MN DeafBlind

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OVERVIEWPhoto of two girls


Overview of Deafblindness and Implications

Did you know that 80-95% of information comes to us through our vision and hearing? Students who have hearing or vision losses cannot access the same amount or quality of information without accommodation for their sensory losses. This “input impairment” must always be understood and addressed before any thoughts of processing or products (such as an IQ score) can be discussed. Think about this:

  • A child who is deaf or hard of hearing
    learns through vision.
  • A child who is blind or visually impaired
    learns through hearing.
  • A child who is DeafBlind
    learns through touch supplementing whatever vision and hearing is left. He/she may not have enough vision or hearing to learn the way children learn in programs for the deaf/hard of hearing or for the blind/visually impaired. This is also true for other special and general education placements.
  • An educational program that takes into consideration the unique learning needs of each child will have to be specifically designed for him/her, with particular attention to the input of information, communication skills, and consistent access to communication.

You will also see descriptions such as “combined vision and hearing loss, dual sensory impaired, concomitant vision and hearing loss, deaf-blind, blind-deaf, deaf/blind”, etc.

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Does DEAFBLIND mean that there is no useable hearing or vision?

Absolutely not. Only about 6% of children who are DeafBlind are totally deaf and totally blind. Most have useable residual hearing and vision, but even a “mild” combination of losses will impact their access to information, communication, and all the information required for learning to take place.

Most of the children who qualify as DeafBlind have some useful vision and/or hearing, which is VERY important to their daily functioning. Because deafblindness is a combination of vision and hearing losses, there are as many possible combinations as there are individuals. For this reason, no two children with deafblindness are alike.

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What about children with multiple disabilities - can they be DeafBlind?

Yes, but not necessarily. Up to 80% of children with hearing and vision losses also have other disabilities (such as cerebral palsy, physical or cognitive disabilities).

The hearing and vision loss may also be a part of a syndrome (such as CHARGE or Usher Syndrome). In all cases, the impact of the combined sensory loss greatly affects a child's access to information, concept development, and communication. A wide range of cognitive and developmental abilities exist among children with a combined vision and hearing loss, from gifted to profound impairment.

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Impact of DeafBlindness

Of the five senses, vision and hearing are primary. Through them we gain information about people and our environment.

  • As much as 80% of what we learn is learned visually.
  • Hearing is the basis of the communication/language system that most people use.

Consider the additional impact if any of the remaining three senses are involved, e.g. loss of smell in CHARGE syndrome.

When the two major channels for receiving information are impaired or not functioning, any or all of the following developmental areas are affected:

  • Communication/language development
  • Movement and motor development
  • Cognitive development and the ability to learn
  • Emotional/social development
  • Body image and self concept

Depending on the age of onset, the effects on learning include:

  • Difficulty with communication.
  • Distorted perceptions: Difficulty in imaging the whole picture or relating one element to the whole.
  • Anticipation: Difficulty in knowing what is going to happen next, lacking the context normally provided through "overseeing" or "overhearing" information and cues.
  • Motivation: The motivating factors may be missing from a situation, going unseen or unheard.
  • Incidental learning: The child may not be able to "overhear" or "oversee" what is going on.

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Educational Intervention is Critical to Children who are DeafBlind

Children who are DeafBlind need early intervention, which includes:

  • Individual 1:1 attention to stimulate their interest and understanding of the world around them.
  • Direct teaching of information and experiences that other children pick up naturally from "overhearing" or "overseeing" what others say or do. Firsthand experiences are much more effective ways for them to learn than incidental observation or group experiences.

Sensory experiences make us aware of our environment. They are the basis upon which we build our knowledge of the world, others, and ourselves. When people see or hear, they are stimulated to interact with the environment. Individuals with combined vision and hearing losses have limited access to information, and may miss out on the incidental learning that other people automatically have access to through sight, hearing and communication. These children will need to be taught many things that hearing and sighted children learn effortlessly.

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Causes (Etiologies)

About 200 different conditions are associated with vision and hearing losses. Over half are genetic in origin, occasionally with both the vision and hearing losses present at birth but more commonly having just one or neither present at birth.

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Statistical Information/Demographics

Estimates indicate that there are approximately 70,000 people in the United States who are DeafBlind. A study by the National Census has identified over 10,000 children and youth. It is estimated that this number could be as high as 11,000 and that deafblindness may occur in 3 of 100,000 births.

The Minnesota Department of Education counted 63 students with the primary disability of deafblindness for the December 2012 unduplicated child count as reported to Congress. However, the MN DeafBlind Project conducts an annual census that provides a much more accurate picture of deafblindness. The current number of students with deafblindness in MN is 302 as of the 12/1/12 census.

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Communication, Communication, Communication...

Communication is one of the major issues in deafblindness. Communication does not necessarily mean speech or even sign language. We all communicate through body language, facial expression, gestures, and sounds that are not words. Babies communicate through crying.

One of the goals of general education is to formalize that communication into speech or sign language with the ability to read and write. Getting to that level of fluency takes longer when hearing and vision are not perfect. Even after excellent expressive communication skills are established, the very act of communicating with another human being may require accommodations such as an intervener or specialized equipment. No matter what the age, the person who is DeafBlind always says that communication is an issue.

Therefore, in the beginning we need to work on communication, communication, communication
The next step is to work on communication, communication, communication
After that, we need to work on communication, communication, communication....

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The Communication Bubble

Eric Kloos says, "Don't be off the student's radar!" In other words, if the child cannot see you or hear you, you may as well not be there.

Susan Smith, a parent of several children who are DeafBlind coined the term "Communication Bubble" to represent the space within which a person must be in order to communicate effectively. The size of this bubble may be different for vision and for hearing and may depend on the type of communication going on.

If a child can only see out of the upper outer quadrant of the right eye, then anything presented on the left side or below the level of the pupil will be "off the radar." He will not see it nor respond in any way that seems appropriate. The Communication Bubble can be represented graphically.

If a child has RP (retinitis pigmentosa) with tunnel vision such as is present in Usher Syndrome, then he may be able to see perfectly in the center but lose information out to the sides.

On the other hand, if he has optic atrophy or cataracts, vision will be blurred until an object is presented very close to the eyes and will need to have good contrast against the background, e.g. white hands against a black shirt for signing.

If a child only hears out of the right ear, she will be able to hear information presented from the right side only but it will not be as loud or as clear. In addition, that child will not be able to localize sounds accurately. On the other hand, if hearing is reduced on both sides, the child will strain to hear anything in a noisy environment.

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Minnesota Definition

The Minnesota DeafBlind Project uses Minnesota Rules/Department of Education to establish criteria for our Project services. To determine if your student qualifies deafblind, view the DeafBlind Definition and criteria from Minnesota Rules-Department of Education. Please note that the definition for DeafBlind requires that the student meet the criteria for DeafBlind AND both DHH and BVI or the At Risk Criteria. If you have questions, please contact us at: 800-848-4905.

Federal Definition of Deafblindness

“Deafblindness means concomitant hearing and vision 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”. (IDEA, 2004)
 
For infants and toddlers receiving Part C early intervention services, deaf-blindness is defined as:
 
“Concomitant hearing and vision impairments or delays, the combination of which causes such severe communication and other developmental and intervention needs that specialized early intervention services are needed”.

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