THE MANY FACES OF DEAF-BLINDNESS The Many Faces of Deaf-Blindness

Deaf-Blindness: The Big Picture  National and State Deaf-Blind Program  The Deaf-Blind Census  Etiologies related to Deaf-Blindness  Deaf-Blindness & Communication  Deaf-Blindness & the Family  Social implication of deaf-blindness

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 communication and social development The impact of deaf-blindness on quality of life

The Deaf-Blind Program Families NFADB AADB Hilton-Perkins Program Nat’l Coalition on DB State 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

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 Project Reach Technical assistance to families, classrooms, medical personnel, and others through technical assistance Distribute general information and specific information that supports child-specific technical assistance Connect families with other families and available services Contribute to national projects, such as research, census, and university training programs in Illinois

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 (c) (2)

Illinois Definition of Deaf-Blindness Illinois’ school code states “Persons with deaf-blindness are persons who have both auditory and visual impairments, the combination of which causes such severe communication and other developmental, educational, vocational, and rehabilitation problems that such persons cannot be properly accommodated in special education or vocational rehabilitation programs solely for persons with both hearing and visual disabilities”. 105 ILS 5/ (service center for deaf-blind persons) A definition of visual impairment and auditory impairment follows, as does the establishment of the Philip J. Rock Center and School and the Advisory Board for Services for Persons who are Deaf-blind

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

Illinois Etiologies - Major Categories

Illinois Etiologies - Chromosomal Disorders

Illinois Etiologies - Pre-natal Causes

Illinois Etiologies - Post-natal Causes

Age ranges

There are 102 counties in the state of Illinois

60 Illinois Counties currently have students served by Project Reach Adams 1 Bond 1 Bureau 9 Carroll 1 Champaign 16 Christian 3 Coles 2 Cook 151 DeKalb 4 Douglas 2 DuPage 31 Edgar 1 Effingham 1 Fayette 1 Ford 1 Franklin 1 Fulton 2 Greene 1 Grundy 2 Hancock 1 Henry 3 Iroquois 2 Jersey 1 JoDavies 1 Kane 40 Kankakee 3 Kendall 4 Knox 1 Lake 14 LaSalle 10 Lawrence 3 Lee 1 Livingston 2 Logan 3 Macon 8 Madison 10 Marion 1 McDonough 1 McHenry 4 McLean 5 Menard 1 Montgomery 2 Morgan 2 Ogle 4 Peoria 5 Piatt 1 Pike 2 Putnam 1 Richland 1 Rock Island 3 Sangamon 8 St. Clair 11 Stephenson 1 Tazewell 4 Vermillion 5 Whiteside 5 Will 22 Williamson 2 Winnebago 15 Woodford 1

Project Reach eligible youth by county 0 = 1 = 2-5 = 6-10 = = = 50 plus =

Students by Region

Northeast = Northwest = Central = Southern = Deaf-blind Specialist Regions

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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