5.1 Definition, causes, classification, prevalence and characteristics of deaf-blindness

Deafblindness is the combination of significant auditory and visual impairments in a person. These dual sensory losses vary in severity from person to person and do not necessarily lead to total deafness and/or total blindness. It is entirely possible that the person will retain some useful vision and hearing. However, in combination, these impairments of the distant senses causes serious developmental delays in the child, affecting cognitive development, social development, acquisition of communication and language skills, orientation and mobility.

Deafblindness is a unique disability; it has its own concepts and terminology, its own methods of assessment and means of education, and its own modes of communication, which distinguishes “deafblindness” from deafness and blindness. Deafblindness is not a medical concept, surprisingly; medical literature makes few references to deafblindness. It is a developmental concept which helps us to understand the nature and the extent of a disability consequent to deafblindness. Because 95 percent of what we learn comes through our eyes and ears, deafblindness leads to difficulties in communication, mobility, and in accessing information.

Deafblind people fall into four groups:

1. Those who are born deaf and blind, which can happen if the mother, inter alia, contacted Rubella (German Measles) during pregnancy.

2. Those who were born deaf and then lost their sight. This is often caused by the Usher Syndrome – deafness followed by a decrease in sight because of retinitis pigmentosa (tunnel vision).

3. Those who were born blind and then lost their hearing.

4. The adventitious deafblind, as a result of old age, or through an illness or accident later in life.

Federal Definition of Deafblindness – USA

“Concomitant hearing and visual impairments, the combination that creates such severe communication and other developmental and educational needs that they cannot be accommodated in special education in programs solely for children with deafness or children with blindness.”

“Deafblindness” is a condition presenting other difficulties than those caused by deafness and blindness. It is an “umbrella” term, which can include both children and adults who are:

• Blind and profoundly deaf.

• Blind and severely or partially hearing impaired.

• Partially sighted and profoundly deaf.

• Partially sighted and severely or partially hearing impaired.

“The term, ‘children with deafblindness’, means children and youth having auditory and visual impairments, the combination of which creates such severe communication and other developmental and learning needs that they cannot be appropriately educated without special education and related services, beyond those that would be provided solely for children with hearing impairments, visual impairments, or severe disabilities to address their educational needs due to these concurrent disabilities.”

A precise description is difficult because the degree of deafness and blindness, possibly combined with varying degrees of other disabilities, are not uniform, and the educational needs of each (person) will have to be decided individually. In functional terms these children and young people may include those with:

• Moderate to profound auditory and significant visual impairment.

• Moderate to profound auditory and significant visual impairments and other significant disabilities.

• Central processing problem of vision and hearing.

• Progressive sensory impairment.

• A significant visual impairment; and a possible loss of auditory processing mechanisms (associated with severe physical disabilities or severe cognitive disabilities) and severe communication delay.

Characterstics of Deafblind

• Simultaneous presence of defective vision and hearing impairment which may vary in degrees.

• Does not imply total loss of either vision or hearing.

• Communication is most severely affected.

• Highly individualized training is needed to cope with the condition.

• The world is much narrower as the distant senses are affected, and it is usually within the arm’s reach.

• Affects person in totality.

• Associated medical conditions with hearing and visual loss may be present.

Causes of Deafblindness

Congenital or early onset deafblindness

1. Infections as a cause of deafblindness

· Rubella virus or commonly known as German Measles leading to Congenital Rubella Syndrome (CRS)

· Cytomegalovirus (CMV) or Toxoplasmosis

· Meningitis and Encephalitis

2. Genetic or chromosomal syndromes as cause of deafblindness

· CHARGE syndrome

· Down syndrome

· Goldenhar syndrome

3. Congenital birth trauma as a cause of deafblindness

· Premature birth

· Low birth weight

· Anoxia or lack of oxygen

· Other trauma or birth injury

4. Acquired deafblindness

• Genetic syndromes as a cause of deafblindness: Usher Syndrome

• Accidents or other trauma as a cause of deafblindness

• Ageing as a cause of deafblindness

Rubella (German Measles): Rubella, also known as German Measles, causes a group of congenital defects known as Congenital Rubella Syndrome (CRS). The disease is easily transmitted from the pregnant mother to the unborn foetus. As in the other prenatal infectious disease, rubella does not usually cause serious symptoms in the affected adult. A pregnant woman who is not immunised normally contracts rubella through the nose and throat. The infection spreads, transmitting the virus to the foetus across the placement barrier. Once the foetus is exposed to the virus, the cells of the developing eyes, ears, CNS, and heart can be damaged. Infection of a pregnant woman can result in a miscarriage, enlarged liver and spleen, dental abnormalities and deafness.

