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
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