The What, Why, and How of Community Action Committees (CACs)

In our post announcing our Healthy Parkinson’s Communities™ initiative, we outlined our three goals:

Ensure Parkinson’s community leaders have the knowledge and resources they need to make a positive and sustainable change in their community 
Encourage and support data-informed initiatives designed to increase access to and engagement with resources that improve the quality of life for people with Parkinson’s
Work with communities to raise awareness of Parkinson’s in their areas

In this post, we will discuss our first goal by defining the what, why, and how of Community Action Committees (CACs).

Raising your hand to lead change in your community can feel overwhelming; however, when you bring diverse and motivated community leaders along for the ride, the experience can be enjoyable and manageable. We hope that by sharing our process from idea to implementation, you will be inspired and feel confident that you can lead change in your community with CACs.  

“What is a Community Action Committee?”

  A CAC is a diverse coalition of community leaders from local organizations, hospitals, universities, and more who are making a difference in their community.   

“Why do you encourage Community Action Committees?”

 We encourage them because we’ve learned over the past 16 years that we are better together. When operating alone, burnout is inevitable. However, organizing a motivated, diverse team of community leaders eases individual workloads and reduced burnout. When working to identify, understand, and solve challenging issues, a collaborative, cross-sector coalition offers broad experience, varied perspectives, and access to resources that can move change forward quickly.

“How can I start a Community Action Committee in my area?”

Starting a CAC is much like building a highly effective team in the workforce, but with super volunteers focused on improving your community. There isn’t ONE definitive way to create an effective CAC, but we have recommendations based on our experience.

 In this section, we will address the following:

Determining what your community needs in a CAC
Identifying potential CAC members
Outlining the commitment and making the ask
Conducting your first meeting

#1 – Determining what your community needs in a CAC
Before you begin inviting people to join your group, it is a good idea get specific about who you need on your team based on what your community needs. We recommend that you spend some time considering the following kinds of questions (either on your own or with a couple collaborators) to help you focus your efforts. The answers to these questions might lead you to search for different participants than you might have originally thought to include.

Questions to consider:

What are people living with Parkinson’s and their care partners saying about the community? What do they love, and what isn’t working? Are programs and wellness tools affordable and accessible?  
Do people with Parkinson’s in your community have access to specialists such as a movement disorder specialist, psychologist, PT, OT, and SLP? What barriers exist to access these specialists? 
Does the Parkinson’s community have access to tools to develop a wellness team and a strong support network? What barriers exist? 
Does the Parkinson’s community have access to affordable wellness programs? What are the barriers to this? 
What barriers exist in the community that make it harder for people with Parkinson’s to live well?  
How many of your tools for living well rely on technology? What are barriers to access and use of these tools? 
Are there policies in place that help or hinder access to living well tools for people living with Parkinson’s? 
Is the general community aware of Parkinson’s and that people living with Parkinson’s can live well?  
What are different industries or sectors that work in public service, and how can they help address challenges?  
Who are the changemakers in your community who are involved in the different areas of need for the Parkinson’s community? (These people don’t have to be directly involved with Parkinson’s, either. If your community is asking for more wellness programs, inviting a local municipality leader and recreation center could be beneficial. Permit yourself to be creative here.) 
Consider, what is your community ready for? When considering what needs are in your community, start by understanding what your community is prepared for. Community Toolbox has an excellent resource for you to assess community readiness and what actions to take based on the readiness information

#2 – Identifying potential members
Reflect on what you learned when talking through the questions above. What leaders in your community are involved in the areas you have learned need change, and who can help make those changes?

While this list is not exhaustive, consider: 

Leaders from your local Parkinson’s organization 
Administrator(s) from your local Movement Disorders Center, if there is one nearby (Maybe administrators from a nearby neurology center who see people living with Parkinson’s if there aren’t specialists nearby) 
Allied healthcare professionals who work with the Parkinson’s community 
Leaders from Parkinson’s wellness classes 
People living with Parkinson’s who lead support groups or other programs for the community 
Leaders from the local area agency on aging 
Local policymakers who are involved in the community 
Leaders in work to address healthcare inequities and disparities

You may find that you need people to support different areas and you don’t know anyone who can fill that role right now. That’s okay. As you begin inviting people, your network will grow and you’ll eventually find someone to fit the more aspirational roles. Keep them on your list.

#3 – Outlining the commitment and making the ask
As you begin to invite participants, you’ll need to be clear about what you are asking of them. Before you make any asks, think through the following

Will there be a minimum time commitment? 
How often will meetings be hosted and for how long? 
Will CAC members be expected to be present at all meetings, or will recordings be offered? 
Will there be different types of commitments in your CAC? For example, there could be a CAC with highly engaged members that reach out to other community leaders for specific projects. The community leaders that participate in the occasional project might not need to be official CAC members but instead, be on board with your work and available when the need arises.

Once you are clear on these details, make wish list and start inviting. The right people will be thrilled with the invitation and excited to participate. Be open to starting a CAC with a few very eager members and grow based on your work and the connections you make along the way.

Remember, great teams don’t have to be huge teams. Consider balancing how many people will work well to make change happen while also not feeling like meetings are too big to control or get work done. Many say the sweet spot is 7-12 members. Once you get a resounding yes, send an agreement for each member to sign. This agreement will add legitimacy to your CAC and layout expectations and commitments that will drive your team forward.

#4 – Conducting your first meeting
During your first meeting, focus on learning about each other and briefly sharing the experiences that have brought each person to the table. Consider ways to build rapport to build trust and have a strong bond going into the work like answering fun ice breaker questions or sharing a recent book, podcast, or article you read that resonated with you.

It’s a good idea to remember that, while you have been thinking about the goals of this new committee for a while now, this is new to the other members. This first meeting is a good time to walk through similar thought exercises you did when you first began. Choose some of the questions from step #1 to discuss and share what reflections you made that led you to creating this group.

Depending on your group’s size, this is also a good time to let members recommend others who may be a good fit for the committee. Look back at your list (especially the aspirational roles) and brainstorm who members know that could be invited to join to address these needs.

Finally, before you conclude your first meeting, vote on a regularly scheduled day and time for future meetings. It’s likely that not everyone can make it to every meeting; however, it’s essential to establish a schedule as soon as possible. You can record meetings for those who have a scheduling conflict.

Don’t expect to walk away from your first meetings with everything figured out. Yes, your next steps will include setting goals and creating a plan, but it’s important to lay groundwork and create an inclusive atmosphere to get started.

Learning to Lead

Stepping up to be a leader in your community does not mean you need to have everything figured out. Whether you continue to be the leader for your CAC or not, investing in developing your own leadership and collaboration skills will pay off as you dig more into this work. Here are some resources we have found helpful as we have developed our own leadership skills:

This is one of many posts that will be geared toward helping you create sustainable change in your community. Keep up with these resources and the rollout of the Healthy Parkinson’s Communities initiative by subscribing to our Community Leaders Newsletter.  

“What is a Community Action Committee?”

“Why do you encourage Community Action Committees?”

“How can I start a Community Action Committee in my area?”

Learning to Lead

“Why do you encourage Community Action Committees?”