Kelly E. Lusk, Ph.D, CLVT, Terry Schwartz, M.D., and Rebecca Coakley, M.A., CLVT

1. Cincinnati Children’s Vision Rehabilitation Program – Cerebral Palsy (CCVRP-CP): An interdisciplinary model for serving children with low vision and physical disabilities (Formerly CLEAR-CP) Kelly E. Lusk, Ph.D, CLVT, Terry Schwartz, M.D., and Rebecca Coakley, M.A., CLVT Funded in part by a Perlman Center grant from The Ettlinger Trust Fund via United Way

2. Topics to consider • What is CCVRP-CP and who are the Key Collaborators? • What is Low Vision? What is Cortical Visual Impairment (CVI)? • What is Cerebral Palsy (CP)? • How do young children learn and interact with their environment? • How does low vision/CVI interact with Cerebral Palsy(CP)/other physical disabilities? • Case Studies • Family Feedback • Discussion

3. What is CCVRP-CP? Interdisciplinary vs. multidisciplinary Vision (Ophthalmology, Education/Rehabilitation) Perlman Center (OT/PT, Assistive Technology) Instruction and Follow-up Family Education Sessions (Guess who gets the most out of these?)

4. CCVRP-CP Key Collaborators Aaron W. Perlman Center Linda Wnek, Sr. Director (PI) Katherine Eingle, MOT, OTR/L Elizabeth McCarty, OTR/L, ATP Kihmberly Wilmer, MS, OTR/L Patricia Gribben, OTR/L Pediatric Ophthalmology Terry Schwartz, MD Becky Coakley, MA, CLVT Mel Klayer, COA Cincinnati Assoc. for the Blind and Visually Impaired (CABVI) Anna Ruhmkorff

5. What is low vision? • A person with low vision is “a person who has measurable vision but has difficulty accomplishing or cannot accomplish visual tasks, even with prescribed corrective lenses, but can enhance his or her ability to accomplish these tasks with the use of compensatory visual strategies, low vision devices, and environmental modifications” (Corn & Lusk, 2010, p. 4-5). • Low vision devices include optical, non-optical, and electronic devices.

6. Cortical Visual Impairment (CVI)(Roman-Lantzy, 2007) • Other names: Cerebral Visual Impairment, Neurological Visual Impairment, etc. • Definition: Visual impairment caused not by ocular visual impairment, but by damage to the brain or visual pathways. • Causes: Prematurity, neurological disorders, acquired brain injury • Characteristics

7. Characteristics of CVI • Distinct color preference • Attraction to movement • Visual latency • Visual field preferences • Difficulties with visual and environmental complexity • Light-gazing or non-purposeful gaze • Difficulties with distance viewing • Absent or atypical visual reflex responses • Difficulties with visual novelty • Absence of visually guided reach

8. What is Cerebral Palsy (CP)? • A number of disorders of the developing brain affecting body movement, posture and muscle coordination. • Caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during or shortly after birth; during infancy; or during early childhood. • Not a disease, not progressive, nor communicable. (From: http://www.ucp.org/uploads/media_items/cerebral-palsy-fact-sheet.original.pdf United Cerebral Palsy Website)

9. Children with a Visual Impairment and a Physical Disability (specifically CVI and CP) Children with a visual impairment Children with a physical disability Children without CVI Children with CVI Children with CP Children without CP Children with CVI and CP

10. How do Young Children Learnand Interact with Their Environment? • Primary mode of interaction • Visual observation • Secondary modes • Motor skills (e.g., pointing, reaching, crawling) • Communication is visual and non-verbal • Complicating factors: • Physical disability that inhibits motor control • Ability/awareness of nonverbal communication

11. Low Vision/CVI and CP/Physical Disability • Vision helps to develop motor skills • Motor skills help to develop visual skills • How can we as an interdisciplinary team work to improve outcomes for children with both a visual impairment and a physical disability?

12. Case Studies

13. Family Feedback Rate the quality of the evaluation Rate the information you received What did you like most? What did you like least? What could we do differently? Would you recommend CCVRP-CP to other families? Other comments/questions

14. Discussion - Feedback on our model Your experiences/Similar models? Thoughts for the future

15. References and Resources Ferrell, K. A. (Spungin, S. J., Ed.) (2011). Reach out and teach: Helping your child who is visually impaired learn and grow. New York: AFB Press. First steps: A handbook for teaching young children who are visually impaired. (1993). Los Angeles: Blind Childrens Center. Hatlen, P. (1996). The core curriculum for blind and visually impaired students, including those with additional disabilities. RE:view 28, 25-32. Holbrook, M. C. (Ed.) (1996). Children with visual impairments: A parent’s guide. Bethesda, MD: Woodbine House, Inc.

16. References and Resources, cont’d Pogrund, R. L., Fazzi, D. L., & Lampert, J. S. (Eds.) (1992). Early focus: Working with young blind and visually impaired children and their families. New York: AFB Press. Roman, C. (2010). CVI Complexity Sequences: Guidelines for use. Louisville: American Printing House for the Blind. Roman-Lantzy, C. (2007). Cortical visual impairment: An approach to assessment and intervention. New York: AFB Press.

17. References and Resources, cont’d Sapp, W. & Hatton, D. (2005). Communication and Emergent Literacy: Early intervention training center for infants and toddlers with visual impairments. Chapel Hill, NC: FPG Child Development Institute.

18. Questions?

19. Thank you! kelly.lusk@cchmc.org