Developmental Milestones in Young Children and Infants with Deafblindness

1. Developmental Milestones in Young Children and Infants with Deafblindness Julie Durando, NCLVI Fellow University of Northern Colorado Julie.Durando@unco.edu Kay Alicyn Ferrell, Ph.D. National Center on Severe & Sensory Disabilities

2. Objectives 1). To share quantitative data on the achievement of developmental milestones in infants and children who are deafblind, and 2). To discuss the implications of the findings for early intervention and educational planning for young children who are deafblind.

3. Project PRISMA National Collaborative Study on the Early Development of Children with Visual Impairments

4. Collaborating Agencies • Anchor Center for Blind Children • Blind Childrens Center • Dallas Services for Visually Impaired Children • The Foundation for Blind Children • New Mexico School for the Visually Handicapped Preschool • Visually Impaired Preschool Services

5. Laurie Hudson Earl Palmer Tom Miller Mirna Pineda Debbie Gleason Mary Ellen McCann Pam Crane Marion Yoshida Donald P. Bailey David Warren Sally J. Deitz Lynne Webber Prism People Deborah Hatton J Greeley Jim Warnke Allen Huang Corinne Kirchner Janis Mountford Verna Hart Sharon Bensinger Madeline Milian Marianne Riggio Chris Tompkins Terry Goldfarb Bill Muir Stuart Teplin Amy Murphy Suze Staugus Richard Gibboney Schel Nietenhoefer Kelly Parrish John Jostad Diane Pena Carol Danielson Rose Shaw Fran Black Tina Sustaeta Carol King Beth Teeters Betty Dominguez Brenda Hoy Kathy Tompkins Dean Tuttle Patrika Griego Patti Watts Jan Nash Din Tuttle Dana King Ann Estensen Debbie Symington Sharon Nichols

6. Home States California Texas Colorado 5.4% 11.4% 17.8% Kentucky 13.4% Arizona Massachusetts 31.2% 6.4% New Mexico 14.4%

7. Subject Selection • New referrals to collaborating agencies • Less than 12 months’ CA • Diagnosed visual impairment, with or without additional disabilities and/or health conditions

8. Teller Acuity Cards Battelle Developmental Inventory Vineland Scales of Adaptive Behavior Temperament Scales Milani-Comparetti Motor Development Screening Test ABILITIES Index Medical and health questionnaires Child Measures

9. Family Measures • Demographic information • Parenting Stress Index • Family Resource Scale • Home Observation and Measurement of the Environment (HOME)

10. Service Measures • Amount, type, and extent of special education and related services • Parent satisfaction with services • Primary interventionist’s perception of Family’s participation in services

11. Assessment Protocol • At referral • 4 months • 8 months • 12, 18, 24, 36, 48 months • Project evaluators assess children • Parents complete packets and submit directly to PRISM

12. Training of Project Evaluators

13. Number of Assessments

14. BDI Age Scoresby Additional Disability

15. Project Prism Final Report • http://www.unco.edu/ncssd/research/PRISM/default.html

16. Children with DeafblindnessAge of Entry Mean = 8.60 months Standard Deviation = 2.33 months Youngest at entry = 3 months Oldest at entry = 12 months N = 25

17. Ethnicity of Children with Deafblindness (n=25)

18. Child’s Visual Diagnosis • Cortical visual impairment = 8 • Optic nerve hypoplasia = 3 • Retinopathy of prematurity = 2 • Colobomas = 2 • Glaucoma = 1 • Myopia = 1 • Optic atrophy = 1 • Cataracts = 1 • Visual diagnosis not known = 6

19. Severity of Additional Impairments

20. Developmental Milestones • Reaches for and touches object • Generally follows directions related to daily routine • Transfers object from hand to hand • Removes simple garment without assistance • Sits alone without support 5 seconds • Walks without support 10 feet • Produces 1 or more C-V sounds

21. Developmental Milestones (Continued) • Copies circle • Plays peek-a-boo • Uses pronouns I, you, me • Moves 3 or more feet by crawling • Walks down stairs alternating feet • Feeds self bite-size pieces of food

22. Developmental Milestones (Continued) • Uses 2-word utterances to express meaningful relationships • Searches for a removed object • Repeats two-digit sequences • Points to at least one major body part when asked • Controls bowel movements regularly

23. Demonstration of Milestones

24. Sequence Transfer Object Hand to Hand was Demonstrated (n = 11)

25. Sequence Feeds Self Pieces of Food was Demonstrated (n = 7)

26. Percentage Demonstrating Milestone

27. Percentage Demonstrating Milestone

28. Percentage Demonstrating Milestone

29. Implications • Development for children with deafblindness is especially unique • Holistic, multi-disciplinary approach to assessments, programming and intervention • Use caution when interpreting assessments

30. Factors in Development • Degree of functional vision • Amount of hearing • Additional Impairments • Age of onset of each impairment • Intervention • Environment

31. Holistic, Multidisciplinary Approach • Areas of development are inter-related • Team includes parentsand professionals, including persons trained in sensory impairments • Consider factors and their impact on development

32. Interpret Assessmentswith Caution • Know limitations of standardized assessments • Norms usually do not include children with deafblindness • Modifications or excluding items • Does protocol allow child to demonstrate abilities? • Guiding intervention • Consider a different approach to intervention if development seems stalled

33. Acknowledgements Project PRISM was supported by CFDA 84.0203C — Field-Initiated Research H023C10188 Julie Durando is a National Center for Leadership in Visual Impairment (NCLVI) Fellow supported by the NCLVI and OSEP Cooperative Agreement H325U040001