Unlocking Developmental Secrets: Vanderbilt Kennedy Center

1. Solving the Mysteries of Development and Developmental Disabilities Elisabeth Dykens, PhD—Director Louis Muglia, MD—Associate Director

2. 1 in 6 children has a developmental disability The Vanderbilt Kennedy Center can help

3. 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

4. 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

5. 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.

6. Core Values • To pursue scientific knowledge with creativity and purpose • To educate and to disseminate information • To facilitate discovery • To translate knowledge into practice

7. What is the Vanderbilt Kennedy Center? • A national Eunice Kennedy ShriverIntellectual 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.

8. AUCD Network

9. InterdisciplinaryResearch, 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

10. Vanderbilt Kennedy Center Research To facilitate discoveries that make positive differences in the lives of persons with disabilities and their families

11. IDDRC Research Areas Nervous System Development Cognitive Processes and Interventions Mental Health Research and Interventions Impact of Disabilities Across the Life Span

12. 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

13. 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)

14. StudyFinder and Research Family Partners http://kc.vanderbilt.edu/studyfinder http://kc.vanderbilt.edu/RFP/ Lynnette Henderson, PhD, Research Registry & Recruitment Coordinator

15. 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

16. Research Training—VKC Affiliated • Graduate Neuroscience Training • Vision Research Training • Neurogenomics Research Training • Training in Biomedical MRI & MRS • Special Education Graduate Programs

17. 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

18. 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

19. 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

20. 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

21. 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

22. 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

23. 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

24. 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

25. 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

26. 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

27. 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

28. 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

29. 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

30. VKC Affiliated with VMC Clinics Down Syndrome Clinics Children (Pediatrics) and adults (Internal Medicine) Genetics Clinic Fragile X Clinic Child Development Center

31. 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

32. 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

33. 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

34. 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

35. 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

36. 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

37. 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

38. 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

39. Redesigned website: http://kc.vanderbilt.edu

40. Quarterly Discovery newsletter and weekly Monday Morning Message

41. Products (e.g.,Tips fact sheets, manuals) and other support for research and outreach projects

42. Research seminars, conferences, workshops, and outreach events (77 in FY 2007)

43. Vanderbilt Programs for Autism Wendy Stone, PhD, Director Vanderbilt Kennedy Center Monroe Carell Jr. Children’s Hospital at Vanderbilt

44. 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

45. 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)

46. Services for Families Education and Support Services Ann and Monroe Carell Jr. Families First ProgramFree 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

47. 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

48. 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

49. 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

50. TRIAD Research Projects • Identification of early behavioral and biomedical markers • Early social and communication development • Sleep behavior and biology • Early intervention for core deficits