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Our History

How We Started

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Advocates for Medically Fragile Kids NC was organized in 2016 by mothers – Jenny Hobbs, Elaine Nell, and Natalie Weaver – in response to NC Medicaid’s proposed changes to the CAP/C waiver. The group brought together families across the state and spoke with NC Medicaid, members of the General Assembly, and various NC non-profits about their concerns regarding proposed cuts to the program. Within six weeks, these women led a successful campaign that stopped catastrophic cuts that were just weeks away from implementation. They worked with Dave Richard, then-Deputy Secretary for NC Medicaid, to start a stakeholder group of families and providers to work with NC Medicaid on future policy changes. Realizing there was not an organization focused on the needs of medically fragile children in NC, the group decided to formalize as a 501(c)(3) nonprofit organization in December 2016.

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Our Recent Accomplishments

Since its founding, Advocates for Medically Fragile Kids NC has been a key voice in discussions about services for children with complex medical needs.
Here are just a few of our highlights and accomplishments since 2016:

Helped redefine stakeholder engagement for NC Medicaid to include families
Successfully fought against repeal of the ACA in 2017
Won the 2017 Champion for Equality and Justice Award from Disability Rights North Carolina
Assisted with developing new policies and guidelines for CAP/C waiver including increasing number of slots
Advocated for Medicaid Expansion in NC which finally passed in 2023
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Continuing Our Growth

In 2023, the board expanded to 10 members to better represent the variety of needs across the state. These new board members bring a wealth of experience, both lived and professional, which will help the organization continue to effect positive change for the many families with medically fragile children in North Carolina.

The organization continues to be entirely volunteer-run and provides all its services to families free of charge.

Learn More About Who We Are:

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