Solving the
Mysteries of
Development and
Developmental
Disabilities
Elisabeth Dykens, PhD—Director
Louis Muglia, MD—Associate Director
1 in 6 children has a developmental disability
The Vanderbilt Kennedy Center can help
What do the 1 in 6 have?
• Troubles thinking, learning, growing,
behaving, communicating, feeling, relating
– Learning disabilities
– Language delays
– Autism Spectrum Disorder
– Down syndrome
– Rare syndromes
– ADHD
– Cancer survivors
How does the Vanderbilt
Kennedy Center help?
Research - causes, treatments
Dissemination – information to others
Supports, services – outreach, clinics, programs
Training – students and professionals
Partners – community, state, families
MISSION
• To improve the quality of life of children,
adolescents and adults with disorders of thinking,
learning, perception, communication, mood and
emotion caused by disruption of typical
development.
Core Values
• To pursue scientific knowledge with creativity
and purpose
• To educate and to disseminate information
• To facilitate discovery
• To translate knowledge into practice
What is the Vanderbilt Kennedy Center?
• A national Eunice Kennedy Shriver Intellectual and
Developmental Disabilities Research Center, one of 14
supported by the Eunice Kennedy Shriver National Institute of
Child Health and Human Development. Founded 1965.
• A University Center for Excellence in Developmental
Disabilities, part of a national network of 67 such centers
supported by the Administration on Developmental Disabilities,
U.S. Health & Human Services.
• Administratively, a transinstitutional interdisciplinary center
within Vanderbilt University.
• Includes the Treatment and Research Institute for Autism
Spectrum Disorders (TRIAD) and the MIND Training
Program, a LEND Grant supported by the Bureau of Maternal
& Child Health.
AUCD Network
Interdisciplinary
Research, Training, and Service
• 190+ faculty
• Medicine, Nursing, Peabody, Arts
and Science, Engineering,
Divinity
• 20 departments
• From Genes…
• to Brain…
• to Behavior…
• to Intervention…
• to Family support..
• to Communities…
• to Public policies
Vanderbilt Kennedy Center Research
To facilitate discoveries that make positive
differences in the lives of persons with
disabilities and their families
IDDRC Research Areas
Nervous System Development
Cognitive Processes and Interventions
Impact of Disabilities Across the Life Span
Mental Health Research and Interventions
Rare Diseases Network
National Institutes of Health Rare Diseases Clinical Research
Network (RDCRN)
VU site for RDCRN Consortium on Metabolic Disorders
Marshall Summar, MD (Pediatrics)—Site Director
VKC site for RDCRN Consortium on Angelman and Prader-Willi
Syndromes
Marshall Summar, MD (Pediatrics)—Site Director
Elisabeth Dykens, PhD (Psychology), Terry Jo Bichell, RN,
MPH (VKC)—Key Personnel
IDDRC Research Support Core Services
Available to VU Faculty Who Are VKC Members
Administrative Services — includes Communications, Graphics,
Technical Support (Tim Stafford)
Basic Neuroscience Services (Karoly Mirnics, PhD)
Statistics and Methodology (Frank Harrell, PhD)
Clinical Neuroscience Services (Adam Anderson, PhD)
Participant Recruitment and Assessment Services
(Elisabeth Dykens, PhD)
StudyFinder
and Research Family Partners
http://kc.vanderbilt.edu/studyfinder
http://kc.vanderbilt.edu/RFP/
Lynnette Henderson, PhD,
Research Registry & Recruitment
Coordinator
Research Training—
VKC Administered
• Research Behavioral Scientists in Intellectual and
Developmental Disabilities—NICHD
1954-present, oldest in nation
Tedra Walden, PhD, & Craig Kennedy, PhD
• Life-Span Development of Normal and Abnormal
Development (Developmental Psychopathology)—
NIMH Judy Garber, PhD
• Biobehavioral Interventions Training Program—
NIH Roadmaps
Elisabeth Dykens, PhD
Research Training—VKC Affiliated
• Graduate Neuroscience Training
• Vision Research Training
• Neurogenomics Research Training
• Training in Biomedical MRI & MRS
• Special Education Graduate Programs
The VKC UCEDD
2005 designation as a University Center
for Excellence in Developmental Disabilities
Four core functions of all UCEDDs
– Training
– Research
– Service/Technical Assistance
– Dissemination
Elisabeth Dykens, PhD
Elise McMillan, JD
Co-Directors
The VKC UCEDD
• Focus on systems change
• One of only few centers in
country to be both an IDDRC
and a UCEDD and to have a
LEND program
• Community Advisory Council
Vanderbilt Kennedy Center
UCEDD Areas of Emphasis
• Education and Early Intervention
• Health and Mental Health
• Supports for Individuals with Developmental
Disabilities and Families
• Recreation and the Arts
Tennessee Developmental Disabilities
Network Partners
• VKC UCEDD
• University of Tennessee Boling Center (UCEDD) – Memphis, TN
• Disability Law and Advocacy Center of Tennessee – Nashville, TN
• Tennessee Council on Developmental Disabilities – Nashville, TN
 Network Project Examples – Transition, Hispanic Outreach,
Emergency Preparedness
VKC UCEDD
Preservice Training
• Programs leading to an academic degree
• Undergraduate, master’s, doctoral, postdoctoral or
