the many faces of deaf-blindness the many faces of deaf-blindness
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THE MANY FACES OF DEAF-BLINDNESS
The Many Faces of The Many Faces of Deaf-BlindnessDeaf-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-PerkinsProgram
Nat’l Coalition on
DB
State Deaf-Blind Project
NCDB – TA & Information Services
HKNC
US Dept of EducationOffice of Special Education
Programs (OSEP)
From
Birth
To 22 years
Birth to 3
Programs
School Program
s
Young Adult
Programs
Who We Are & What We DoNCDB
• 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 ofDeaf-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)
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 5/14-11.01 (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 toDeaf-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
2007 Top Etiologies - National and Illinois
11.7
% 13.2
%
19.8
%
5.4%
7.0%
2.2% 3.
4%
2.7%
4.3%
1.9% 2.
8%
2.3% 3.
3%
12.5
%
12.5
%
12.0
%
8.6%
6.8%
5.4%
4.9%
4.9%
4.9%
3.2%
2.7%
2.4%
2.0%
0%
5%
10%
15%
20%
25%
Complicat
ion o
f Pre
maturity
OTHER: Her
edita
ry S
ynd/
Diso
rder
s
No Det
erm
inatio
n of
Etio
logy
OTHER: Pre
-Nat
al/ C
ongen
ital C
omplic
ation
s
CHARGE ass
ociat
ion
Usher
I sy
ndro
me
Cytom
egalo
virus
(CM
V)
Men
ingitis
OTHER: Post-
Natal/ N
on-C
ongen
ital
Severe
Head
Injury
Hydro
cepha
ly
Down sy
ndro
me
(Tris
omy 2
1 sy
ndro
me)
Micr
oceph
aly
National Illinois
0
50
100
150
200
250
300
350
400
450
Total 437
Hereditary/ChromosomalDisorders 166PrenatalCongenitalComplications 88Post Natal Complications 68
Prematurity 55
Unknown 47
Data Missing 13
Illinois Etiologies - Major Categories
Illinois Etiologies - Chromosomal Disorders
0
5
10
15
20
25
30
35
40
45
50
1st Qtr
CHARGE
Cornelia DeLange
Down
Goldenhar
Stickler
Trisomy 13
Usher I
Usher II
Other
Illinois Etiologies - Pre-natal Causes
02
4
68
1012
1416
1820
Cytomegalovirus
Hydrocephaly
Microcephaly
Rubella
Toxoplasmosis
Illinois Etiologies - Post-natal Causes
0
2
4
6
8
10
12
14
16
18
20Asphyxia
Encephalitis
Hypoxic IschemicEncephalopathy
Meningitis
Severe HeadInjury
Other
Age ranges
0
20
40
60
80
100
120Birth to 2
3 to 5
6 to 11
12 to 14
15 to 18
19 to 22
There are 102 counties in the state of Illinois
60 Illinois Counties currently have students served by Project Reach
Adams 1Bond 1Bureau 9Carroll 1Champaign 16Christian 3Coles 2Cook 151DeKalb 4Douglas 2DuPage 31Edgar 1Effingham 1Fayette 1Ford 1
Franklin 1Fulton 2Greene 1Grundy 2Hancock 1Henry 3Iroquois 2Jersey 1JoDavies 1Kane 40Kankakee 3Kendall 4Knox 1Lake 14LaSalle 10
Lawrence 3Lee 1Livingston 2Logan 3Macon 8Madison 10Marion 1McDonough 1McHenry 4McLean 5Menard 1Montgomery 2Morgan 2Ogle 4Peoria 5
Piatt 1Pike 2Putnam 1Richland 1Rock Island 3Sangamon 8St. Clair 11Stephenson 1Tazewell 4Vermillion 5Whiteside 5Will 22Williamson 2Winnebago 15Woodford 1
Project Reach eligible youth by county
• 0 =
• 1 =
• 2-5 =
• 6-10 =
• 11-20 =
• 21-40 =
• 50 plus =
Students by Region
Northeast - 203
Northwest - 53
Central - 84
Southern - 99
• 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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