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“Leadership is an action, not a position.” This quote from Donald McGannon is the perfect representation of family leadership. Leadership can come from many places and take many forms. Families and consumers can serve in leadership roles or capacities in a variety of ways. Engaging families and consumers as leaders is the ultimate form of engagement. At this level of engagement, the shift from ‘engagement’ to ‘partnership’ has been fully realized and the commitment to familycentered care and services has officially been institutionalized.
Just like the other levels of engagement, engaging families and consumers as leaders can be powerful – shaping programs and bringing betterment to their communities. Engaging families as leaders is not necessarily challenging, difficult, or any more time consuming than the other levels of engagement. It simply requires focus, intent, and commitment.
Providing either ongoing engagement opportunities, or one-time events, help families and consumers feel heard and listened to. Providing space for feedback and ideas builds trust and partnership within the communities you serve. In general, we've heard from families they love to give feedback on their experiences - both good and bad. However, often they only reach out to share when things did not work out so well - but many have expressed a desire (and joy) in also sharing the difference the services they received made in their lives. Creating advisory opportunities within your agency provides the space for that to happen.
Engaging in advisory roles also creates space to establish organizational champions in the community. If you take family and consumer feedback with an open and honest mindset - your program will be able to build and sustain in ways that profoundly impact those who use it. This can also bring empower families and consumers while strengthening your program or agency.
The terms “leader” and “leadership” can be intimidating to those who may equate this to access, education, paid or elected positions, or other types of status. When engaging with families as leaders, be clear about what this means to your organization. Use terminology that resonates with those you are serving. If, even after you describe leadership as an action, not a position, the families and consumers are still hesitant or not comfortable with that terminology, use something different. Again, it’s not about a position or a title, it’s about actions.
Families have expressed feelings of overwhelm (“This feels like too much for me.”) or inadequacy (“I don’t have the right credentials, education, or experiences.”), or lacking the confidence (“I’m not sure I have what it takes.”) when they were asked if they wanted to serve as a “Family Leader.” Building rapport can help families overcome these feelings. Organizational messaging around family engagement – that it is expected and part of the organizational culture – can go a long way to helping families and consumers recognize their value and the strengths they bring to the work.
A key benefit to engaging families and consumers in leadership roles within your organization is that it can provide capacity and support to your organizations’ efforts and services. Family and consumer leaders work along-side staff, community partners, and others towards a collective achievement, as a core part of the team. They can assist with community awareness efforts, represent the organization when staff are unavailable, provide education and advocacy efforts to elected officials or policy-makers, expand your reach and increase numbers served, and lead family and consumer engagement efforts.
Family and consumer leaders provide insight into the services and supports you offer, as their lived experiences provides them the ability to share what staff and professionals simply can’t understand, as they have not “been there.” Certainly, some professionals have entered the workforce or began working in the field because of their own personal experiences, that’s very important. However, a benefit of a family leader, who is not paid staff, they can be completely focused on the family/consumer perspective and not have to balance their personal experience with their professional role. Generally, family and consumer leaders:
Engaging in an advisory capacity can look differently based upon your goals, organizational structure, capacity, and community. Some examples include:
All experiences, both personal and professional, add value to an organization. Establishing and building rapport is essential to make lasting change. Building rapport includes viewing families and consumers as equals among staff and professionals and recognizing their preferences. For example, families have expressed feeling “less than” their professional peers in interdisciplinary advisory situations. One way to address this is to refer to them as a “Member” as a standard of practice, at least until you confirm their preference. These things, and the following tips, will help assure families feel their engagement is authentic and genuine - not simply to “check a box” for a grant requirement or “lip service” for community perception.
Engaging families in leadership roles is just like any of the other types of engagement. It’s not an exact science and it must be individualized for the organization or community culture. There is no magic curriculum to helping build family leaders, which makes perfect sense – since it is not about education, training, titles, positions, or professional backgrounds. It is about identifying interested families and consumers who strive to make a difference in their community and building relationships through asking for input or feedback and asking for support through advisory roles. It’s inviting them in at every stage of a program - planning, implementation, and evaluation.