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Deafblindness:

Identification & Referral


Information
(name of project)
Goals of Training
Participants will understand:

• What deafblindness or a dual sensory impairment is


• The diverse nature of deafblindness
• Critical factors influencing the effects of deafblindness
• The challenges or impact of dual sensory impairments
• Accurate identification practices and outcome
• Appropriate referral sources and practices.
Faces of Deafblindness

• (add the faces of the children from your project)


Federal Definition of Deafblindness
Deafblindness, or dual sensory impairment, refers to the
concomitant hearing and visual impairments, the
combination of which causes such severe communication
and other developmental and education problems that the
individual cannot be accommodated in programs solely for
individuals who are deaf or blind.

(2004, IDEA)
State / Project Definition of
Deafblindness
• Project and/or State Definition
Other Terminology
• Deafblindness / Deaf-Blindness

• Co-Occurring Sensory Loss

• Dual Sensory Impairment / Loss

• Combined Vision and Hearing Loss

• Multidisabled (with sensory loss)


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.


How Might Vision Be Impacted?
• Low vision (visual acuity of 20/70 to 20/200)
• Legally blind (visual acuity of 20/200 or less or field
restriction of 20 degrees or less)
• Light perception only
• Totally blind
Other Concerns
• Diagnosed progressive loss or fluctuating vision loss
• Suspected vision loss.
Types of Vision Loss
• History of Untreated Eye Condition(s)
• Ocular Visual Impairment
• Cortical or Cerebral visual impairment (CVI)
• Learning Impacted by Vision – Functional Vision Loss
How Might Hearing Be Impacted?
Severity of Hearing Loss
• Mild loss (26-40 dB loss)
• Moderate (41-55 dB loss)
• Moderately severe (56-70 dB loss)
• Severe (71-90 dB loss)
• Profound (91+ dB loss)
Other Concerns
• Diagnosed progressive loss or fluctuating hearing loss
• Suspected hearing loss.
Types of Hearing Loss
• Conductive Hearing Loss
• History of Otitis Media
• Sensorineural Loss
• Mixed Hearing Loss
• Auditory Neuropathy
• Central Auditory Processing Disorder
• Unilateral Loss
• Cochlear Implant
Who is Deafblind?
• The next series of slides will highlight what degree of
vision and hearing loss would likely be combinations
that result in deafblindness.
Degree
of Vision

Normal
Vision
Low
Vision
(best
corrected
to 20/70)
Blind -
legally,LP,
field loss,
totally)
Progres-
sive Loss
CVI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Vision Hearing Hearing (severe to sive Loss Neuro-
(mild-moderate) profound) pathy
Normal
Vision
Low
Vision

Blind

Progres-
sive Loss

CVI
Degree of Hearing

Degree Normal Hard of Deaf Progres- Auditory


of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy

Normal Normal for


Vision both

Low
Vision

Blind

Progres-
sive
Loss
CVI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of
Vision both Hearing (DHH)
Low
Vision

Blind

Progres-
sive
Loss
CVI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of DHH
Vision both Hearing (DHH)
Low
Vision

Blind

Progres-
sive
Loss
CVI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of DHH Depends
Vision both Hearing (DHH) on degree
Low
Vision

Blind

Progres-
sive
Loss
CVI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing (DHH) on degree
Low
Vision

Blind

Progres-
sive
Loss
CVI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing (DHH) on degree
Low Visually
Vision Impaired
(VI)

Blind

Progres-
sive
Loss
CVI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing (DHH) on degree
Low Visually
Vision Impaired
(VI)

Blind VI

Progres-
sive
Loss
CVI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing (DHH) on degree
Low Visually
Vision Impaired
(VI)

Blind VI

Progres- Depends on
sive degree
Loss
CVI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing (DHH) on degree
Low Visually
Vision Impaired
(VI)

Blind VI

Progres- Depends on
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing (DHH) on degree
Low Visually Identified
Vision Impaired as Deafblind
(VI) (DB)
Blind VI

Progres- Depends on
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing (DHH) on degree
Low Visually Identified DB
Vision Impaired as Deafblind
(VI) (DB)
Blind VI