Hearing impairment in CRS is typically sensorineural but may include accompanying conductive problems. The rubella vaccine is part of the MMR (measles, mumps, and rubella) vaccine series given to children beginning at 12 months of age.

CHARGE Syndrome: CHARGE association (or syndrome) is an acronym referring to children with a specific pattern of birth defects. The acronym is: “C” for Coloboma (cleft or failure of the eyeball to close resulting in abnormalities of retina and optic nerve), “H” for Heart defects, “A” for Atresia of Choanae (blockage of nasal passage), “R” for Retardation of growth and development, “G” for Genitourinary problems and “E” for Ear abnormalities (unusually shaped ears, sensorineural or conductive hearing loss).

Usher Syndrom: Usher Syndrome is a genetic disorder that is characterized by hearing impairment as well as an eye disease called Retinitis Pigmentosa. Most of the children with Usher Syndrome have a hearing impairment at birth. At a later stage vision problems also occur starting with night blindness. Vision gradually degenerates (gets worse) over time. Some of the children may be left with tunnel vision and some may go totally blind. Some people with Usher syndrome also have balance problems. Usher syndrome is the most common condition (aside from aging) that affects both hearing and vision.

Prevalence of Deafblindness in India

In India, it is estimated that the number of persons with various disability is over 90 million. There is no data available regarding the size of the deafblind population in India. As of date, there has been no comprehensive study or research done to determine the true incidence of deafblindness. Estimates, based on information gathered from community-based projects, indicate that there could be more than 400,000 deafblind people in our country. Overall we can predict that 0.04% of general population have deafblindness as disability

5.2 Effects and implications of deaf-blindness on activities of daily living & education

Communication: Communication is the area which is affected the most in deafblind individuals. Deafblindness greatly reduces the interaction level of an individual with his/her environment. As we grow and interact with our environment, there is a development of varied concepts around us that in turn leads to the subsequent learning of skills each time. We rely on the information that we get through our visual channels and from what we gather through hearing. Loss of any one distant sense i.e. vision/hearing will directly affect the communication skills.

You would observe following points in an individual with deafblindness:

· Difficulty in communicating or inability to communicate in a meaningful way. Due to limited pathways to explore self in an environment, natural inputs that would help an individual to express himself completely are missing in a deafblind individual. Learning from our natural surrounding and learning the right way to communicate gives meaning to our communication and here sensory input from all the senses play a major role.

· Often, communication attempts are missed or misunderstood because the right method to communicate is unknown due to lack of observation and exposure on the part of deafblind individuals and on the immediate contact or caregivers as well. This leads to development of inappropriate communication skills and maladaptive communicative behaviour of deafblind individual.

· Difficulty in approaching a right communication partner who would understand and relate to the need.

· Poor understanding of world around them.

· Restricted modes to communicate as they are unable to speak read and write.

· They do not have many developed social relationships and therefore remain isolated from the world.

· Due to lack of visual and auditory information there is reduced motivation to communicate.

Being unable to see and hear and due to missing environmental inputs, there is a void in linking with the formal communication system and therefore only a systematic approach towards teaching communication starting from concrete to abstract facilitates learning process in deafblind individuals.

Motor Development and Mobility: Children learn about their environment as they move through it. They learn about people, objects, sizes, shapes and distances. For typically developing children the senses of sight and hearing provide the greatest motivation for exploration. Children use their vision and hearing to gather information about their surroundings while growing, to understand their own bodies and their own capabilities of movement. The sight of toys or people and the sounds of voices or objects encourage them to move and discover. As they do so, they gather, recognize, and interpret an amazing array of sensory information. Children with deafblindness get constrained information through sensory system.

