VKC researchers provide expertise on national disability policy and research initiatives

Next Steps at Vanderbilt student with Down syndrome at a football game with a Vanderbilt Ambassadore

Vanderbilt Kennedy Center researchers Erik Carter and Julie Lounds Taylor are sharing their expertise at the federal level to advance public policy for persons with intellectual disabilities and research priorities for persons on the autism spectrum.

Erik Carter presented to President’s Committee for People with Intellectual Disabilities

Ending segregation in education and beyond was the central message of Erik Carter’s invited presentation to the President’s Committee for People with Intellectual Disabilities (PCPID) when the Committee met in Washington, D.C., November 9-10.

Eric Carter, Ph.D.

Eric Carter, Ph.D.

Carter, Ph.D., is professor of Special Education at Peabody College, Vanderbilt University. He is a Vanderbilt Kennedy Center (VKC) researcher and faculty member in the VKC University Center for Excellence in Developmental Disabilities.

The PCPID advises the President of the United States and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual disabilities (ID) and the field of ID. The goal of the Committee is to improve the quality of life that is experienced by people with ID by upholding their full citizenship rights, independence, self-determination, and life-long participation in their respective communities.

“We are stuck,” Carter said. “We are in the midst of a prolonged period of drift and stagnation that needs to be broken. In virtually every area I reviewed, there has been little or no movement of individuals with ID away from segregated settings in the past decade.”

Between 7 and 8 million Americans of all ages, or 3% of the general population, experience ID. Nearly 30 million or 1 in 10 families in the United States are directly affected by a person with ID at some point in their lifetime.

The PCPID is mandated, by Executive Order, to provide an Annual Report to the President. Carter’s presentation was one of three invited reports, with related data and analysis, which the President’s Committee will consider as the focus of their 2016 Annual Report to the President.

Carter shared national and state data demonstrating that inclusion of persons with ID has stalled. He cited evidence in education, postsecondary education, employment, congregations, housing, and personal relationships.

Carter spoke passionately to the PCPID citizen and ex-officio government members about how individuals with ID flourish best in community. He made an equally strong case for why our communities benefit from the inclusion of people with intellectual disabilities.

“Our failure to end segregation also prevents our communities from thriving,” Carter said. “Our schools, workplaces, neighborhoods, congregations, and communities are incomplete without the presence and participation of people with disabilities.”

Carter urged the PCPID to use its influence to make “a clear, compelling, and collective call that pushes us toward the end of segregation” of persons with ID, saying, “We now know how to support inclusion well, we just don’t do it.”

“The Vanderbilt Kennedy Center and Peabody College are so proud that Dr. Carter was selected as one of only three in the national panel of invitees to present before the Committee,” said Elisabeth Dykens, Ph.D., Vanderbilt Kennedy Center director, Annette Schaffer Eskind Chair, and professor of Psychology. “In 2015, the Kennedy Center celebrated its 50th anniversary as one of our nation’s original Intellectual and Developmental Disabilities Research Centers. These Centers had their origin in the first presidential committee on intellectual disabilities, which reported to President John F. Kennedy. Its members, which included Peabody College faculty Nicholas Hobbs and Lloyd Dunn, recommended the founding of a national network of research centers. With Dr. Carter’s presentation, we have come full circle and continue our national leadership in improving the lives of individuals with intellectual and developmental disabilities.”

PCPID is led by a Chair (appointed by the President), and the Commissioner of the Administration on Disabilities (AOD), who also serves as the Committee’s Designated Federal Official. Organizationally, AOD is located within the Administration for Community Living at the Department of Health and Human Services.

Julie Lounds Taylor appointed to Interagency Autism Coordinating Committee

The U.S. Department of Health and Human Services (HHS) announced the appointments of new and returning members to the Interagency Autism Coordinating Committee (IACC), reauthorized under the Autism CARES Act. Julie Lounds Taylor, Ph.D., has been appointed as a new IACC member. Taylor is assistant professor of Pediatrics and Special Education and a VKC investigator.

Headshot of Julie Lounds Taylor

Julie Lounds Taylor, Ph.D.

Taylor’s research focuses on factors that promote a positive transition to adulthood for individuals with autism spectrum disorder (ASD) and their families. She has published research on a variety of autism and disability services-related issues, including sex and gender differences, peer victimization, transition planning, secondary education and vocational training, employment, and daily life skills for people with ASD.

The IACC is a Federal advisory committee created by Congress in an effort to accelerate progress in ASD research and services. The IACC works to improve coordination and communication across the Federal government and to work in partnership with the autism community. IACC responsibilities include annually updating the IACC Strategic Plan for ASD, preparing an annual summary of advances in ASD research, monitoring federal ASD activities, and providing guidance to the HHS Secretary on matters related to ASD.

The IACC is made up of officials from many different Federal agencies involved in autism research and services, as well as adults on the autism spectrum, parents and family members of individuals on the autism spectrum, advocates, researchers, providers, and other members of the autism community. For more information on the IACC, see www.iacc.hhs.gov.

Jan Rosemergy is VKC deputy director and director of Communications.

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This is a monthly email of Vanderbilt Kennedy Center Notables published by the Communications staff of the Vanderbilt Kennedy Center.