CVI in Infants and Toddlers: Collaboration for EI Teams CVI Symposium May 28, 2015 Brenda Allair, TVI

 Children with diagnosed conditions associated with CVI (Seizure disorder, PVL (white matter disorders), HIE)  Children who display visual behaviors characteristic of CVI: light-gazing, appearing to look “through” people, preference for colors such as red/yellow  Children for whom there are concerns about VI despite a normal eye exam Identifying Infants and Toddlers with CVI or “At Risk”

 If a child is diagnosed with CVI, early referral is crucial to visual development:  Early Referral  Early Intervention  Increased Visual Functioning  Connect family to local Early Intervention program  Referral to Perkins for Vision Services  When in doubt, REFER Early Intervention Specialty Services: Vision

 Make sure the family is aware that you are referring the child to Perkins for concerns about vision  Have a copy of the eye report, if available  Gather information about the child (additional medical diagnoses, specific areas of concern, EI Program and contact person if known)  Contact Perkins Social Workers for Intake:  Ruth Silverstein  Cristina Valente Referral Process for Perkins

Collaboration Model: A Case Study

 CF was referred to Perkins before his first birthday for concerns about visual development  Diagnosed with a genetic condition and related seizure disorder  Originally diagnosed with strabismus  Concerns about CVI due to specific visual behaviors observed by parents and TVI  Diagnosed with CVI by neurologist and ophthalmologist Referral and Diagnosis

CF’s TEAM: OT PT SLP EI Developmental Specialist Autism Specialists TVI Playgroup Outside Therapists (Feeding, PT) And most importantly…FAMILY! Early Intervention Team

 Each Team member uses a strength-based approach  All Team members work together to integrate strategies across disciplines  “Risk-Taking” – trying novel ideas as a Team, with a systematic approach for evaluation  Recognizing that “one size fits all” doesn’t work, especially for children with complex needs  Team respects and models parents’ rights and responsibilities Creating a Successful Team

 Consistent Team meetings (every 4-6 weeks)  Parents at center of conversation  Goal-setting and evaluation of interventions  Trouble-shooting  Creating a “primary goal” filtered through each specialist’s own lens  Creating space for conversations and resource- sharing Collaboration Meetings: Critical Components

Implementing Strategies Across Services Goal: CF would choose from 2 pictures to indicate a preference TVI worked to design appropriate size, color and background for visual attention OT encouraged positioning for best use of motor skills PT provided support to increase use of tool while standing SLP supported increased use for communication ABA used the tool consistently throughout intensive services

 “Visual Demands” chart – collaboration among all Team members  Positioning  Color of Materials  Method of Presenting Materials  Setting Up Environment  Co-Visits critical to success and progress Implementing Strategies

 Developed an “All About Me” document to share with school  Routine-based  Parent-driven  Team Input around strategies and skill areas  Supported parents in generating questions/concerns about transition  Provided tools for advocacy  Discussed Transition EARLY AND OFTEN  Transition is an ongoing process, not a point in time Teamwork and Transitions: EI Team

 Key player for transition to school services  Early and ongoing connection with family and TVI  Support school in understanding impact of CVI  Connect families with additional resources and with other families (MAPVI, WonderBaby, etc.)  Provide tools and information for advocacy  Information about eye appointments, importance of eye reports, access to medical information  Help families with ongoing needs for support beyond EI Teamwork and Transition: MCB Role

 Mass Family TIES list of Early Intervention Programs (  Perkins Infant/Toddler Program Referrals  Ruth Silverstein  Cristina Valente  WonderBaby (  APH CVI Website ( Next Steps and Resources

CONTACT INFORMATION: Brenda Allair, TVI Perkins School for the Blind