1. The Effects of Low Incidence and Wide Diversity
of Individuals with Deafblindness Ages Birth to
22 Years in Louisiana
Cindy Hoang & Michael C. Norman
Louisiana State University Health-New Orleans, School of Allied Health Professions,
Human Development Center – Louisiana Deafblind Project for Children and Youth
• Deafblindness is combined vision and hearing loss which can
affect human development and well-being.
• The combination of both auditory and vision sensory losses
creates a complex and unique disability that requires a group of
highly specialized professionals to assist in health management,
education matriculation, community entry, and environmental and
social adaptations. This group of professionals consists of but is
not limited to: healthcare professionals, teachers of visually
impaired and/or deaf and hard of hearing, interveners, orientation
and mobility therapists, assistive technology specialists, and
speech/language pathologists.
• National data indicates that the majority of the deafblind population
has some residual hearing and vision in addition to complex
medical, physical, and developmental challenges.
• Deafblindness occurs in less than 1% of U.S. students with
disabilities; consequentially, it is considered a “low incidence
disability.”
• The deafblind population has another distinct characteristic known
as “wide diversity,” or overall functioning ranging from normal to
severely impaired.
• The etiology, severity, and educational classification differ from
child to child.
• The Louisiana Deafblind Registry and The National Center on Deaf-
Blindness Child Count are state and national databases that
provide data regarding the incidence of deafblindness in
individuals ages birth to 22, the classification of hearing and vision
loss, the types of additional disabilities that may be present, and
the etiologies of deafblindness that are associated with this
population.
• The causes of deafblindness that become apparent at birth include
childbirth complications, congenital syndromes, and prematurity.
During the developing years and adult life, the causes of
deafblindness include traumatic injuries and inherited conditions.
• There are over 10,000 individuals ages birth to 22 years in the
United States who are classified as deafblind. Within this total,
approximately 105 individuals reside in Louisiana.
• Approximately 90% of the Louisiana students identified with
deafblindness have additional disabilities which may include
behavioral, developmental, health, and/or motor disabilities.
• As a low incidence/wide diversity disability, deafblindness creates
programmatic challenges regarding obtaining assessments,
training, programming, and other needs necessary for full
inclusion of the deafblind in our society.
Part B Classification
Education Setting
Regions
Conclusions
Etiologies in Louisiana vs National
• In Louisiana, most (40%) students with deafblindness have etiologies related to
hereditary/chromosomal syndromes and/or disorders. Within this group, Usher Syndrome as
an etiology represents 39% of individuals ages birth to 22 years.
• Usher Syndrome as an etiology of deafblindness represents a greater segment of the total
population in Louisiana as compared to the total national population.
• The South Central Region and Southwest Region have the largest amount of individuals with
Usher Syndrome.
• The data provided are presented to develop public awareness about a low incidence and wide
diversity disability, deafblindness.
• The Louisiana Deafblind Project for Children and Youth is the federally funded agency that
provides technical assistance to individuals, families, schools, and school districts regarding
the education of individuals with deafblindness.
Introduction
.
This research project was supported through the Patrick F. Taylor Foundation.
Pre-
Natal/Congenital
Complications
15%
Post-
Natal/Non-
Congenital
Complications
9%
Undetermined
20% Hereditary/Chromosomal
Syndromes and
Disorders
40%
Prematurity
16%
Other
42%
CHARGE
Syndrome
19%
Usher
Syndrome
39%
Stickler
Syndrome
6%
Other
Various
Syndromes
35%
Post-
Natal/Non-
Congenital
Complications
13%
Undetermined
18%
Hereditary/Chromosomal
Syndromes and
Disorders
43%
Pre-
Natal/Congenital
Complications
15%
Prematurity
11%
Other
71%
CHARGE
Syndrome
22%
Usher
Syndrome
7%
Stickler
Syndrome
3%
Other
Various
Syndromes
68%
Intellectual
Disability
8%
Deaf-Blindness
11%
Hearing Impairment
11%
Other
Categories
12%
Multiple Disabilities
59%
0
5
10
15
20
25
30
35
40
45
Mild
21%
Severe
76%
Moderate
3%
Mild = Inside regular class
80% or more of day
Moderate = Inside regular
class 40% to 79% of day
Severe = Inside the
regular class less than
40% of day