Solving the Mysteries of Development and Developmental Disabilities - PowerPoint

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					                      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 Prader-
  Willi 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 (FUN-
Families 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   Carol Rabideau, LCSW
  Vanderbilt

Provides Futures Planning Workshop
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 Spanish-
                speaking—Carole Moore-
                   Slater, 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   Monday Morning Message – weekly e-news

•   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)

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