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/Con-genital Compli-

cations15%

Post-Natal/Non-Congeni-tal Complica-

tions9%

Undetermined20% Hereditary/Chromosomal

Syndromes and Disor-ders40%

Prematurity16%

CHARGE Syn-

drome19%

Usher Syn-drome39%

Stickler Syndrome

6%

Other Vari-ous Syn-dromes

35%

1; Series1; 1034; 11%

2; Series1; 4058; 43%3; Series1; 1710; 18%

4; Series1; 1179; 13%

5; Series1; 1403; 15%

Post-Natal/Non-Congenital

Complications13%

Undetermined18%

Hereditary/Chromosomal Syndromes and Disorders

43%

Pre-Natal/Congeni-tal Complications

15% Prematurity11%

CHARGE Syn-

drome22%

Usher Syndrome

7%

Stickler Syndrome

3%

Other Vari-ous Syn-dromes

68%

0

5

10

15

20

25

30

35

40

45

Intellectual Disability

8%

Deaf-Blindness11%

Hearing Impairment

11%

Other Cat-egories

12%

Multiple Disabil-ities59%

Mild21%

Severe76%

Moderate3%

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

Northeast Region

Central Region

South River

Region

South Central Region

Central Region8%

South Central Region

16%

South River Region

34%

Southeast Region

9%

Northwest Region11%

Northeast Region

2%

Southwest Region21%