· Severe medical problems and/or other handicapping conditions, lead to serious developmental delays affecting motor and mobility problems that affect life expectancy of a child with deafblindness.

· Difficulty in independent exploration and hence getting a control over the environment.

· Due to the limited interaction with the environment, children with deafblindness do not get to explore themselves and in the immediate and surrounding environment.

· Conceptual development and experience of space and direction differ significantly from other children.

Socialisation: We develop our social relationships by interacting with one another, through different modes of communication. Imagine a world with big void of communication, no one to interact with, and no one to talk to, with restricted pathways towards reaching others. Socialisation is altogether an outcome of communication. An individual with deafblindness has very poor scope of reaching out to others to share his/her needs, events and entertainment.

Following pointers will enable you to know more characteristic features related to socialisation:

· Extreme difficulty in establishing and maintaining interpersonal relationships with others. As deafblind children have different ways of communication than other members of society, they face difficulty in initiating and understanding conversations.

· Isolation and Disconnection from society: Due to communication difficulty, deafblind children are isolated within their own community.

· Living in a world that may seem alternately coming at them or getting disappeared into the thin air creates a secluded environment. Deafblind children sit at one place and do not get opportunity to participate in day-to-day activities at home due to their limited self exploration of environment around them.

· Social deprivation: Communication, Orientation and Mobility difficulty leads to a confined socialisation, they do not participate in social activities. Knowing what is happening around and participating accordingly enables the person to be socially active and participate fully.

· Isolation: Deafblind individual may detach from others and avoid social interaction. Due to unique way of communication, deafblind children hesitate in initiating conversation which results into detachment from society. And they also learn to avoid social interaction.

Behavioural and Sensory Issues: Any behaviour of an individual has a reason behind it. Due to our skills and limitations we acquire certain behavioural patterns that get added to our personality. For example, an individual who recognizes his limitations in fluent communication with others would gradually develop a behavior of remaining quiet in a social gathering, or may adapt to certain behavioural pattern that would stimulate his/her needs towards reaching out to others. We often look out for alternatives to our present and not satisfying conditions. It’s an in-built human nature to strive for self-satisfaction that gives pleasure. We adapt to various behaviour patterns to rule out our confusions, our fears and also to add on to our own self with new positive concept. Sensory deprivation in an individual with deafblindness creates a big void in one’s life. Due to these deficits in an individual with deafblindness, s/he may acquire behavioural patterns that may not be well understood by others in the society. Some of them are mentioned below:

· Typical self-stimulatory behaviours such as eye poking, body rocking.

· Due to lack of observation and exposure to socially appropriate manner of eating food, child with deafblindness may acquire socially incorrect manner of eating food.

· The child also resists different types of food textures due to hypo/hyper sensitivity towards touch or sounds.

· They may have unusual sleep patterns.

· May exhibit variety of behaviour patterns to express their needs and emotions which may be  unacceptable in society.

· Unique needs and learning styles due to sensory deficits.

Education and Learning

As mentioned earlier that 95% of whatever we learn comes through our eyes and ears. Deafblind children, therefore, face major challenges in learning. Due to limited vision and hearing these children face problems in communication, mobility and activities of daily living. Deafblindness causes such severe communication and other developmental and learning needs that the persons cannot be appropriately educated in special education programmes solely for children and youth with hearing impairments, visual impairments or severe disabilities, without supplementary assistance to address their educational needs due to these dual, concurrent disabilities. Deafblind children are educationally isolated because impairments of sight and hearing require attentive and unique educational approaches in order to ensure that children with this disability have the opportunity to reach their full potential.  For the deafblind child, the world is initially much narrower. If the child is profoundly deaf and totally blind, his or her experience of the world extends only as far as the fingertips can reach. Their concept of the world depends upon what they have had the opportunity to physically come in contact with. If a deafblind child has some useable vision/hearing, as many do, her or his world will be enlarged. Many deafblind children have enough vision to be able to move about in their environments, recognize familiar people, see sign language at close distances and read large print. Others have sufficient hearing to recognise familiar sounds, understand some speech or develop speech themselves. Children with intact vision and hearing learn effectively from all they do and from all that happens around them. These learning experiences include a series of day-to-day events happening around the child. Because the senses of vision and hearing help the child to organize the information from the world around him, it is important to consider that the deafblind child does not have access to opportunities that helps in such incidental learning, as sighted and hearing children do have. Deafblind children acquire fragmented and distorted information from their contact with people and environment.

A deafblind child will learn to use all the information about the world around him with the use of his tactile, olfactory, kinaesthetic and proprioceptive senses along with whatever residual hearing and vision they might be having. And to make this kind of learning it is important for deafblind child to participate actively in the full sequence of the activity. In other words deafblind children will need to experience activities in the real life settings as they are occurring naturally in the environment around them. They will learn best by doing things together. Loss of sight and hearing also makes the child feel very fearful about the physical environment around him. He is not able to judge his own body in the space around him. His awareness about the organisation of the space and his safety concerns are also limited. It is therefore difficult for the child to get interested to move around in his environment independently and this has an unfavourable effect on his learning opportunities. Learning through doing, forms the basis of a strong learning environment for deafblind child. It is evident that the child faces a major obstacle in learning because of the lack of opportunity to access visual and auditory cues from the environment, less able to anticipate events in his immediate environment and limited scope to make choices. To reduce this loss, it is important to develop routines in the life of the deafblind child.

5.3 Screening, assessment, identification & interventional strategies of deaf-blindness

Screening of Deafblind Children

Children with deafblindness can be identified in many ways

· Contacting village “sarpanch” and going through the village population data at the panchayat office.

· Conducting a door to door survey.

· Conducting screening camps in the villages.

· Contacting Primary Health Care (PHC) Centre doctors.

· Contacting Paediatric clinics.

· Getting information from Government hospitals.

· Information from child guidance centres.

· Survey data from other special schools/other organisations.

Tools required to Identify and Prioritise Needs

The following tools would be helpful in identification and prioritising the needs of deafblind children

· Survey format

· Screening schedule

· Medical certificate

· Functional assessment format

Assessment of Deafblind Children

Assessment involves gathering of information in many ways, like testing the child directly, observing the child in varied environments as well as interviewing family members and significant others. Assessment is done before implementing the intervention programme. Assessment is the first step that is taken by an educator/ therapist to develop a holistic programme for the child. We assess the child’s environment, child’s communication, visual and hearing abilities, cognitive abilities, physical difficulties, socialization skills, personal factors like child’s likes and dislikes, strengths and areas where development is required. Assessment also includes retrieving information regarding medical and educational history. An assessment is the crucial stage in addressing the particular needs of the individual deafblind person. It provides a foundation on which a plan is made and services provided.

Purpose of Assessment

Assessment will help the educator, professional and parent:

· To identify the strengths and limitations of the deafblind child.

· To know the developmental levels.

· To know various needs like social, environmental, family, medical and communication.

· To know what to teach and the best method to teach.

· To identify appropriate programmes and instructional strategies.

· To classify and place the child in the appropriate programme.

· To provide with the most appropriate amplification, vision and mobility aids and /or other prosthesis.

· To develop an Individual Educational Plan.

Areas of Assessment

Vision

· Do visual fields appear to be intact?

· Does the child look at an object while interacting with it or look away and then act?

· Does the child show colour preferences? Preference for movement rather than still objects?

· Are eyeglasses or low vision aids recommended? Tolerated? In use?

· How does lighting affect him?

· What is the child’s preferred learning mode: visual, auditory, or tactual?

Hearing

· Is the child aware of sound?

· Does s/he alert to sound, orient to sound, localize sound, isolate a specific sound in the presence of other sounds?

· Does the child respond to a selected sound among other sounds?

· Is the child frightened by any sounds?

· Likes and dislikes in sounds?

· Does she understand and respond to routine verbal instructions / commands?

· Does she recognize people by their voice?

· Does the child appear to use hearing aid to respond during the assessment to voice? Music? Speech?

Social/ Communication domain

· What modes/methods does the child use for receptive and/or expressive

communication?

· How does the child use these?

· How does the child respond to the assessment facilitator, parent and peer i.e. cues, verbal requests, pause for turn-taking.

· Who are the child’s communication partners?

· How do they communicate with the child?

· What are the child’s preferred modes of communication?

· Does he understand objects?

· How does he use them?

· What are his topics for communication?

· Does he initiate interactions/conversations?

· Does he communicate at a pre-intentional or intentional level of communication?

· Does he use gestures or pointing? Does he show anticipation?

Interventional strategies of deaf-blindness

• Help the learner communicate and understand different communication modes.

· Make use of the residual hearing and the residual vision. But at the same time educator must also be aware of what the learner can and cannot hear or see and how it changes different environments. Accordingly, modify the student’s immediate environment or help the student deal with the change in environment.

· Respect and encourage the use of touch since hands may be the link to everything and everybody.

· Give plenty of time for reactions and decisions. With less access to context, it may take longer to ‘put the pieces together’.

· Build a strong relationship/bond with the student.

· Develop a positive self-esteem by giving the learner opportunities for choices.

· React to the learner’s actions and communication attempts every time they happen.

· Give immediate feedback to their actions, including reinforcing success and giving strategies to refine their actions.

· Plan experiences so that problem solving is required.

· Use functional activities that can be learned in the natural routines of the day.

· Plan activities and experiences so they involve the learner at every step, from start to finish of an activity. Too often, people and objects appear as if by magic and disappear the same way.

· Consider the use of ‘Experience books’ to give deafblind students a way to have a conversation about what they have experienced.

· Let the students know who is in the room, when they enter and leave if they are not able to see. Even if they can see a person enter, they may not be able to identify who that person is.

· Incorporate communication in all areas of the Individualised Educational Programme.

· Remain calm. A student may react negatively to a teacher who is losing or has lost control.

5.4 Fostering early communication development: Methods, assistive devices and practices including AAC

Communication can be defined as the process of transmitting thoughts, ideas, information and messages from one person to other. There are a variety of ways that deafblind children communicate.  For children who have hearing and vision problems, communication may be somewhat different. It may not always be one person talking and another person listening.

“Communication is a dynamic process that individuals use to exchange ideas, relate experiences, and share desires through speaking, writing, gestures or sign language” (Glenn & Smith, 1998). “Communication includes language, speech and hearing and hence communication impairment can be viewed as any impairment related to these three areas” (Sunderland, 2004).

Development of Communication

Communication process starts at birth and various kinds of sensory and other informational inputs are the most vital factors in ensuring its appropriate development. The capacity to communicate is an inborn one. The child starts interacting with the mother or other care givers right at birth. The mother attends to the child’s cry, makes him comfortable, smiles at him, talks to him in baby language and the child gets attached to her. Child starts responding to her in his own little ways and an interaction starts.

Some of the ways in which the child may communicate in early years are:

· Facial expression

· Vocalisations such as crying, cooing and babbling

· Change in muscle tone

· Touching or manipulating others

· Body movements

· Assuming positions

· Pointing

· Natural gestures

· Showing aggression (biting, pinching, throwing things etc).

Deafblind children do not have the security and motivation to move around and interact with people and objects in their environment. The information they receive about their environment is also distorted and interferes with their interaction with others. Thus they often remain isolated and face the challenge of having very little opportunity to acquire communication skills incidentally. There should be some reason to communicate. Early communication should be based on emotional bonding and the needs of the child to have a control on his/her environment. We should avoid anticipating the needs of the child as this will reduce the opportunities he gets to communicate and for problem solving. As an educator or professional and parent we must ensure that he has problems to solve and choices to make and that he must communicate his decisions to you.

Some of these implications of deafblindness on communication abilities are enlisted below:

· Eye contact that helps maintain communication with others is missing.

· Body language that helps person to take information about the speaker and sometimes also conveys meaning of speaker’s information is not interpreted due to visual loss.

· Inability to anticipate what is going to happen next and understanding prompts hinders development of reciprocal interaction and turn taking.

· Inability to understand the meaning of communication expressed through tone of voice.

Developing Communication in Deafblind Children

Teachers can use a number of methods to enhance the use of communication and the development of interactions at school and in the community by children with deafblindness.

Some of the useful methods are listed below:

· Family must be given priority; child’s interaction with his/her environment is dependent upon the family’s activities and different sources of interaction.

