1. Louisiana Deafblind Project Cassondra Glausier Coordinator
Deafblindness: Defining, Educating & Empowering Children Resources for families
Louisiana Deafblind Project
Cassondra Glausier
Coordinator
This is a template for each project to populate and tailor to their needs. 1

2. Goals of Training Project Updates What deafblindness?
Associated terminology
Prevalence of deafblindness
Causes of deafblindness
The challenges dual sensory impairments
Accurate identification practices
Resources for families and parents
Presenter’s Notes”
Tailor goals according to the needs of your presentation.

3. Louisiana Deafblind Project
Technical Assistance & Dissemination
Transferred To the Human Development Center
Office of Special Education Programs (5year)
Children birth through 21 years old
Both vision & hearing loss present
Services are at no cost & are confidential
A Deafblind Project is located in every state

4. LSU Health Science -NOLA
Aftrer 20 years at DOE the dbp has moved to a university setting.

5. Project Services Training, Support, and Resources
Information and Referral
IEP & Transition Teams
Technical Assistance to Families & Educators
Statewide Project & Registry
Resource Library
LA Deafblind Project Website
Project Facebook Page

6. Why refer to the project?
Project website & other TA documents
Print or video resources
SPARKLE Project
Family-to-family network and call
Project sponsored trainings
Help in finding resources
Home and/or school visits
Facebook Page Resources

7. Information about the project
How do you refer a child?
What happens after a child is referred?
What assistance can be provided?
How does a family or service provider get assistance?
Where is assistance provided?
Is there a cost?
What are the benefits?
Presenter’s Notes:

8. What happens after referral?
Referral packet reviewed
Potential phone calls for clarification on some questions
Intro binders mailed to parent and service provider: TA request forms, all tip sheets, newsletter & more
Introductory phone call and/ or visit
Presenter’s Notes:
State specific

9. Presenter’s Notes:
Many times the person that is most recognized / remembered as being deafblind is Helen Keller. While Helen and her teacher Annie Sullivan played an important role in increasing awareness of the educational needs of someone who is deafblind, there are many very different faces of combined vision and hearing loss.

10. Federal Definition of Deafblindness
“Concomitant of hearing and visual impairments, the combination of which causes such severe communication, developmental and education problems that the individual cannot be accommodated in programs solely for individuals who are deaf or blind.”
(2004, IDEA)
Presenter’s Notes:
You may want to note that most teachers of children who are blind/visually impaired have overview training in deafblindness but most often do not have the equivalent of a deafblind specialist – and the same teachers of the deaf/hard of hearing. These professionals, like other educators and related service providers, will need training specific to working with a child who is deafblind.

11. The Challenge of Deafblindness
Deafblindness is a disability of ACCESS to information and communication.
Presenter’s Notes:
Access = incidental learning, viewing items in a room / classroom, seeing print
Communication: hearing sounds or other’s voices, watching body language, etc.

12. Project Definition of Deafblindness
Children and youth with deafblindness have a combination of hearing AND vision loss that limits access to auditory and visual information, impacts communication, or restricts participation in daily activities and environments.
The effects of the combined losses, even if both are mild, create unique challenges for the child, family, & educator.
Presenter’s Notes:
The definition on this page may directly from your state’s educational statutes and/or an umbrella definition that your project uses.

13. Prevalence of Deafblindness
Affects 10,000 children across USA
3 in 100,000 births
91 children in Louisiana
70 known causes
Louisiana high impact of Usher Syndrome
Any level of the dual sensory loss
Presenter’s Notes:

14. The Diversity of “Deafblindness”
Although “deafblind” implies a total absence of vision and hearing, this is not the case with most individuals who are deafblind.
Most children and youth who are deafblind have some useable hearing and/or vision.
There is no single profile of a learner who is deafblind.
Presenter’s Notes:
Discuss the individuality of deafblindness with examples of children / students on your state census.
Detail different combinations of sensory loss to make the point on diversity: blind with mild loss; deaf with cortical visual impairment, etc.
“Once you have met one individual with deafblindness, you have met ONE individual with deafblindness.”

15. Faces of Deafblindness
Presenter’s Notes:
Include photos of children and youth in your state (with appropriate permission) to highlight the diversity of deafblindness.

