By Mia Matthews, President/Executive Director, CHANs Promise Foundation; 2019-2020 National Consumer Scholar through the National Center for Complex Health and Social Needs 

I became an advocate for kids with complex medical needs after losing my daughter who was born with a host of medical complexities. Channing was a bright, growing toddler who went into respiratory distress while at home with her nurse. Channing was not given the life-saving interventions she needed to survive. 

Since this heartbreaking event, my family and I took our issue to the Maryland state capital in Annapolis and started educating our elected officials on the need for continuing education and specialized training for home health nurses who care for people with medical complexities. Our advocacy resulted in a bill presented to the Maryland General Legislative session in 2019 and again in 2020. We are hopeful that when the legislature opens up again, our bill will pass a vote in the Finance Committee and move onto a hearing and vote in the Maryland House of Representatives. 

Advocacy can happen just by chance or on purpose, all you need is the passion to make change. 

There is no blueprint for how a patient or caregiver can become an advocate. It is important for everyone with complex health and social needs to be aware of the issues and policies that have a direct impact on their health and well-being. And for many people it becomes important to take the next step: to begin advocating to improve the systems and policies that impact how people with complex health and social needs access care and services. 

Though many advocates work independently, it can also be powerful to align one’s efforts with an organization that shares a similar goal and vision. Consumers offer invaluable lived experiences, a deep understanding of the communities they come from, and unique perspectives that can help shape solutions that are best suited to address the complex sets of problems faced by healthcare and social service agencies everyday. Organizations can provide resources, tools, and other supports to help amplify the voices of consumer advocates who work alongside them. 

Here are some of the ways people with complex health and social needs can get involved in advocacy work as consumers:

• Join a committee or advisory board within the organization that provides you with services, or an organization that is aligned with your own goals and vision, and stay involved (attend the meetings in person or virtually and keep up with the current issues that impact the organization). For example, if you were a patient at a local hospital where you received excellent care, but after being released you find out that hospital is in danger of being closed down because of lack of funding, you can advocate to help keep that hospital open by joining an advisory committee within the hospital and writing elected officials about why the hospital is so important to that community and the negative impact that closing it will have.

• If there is a systems-level issue that impacts you, request a meeting with the organization’s leadership to discuss how you can become involved. While my daughter Channing was in the NICU, there was a set time and date for sibling visiting hours, which did not always accommodate families who worked and had other kids in schools. I noticed that after the time it took me to travel from work, pick up my son, and make it for the sibling visiting hours, we only had about 30 minutes left for my son to spend time with his sister. I decided to take my concern to the nurse manager and she suggested I join the Pediatric Family Advisory Committee. By joining the committee, I was able to bring my concern to a larger audience and speak with hospital leadership about extending the dates and times for sibling visiting hours. As a result of my advocacy, the hospital added additional sibling visitation hours on Saturdays. 

• If the issue is on the state-level,  find out who your elected officials are and educate them on the issue. See if they would be willing to introduce a bill or support other policy options that you feel are the best approach. Recently, one of my fellow National Consumer Scholars, Stephanie Burdick, authored this policy proposal to support the expanded employment of community health workers as part of the COVID-19 response efforts in Utah. 

• Sharing personal stories and lived experiences can be a very powerful way for consumers to support advocacy efforts. Whether sharing these experiences at congressional hearings, at meetings with elected officials, or at public events, personal experiences can build empathy and spur action far more than sharing just facts and data devoid of the human experience.

• Consumers can also play an important role as advocates by participating in community outreach and fundraising events. Not only are these events opportunities for story-sharing, they are also an opportunity to educate and mobilize the public about the work of organizations you are supporting, why their work is important, and how others can get involved in their efforts and campaigns.

• Find out if the organization has a policy day and sign up to attend. For example, the Arc of Maryland has an annual Developmental Disabilities Day at the Legislature where fellow advocates, families, policy makers, and colleagues gather in Annapolis, Maryland to make their voices heard. During the annual Developmental Disabilities Day we learn about the current year’s priorities and meet with our elected representatives to create a better tomorrow with and for people with intellectual and developmental disabilities (I/DD). You can find out more about Developmental Disabilities Day here.

There are many important issues people with complex needs can advocate on as consumers of healthcare and social services, and ways to get involved in advocacy are limitless. What is most important is to find an issue you are passionate about and a way of getting involved that feels right to you. 

If you are working alongside an organization, it is important for consumer advocates to speak up when you have a new idea or new opportunity you’d like to implement. If you are not working alongside an organization, you can still advocate on an issue that is important to you. If it is a state issue, contact your local congressman or delegate. If it is local, contact your city council person and discuss with them how you can work together to make change. 

With the COVID-19 pandemic and protests against police brutality and systemic racism raging across the country, many leaders are newly open to the possibility of change, and many more people are suddenly becoming outspoken advocates. Always remember that each person’s experiences and perspectives are valuable, and that people with lived experience have an important role to play in shaping the systems and policies that can help our communities thrive.

To learn more about consumer leadership at the National Center for Complex Health and Social Needs, including the work of our National Consumer Scholars, please visit our webpage.