Jackie Kancir, a nationally recognized disability advocate, has been appointed Executive Director of the National Council on Severe Autism.
“As autism rates continue to surge in the U.S., and as our growing nationwide base of families faces increasingly urgent issues regarding treatment, policy and care, we are thrilled to have Jackie Kancir, a nationally recognized advocate, help us lead the way toward meaningful reform.”
Jill Escher, President of NCSA
National Council on Severe Autism (NCSA), the nation's leading think tank for recognition, policy, and solutions for individuals and families affected by severe autism and related disorders, has announced the appointment of its first executive director effective July 1, 2024. This represents a major milestone for the autism nonprofit, which has experienced rapid growth since its inception in 2019.
“As autism rates continue to surge in the U.S., and as our growing nationwide base of families faces increasingly urgent issues regarding treatment, policy and care, we are thrilled to have Jackie Kancir, a nationally recognized advocate, help us lead the way toward meaningful reform,” said NCSA president Jill Escher.
In this new role, Kancir aims to foster authentic recognition of the disparities faced by the severe autism community and partner with other groups to break access barriers, fill service gaps, and enhance the overall quality of life for individuals with severe autism and related disorders.
As the survivor of a brain tumor that left her with permanent disabilities, Kancir brings a fresh and robust lived experience to strengthen NCSA’s commitment to a better world for all affected by severe and profound autism. She is the third generation working in the field of developmental disabilities and is a sibling, parent, and self-advocate.
“The severe and profound autism communities face many disparities in housing, in Home and Community Based Services (HCBS), a lack of representation in research, obstacles for family caregivers, and higher rates of police and hospital encounters, as well as seclusion and restraint in schools,” explained Kancir. “It's my life's mission to change this.”
Ashlie Bell-Seibers, Director of Family Voices of Tennessee expressed, “Jackie is a devoted mother, friend, and passionate advocate. We are excited to strengthen our partnership with NCSA, a national resource network with a deep understanding of the hard work needed in Tennessee to highlight the tremendous systemic shortcomings that exist for individuals with Autism and their families.”
Kancir has volunteered with NCSA for several years, first on the policy committee and then as State Chair of the Tennessee Chapter of NCSA. In early 2024, NCSA appointed Kancir to the role of national Policy Director. She volunteers as the Patient Advocacy Director for the SynGAP Research Fund (SRF) and sits as a member of the Statewide Planning and Policy Council (SPPC) for the Tennessee Department of Disability and Aging.
Kancir resides in west Tennessee with her adult daughter, who has profound autism and a rare disease, SynGAP1-related disorder – a leading genetic risk factor for autism spectrum disorder.
As an organization with a heritage as a volunteer-run entity, NCSA will continue to operate with volunteerism at the core of its values, including its National Grassroots Network (NGN), which has been growing in both size and impact across the nation.
Kancir welcomes additional collaborations and support from other groups to enhance the quality of life for individuals with severe autism. These partnerships aim to end discrimination for symptoms of disability, develop innovative solutions for inclusive research, provide family caregiver support, promote integrated multidisciplinary healthcare, generate novel housing solutions, and offer specialized behavior supports. You can reach her at policy@ncsautism.org.
About NCSA: NCSA's mission is pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders. NCSA values the contributions of its volunteers and supporters who are instrumental in driving its mission forward.
For more information about NCSA and its initiatives or to donate to support its efforts please visit https://www.ncsautism.org/.