16. An individual who is deafblind is not:
A deaf individual who cannot see Or
A blind individual who cannot hear
Deafness + Blindness = Deafblindness

17. Other Terminology Deafblindness / Deaf-Blindness
Co-Occurring Sensory Loss
Dual Sensory Impairment / Loss
Combined Vision and Hearing Loss
Multidisabled (with sensory loss)
Presenter’s Notes:
Different states may use different umbrella names. Parents may have a preference for how their child’s dual sensory loss is described..

18. Primary Causes of Deafblindness
Usher Syndrome
CHARGE
Congenital Rubella
Severe Head Injury
Stroke
Cytomegalovirus
Meningitis
Undetermined
Hydrocephaly
Trisomy 21
Cornelia de Lange
Fetal Alcohol Syndrome
Maternal drug use
Tumors
Hydrocephaly
Direct Trauma
Prenatal/Congenital
Postnatal/Noncongenital
Microcephaly

19. Critical Factors that Influence the Impact of Deafblindness
Age at onset of loss
Degree, type, and stability of vision and hearing loss
Accompanying disabilities (90%)
Support variables
Presenter’s Notes:
Support variables might include the family’s level of support from the community, the church/temple, the extended family etc.

20. Low Incidence Challenges
Children under identified
Children under referred
Under a different category
Community awareness
Understanding of the term deafblind
Accommodations consider both losses
Lost in multiple disability category or families not ready to accept or cope with the combo VI HI

21. Importance of Early Identification
Address sensory loss early to optimize sensory function.
Appropriate intervention of developmental and/or academic challenges.
Access and communication needs are identified and supported through strategies and possible adaptive equipment.
Presenter’s Notes:
Resource – Early ID article
May want to give examples of identification at an early age with a congenital dual loss versus an older student who has a loss such as later vision loss with Usher syndrome.

22. Impact of Deafblindness
Sensory
Social and Emotional / Relationships
Communication
Receptive
Expressive
Motor / Movement
Limited access to information
Cognitive / Learning / Academics
Activities of Daily Living / Self Help
Presenter’s Notes:
Be sure to describe that this is a not a sequential list – but that each domain will be discussed separately. One domain influences the next.
The project may want to switch the order of the slides per their perception of what comes first etc.

23. Learning Impact
A great deal of learning comes from observing and imitating of what others are doing.
Child may develop unique learning style.
Concept development
External / internal world confusion.
May develop fragmented or distorted concepts due to lack of full experience.
Abstract concepts may be more difficult to learn
Presenter’s Notes:
External / internal world confusion – learner’s understanding of where he or she leaves off and the world begins.
Abstract concepts – the light from the moon, a cobweb, etc.
Note under concept development: distinguish between a concrete and an abstract concept. Concrete = apple. Abstract = time tomorrow.
Important to set the stage that a primary focus of teaching is preteaching the needed concepts of a classroom task or lesson. Concepts will need to be taught directly – this is our work. Once taught, we must also focus on generalization. Our work is never done in this area of teaching.
Concept article from DB Perspectives by Barbara Miles would be a good tandem resource.<
Give definitions of these words. Come up with vignettes per definition.

24. Look for us on Facebook

25. Family Resources Project SPARKLE – www.sparkle.usu.edu
Family Engagement Network

27. National Resources National Consortium of Deafblindness
American Association of Deafblind
National Association for the Deafblind
Helen Keller National Center
Texas School for the Blind/Visually Impaired
Perkins School for the Blind

28. State Resources Louisiana Deafblind Project
Louisiana for the Deaf & Visually Impaired
Federal Quota Funds
Affiliated for the Blind
Lighthouse Louisiana
Louisiana Rehabilitation Services
Louisiana Center for the Blind
Presenter’s Notes:

29. Louisiana Deafblind Project
MaryAnn Demchak
October 6, 2008
If you have a child who has a hearing and vision loss at the same time and would like assistance who do you contact?
Louisiana Deafblind Project
Presenter’s Notes:
Review the age range of individuals with whom the project works. Briefly refer back to the criteria for who is deafblind.
Nevada Dual Sensory Impairment Project 29

30. Contact the Project: cglaus@lsuhsc.edu Cassondra Glausier
(Office)

31. Credits Hand in Hand Remarkable Conversations Deaf-Blind Perspectives
Deaf-Blind Infants and Children: A Developmental Guide, by J.M.
McInnes and J.A. Treffry, University of Toronto Press, Toronto, Canada, 1997.National Consortium on Deaf-blindness
Thanks to the following projects: NV, NM, UT, NY, MN, CO, WY
Presenter’s Notes: