Engaging Diverse Stakeholders in Systems Change for CYSHCN

Debbie Biggerstaff
Innovative Approaches Coordinator
Cabarrus Health Alliance

Sonja Bohannon Thacker, M.S.W., L.C.S.W.
Co-Chair, Cabarrus Innovative Approaches Steering Committee
Clinical Social Worker, Cabarrus Health Alliance

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Cabarrus County, N.C.

A local policymaker attended a legislative breakfast, which was held to increase awareness of the challenges facing families of children with special healthcare needs and differing abilities.  One mom at the breakfast told her family's story, sharing that her second child was born with a medical condition that required multiple hospitalizations during the first three years of his life. Both parents were working and had health insurance, but the family's out-of-pocket expenses were insurmountable – even with health care coverage. Because of all the time she had to spend away from work, rushing her son to medical appointments and hospitalizations, the mom lost her job. The family was forced to declare bankruptcy, and eventually lost their home.

The policymaker was so moved by this story that he shared his newfound knowledge with others in his circle of influence. He invited local business leaders and philanthropists to attend a dinner reception where they could learn more about the needs of families of children with special health care needs or differing abilities.

The Need

More than 13,000 children and youth in Cabarrus County have special health care needs or differing abilities (per the 2016-2017 National Survey of Children's Health data estimate that 22 percent of North Carolina children have special health care needs). That means one in five children in our community cannot consistently access needed services, are at heightened risk for chronic health conditions, and cannot fully participate in community life. (2016-2017 National Survey of Children's Health; combined data set available at www.childhealthdata.org.)

Many community systems touch the lives of families of children and youth with special health care needs (CYSHCN). However, most who work within these systems have a very limited awareness of and knowledge about the challenges these families face on a daily basis. By engaging a more diverse group of stakeholders in Innovative Approaches' work – such as policy makers and community leaders – this stakeholder support can be leveraged to influence policies that will directly benefit CYSHCN and their families. 

Community Engagement

The Cabarrus Innovative Approaches (IA) initiative engages community partners in improving the system of care for CYSHCN, ages 21 and under. When the Cabarrus IA Steering Committee realized the need to engage the broader community in this work for growth and sustainability, two key groups were identified with the potential to impact families' lives every day:  (1) those who could advocate for more supportive CYSHCN policies, such as county level or state level elected officials, and (2) those who could present or secure a significant resource base from which their efforts could be sustained, such as family or child serving businesses or nonprofit organizations. Activities included the following:

  • Training steering committee members on systems integration
  • Designing two community events to bring new voices to the table for CYSHCN: a legislative breakfast for local policymakers, and a dinner reception for business leaders and philanthropic organizations
  • Deploying a marketing communication plan that supports ongoing outreach to county municipal leaders, policymakers, business leaders, and philanthropic organizations.
Results

This project strengthened community collaborations and partnerships. The social media marketing campaign increased awareness and engagement in the community at large, with Facebook posts alone reaching 12,360 people. Legislative breakfast attendees increased their awareness of critical issues impacting families of CYSHCN and were receptive to continue conversations on these issues, while dinner reception attendees expressed interest in future partnerships.

Through the project activities, the steering committee learned:

  • the importance of engaging the greater community in order to leverage its collective impact on policies, funding, and opportunities for a more inclusive community;
  • the value and impact of family stories in igniting systems change;
  • the role of personal relationships when conducting outreach; and
  • the importance of meaningfully connecting community members with the initiative's values.

The Cabarrus IA initiative will continue to expand partnerships in the community using a systems integration approach. Systems integration tools will be used to identify additional stakeholders to engage and to determine the value of collaboration to them. Families of CYSHCN will be offered a forum to share their stories and leverage support. In order to sustain their work and overcome associated challenges, the Cabarrus IA initiative will engage steering committee members in the development of a business plan, which will adapt to the changing needs of families of CYSHCN in the community.