Understanding Needs of Children who are

Multi-Disabled Visually Impaired (MDVI)

By: Akhil Paul, Director, Sense International (India), Ahmedabad.

Introduction:

Every year with increase in the means & ways of combating diseases, the resulting disabilities
have also been increasing. The disabilities have now become more complex due to the
sophisticated level of medical services, increase in the survival rate and high life expectancy.
Many children who would have died before or after birth due to critical complications are
surviving and are now living with some disabling conditions or multiple disabilities. The
medical efforts are always noted to be positive as far as lives of children are concerned, but
unfortunately such children, in most cases, suffer physical or sensory losses. Increased
awareness in the community due to Government and Non-government interventions, Acts &
Legislations, policies, programmes and benefits lead to increase in reporting of incidents of
multiple disabilities.

What is MDVI?
Tanvi, a four-year-old girl, is diagnosed to have congenital cataract. It is suspected
that she responds to light. She is also diagnosed to have moderate hearing loss in
her right ear. She has spasticity in her lower limbs and can only sit with support
and does not reach out with her hands to hold objects. She identifies her mother
through touch and smell. She cries when she needs something.

She is diagnosed to be “Multi-disabled Visually Impaired (MDVI)” child as she has

developmental delay and cerebral palsy with both vision and hearing loss.

Tanvi attends services at the early childhood sensory stimulation programme. Her
family members are in regular touch with the programme to create an environment
at home that encourages the maximum use of Tanvi’s vision and hearing.

Rajesh is a 12 year-old boy. He was born with both visual impairment and hearing
impairment. Today he can see at a distance of three metres. He uses thick glasses.
He reads words and pictures when it is shown to him in large-size print. Rajesh is
assessed to have profound hearing loss. He uses basic gestures and simple signs to
communicate with people around him.

He is diagnosed to be MDVI – having moderate mental retardation, partial vision

and total hearing loss.

Rajesh goes to school, to a special Unit for Multi-disabled children. His parents and
other family members receive regular assistance in developing their skills to use the
sign language so that Rajesh gets a signing environment both at home and school.

Nikhil, 16 year-old boy, can turn to his side while lying on the bed. He sits with
some support. He needs to be carried from the bed to chair to sit and watch
television. He makes different kinds of sounds during the day, some of which is
interpreted by his family members. Clinical tests show that he has normal hearing
and vision. On observing him it is difficult to assess, if Nikhil identifies what he sees
or hears. He gets at least 3 to 4 epileptic attacks everyday and has been hospitalised
for respiratory disorders numerous times.
Nikhil is diagnosed to be MDVI. He has severe mental retardation, cerebral palsy,
epilepsy and other serious medical needs.

Nikhil receives support from a trained caregiver, thrice a week at his own house. The
rehabilitation programme stresses on providing some relief and spare time to the
family members, particularly the mother, from the strenuous physical care of the
child.

Laxmi is a seven-year-old girl. At 2 years of age, she was diagnosed to be visually

impaired. At 5 years of age, the parents realized that laxmi could not hear too. Till
almost 5 years of age she was surviving only on fluids and not a stitch of cloth on
her body. She continues to stay awake during the night and sleep in small spells
during the day. She bangs her head, scratches others when they touch her. She
prefers to sit by herself in a corner and rock her body and hit her ears continuously.

She is clinically diagnosed to be MDVI- totally blind and has profound hearing
loss in both ears.

Laxmi is now attending a special Unit for deafblind children. Laxmi’s parents are
happy that she has developed a daily routine. They are also developing skills to give
Laxmi time to understand the objects and people around her and are responding to
her basic gestures.

Balram, six year-old, is diagnosed to have cortical visual impairment. He can make
out dark shapes and shadows around him. He is diagnosed to have mild hearing
loss in both ears. He is fitted with a hearing aid. He is benefiting form speech
therapy and uses speech to communicate with people. He has developed basic
Braille reading and writing skills. He takes active part in sports activities.

He is diagnosed to be MDVI – partial vision and partial hearing.