residency representing disciplines across Vanderbilt
Terri Urbano, MPH, PhD
Director of Training and of Health
VKC UCEDD
Community Training
• Developed collaboratively with community
organizations, practicing professionals (continuing
education) and consumers, e.g., MIHOW
• Examples: Co-Occurrence of Down Syndrome
and Autism; Dual Diagnosis; Disability and the
Hispanic Community; Disability Training for
Administrative Law Judges; Education Advocacy
Training
Examples of UCEDD Research
• Children with DD and Sibling Hospitalizations
• Web-Based Survey of Adult Siblings of Persons with DD
• Hospitalizations and Causes of Death in Down and PraderWilli Syndromes
• The Epidemiology of Divorce in Down Syndrome
• Early Hospitalization of Children with Down Syndrome
• Modeling and Geo-Spacial Analysis of Infant
Mortality/Adverse Birth Outcomes in Tennessee
Robert Hodapp, PhD, Director of Research
Family Outreach Center
One-stop “gateway” to VKC/VU
services and research
Sibling Programs: SibSaturdays, Teen
Fusion, Tennessee Adult Brothers and
Sisters (TABS)
Parent to Parent Support Group (FUNFamilies United Network)
Britt Henderson Training Series for
Educators
Social Work Services,
VKC Family Outreach Center
Provides services to families in
• VKC Family Outreach Center and other
VKC programs
• Vanderbilt Down Syndrome Clinic
• Vanderbilt Genetics Clinic
• Junior League Family Resource Center,
Monroe Carell Jr. Children’s Hospital at
Vanderbilt
Provides Futures Planning Workshop
Carol Rabideau, LCSW
Reading Clinic
• Provides individualized assessment and
tutoring for elementary-school children,
including students with intellectual or other
developmental disabilities
• Tests new research approaches for best
ways to teach children to read and to
assess reading
• Trains future teachers and community
professionals
Caresa Young, PhD, Coordinator
Behavior Analysis Clinic
• Support for individuals 3 to 18 years with
developmental disabilities and behavior
problems
• In-depth assessments
• Family-oriented, person-centered
interventions
• Applied Behavior Analysis training for
students
Nea Houchins-Juárez, MA, BCBA,
Coordinator
Next Step at Vanderbilt
• Individualized 2-year program of
postsecondary study for persons ages
18-29 with intellectual disabilities
• VU classes and life skills training
• Career training at Tennessee Technology
Center
• Internships on and off campus
• Participation in Vanderbilt Best Buddies
activities
• Support in transition to employment
• Partnership with Tennessee Council on
Developmental Disabilities
Tammy Day, Director
Behavioral Health and Intellectual
Disabilities Clinic at Vanderbilt
• Adolescents and young adults with co-occurring mental health
problems and intellectual or other developmental disabilities
• Behavioral and psychiatric consultation
• Joint project VKC & Department of Psychiatry’s Mental Health
Clinic
• Replicable model that includes training, research, and
services, supported by John Merck Fund
Elisabeth Dykens, PhD—PI
VKC Affiliated with VMC Clinics
Down Syndrome Clinics
Children (Pediatrics) and adults (Internal Medicine)
Genetics Clinic
Fragile X Clinic
Child Development Center
VKC Camps
• Camp Shriver Transitions and
Sports Camp –
Developmental Disabilities
• TRIAD Social Skills Camp – Autism
• Music Camp – Williams syndrome
and other developmental disabilities
Gretchen Herbert
Recreation and Arts Coordinator
Arts and Disabilities Program
• Arts exhibits by persons with
disabilities at Vanderbilt
Kennedy Center and in the
community
• Art workshops for persons with
disabilities
Gretchen Herbert
Recreation and Arts Coordinator
•
•
•
•
State and Mid-South
Information and Referral
Helpline 615-322-8529
6 disability information
specialists, 3 Spanishspeaking—Carole MooreSlater, MS, Director
www.familypathfinder.org
includes database
searchable by TN county
and service type, plus
national resources
Annual regional conferences
and technical assistance
Hispanic Outreach Program
• Pathfinder: 3 disability information specialists fluent in
Spanish
• Camino Seguro searchable databases for Middle, West, and
East TN – disability and social service agencies with a
Spanish-speaking staff member – a collaboration with
community partners
• Support group for Spanish-speaking parents of children with
autism
• Regional conferences
• Received 2009 AUCD Multicultural Council Award for
Leadership in Diversity
Access Nashville
• Identifies “accessibility friendly” restaurants. Results posted
on Nashville Convention and Visitors Bureau and Access
Nashville website
• Implemented through college-level service learning model
• Replication manual available
Disabilities, Religion, and
Spirituality Program
What we do:
• Provide disability-related training to current and
future religious and spiritual leaders and educators
• Support individuals with disabilities and their
families as they give expression to their religion or
spirituality
• Encourage disability service providers to consider
the religious and spiritual interests of the individuals
