| The Present Scenario:
The field of sensory impairment and multiple disability
is a new and emerging field in our country but one of the strengths of
this field is its professional and cohesive approach. Professionals have
been learning from each other and even at this at this early stage are
adding a component of work with children with additional disabilities
to their work with children who are deafblind. To date, the initiatives
taken in this field have been very needsbased. As a result, services vary
according to the characteristics of the region, the target groups and
the purposes they serve. This has led to the development of a wide variety
of forms of intervention and a diversity of models in the field in a short
time span.
Deafblindness is a condition in which there is a combination of visual
and hearing impairments that cause "severe needs in the areas of
communication, mobility and accessing information". Children who
are deafblind or multiply disabled are often isolated from schools because
they require thoughtful and unique educational approaches to help them
towards their full potential. For deafblind children and their families,
the Salamanca Statement was a breakthrough. It was the first major international
declaration to make reference to the specific needs of deafblind children1.
However, in the experience of Sense International (India) and its partners,
Salamanca has had little or no positive affect on the numbers of deafblind
children2 gaining access
to formal educational opportunities, and there continues to be little
understanding of how a deafblind child can be helped to flourish within
either mainstream or specialist settings. On the contrary, the Salamanca
Statement has been used as a rationale by governments for reducing the
funding available to the special education sector. The overwhelming majority
of deafblind children remain as excluded now as they did in 1994.
The Persons with Disabilities (Equal Opportunities, Protection of Rights
and Full Participation) Act gave a major boost to the disability sector
of the country. By identifying the major disabilities and specifying parameters
for identification and service delivery, it attempts to build an infrastructure
in the country that will be appropriate and accessible for the population
of people with disabilities in India. However "Multiple Disabilities"
is not recognised as a separate and unique category of disability within
this Act, which was passed in 1995. Subsequently many professionals and
parents of people with multiple disabilities and visual impairment came
forward and lobbied the Government about the needs of such people. These
efforts resulted in increased identification and the establishment of
preliminary services for persons with multiple disabilities, which in
turn led to stronger lobbying for the recognition of people with multiple
disabilities as a distinct group.
" The National Trust for Welfare of People with Autism, Cerebral
Palsy, Mental Retardation and Multiple Disabilities" does recognise
Multiple Disability as a separate and unique category of disability. It
supports the needs of multiply disabled persons and their family members
by promoting and facilitating awareness workshops in rural and urban communities;
collating and disseminating information on multiple disability; and helping
local organisations set up day care and respite care services for children
and adults with multiple disabilities. The National Trust has been a boon
for parents of children with multiple disabilities and one of the major
strengths of the Trust is its vision for the parents of these children.
It believes that parents are the key persons in decisions involving the
present and future of their children and this principle is being promoted
through its various Local Level Committees and activities.
Present Schemes and Deafblindness/Multiple Disability:
We all agree that there should be free education for primary school children
and free midday meals for schoolchildren from families living below the
poverty line. In a true sense there should be - "Education for all".
Such schemes have reportedly pushed up the school enrolment ratio, and
more and more younger children are coming to school - including the girl
child. Families of deafblind and multiply disabled children in rural areas
often decide to send their child to the school on the basis of the availability
of a midday meal (which is quite logical). As educational professionals,
this provides a tremendous opportunity for us to include these children
in mainstream classes and to help them to learn and be independent.
However village classes often contain 35 - 45 children and lessons are
delivered in the open air in front of a dilapidated blackboard. A class
will typically include children from the ages of 6 to 10 years because
there is only one teacher in the village primary school! The teacher is
aware that every child can come to school but has no idea about how to
make changes for teaching a child with disability, let alone a deafblind
child or a blind child with multiple disabilities!
There is a different perspective in the special schools. Traditional schools
for the deaf and schools for the blind often have small groups of students
with additional disabilities. Such students are usually categorised as
'retarded'. If there are about 4 or 5 of them, they may be moved to a
special classroom for 'slow learners'. Such classes will often stop following
the school curriculum and start with wooden puzzles, craft activities
and chair caning.
It is imperative to state here that the key issue therefore is not whether
deafblind or blind children with additional disabilities should be included
in the mainstream school or taught in the special school. The more important
question is - when will we identify and include the support needs of these
children in our educational policies? For example Deafblindness is not
recognised as a distinct disability; national education plans for achieving
"Education for All" do not make reference to deafblindness;
no statistics exist to undertake planning; assessment tools are not available;
children and parents themselves are excluded from consultation.
Community Based Rehabilitation programmes address the issue of inclusion
in an understated way in India. Field workers visiting families in the
village to 'teach'the deafblind children and blind children with multiple
disabilities also signal the message to the community that these children
are educable and that there is the possibility of special provision to
support their learning. CBR programmes also ensure that children are identified
as early as possible. This makes sure that crucial early development period
is not lost.
Promises from the Future:
Special schools need to open their doors:
Special Schools, which include schools for children with mental retardation,
blindness, deafness,orthopaedic impairments, autism and cerebral palsy,
are crucial for taking forward the cause of children with multiple disabilities.