He is attending classes at a school for the blind. He also receives intensive speech
therapy. Based on his performance after another year, he may be able to attend the
neighbourhood school while receiving the similar additional support.

These are a few examples, a few real stories, of children who are going to be discussed in
this article. And from these examples we can see that there is no one particular category or
nature or combination of disabilities that we can call as Multi-disabled Visually Impaired
(MDVI). So that brings in the question of – How do we define it?

Definition – and its components

The population of MDVI includes visually impaired children with one or more of the following
conditions, occurring simultaneously in a child. These conditions are:

• Varying degrees of Mental Retardation

• Cerebral Palsy
• Autism
• Deafness or Hearing Loss
• Physical Disabilities, including Orthopaedic Handicap, Polio, Paralysis, delayed motor
development etc
• Emotional Disorders
• Neurological Impairment
• Communication Disorders
• Epilepsy
The combination of disabilities may vary from child to child and the degree of severity is also
different in each child. The time at which the disability occurs in the child, what is known as
the ‘age of onset’, may also range from birth to a few days after birth, from early childhood till
late teens. Sometimes children are born with one disability but acquire the second or third
disabling conditions during childhood. The characteristics and the needs of the children
depends on the nature of combination of the disabilities, the age of onset and the
opportunities that has been available to a child in his environment.

MDVI refers to: a combination of two or more disabling conditions that has a
combined effect on the child’s communication, mobility and performance of day-to-day
tasks.

We can say that just as every child is different, similarly every child with MDVI is different.
However there are some things that this group of children have in common.

• It affects the all round development of the child.

• Communication with the world around is most severely affected
• Opportunities to interact with the environment becomes very limited
• Ability to move around in the environment is restricted
• Need regular help in simple day-to-day activities such as wearing a shirt, opening a
door, finding a chair to sit down and so on.
• A highly structured educational / rehabilitation programme helps in their training

Characteristics
Children with MDVI show some of the following characteristics:

Vision problems:
75 – 90% of our understanding about the world around us comes through our eyes. Children
who can see are looking around and remembering things that they see everyday happening
around them and learn about the world. For example, a baby sees his mother appear with a
bottle in her hand and picks him up to feed him milk. This happens many times during the day
for many days. And so when the child sees the mother with the bottle, he remembers that it is
time to get his milk – something that he loves. But for a blind child, who does not see all the
actions before getting the milk in his mouth, does not realise till very late in life, what a bottle
stands for or why the mother picks him up at different times for different reasons. For a blind
child, objects appear and disappear without the child knowing from where it came from. Days
become a series of ‘magic’ tricks for them. As children grow, some of them appear to always
squeeze their eyes together to look at something closely, or keep looking at their moving
fingers/paper, bump into things while walking, complain of too much light all the time. Their
eyes may also look different from ‘normal’ eyes.

Hearing Problems:
Hearing loss cuts a child away from the people around him. Thousands and thousands of
conversations take place all day around us. But deaf child is not a part of the talking world, if
we do not take special care to include him in these conversations. His learning is limited to
the immediate environment that he can see in front of him. A boy walking around in the
playground misses the jokes made by his friends. He does not know about the sounds made
by the different vehicles that he sees on the road or the differences in their sounds. A child
with a hearing problem may also respond to only particular sounds. They may take a long
time and repeated training to develop speech. And mostly they may only repeat what they
hear. They may also learn to adapt to their routine environment by ‘guessing’ the
conversations going around, but may actually face a lot of difficulty in a new place with
unknown people. Sometimes deaf children also show difficulty in balancing their body or
walking in a straight line.

Learning problems:
Due to the combined loss of two or more disabilities, the rate and speed of learning of the
children is also very slow. The presence of mental retardation also makes it more difficult for
the children to understand and remember the different actions and objects happening around
them. Learning often becomes repetitive and meaningless, unless special care is taken to
make the child feel safe about exploring the world around him. Children are not motivated to
move around or participate in the actions taking place around them. This is due to incomplete
information about the world, adults not trying the make things simpler for the child to
understand and no previous examples to remember and repeat. For example a child learns to
copy ‘cat, boy, apple’ but cannot recollect their spellings when asked or identify an apple
when it is cut in pieces. Children develop their unique styles of learning different from normal
children or even children with single disabilities. Multi handicapped children also have very
limited ideas to play with toys or things around them. They may ‘fix’ on one particular toy or
household object and want to hold and play with that object all the time.

