1. THE MANY FACES OF DEAF-BLINDNESS North Carolina Family Leadership Training April 21-22, 2008 Greensboro, NC

2. How We’ll Spend Our Time Together Today –National and State Deaf-Blind Program –Deaf-Blind Census –Etiologies Associated with Deaf-Blindness –Bringing it All Back to Your Role as a FS –Moving past the Etiology This Evening –Personal Goals and Supports –Follow-up Project Tomorrow –Deaf-Blindness: The Big Picture –Bringing it All Back to Your Role as a FS –Wrap-Up and Next Steps

3. What We Want to Accomplish Increase your understanding of: National and state resources related to deaf-blindness The diversity within the population The major etiologies of deaf-blindness The impact of deaf-blindness on overall development Communication Development and array of expressive and receptive communication forms The need for an individualized communication system

4. The Deaf-Blind Program Families NFADB AADB Hilton-Perkins Program Nat’l Coalition on DB North Carolina Deaf-Blind Project NCDB – TA & Information ServicesHKNC US Dept of Education Office of Special Education Programs (OSEP) From Birth To 22 years Birth to 3 Programs School Programs Young Adult Programs

5. The National Deaf-Blind Census National and State Definition of Deaf- Blindness Why Collect Census Information Process and Forms North Carolina and National Results Practice

6. National Definition of Deaf-Blindness Deaf-blindness means concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness. 34 CFR 300.8 (c) (2)

7. North Carolina Definition of Deaf-Blindness North Carolina currently uses the national definition of deaf-blindness for defining students in early childhood special education (ages 3-5) and school age special education (ages 6-21) programs. “Deaf blindness means concomitant hearing and vision impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness”. (IDEA, 2004) For infants and toddlers receiving Part C early intervention services, deaf-blindness is defined as: “Concomitant hearing and vision impairments or delays, the combination of which causes such severe communication and other developmental and intervention needs that specialized early intervention services are needed.”

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9. Etiologies Related to Deaf-Blindness eti·ol·o·gy “the cause of a medical or disability condition” Tell Us About Your Child Top Etiologies of North Carolina and Nationally Finding Information about Etiologies

10. Points to Consider About Etiologies To know an individual’s etiology is NOT to say that you know the individual Absence of a diagnosis can be a nagging mystery or fear Possible etiologies should not be casually mentioned Need to gather information to establish an appropriate educational program Need to gather information to be aware of delayed manifestations Pay attention to source and publication date of print and Internet resources Connecting with another person or family who shares the diagnosis can be invaluable Thanks to California Deaf-Blind Services, Fact Sheet #33

11. So What Do I Do Now Your Role as a Family Specialist Using HomeTalk with Families For additional copies (http://www.designtolearn.com/pages/HomeTalk.pdf)