they serve
Disabilities, Religion, and
Spirituality Program
How we do it:
• Develop educational materials
• Provide disability-related trainings
• Host lectures and workshops
• Conduct research
• Provide disability-related theological field education
internships
Communication and Dissemination
•
Website http://kc.vanderbilt.edu
•
Discovery – quarterly newsletter
•
Products (e.g.,Tips fact sheets, manuals) and other support for research and
outreach projects
•
Research seminars, conferences, workshops and outreach events
(60-70 annually)
Monday Morning Message – weekly e-news
Jan Rosemergy, PhD, Director of Communication & Dissemination
Redesigned website:
http://kc.vanderbilt.edu
Quarterly Discovery newsletter and
weekly Monday Morning Message
Products (e.g.,Tips fact sheets, manuals)
and other support for research and
outreach projects
Research seminars, conferences, workshops, and outreach events (77 in FY 2007)
Vanderbilt Programs for Autism
Wendy Stone, PhD, Director
Vanderbilt Kennedy Center
Monroe Carell Jr. Children’s Hospital at Vanderbilt
TRIAD Mission
Treatment and Research Institute for
Autism Spectrum Disorders
• To offer autism-specialized services to the
community
• To provide state-of-the-art training to parents
and service providers
• To conduct research on the causes and treatment
of autism
TRIAD@vanderbilt.edu
http://TRIAD.vanderbilt.edu
TRIAD Services for Families
Diagnostic and Evaluation Services
Infant Toddler Screening Clinic
(under age 2)
Parent Support and Education
Program (PSEP) (5 and younger)
Autism School-Age Clinic (6 and older)
Services for Families
Education and Support Services
Ann and Monroe Carell Jr.
Families First Program
Free workshops for parents of children
with autism ages 2-5
Individualized Family Consultation
Program for parents of children 18
months-5 years
TRIAD Social Skills Camp for children,
adolescents, and young adults with
autism
Vanderbilt Autism Clinic
Toll-free 1-877-ASD-VUMC [273-8826]
Local 322-7565
• Offers free intake and referral services
• Provides information about Vanderbilt behavioral and medical
clinics, current clinical research projects, and community resources
• Assists families with coordination of services
Nina Harris, Autism Family Services Coordinator
TRIAD Professional Training
and Consultation
• School Consultation Services
• Collaborative Child-Focused Consultations
• Program Consultations
• TRIAD Teacher Training (TTT)
• TRIAD Workshops for educators, psychologists, and other
community professionals
TRIAD Professional Training
Screening Tool for Autism in Toddlers
and Young Children (STAT) Test Kit,
Online Tutorial, and STAT Workshops
START-MD training for community
pediatricians and related health
professionals - in collaboration with
Tennessee Chapter of American
Academy of Pediatrics and VKC
LEND Training Program
TRIAD Research Projects
• Identification of early behavioral and
biomedical markers
• Early social and communication
development
• Sleep behavior and biology
• Early intervention for core deficits
Autism Treatment Network (ATN)
Funded by Autism Speaks
• Offers coordinated medical care between pediatricians and
other medical specialists in neurology, metabolics, genetics,
and gastroenterology
• Forms a repository of clinical data used to develop standards
of care with 14 other universities across North America
Wendy Stone, PhD (Pediatrics)
Beth Malow, MD (Neurology)
TRIAD Clinical & Research
Networks
• Autism Treatment Network
• Marino Autism Research Institute (MARI)
• Baby Siblings Research Consortium
• Toddler Treatment Network
• Simons Simplex Collection
MIND Training Program
Mid-Tennessee Interdisciplinary Instruction in Neurodevelopmental Disabilities–
A Leadership Education in Neurodevelopmental Disabilities (LEND) Program
funded by DHHS Bureau of Maternal & Child Health
•
Prepares health professionals to meet complex needs of children with NRDD by
providing family-centered, community-based, culturally competent,
interdisciplinary services
•
Prepares health professionals to assume leadership roles and to develop
interdisciplinary team skills, advanced clinical skills, and research skills
Terri Urbano, MPH, PhD, Director Tyler Reimschisel, MD, Associate Director
MIND Training Program—LEND Grant
13 disciplines
• Audiology
• Pediatrics
• Deaf Education
• Physical Therapy
• Nursing
• Psychology
• Nutrition
• Social work
• Occupational Therapy
• Special Education
• Parent/Family Resources
• Speech and Language
Pathology
• Pediatric Dentistry
MIND Training Program—LEND Grant
• Five Middle Tennessee colleges and universities
– Belmont University, Meharry Medical College, Tennessee State
University, University of Tennessee, Vanderbilt University
• The Associate Director also coordinates the Developmental
Behavioral Pediatrics Residency Program
• Interactive telecommunication technology is used to promote
participation at distance sites at both pre-service and
continuing education levels
The Vanderbilt Kennedy Center
Working together with families and
communities for better tomorrows