Communication:
Communication is probably the one area that is most significantly affected in children with
multiple disabilities. Lack of hearing, limited view about the world around, little opportunity to
move and explore things for self, severe medical conditions, all add up to the child having a
very distorted perception or different opinion about the world around him. The children are
unable to see or hear or follow the different ways in which their brother and sister play with
each other, elders are greeted, standing in a line to get a ticket or passing a bottle of water
around a dining table. Such things only makes it more difficult for the child to interact and
maintain relationships with people around - express things when he wants more, tell people
that he does not like it when they touch him too much. Children often do not realise what is
going on around them and how they can be part of their family or school’s daily life. And the
methods that these children may use in communicating such as gestures, signs, body
movements, vocalisations etc may not be understood by others and thus people around them
do not attempt to interact with multi handicapped children, thus making the world a very
narrow and lonely place for them

Posture and Mobility:

Our sight, hearing and body movements help us to move around, without bumping into things,
remember the way to reach places or even to use our own hands to hold and look at things.
Presence of Cerebral Palsy, locomotor disabilities, and balance difficulties makes it hard for
the child to manage his own body movements sometime and so it becomes very difficult to
use his body to move from one place to another. Lack of vision or hearing or sometimes both,
leading to deafblindness also results in odd postures in the children. For example, children
may not be interested to keep their heads straight because they cannot see or hear anything.
Crouching, head bending, curling up like a tight ball, head tilted to one side are some of the
postures regularly seen in children with multiple disabilities.

Odd Behaviours:
Most children with multiple disabilities show strange behaviours that are called ‘self-
stimulating’ behaviours. Some of these are moving one’s body repeatedly, shaking head side
to side, moving fingers in front of eyes, hitting or slapping the ears, standing a swinging at one
place and so on. The children mostly do this due to lack of anything else to do. Sometimes it
is important for them to continue doing it from time to time as it helps them get some
information about the world around them in their own special way. Children with both sensory
losses, deafblindness, show disturbed sleep patters. They would not sleep at nights and
would sleep only in short spells during the day. Some children, who are born blind, show
great resistance to any kind of touch. They refuse to wear clothes and may withdraw from any
kind of unfamiliar touch – touching him, a cold or hot object given in his hands etc. Such
children are also very poor eaters and do not like to try out different kinds of food. They take a
long time to chew and bite food.

Medical Conditions
Most multi handicapped children also suffer from other medical conditions such as epilepsy,
frequent eye and ear infections, respiratory disorders, muscular degeneration, and frequent
surgeries and so on. Such medical conditions lead to frequent hospitalisations and the child
again misses out on a lot of exposure and learning from the environment.
Causes:
Pre Natal Causes

Infections:
Some prenatal infections such as Rubella, commonly known as German measles, Aids,
Herpes and Syphilis lead to disabilities. The main cause of deafblindness in children in the
developed nations, used to be rubella contracted by the mother during pregnancy.

Syndromes:
Many syndromes like Down’s syndrome, Ushers Syndrome, CHARGE syndrome, Goldenhear
syndrome, Tourette’s syndrome, Lawrence Moon Bidel Syndrome, Noorie’s Syndrome etc
also lead to multiple disabilities by birth.

Trauma:
Trauma to the mother or foetus at an early stage of pregnancy also leads to multiple
disabilities on birth. Low weight of the mother, un-prescribed drugs is also some of he
reasons.

Causes at time of Birth:

Pre Maturity of birth is one of the main reasons of multiple disabilities. High or low amount of
oxygen, chocking or difficulty to breathe at the time of birth leads to brain damage resulting in
disabilities. Low birth weight is also another major cause. Other trauma during birth such as
prolonged labour, lack of proper medical care during delivery etc is some of the other main
causes at the time of birth.