· Communication options should not be limited. Based on the skills the child will be learning and the communication pattern involved in the surrounding environment, the communicating partner with whom the child will be interacting, different communication options should be involved.

· Communication should occur with many different people (including peers).

· Communication should not be one-sided/directive. Who so ever is interacting with the child should interact as a partner and not give orders. For example, “do what I am asking, without questioning”.

· Communication between the partners should be as direct as possible. Interpreter may be involved to facilitate social interaction at all times. If interaction is frequent, all must learn appropriate ways of communicating, including the use of augmentative aids.

· Communication exchanges should occur frequently.

· Communication is a dynamic process, hence all our programme planning must enhance

child’s interactions at every level (environmental, partners, skill areas). Communication should be part of all areas in the educational program for the child (IEP).

· During interaction systematic procedures should be used to expand the student’s communication system.

Use of Augmentative and Alternative Communication with Deafblind

One may use different ways to express self and understand others. Similarly children with deafblindness use different modes to communicate. Following are the different modes of communication used by children with deafblindness:

Sign Language: Sign language involves using specific hand shapes and body movements to express ideas and concepts. It can be visual or tactile. In visual signing, signs are made in front of the person. Positioning, distance, speed, complexity and lighting can be adjusted according to the need of deafblind individuals. Tactile signing involves signing with the receiver’s hand resting lightly on the signer’s hand. Tactile signing is suitable for people who have very little vision or no vision at all.

Hands-on Signing, Tactile Sign Language: This requires no sight and is based on touch. The person who is deafblind places his/her hands on the hands of the person signing so he/she can feel the hand shape, position and movement of the signer’s hands to understand what is being signed.

Visual Frame Signing, Tactile Sign Language: This is used by deaf people with tunnel vision (tunnel vision is the loss of peripheral vision with retention of central vision, resulting in a constricted circular tunnel-like field of vision). It is similar to standard signing, but the hands are kept near the upper body and face, within the visual field of the deafblind individual so they do not disappear outside the “tunnel”.

Finger Spelling: The finger spelling is felt by the deafblind person. The best example is of the American manual alphabets, which are made using a single hand with a particular shape for each alphabet in English. Each word of English is spelt with changes in shape of the hand, which denote each of the letter in the word and the deafblind individual can feel the spelling and makes out the word using his palm over the hands of the speller. This is very convenient and fast.

Print on Palm: This method is used where letters are drawn on the palm of the deafblind person’s hand, one after the other. The letters are block capitals, drawn with, as few strokes as possible to make it easier to feel.

Speech: Deafblind children who are hard of hearing may be able to hear speech. Some people with Mprofound hearing loss are still able to speak clearly enough to be understood.

Lip Reading/Speech Reading: Deafblind children with sufficient vision may use lip reading to understand speech. It is important to speak slowly with sufficient light on the face of the speaker to enable the child with deafblindness to see clearly.

Tadoma: Tadoma is tactile lip reading. The person reading the speech places his/her thumb on the speaker’s lips and his/her fingers along the jaw line, touching the speaker’s cheek and throat. From this he/she is able to pick up the vibrations of speech as well as the lip patterns. It is sometimes referred to as ‘tactile lipreading’, as the deafblind person feels the movement

of the lips, as well as vibrations of the vocal cords, puffing of the cheeks and the warm air produced by nasal sounds such as ‘N’ and ‘M’. Use of Tadoma however requires good fine tactile discrimination skills, cognitive skills and fine motor skills.

Braille: Braille is a system of touch reading and writing in which dots represent the letters of the alphabet. Braille is read by moving the hand or parts of the hand from left to right along each line. Both hands are usually involved in the reading process and reading is generally done with the index fingers.

Moon Code: The Moon system of embossed reading was invented by Dr William Moon in 1845. Moon writing is intended for blind or partially sighted people. The characters are fairly large and over half the letters bear a strong resemblance to the print equivalent, Moon alphabets/ writings has been found particularly suitable for those who lose their sight later in life or for people who may have a less effective sense of touch. The Moon system of embossed reading is based upon the standard Roman alphabet. The Moon alphabet is made up of 14 characters used at different angles, each with a clear, broad outline.

