Policy & Advocacy | The Carolina Institute for Developmental Disabilities

Since 1963, the national network of University Centers for Excellence in Developmental Disabilities (UCEDDs), which are funded and designated by the Administration on Disabilities (AoD), have worked towards a shared vision in which all people, including those with disabilities, can participate fully in their communities. Promoting independence, productivity, and community inclusion are key components of this vision.

As a UCEDD program, the Carolina Institute for Developmental Disabilities (CIDD) works in partnership with people with disabilities, their families, advocates, professionals, and organizations to develop and provide interdisciplinary training, exemplary clinical services, technical assistance, cutting-edge research, and information dissemination, all aimed at increasing the independence, quality of life, and community integration of persons with developmental disabilities. Inclusion remains a core value of the CIDD as well as collaboration with individuals with developmental disabilities and their family members, community agencies, university departments and programs, and key partners at local, state, and national levels to advance policy, advocacy, and best practice.

Explore programs and activities relevant to this mission below:

Leadership Education in Neurodevelopmental Disabilities (LEND)

The CIDD was one of the first Leadership Education in Neurodevelopmental Disabilities (LEND) programs in the country to recruit self-advocates as participants. The purpose of this training program is to prepare individuals with diverse experiences and professional backgrounds (including self-advocates and family advocates) to assume leadership roles in their respective fields by ensuring high levels of interdisciplinary clinical knowledge and leadership competencies with the goal of improving the health of infants, children, and adolescents with disabilities. Visit the NC LEND site for more information.

North Carolina Postsecondary Education Alliance (NCPSEA)

The CIDD hosts the North Carolina Postsecondary Education Alliance (NCPSEA), a diverse group consisting of emerging leaders with developmental disabilities, representatives of state agencies and organizations, legislators, educators, and families who share a goal of increasing inclusive educational opportunities for adults with intellectual and developmental disabilities (I/DDs). In line with these efforts, UNC Chapel Hill now offers HEELS 2 Transition (H2T), a variety of inclusive postsecondary educational experiences aimed to support young adults with I/DDs toward a self-determined life.

CIDD Community Talk Series

The CIDD offers a Community Talk Series open to individuals, family members, teachers, care professionals, and others interested in learning more about specific topics related to developmental disabilities. Speakers vary and cover a range of topics related to advocacy, clinical care, policy, research, and more. All talks are free, and everyone is welcome. For more information, contact the CIDD Director of Advocacy and Inclusion, Anna Ward.

CIDD Consumer Advisory Committee

The CIDD’s Consumer Advisory Committee (CAC) consists of community stakeholders including persons with intellectual and developmental disabilities and their family members as well as representatives from state agencies and advocacy organizations. The CAC meets twice yearly to focus on issues related to the CIDD’s role as the UCEDD for North Carolina, overall CIDD activities, and priorities and initiatives of the NC Developmental Disabilities Network. Members reflect on initiatives and offer input on projects that address UCEDD and CIDD priority areas and positively impact the state and constituents.

North Carolina Council on Developmental Disabilities

The North Carolina Council on Developmental Disabilities (NCCDD) is a governmental committee that advises the NC Governor on issues of relevance for policies regarding individuals with intellectual and/or other developmental disabilities (I/DDs). It works to empower people with I/DDs through efforts to support self-advocacy, capacity building, and systems change. As a member of the North Carolina Developmental Disabilities Network, the CIDD sits on the Advocacy Committee and works with other members of the NCCDD and state partners to broaden the availability of resources for people with I/DDs and their families.

Disability Rights North Carolina

Disability Rights North Carolina (DRNC) is a legal advocacy agency that helps North Carolinians with disabilities understand their civil rights and helps them protect those rights. DRNC is the federally mandated Protection and Advocacy agency for NC and is a North Carolina Developmental Disabilities Network partner working with other state organizations to expand resources and advocacy efforts for people with disabilities.

Work Together NC

Work Together NC is a community collaboration that brings together self-advocates, families, employers, state agencies, and service providers to improve access to opportunities and resources focused on the transition to adulthood for people with intellectual and developmental disabilities.

Policy Efforts

Examples of state-level policy efforts include collaboration with advocacy groups and initiatives, such as the Rethinking Guardianship, Meet the Need NC and the Lived Experience Network Speaks (LENS). We also provide expertise to legislative interest groups such as the NC Legislative IDD Caucus, and DHHS advisory committees such as the Direct Support Professional Work Group. The CIDD participates in education efforts for legislative issues that are critical to individuals with developmental disabilities across the lifespan and their families.