Post-natal Causes:

Head injury, Stroke, seizures, Encephalitis, Meningitis and accidents are some of the
significant causes for multiple disabilities.

Family – Support and involvement:

Parents and family members play a central role in the lives of all children - especially those
who are multi handicapped. A partnership between parents and professionals is very
essential for ensuring that children who are multi-disabled receive every opportunity to
achieve their potentials. By strengthening this partnership, there is a great deal of learning for
both the sides. And this stands to help the child reach his maximum potentials.

The Importance of family

For most of us, the family is the constant thread in our lives. Our abilities as adults to be
trusting and confident are greatly rooted in our relationships – good or bad - with our family.
And this is true for all children, including the multi handicapped children. The development of
many skills depends upon the child’s opportunities to freely and safely explore. Close physical
and emotional contact has a tremendous impact on the learning abilities of the child. From the
child’s point of view, the mothers’ arms stand to represent the whole world. Although there is
always a lot of sounds and movements around the child, it is the mothers’ touch, voice and
looks that are the most meaningful for the child till many years into development. As the skills
to use his eyes, ears and body increases, so does his world expand to include more people
and objects around him.

Parent- Professional partnership

Just as every child is unique, so is every family. They have their own concerns, worries
strengths and priorities. It is important for the professionals to respect this. From the part of
the professionals it is also important to respect the privacy needs of the family. It is essential
that both parents and professionals have realistic expectations of each other’s time and
efforts with the multi handicapped child. The family’s involvement in their child’s daily routine
activities helps them to learn as much about their child’s joys and strengths as it helps the
child to learn and grow better.

Building up the partnership

It is therefore the responsibilities of the professionals to help the parents to get more and
more tuned to look at the different and unique ways in which their child is growing and
learning. To help parents and other family members, build an equal partnership with the
professionals, the latter can:

ƒ Give more information about multiple disabilities to the family

ƒ Build more methods and ways that can help the family members to get small but
positive experiences with the multi handicapped child.
ƒ Develop more ‘Touch’ and ‘movement’ techniques in family members for interacting
with the child.
ƒ Help look at every effort made by the child to communicate with his family member
rather than depend on the common speech and reading writing methods.
ƒ Open new ideas for looking at their multi handicapped child’s strengths and skills that
are different from their normal brothers and sisters.
ƒ Involve the family members in the activities and decisions of the organisation
ƒ Encourage and support them to speak up for their own and their multi handicapped
child’s rights in the community.

Changing role of parents in India

With services for disabled children increasing in the country there are increased chances for
parents to meet with teachers and other professionals closely working with their deafblind
child on a regular basis. In India, where the Individualised Educational Method (IEP) is being
used to work with the disabled children, parents are using their knowledge and priorities to
influence the decisions taken by the professionals for the future of their child. This is not only
true in big cities and special centres, but across the country in Community Rehabilitation
programmes (CBR), too. Parents have been meeting other parents at local, regional and
national levels. And one of the common concerns during this meet, is the need to constantly
update their knowledge on deafblindness so that they can be equal and true partners in the
decision making process for their child. The National Trust is a facilitating body that strongly
believes in this approach and implements it through all its key activities

Learning Needs of children with MDVI

MDVI children fail to search and explore the environment on their own. They are confused
about the environment around them and often withdraw from the environment. Simple day-to-
day skills such as eating, dressing, washing etc will be difficult to learn as they often cannot
learn by just imitating or looking at others. They will not learn things naturally but need to be
taught simple things repeatedly over a period of time in the same way at the same setting.

Some of the learning characteristics of MDVI children:

Isolation: This is a big obstacle in learning as children are either not aware of what is going
on in the environment around them or they do not understand their role in it.

Individual Instructions: Due to the many different problem faced by the children and the
need to bring the world closer to the children with multiple disability, individual instructions
help to a great extent. Close physical proximity also makes the children feel safe and secure
to explore the world by themselves
Reliance upon interpreters: Communication need is a primary need. And not all persons
around the child will know how to use gesture or signs, or specific sounds and objects to talk
with the child. The children therefore need people around them all the time that can be the
link between them and the world. This limits their experience and learning.