Progres- Depends on
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing (DHH) on degree
Low Visually Identified DB DB
Vision Impaired as Deafblind
(VI) (DB)
Blind VI

Progres- Depends on
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing (DHH) on degree
Low Visually Identified DB DB DB
Vision Impaired as Deafblind
(VI) (DB)
Blind VI

Progres- Depends on
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing (DHH) on degree
Low Visually Identified DB DB DB
Vision Impaired as Deafblind
(VI) (DB)
Blind VI DB

Progres- Depends on
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild- profound) pathy
moderate)
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing on degree
(DHH)

Low Visually Identified DB DB DB


Vision Impaired as Deafblind
(VI) (DB)
Blind VI DB DB

Progres- Depends on
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild- profound) pathy
moderate)
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing on degree
(DHH)

Low Visually Identified DB DB DB


Vision Impaired as Deafblind
(VI) (DB)
Blind VI DB DB DB

Progres- Depends on
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild- profound) pathy
moderate)
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing on degree
(DHH)

Low Visually Identified DB DB DB


Vision Impaired as Deafblind
(VI) (DB)
Blind VI DB DB DB DB

Progres- Depends on
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild- profound) pathy
moderate)
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing on degree
(DHH)

Low Visually Identified DB DB DB


Vision Impaired as Deafblind
(VI) (DB)
Blind VI DB DB DB DB

Progres- Depends on DB
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild- profound) pathy
moderate)
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing on degree
(DHH)

Low Visually Identified DB DB DB


Vision Impaired as Deafblind
(VI) (DB)
Blind VI DB DB DB DB

Progres- Depends on DB DB
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild- profound) pathy
moderate)
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing on degree
(DHH)

Low Visually Identified DB DB DB


Vision Impaired as Deafblind
(VI) (DB)
Blind VI DB DB DB DB

Progres- Depends on DB DB DB
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild- profound) pathy
moderate)
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing on degree
(DHH)

Low Visually Identified DB DB DB


Vision Impaired as Deafblind
(VI) (DB)
Blind VI DB DB DB DB

Progres- Depends on DB DB DB DB
sive degree
Loss
CVI VI
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild- profound) pathy
moderate)
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing on degree
(DHH)

Low Visually Identified DB DB DB


Vision Impaired as Deafblind
(VI) (DB)
Blind VI DB DB DB DB

Progres- Depends on DB DB DB DB
sive degree
Loss
CVI VI DB
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild- profound) pathy
moderate)
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing on degree
(DHH)

Low Visually Identified DB DB DB


Vision Impaired as Deafblind
(VI) (DB)
Blind VI DB DB DB DB

Progres- Depends on DB DB DB DB
sive degree
Loss
CVI VI DB DB
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild- profound) pathy
moderate)
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing on degree
(DHH)

Low Visually Identified DB DB DB


Vision Impaired as Deafblind
(VI) (DB)
Blind VI DB DB DB DB

Progres- Depends on DB DB DB DB
sive degree
Loss
CVI VI DB DB DB
Degree of Hearing
Degree Normal Hard of Deaf Progres- Auditory
of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild- profound) pathy
moderate)
Normal Normal for Deaf/Hard of DHH Depends DHH
Vision both Hearing on degree
(DHH)

Low Visually Identified DB DB DB


Vision Impaired as Deafblind
(VI) (DB)
Blind VI DB DB DB DB

Progres- Depends on DB DB DB DB
sive degree
Loss
CVI VI DB DB DB DB
Degree of Hearing

Degree Normal Hard of Deaf Progres- Auditory


of Hearing Hearing (severe to sive Loss Neuro-
Vision (mild-moderate) profound) pathy
Normal Normal for Hearing Hearing Depends Hearing
Vision both impaired impaired on degree impaired

Low Visually
Identified as
Vision impaired
Deafblind DB DB DB
(VI) (DB)

Blind - VI
DB DB DB DB

Progres- Depends on
sive degree DB DB DB DB
Loss
CVI VI
DB DB DB DB
Ask Yourself…
1. Does the learner have enough vision to compensate
for his or her lack of hearing?

2. Does the learner have enough hearing to


compensate for his or her lack of vision?