Gestures: Gestures or non verbal communication and body language communicate as effectively as words and may be even more effectively. We use gestures daily as they are woven inextricably into our social lives. For a deafblind individual learning to communicate and express himself through gestures is very difficult. Some deafblind children express their needs through vocalisations (crying/ cooing/babbling).

Symbols: A symbol is something that stands for and represents something else (referent). Communicating with the help of symbols is called symbolic communication. Spoken and written languages are examples of abstract symbols and real objects are examples of concrete symbols.

Cues: A cue is a prompt that is individualised for each deafblind child and is used to encourage a specific behaviour. It is dependent on specific activity or context. For example tapping a child on chin may be a prompt for “open up mouth “if caregiver wants to brush Child’s teeth, or for “take a bite” during meals or “close your mouth” to prevent drooling. However the same cue will not be used for all these. For each of these actions there has to be a different touch cue. There are different types of cues that are used in developing communication of a deafblind child, namely touch, movement, contextual cues and object cues (used for receptive communication). We would be discussing them in detail in the later section of this chapter. Gestures and cues are some of the ways to let a deafblind child know what is about to happen to him or her.

5.5 Addressing orientation, mobility & educational needs of students with deaf-blindness

Orientation and Mobility (O&M) instruction provides students who are deafblind with a set of foundation skills to use residual visual, auditory and other sensory information to understand his or her environment. For the deafblind child, movement is an opportunity to gather sensory information, to communicate and to make choices. O&M instruction provides opportunities and skills that can broaden the student’s awareness of the environment, resulting in increased motivation, independence and safety.

Definitions

Orientation: Orientation is the ability to locate oneself in one’s environment. It is a skill that is related to the use of the remaining senses to establish one’s position in, and in relation to significant objects in the environment.

Mobility: Mobility is defined as “movement” not just a particular technique or device. It includes obtaining freedom of movement, safety in travelling as well as minimizing the level of stress placed. A well-developed mobility facilitates independent movement.

Importance of Orientation and Mobility:

· It is an important pre-requisite for the integration of the deafblind person into the community and working life.

· Being able to travel freely is very important for the sense of independence.

· O&M training is not just the overcoming of practical difficulties, but also, a step towards developing and maintaining one’s own character.

· Safety of the individual and his fellow men is enhanced.

· It enables him to learn to become more independent in indoor as well as outdoor mobility.

· The success of the vocational training programmes also pre-supposes the importance and necessity of independent travel.

· It allows a person more freedom and makes him/her less dependent on family and friends.

· It also educates the public for changing attitude.

· Proper O&M is a step toward comprehensive rehabilitation, self confidence and liberation from solitary home confinement.

· A person with excellent and graceful O&M skills is said to have attained independence and is easily acceptable by the sighted community.

· It is essential for correcting gait and postures.

Using Other Senses for Orientation

The deafblind person attains independence in travel if trained in effective and proper use of remaining senses. Sensory stimuli termed as ‘Clues’ generally enable him to determine his position or direction in respect of the environment. Sensory training should be provided in the following areas:

Touch: The deafblind person can orient himself by his sense of touch. It is essential for concept clarity and determination of exactness of the object. He can use hands or foot to explore the environment in the following ways:

1. Hands can be used to:

· Understand spatial quality, surface texture, temperature, movement and weight

· Establish the position and identify objects

· Trail along any object for maintaining contact for mobility

· Avail information about the layout of the environment through object symbols, landmarks, tactile maps, models, embossed diagrams and relief maps.

· Understand the variety of objects available.

2. Foot can be used to:

· Understand position of various landmarks on the pathways etc.

· Understand the relative position of buildings and the direction and lengths of connecting roads.

· Feel changes in surface texture, slope etc.

· Understand differences in geographical conditions.

· The touch has its limitation as large objects and the environment in general is invariably beyond tactile exploration.

3. Smell is useful for orientation both in house and outside in the following ways:

· Particular shops, factories or establishments can be identified by odour.

· Smell from kitchen, store, puja room or dining room can be useful as a cue for direction.