Limited social experiences: Fear from both sides – adult and multi handicapped child, due
to limited communication methods, makes it difficult to know each other better and develop a
relationship.

Multiple hospitalisations: Children may need to get medical care very frequently at the
hospitals. Because of this, there are frequent breaks in their schooling or other training
routines.

Bonding: Effect of multiple disabilities at birth or at a very young age leaves the mother
confused and fearful. The child also does not reach out to the mother, as a newborn child
would do. Detachment between mother and child begins in the early months itself.

Establishing ideas and concepts: Children with multiple disabilities, especially

deafblindness have a great challenge in remembering and objects and actions when the
same are not in front of them to touch all the time. For such a child – an object does not exist
if he is not touching it

Restricted mobility: Limited ability to move around due to poor motor development, cerebral
Palsy and other locomotor difficulties reduces the chances of the child to move around and
explore things by self and learn about them.

Reduced Motivation: Multi Handicapped children, in general show low interest to move
around and explore things for themselves. This is due to either their motor problems, or lack
of a ‘seeing’ or ‘hearing’ image of the world around. More often children are not able to follow
the quick and efficient movements of the adult world unless care is taken to show them the
world at their pace.

Teaching MDVI Children:

The family members and teachers, caregivers and therapists etc have a constant challenge
on their hands to provide clear and precise information to the multi-disabled child. At times,
the adult needs to act as if they are the eyes, ears and hands of the child to understand what
is going to be meaningful and relevant to teach the child.

It is also essential that a good emotional relation between the multi-disabled child and his
care-giver develops, because it is the person and not the specific training activity that will
motivate the multi-handicapped child to try and do things.

It is helpful for the child to feel successful at every attempt that he takes. The role of the
caregiver in understanding what interests the child, how long can he keep the child’s attention
and sometimes, physical energy at a particular task is also important.

It is important to provide a multi-disabled child with a reactive environment rather than a

directive environment. The child and his caregivers need to do things together, rather than the
child being told what and how to do things all the time.

Mother, father, brothers and sisters, grand parents, teachers, therapists, medical doctors,
community workers etc. all form a part of this teaching and learning world for the multi-
handicapped child.

Giving choices for communication, problem solving, exploration and independent mobility are
the key areas. It is important to think about ways to help the child, to know what will be helpful
for the child to learn in his life.
Constant interaction between child and his parent or other caregiver is important. This will
help build a safe and trustful world for him.

Each attempt to teach the child new skills in life, needs to focus on the multi-handicapped
child’s residual senses and other remaining strengths. It is always helpful to introduce each
teaching activity in such a manner that the child makes use of all his strengths.

Building learning activities into the child’s regular day-to-day life helps him to understand and
use the newly learnt skills better. It helps a multi-handicapped child to use newly learnt skills
within his immediate routines.

Reward and reinforcement are very very basic to the learning environment of the child.
Attention and praises will not spoil any multi-handicapped child any more than it would spoil
their brother and sister.

Guidelines for Developing A Teaching Programme for MDVI Children

Independence is the goal: No matter how small or big the task is, the child should learn to
use it to make life easy and simpler for him

Teach skills that are functional and meaningful: With the limited opportunities available to
the child, it is wise to teach him things that are directly related to his environment and those
that he has high chances of doing through out the day.

Teach skills in a natural setting: This point can never be stressed enough number of times.
Child is able to remember things that they learn while going through there day to day routines.
This helps them to learn better and remember.

Break tasks into small steps: Small steps help children to practice better and remember
better.

Provide assistance as needed: Encourage the child in every attempt. Do not laugh at or
scold the child when he is trying his best with you.

Provide repeated opportunities to practice skills: This will help the child to get repeated
opportunities to try out the activity again and again.

Take advantage of the teachable moment: Sometimes you may not plan to teach an
activity, but the child shows curiosity to explore a particular object. Use this time to leach him
more about that object.

