
- Provide a learning collaborative for consumers and family members, driven by an agenda developed by consumers and family members, built around issues of concern to consumers and family members, and getting broad-based feedback. Critical would be good facilitators who could help us through the process; include opportunities for consumers and family members to get whatever training and supports necessary to be able participate fully in all aspects of the ongoing work that need to be done.
- Make recommendations to "mitigate the risk" that has occurred as a result of the previous lack of meaningful consumer/family/parent/youth involvement in the change in service delivery of behavioral health services to MaineCare recipients with "severe and persistent mental illness" to the SIMS Governing Structure. Sufficient meeting time should be given for full discussion, with families and consumers fully participating in designing/setting the agenda.
Working Definition: Meaningful Consumer and Family Involvement
Meaningful consumer and family involvement is when people with lived experience in Maine’s mental health system are able to participate as full partners in, and contribute their expertise to, all aspects of planning, design, implementation, delivery, and continuous quality improvement of mental health systems and services, and to have that participation and expertise reflected in the decisions made regarding changes and/or improvements in the policies, systems, and structures that support the delivery of mental health services.