It is certainly a fact that the parents of children with multiple disabilities
approach these schools/centres for guidance and help. Family members contact
school authorities desperate for some kind of positive feedback about
the condition of their child, often after a series of discouraging medical
interventions. The teachers in these schools are the first point of contact
for such parents and children so it is important for specialist teachers
to be aware of the characteristics of children with multiple disabilities,
their needs and demands. Specialist teachers need to develop skills in
conducting assessments and developing rehabilitation programmes within
the purview of their schools. Often the right information or the right
referral at this point for such children makes a huge difference.
Unfortunately the reality has been that children with Deafblindness or
MDVI have been turned away at these special schools as they do not strictly
fall within their designated target group. Sometimes real concerns such
as lack of information and expertise, inadequate infrastructure and poor
staffstudent ratios are offered as excuses, but mostly it is the schools'
lack of sensitivity and willingness to work with children who are multiply
disabled that forces such children back to their cocoon of
isolation and desperation.
Need for better utilisation of services:
As was mentioned earlier, this field is still at a very young stage. Parents,
local Non-Governmental Organisations (NGOs) and government officials are
gradually beginning to look at the presence of Deafblindness/MDVI as separate
and unique categories of disability and are slowly discovering that they
are different in nature from the broader categories of mental retardation,
visual impairment, hearing impairment and even from mental illness. Awareness
about the importance of identifying persons with multiple disabilities
and of providing them with the appropriate services is beginning to emerge.
However, many more bold initiatives and actions are needed on this front.
The infrastructure that is presently available in the country has great
potential to take this initiative forward. The Persons
with Disability Act could identify Deafblindness/MDVI as distinct
categories of disability, which would ensure better identification and
establishment of services for this target group. The National
Trust has the potential to facilitate and establish services to
support persons with multiple disabilities and their family members across
the life span, providing services for very young children into adult hood.
Various National Institutes could become instrumental
in spearheading the identification process and help set up model services
for children and adults, and could also take the lead in developing and
disseminating information on multiple disabilities to various target groups.
Strong NGOs operating at state, district and block
level have a major role in making an impact in the local community. Local
NGOs have wider acceptance within their own regions, and thus are better
empowered to increase awareness. The NGOs are in a perfect position to
raise sensitivity, to screen and identify persons with these needs. They
can interlink with other existing government and private organisations
to create a local infrastructure to provide services for persons with
deafblindness / multiple disability and their family members.
Parent Associations also have a role in bringing
about positive changes in this area. They can seek to influence government
and local organisations to move towards policies and schemes for people
with deafblindness /multiple disabilities.
In India the following priority areas have emerged:
- Identification: The
need of the hour is to identify deafblindness/multiple disability as a
separate and unique category of disability in all relevant statutory laws
and documents.
- Incidence and Prevalence:
It is extremely important at this stage for Deafblindness/MDVI to be recognised
as distinct in surveys, such as the National Sample Survey Organisation
(NSSO).
- Assessment and evaluation:
For effective assessment, it is necessary to develop a mechanism that
could be used across the country (with some regional variations), for
identifying persons with deafblindness/multiple disabilities and their
needs. Such a system will empower even the grassroots level workers to
identify persons with multiple disabilities in their respective regions.
- Human resource development:
As the field is growing, it is essential to involve more and more professionals
from the single category disability areas. We need to look at introducing
specialist programmes for these professionals to create a well trained
pool of human resource.
- Philosophy of Multi Sensory
Impairment education: the time has now come, to promote what may
be called "The Philosophy of MSI Education". This approach,
while it incorporates many ideas and practices of all the other disability
areas such as visual & hearing impairment and mental retardation,
however has a set of codes and good practices that are distinct to the
field of Deafblindness/MDVI.
- Social Communication:
The development of appropriate advertising and information material is
key to spreading awareness about Deafblindness/MDVI and its various implications.
- Networking: People
around the country are beginning to realise the hazard of 'professional
isolation' that often comes when working with such low incidence disabilities.
Therefore there is an urgent need to develop and sustain continuous networking
activities both within the NGOs and with the government sector.
- Advocacy: It is
important that the community takes responsibility for people with Deafblindness
/ MDVI in their own community programmes. And this could be done by advocating
for the rights of this target group and their family members at the local
community levels as well as in a regional and national level.
- Involvement of parents:
Children with Deafblindness/MDVI, their parents and other family members
are the primary stakeholders in the services established around the country.
It goes without saying that that they should be involved in the decision-making
processes which affect them.
Conclusion
The needs-based initiatives of the Deafblindness/ MDVI field have led
to the emergence of a range of new models of intervention and an array
of services adapted to local and regional need. These initiatives are
now forcing us to look beyond traditional approaches and we are seeking
ways in which the best of these new endeavours can be strengthened and
incorporated within the field.
There are several key initiatives currently being undertaken by government
and non-government organisations. There have been regular workshops on
Deafblindness/MDVI to orient teachers working with single disabilities
such as visual impairment, hearing impairment and mental retardation to
the needs of this group. Such workshops aim to equip teachers with the
basic skills needed to identify and work with children who have multiple
disabilities.
More significantly, all the Diploma courses on such single category disabilities
now include a specific module on multiple disabilities. At the end of
the course the special teachers are expected be able to identify additional
disabilities in children and to plan appropriate intervention programmes.
The possibility for developing a distance-learning
course on multiple disabilities for teachers trained and working with
single category disability is also being explored.
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