Project Background

In April of 2022, The North Carolina Department of Health and Human Services (DHHS) published a new waiver service definition: Care Extenders. This new service definition includes the incorporation of people with lived experience and their family members into a paid service and presents a unique opportunity to advance Family Navigation and Peer Support Services for people with I/DD in North Carolina.

While the proposed Care Extender service definition creates a pivotal opportunity to advance paid, professional family navigation and peer support in the I/DD service system, it has come at a challenging time. The I/DD, Behavioral Health, and Medicaid service delivery systems are undergoing a seismic shift as they transition from the current LME-MCO and fee-for-service physical health model to the NC Medicaid Managed Care Behavioral Health and Intellectual/ Developmental Disabilities Tailored Plan on April 1, 2023.

This report includes:

  • Strategic recommendations for short-term, midterm, and long-term implementation and growth of family navigation and peer support in the proposed Care Extender definition, focusing on scalability and sustainability.
  • Identification of policies that support and limit family navigation and peer support in the Care Extender definition.
  • Identification of changes in practices that promote statewide adoption of family and peers as care extenders.
  • Vignettes that illustrate the role that family navigation and peer support can have in achieving valued outcomes and how they align with value-based care and reimbursement.

The Report

Mission Possible

The Appendices

The Funder

The North Carolina Council on Developmental Disabilities (NCCDD) funded Community Bridges to develop a Care Extender White Paper that summarizes the perspectives of families, individuals with I/DD, LME MCOs, DD Providers, policymakers, and healthcare providers AND identifies strategic recommendations to address potential challenges that could impact success. The project time period was June through October 2022.

The Project Team

  • Kelly Friedlander, MSW, MPA

    Kelly Friedlander, MSW, MPA

    Kelly Friedlander, MSW, MPA, has worked in the intellectual and developmental disabilities field for over 15 years and consults primarily around stakeholder engagement, advocacy, and managed long-term supports and services. In North Carolina, she worked on stakeholder engagement and policy analysis projects for clients such as the National Association of State Directors of Developmental Disabilities Services, RHA Howell, the National Association of Councils on Developmental Disabilities, Vaya Health and UnitedHealthcare. Her specialty is convening and facilitating diverse work and advisory groups, with the goal of infusing individuals with IDD and their family members' voices into the public policymaking process.

  • Karen Luken

    Karen Luken

    Karen Luken has more than 40 years of experience in disability and health consultation, recreational therapy practice, research, and teaching, and grants management focused on integrated care, Medicaid managed care, access to healthcare and health promotion for persons with disability, accessible environments, and inclusive community services. Karen received her bachelor’s degree in therapeutic recreation from the University of Illinois-Urbana, and her graduate degree in Recreation and Leisure Studies and certificate in public health from UNC-Chapel Hill.

  • Sheron Mosbyn

    Sheron Mosbyn

    Sheron Mosby is the parent of two children with Autism. She became interested in learning more about systems of care when her oldest son was unable to obtain the services he needed. Sheron is committed to helping families in Northeastern NC access quality healthcare and reducing the barriers they face when trying to access specialty services and care in their rural communities.

  • Jade McWilliams

    Jade McWilliams

    Jade McWilliams (they/them/theirs) is a multiple disabled activist, artist, and speaker in Western North Carolina. They focus on community organizing and education around the intersections of poverty, disability, queerness, and abuse. Jade began mentoring young neurodivergent people in 2013, and has continued working with them ever since. Jade serves as co-chair of IDDAC (IDD Action Coalition), which seeks to end sexual exploitation of people with IDD. Jade has been honored with the following awards: The 2020 Essential Piece Award by Arms Around ASD; The 2021 Tzedek Impact Award; and The 2022 NC Tide Empowering Hope Award. Jade is currently working on becoming certified as a Mental Health Peer Support Specialist.