· Through smell, one can establish presence of particular animals in the proximity

· Typical odour from the sewerage or open drains in the rural areas can be used as landmarks.

· Sense of smell is useful for understanding one’s relative position in an agricultural or a dairy farm or a garden

· To relate or associate different items from their smell.

4. Temperature:

Changes of temperature on the face or body can be used to provide orientation information. For example, it is possible to recognize position of the sun by part of the face which feels hot. The relative position can be understood by a change from shade to sun.

The response of the body to external stimuli, termed as kinaesthetic sense enables a person to avail environmental information like heat, cold, rain, breeze, sharp turn etc.

5. Kinesthetic Sense: The receptors in the joints and muscles are giving information to thebrain about the physical position of the individual in the environment. This mode of information  is termed as kinaesthetic sense. With this information, the deafblind person comes to know on what type of ground or surface i.e. grass, road, mud he is walking. It is possible to remember and repeat particular body movements. Taking meals involves a number of sequential body activities which can be remembered and repeated when required. With practice, particular muscular movement can be produced automatically in a similar situation. It is possible to replicate the extensive body movements involved in walking from one place to another. Getting into a bus, going up the stairs or opening the door generally involves particular muscular movement which can be repeated time and again in a similar manner.It is a misunderstanding that lack of vision is compensated by extraordinary development of other senses. In reality, acquired blindness or deafness results into shattered confidence in other senses. However, through appropriate training and practice, one can develop skill of understanding the environment through the cumulative use of other senses.

6. Sense of Taste: It has less utility for sensory training in orientation and mobility as it does not provide any information about the relative environment. This sense needs to be provoked for its utility. It helps the deafblind person to associate names of the particular substances

with their particular taste:

· Sweet with sugar, candy, sweets

· Sour with citrus fruits, juices

· Bitter with medicines, herbs, plants

· Hot with tea, coffee, milk

· Cold with ice-cream, ice, cold water etc.

The sense of taste is particularly useful for identifying the ingredients of food items, dietary substances and like items.

Educational needs of students with deaf-blindness

Functional Curriculum Approach

The Functional curriculum model is based on the current and future needs of deafblind students. Students are not taught skills to progress through developmental milestones; rather the focus is on skills that will best prepare deafblind student to function throughout life. Deafblind student is assessed performing a variety of skills and the curriculum is developed from this assessment. The skills to be taught are based on daily living skills, work, recreational activities, regular education and the curriculum addresses the needs of deafblind child in the following areas:

• Independent living activities

• Work

• Recreation and Leisure

• Community

• Academic areas

• Communication

Individualised Educational Planning (IEP)

The IEP is the foundation of the child’s educational programme and must be developed with care. It is a complete programme for an individual child implemented for a specific period of time to provide appropriate education and training to the child.

Inclusive Education: A frequently recommended educational practice is that students with disabilities, including severe disabilities, should receive education in mainstream educational classes with their non-disabled peers. Inclusive education is a strategy contributing towards the ultimate goal of promoting an inclusive society, one which enables all children/adults, whatever their age, gender, disability and ethnicity to participate in and contribute to the society

Curricular Adaptation :Curriculum for deafblind children should be adapted according to the need, strength, age, sex, and socio-cultural status of the child. Every deafblind child needs adapted curriculum according to the above mentioned criteria. The curriculum focus for the child with deafblindness will differ from that of the child with single sensory impairment. The deaf education focus may be primarily on using language to code existing concepts. The curriculum focus for a child with visual impairment may be more oriented towards building concepts and experiences which can provide a firm cognitive foundation for language. The curriculum focus for a child with deafblindness should be on bonding and developing interactions and routines for expanding the frequency and functions of communication, along with efforts to use his real life experiences to develop concepts which will be the foundation for future communication and language development. This child will not learn about objects or actions incidentally. He cannot tie together the fragmented input he receives without interpretation and instruction from others. He must be taught to use and accept this instruction.

Environmental Modification : Environmental modifications for deafblind children are necessary in order to give greater and easy access of environment. Environmental modification does not refer to change in physical environment only but also includes people around deafblind children. At the time of planning for environmental modification, communication aspects must be kept in focus. While using sign language, background and colour contrast must be taken care of.