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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