Speak to students using normal language and voice: They would understand that. We
need not shout and scream or order them because we are trying to teach them

Use real objects: when experience to know about the world is so limited, it is better to use
objects that he sees and uses everyday, rather than expensive and unusual things with him

Develop Routines: Have fixed timetable for the day with the child. This helps the child to
have more control over his life and to anticipate what is going to happen with him next. This
also helps to encourage communication attempts by the child immensely.

Multi sensory approach is the best: It is best to make use of all remaining sensory abilities
of the child – seeing, hearing, touching, smelling and movement should all be a part of the
teaching moments.

Plan inclusive activities: With highly individualised activities being planned for the child,
there is always the risk that either the parent or one care giver is constantly trying to teach the
child. Remember it is important for the child to know what others are enjoying doing and for
him to be a part of that too. Plan certain activities that he can do with his brothers or sister,
neighbours uncles and aunts
Make use of resource persons from the community: An old grandmother from the
neighbour’s house or your local chowkidar or even your school gardener can teach your child
something essential in his life. Take the best advantage of these ‘teachers’

Be an advocate for the child: If need be, speak out for your child, and fight for your child.
Make sure that at least you are giving the best of yourself to the child.

AND ABOVE ALL – ‘BE POSITIVE’

When do you know, if your teaching efforts are helping the child at all?
When the multi-disabled child begins to:

• Enjoy the caregiver being with him

• Anticipates routine activities like bathing and eating.
• Cooperates, even passively, while you move his hands and body.
• Shows enjoyment and preference for a particular activity that you are doing with him
regularly
• Uses his remaining vision, hearing and movement
• Attempts to ‘talk’ to you through different sounds, body movements, gestures or signs

Services for MDVI Children in India

The field of multiple disabilities is slowly emerging in the country. It is a new field and there
are many questions and confusions about it. But it is encouraging to share that; this field is
growing at a very healthy speed in a positive direction. The main reason for this is the
awareness among the parents of multi disabled children to get more information regarding
their children and provide the best possible support and services to them. This has led to
many parents, some personally and some as a larger group approach their local school and
government authorities to assist them in their efforts.

Parent initiatives has helped local agencies to become more and more sensitive about this
group of children, who have either not been identified as a special and unique group till date
or have been misdiagnosed and referred to places that are not appropriate for Multi-disabled
children. With growing awareness on the presence of such children professionals also realise
the need for specific expertise and skills to work with these children.

There are wide spread efforts around the country to lobby with the government to initiate
schemes and support programmes that shall help children with multiple disabilities right from
infancy to adulthood. The National Trust is a government body that has been set up to
promote positive efforts in the area of multiple disabilities as one of its key aim goal. The
National Trust recognises multiple disability as a separate and unique group having its own
identity and needs as discussed in the sections above. It supports activities for this group
through awareness spreading activities, material development, Human resource
development, facilitating local agencies throughout the country to provide services to children
and adults with multiple disabilities and their family members. One of the major highlights of
the National Trust is its vision for the parents of the children. It believes that parents are the
key persons in decisions involving the present and future of their children and therefore
promotes it through its various local, state and national level activities.

Multi-handicapped children in the country are currently receiving services at special schools
for mentally retarded children, Blind schools and deaf schools and centres for children with
Cerebral Palsy. Some children are also attending specialist centres for autistic children.

There are a few specialist services for multi-disabled children in the country. These services
cater to specific categories of multiple disabilities such as-
 • Deafblind children,
• Blind multi handicapped children,
• Deaf multi handicapped children,
• Blind cerebral palsied children and so on.

These services are provided to children at specialist centres, or at their own homes with the
help of a caregiver, in the village settings with the support of community based fieldworker.
Some children are also receiving training at special residential centres. In other words, centre-
based, home-based, community based and residential service option is available to the
children.

However, these facilities are very few and mostly found in bigger cities. Most of the MDVI
children and their family members are still unidentified and isolated in their struggles in most
parts of the country, from cities to villages. There is a great need to identify such families and
reach out to them as best and as quickly as possible.

Prepared by: Akhil Paul, Director, Sense International (India), Ahmedabad

Website: www.senseintindia.org Email: akhil@senseintindia.org