THE MANY FACES OF DEAF-BLINDNESS The Many Faces of DeafBlindness

DeafBlindness: The Big Picture  National and State DeafBlind Program  The DeafBlind Census  Etiologies related to DeafBlindness  DeafBlindness & Communication  DeafBlindness & the Family  Social implication of DeafBlindness

What We Want to Accomplish Increase your understanding of: National and state resources related to DeafBlindness The diversity within the population The major etiologies of DeafBlindness The impact of DeafBlindness on communication and social development The impact of DeafBlindness on quality of life

The DeafBlind Program Families NFADB AADB Hilton-Perkins Program Nat’l Coalition on DB DeafBlind Central 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

Who We Are & What We Do NCDB Technical assistance & training to deaf-blind projects, states and families Develop and distribute information Connect national, state and local resources to improve services Coordinate activities between universities that are training teachers DB Central Training & technical assistance to families, schools and agencies to promote best practices Disseminate information related to best practices in the field of DeafBlindness Support families by connecting them to resources and other families of children who are DeafBlind

National Definition of DeafBlindness 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 (c) (2)

Michigan Definition of DeafBlindness The State of Michigan’s definition of a child who is DeafBlind is as follows: R DeafBlindness defined; determination. Rule 17. (1) DeafBlindness means concomitant hearing impairment and visual impairment, the combination of which causes severe communication and other developmental and educational needs that cannot be accommodated in special education programs without additional supports to address the unique needs specific to DeafBlindness. DeafBlindness also means both of the following: (a) Documented hearing and visual losses that, if considered individually, may not meet the requirements for visual impairment or hearing impairment, but the combination of the losses affects educational performance. (b) Such students function as if they have both a hearing and visual loss, based upon responses to auditory and visual stimuli in the environment, or during vision and hearing evaluations.

Etiologies Related to DeafBlindness eti·ol·o·gy “the cause of a medical or disability condition” Tell Us About Your Child Top Etiologies Nationally and in Michigan Finding Information about Etiologies

About Michigan

Michigan Etiologies - Major Categories

Michigan Etiologies - Chromosomal Disorders

Michigan Etiologies - Pre-natal Causes

Michigan Etiologies - Post-natal Causes

Age ranges

There are 83 counties in the state of Michigan

56 Michigan Counties currently have students registered with DB Central Allegan—3 Alpena—1 Baraga—2 Barry—2 Berrien—4 Branch—1 Calhoun—5 Cass—5 Cheboygan—1 Chippewa—2 Clare—1 Delta—1 Eaton—3 Genesee-25 Grand Traverse-2 Gratiot—4 Hillsdale—1 Houghton—1 Huron—2 Ingham—20 Ionia—2 Iosco—1 Isabella—6 Jackson—13 Kalamazoo—7 Kalkaska—2 Kent—35 Lapeer—5 Lenawee--1 Livingston—6 Mackinaw—3 Macomb—9 Manistee—1 Marquette—4 Mecosta—3 Menominee—1 Midland—2 Monroe—5 Montcalm—2 Muskegon—5 Newaygo—1 Oakland—37 Ontonagan—1 Otsego—1 Ottawa—24 Roscommon—1 Saginaw—4 Sanilac—5 Shiawasee—1 St. Clair—5 St. Joseph—2 Tuscola—2 VanBuren—5 Washtenaw—16 Wayne—42 Wexford--2

Etiology Activity (20 minutes) 1. Pair up with another participant and choose one etiology to explore. 2. Use the Internet to research and answer some or all of the following questions about the etiology: What are some of the unique characteristics of the etiology: vision, hearing, physical, cognitive, other Are their online or face-to-face supports available for family members? What are these? Is there medical and education information available on the Internet? 3. Share what you find out with the group.

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 Pay attention to the 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

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