3. If the answer is no to either or both questions, the


learner can be defined as being deafblind.
(Alsop, 2001)
Label Distinction
• Deafblindness

• Multiple Disabilities

• When students are identified as having multiple


disabilities rather than deafblindness, the impact and
needs of the combined vision and hearing loss
should be recognized and addressed (NCDB, 2007).
Prevalence of Deafblindness
National Statistics:

• 3 in 100,000 births

• Add age data from John K


State Demographics
• Identified children and youth in (state)

• # __ of Girls # ___ of Boys

• # of infants and toddlers


• # of preschools
• # of elementary school age students
• # of middle school age students
• # of high school age students
• # of transition program age students
Causes of Deafblindness
• Hereditary
• Chromosomal
• Syndromes or Disorders
• Prenatal / Congenital Complications
• Postnatal / Noncongenital
• Complications of Prematurity
Leading National Causes
• Heredity
• Prematurity
• Prenatal Complications (TORCH)
• Postnatal Complications (meningitis)
• CHARGE Syndrome
• Microcephaly
• Hydrocephaly
• Usher Syndrome
• Undetermined
Examples of DB-Related Syndromes
Aicardi Alport Alstrom
Bardet-Biedl Cockayne Cogan
Cri du Chat Down Edwards
Fetal Alcohol Goldenhar Hallgren
Hunter Marfan Mobius
Pierre Robin Refsum Stickler
Sturge-Weber Treacher Collins Turner
Usher( I, II, II)
Leading Causes in (State)
• (personalize to your state)
How is Deafblindness Identified
• Eye Care Specialists confirm visual diagnosis, status,
treatment options, and prognosis

• Audiologists confirm auditory status and listening


device options.

• School personnel, as appropriate to eligibility,


determine functional status of vision and/or hearing.
The Challenge of Deafblindness
• The challenge faced by people with both hearing loss
and vision is much greater than just the sum of the
two losses. The problem is not additive, but
multiplicative.

(-vision) x (-hearing) = (challenge)2

• In many ways, deafblindness is a disability of access


to information and communication.
“People rely upon information about the world
around them, in order to learn, function, and
interact with others. Vision and hearing are the
major senses through which this information is
access. Individuals, who have vision and hearing
loss or deafblindness, are unable to access this
essential information in a clear and consistent
way. Deafblindness is a disability of access –
access to visual and auditory information.”

(Alsop, Blaha, & Kloos, 2000)


Importance of Identification
Concomitant vision and hearing loss is likely to impact
all facets of development. Early identification helps to
ensure:
• early possible treatment of sensory loss conditions
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.
Critical Factors that Influence the
Impact of Deafblindness
• Age at onset of loss

• Degree, type, and stability of vision and hearing loss

• Accompanying disabilities

• Support variables
Critical Factors that Influence the
Impact of Deafblindness
• Age at onset of loss
– Congenitally deafblind
– Adventitiously deafblind
– One sense congenitally impaired; other loss
acquired
Critical Factors that Influence
the Impact of Deafblindness
• Degree, type, and stability of vision and hearing loss
– Low Vision to Blindness
– Mild to Severe Hearing Loss
– Ocular and/or cortical
– Conductive , sensorineural, auditory neuropathy,
and/or central auditory processing
– Progressive losses
Critical Factors that Influence
the Impact of Deafblindness
•Accompanying disabilities
–Cognitive impairments (66%)
–Communication / Speech / Language (need data)
–Physical impairments (57%)
–Complex health care issues (38%)
–Behavior challenges (9%)
–Other (30%)

• It is estimated that more than 90% of children who are


deafblind have one or more additional disability or health
problem.
Support Variables
• Family / Community Support

