Initiative

Advocates for Medically Fragile Kids NC

Advocates for Medically Fragile Kids NC is a 501c3 nonprofit organization dedicated to advocating for the rights and needs of medically fragile children and their families. We are powered solely by volunteer family advocates who work with legislators and other policy makers, including NC DHHS, to ensure they are fully educated on the hardships and impacts their decisions have on families. We work with individual families as well as collaborate with other organizations serving children to best educate and empower families to advocate for their medically fragile children. We believe every child deserves to have all their healthcare needs met.

Home Pathways Action Map Advocates for Medically Fragile Kids NC

Fast Facts

Relevant Actions	Action 1.1, Action 1.2
State or Local?	State
Counties	All
Lead Agency	Advocates for Medically Fragile Kids NC
Type of Agency	Nonprofit
Community Voice	We regularly educate families to encourage their participation in the Community Alternatives Program for Children (CAP/C) stakeholder meetings and in sharing public comments to NC Medicaid & Centers for Medicaid and Medicare Services (CMS) when changes to CAP/C are planned. We also provide specific suggested action items for families to use in communicating with legislators about proposed CAP/C changes. We solicit family voices through individual dialogue as well as through surveys, which we share with key policy makers. Our family advocates serve on state-level committees to amplify these voices to influence state policy-making. Some of these committees include the Medical Care Advisory Committee (MCAC), the Olmstead Stakeholder Advisory (OPSA) Committee, and the CAP/C Advisory Committee. We also serve on collaborative partner agencies’ committees such as the Children’s Advocacy Network, the NC MomsRising Steering Committee, and the NC Health Working Group.
Impact	We worked closely with policymakers at NC DHHS to make the needs and concerns of CAP/C families heard when the Department was revising the CAP/C Clinical Policy. We especially sought to encourage the Department to make changes in the eligibility criteria to allow more kids to qualify for CAP/C. This resulted in a net gain of 357 children admitted to the program since eligibility criteria was revised a year ago.
Next Steps	We hope to be invited to participate in and encourage other families to participate in monthly stakeholder meetings hosted by NC DHHS to solicit input about the transition away from Covid flexibilities. The Department is soliciting input from stakeholders about what flexibilities worked well and that we’d be interested in being written into the new CAP/C waiver policy. When the new CAP/C waiver policy is released for public comments to CMS, we plan to educate families about important items and to provide specific suggestions for them to consider including in their own comments.
Primary Partners	Child, family, & disability advocacy organizations
Primary Funders	Mini-grant through NC Child Private individuals
Contact	Jenny Hobbs or Elaine Nell

Active Counties

Pathways Action Map