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

Coordinator , PhD, Research Registry & Recruitment

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 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-Ju árez

, 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 [email protected]

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 • Deaf Education • Nursing • Nutrition • Occupational Therapy • Parent/Family Resources • Pediatric Dentistry • Pediatrics • Physical Therapy • Psychology • Social work • Special Education • Speech and Language Pathology

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