• Financial Support

• Educational Team Support

• Adapted Equipment Support

• Specialized Instruction Support


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
Deafblindness affects EVERY
aspect of an individual’s life.
Collaboration is Critical
• Unique demands are placed on families who
have a child with a vision and hearing loss
• Many professionals will be involved with a
child who has a hearing or vision loss
• Successful transitions require careful and
respectful teamwork
• Appropriate monitoring of child progress
requires all members to watch carefully
(Chen, 1997; Miles, 1995)
Impact of Deafblindness:
Emotional Attachment
• Challenges to emotional attachment and
bonding for both caregivers and child.
• Much of our early bonding occurs through use
of eye contact, reading and responding to
body language, facial expressions, and sounds.
• A confusing or unpredictable response from
infant/child that is difficult to interpret can
lead to a weak or unpredictable response
from the child.
Social & Emotional Development
• Bonding and attachment behaviors
• Relationships with family, peers, providers, workers
• Sense of self and body image
• Reinforcement (motivation)
• Perception of safety
• Isolation
Sensory Impact
• When one or two senses are compromised or
absent, care should be taken to understand
the sensory learning profile of the child.
• Sensory use is very individualized.
• The learner may rely greatly on a sense that
has even significant compromise.
• The child may be at risk for sensory overload.
• Touch may or may not be a dominant learning
avenue initially.
Communication Impact
• Everyone communicates.
• Early communication involves reading cues and
reinforcing intention. Reading cues is an ongoing
communication skill.
• Early communication involves movement.
• The learner may not understand his or her actions
influence those around him or her or caused
something to happen.
Communication Impact
• Limited or reduced opportunities to acquire symbols to
represent their communication.
• All learners need repetitive, meaningful exposure to
incidental use of objects, pictures, sign language, speech.
• May have difficulty finding communication partners.
• May have difficulty finding common topic.
Behavior is Communication
• All behavior is communicative.
• Everyone communicates needs and wants.
• Behavior does not have to be intentional to be
communicative.
• Behaviors may be the result of the lack of a viable
communication system.
• Behaviors serve a purpose for the child.
• Behavior is influenced by events in the setting.
• Understanding the message behind “problem” behaviors
can be difficult.
• If a learner cannot express wants and needs, behavior issues
are likely to develop.
Accessing Information Impact
• If a child can access information, he or she is in a position
to learn. Access is our job.
• Vision and hearing are our distance senses
• Hearing is our only sense that can “bend around corners.”
• Vision takes in more information all at once than any other
sense (gestalt and detail).
• Even a mild hearing / vision loss can have a serious impact.
The Ability to Learn
• Learners who are deafblind are not limited by
what they can learn but by how and what we
teach them using effective strategies
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
Learning Impact
• Incidental learning
 More likely to require formal / deliberate instruction on “topics”
others acquire incidentally
• Mental imagery
 Challenging to construct mental images of simple objects

• Academics
 Access to the general education curriculum
 Accommodation and modifications
 Access to materials, technology , and equipment
 Adapted materials / equipment
Movement Impact
• We learn through our movement and exploration.
• Vision loss may impact postural tone.
• Poor or absent vestibular and/or proprioceptive function
will impact balance and movement.
• Vision loss impacts learning and moving through imitation.
• Seeing objects and hearing sounds influences motivation to
interact with the environment
• When vision and hearing is impaired, motivation to move
may be diminished.
• There may be challenges with concentrating on moving
when being asked to communicate (etc.)
Activities of Daily Living / Self Help
Deafblindness may impact all areas of self care.
• Sleeping be on a different schedule.
• Feeding may be affected due to a variety of
reasons.
• Role of incidental learning / imitation.
• Further complications due to possible health
concerns.
• Need for appropriate role models for self care.
It Is Important to Remember:

• Children who are deafblind--


 Need to have appropriate pacing.
 Require thoughtful and unique educational approaches
 Can participate in any activity
 Communicate in a variety of ways
What if you are working with a learner who is
deafblind (within a specified age group per
state) and would like assistance?

Contact the (name of project and contact info)


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?
Why refer to the project?
• Project newsletter & • Project sponsored trainings
other TA documents (e.g., • Help in finding resources
Tip sheets) • Home and/or school visits
• Print or video resources • Annual parent conference
• Parent-to-parent network
• Family-to-family network
and listserv (western
states)
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


National Resources
• National Consortium on Deafblindness
(NCDB)
• National Family Association for Deaf-Blind
(NAFDB)
• American Association of the Deaf-Blind
(AADB)
• Helen Keller National Center
(HKNC)
Regional Resources
• Family to Family Listserv
• Family Directory
State Resources
• Project contact information
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