| SAMADHAN
is a Delhi based Non Governmental Organization registered in 1981
December under the Societies registration Act of 1860. (Reg.No.1283).
At this time what was available to persons with mental retardation
in Delhi was negligible. The few schools and organizations which
provided services were located mostly in urban Delhi. The children
and families living in the slums and the poverty packets, had no
recourse to support services of any kind. Yet this was an area where
the need for services was greatest. Delhi has the peculiar characteristic
of residential "resettlement colonies". The name indicates the process
by which under the slum clearance scheme launched by the then Government
some years ago, slum dwellers were shifted to new locations and
given 22 square yards of land to construct their own homes. Although
this was an effort to improve their living conditions, the thinking
did not extend to provision of better Hygiene and sanitation facilities.
Consequently, these resettlement colonies are presently huge sprawling
habitations where large numbers of families live in cramped accommodation
with insufficient civic, health and other basic amenities. There
are forty-eight resettlement colonies in Delhi apart from the Jhuggi
clusters which are slums. About 10 to 12% of the population in India
is estimated to be living in slums.
Most of the residents of
such resettlement colonies are migrant laborers and theirfamilies who come
in from nearby states for short periods to find employment or better their
prospects. As such, they are a heterogeneous mix of multilingual, multicultural
and multi-religious groups. Most of them have a minimum of about fifty
thousand households with an average of five to eight members in a family.
They are mostly illiterate though the younger generation does have access
today to free schools run by the Delhi Administration. The general attitude
of such communities towards persons with mental retardation is one of apathetic
acceptance at best and downright neglect at its worst. Many families are
still shackled to myths and superstitions about disability and in particular
about mental retardation. The lack of services within accessible distance
coupled with the lack of awareness and sensitivity to the problems faced
by the mentally retarded and their families by the community of which they
are a part further aggravates the situation.
SAMADHAN‘S first program
was undertaking an informal study of the situation pertaining to the education
and training available to the mentally retarded in the city of Delhi. The
study revealed that only the child in the school going age group i.e. the
child between the ages of five plus and seventeen plus had some opportunities
for education and training. But even here the infant and preschool child
and on the other end of the scale the adolescent and adult person with
mental retardation did not have programs geared towards their specific
needs. Thus the child below five years of age lost valuable growth and
development time. Those who left school had no chance of further education
or training which would lead them to some form of meaningful employment.
In particular it was the mentally retarded person living in the low income
areas who suffered the consequences of the double handicap of poverty and
disability. It was to plug in these lacunae in the delivery of services
that SAMADHAN was started.
Our first priority was on
programmers for families in the low income areas and specially the child
in the preschool age group. The mission Statement which evolved over the
years spells out our philosophy which states that "all persons with mental
retardation can be helped provided they are given timely and appropriate
support ". The strategy adopted was based on grass root realities. As far
as possible resources of both manpower and materials where those that were
already available in the low income communities which were the target areas.
In keeping with this, our planning was based on the transferring of specific
skill to members of these communities. The goal was to provide suitable
training and information to help thee deliver the services themselves,
with SAMADHAN acting as a catalyst and offering technical expertise.
In 1982 a small group of
volunteers did a house to house survey in a low income resettlement colony
in South Delhi called DRKSHINPURI. The survey was conducted by University
students who belonged to the NSS (National Service Scheme) and was an informal
compilation of data. The WHO Ten question Checklist (TQC) was used initially
to identify families with children with any kind of a disability. This
coveted also disability caused due to environmental and cultural deprivation.
It was found that 90% of the families with children who were frontally
retarded had made no efforts to seek a professional opinion nor did they
have recourse to any kind of support or relief either from their own families,
community or local and Governmental health programs. The National Institute
for the Mentally Retarded itself was started only in 1984 .In contrast,
children with other disabilities did have a comparatively easier access
to support programs and the families also were more aware and informed
about the child's handicap. In a nutshell this summed up the low priority
given generally to programs for the mentally retarded.
The input most necessary
at this juncture was the sensitization of the community at large and enhancing
the awareness, information and knowledge of bath families and community
. Finding that written information literature was useless in an area which
was largely illiterate, puppet shows were scripted and performed to create
awareness of mental handicap in the community. This along with the video
cassettes and slides prepared at a later stage have now become a regular
component of the campaign for awareness of mental retardation and is incorporated
into our class room teaching and other training as well.
The first SPECIAL EDUCATION
UNIT was met up in Dakahinpuri with three children.
This Unit groan reached
a stage where the children needed further education and training opportunities,
having reached their teens. A Vocational Training Unit was therefore added
to accommodate these children. The choice of vocation was based on the
ecology based curriculum formulated after an informal study identified
the skills most in demand in a given community/target area and therefore
with the most potential for success. In 1986, anticipating the need
of families with infant children born with mental retardation or
"at risk" far delayed development Dr. Peter A. Woods of the Bryn–Ny–Neudd
Hospital in South Wales, who is an internationally respected authority
on the PORTAGE MODEL OF SERVICE DELIVERY was invited to conduct workshops
for us. This program identifies children with disability a, early as possible
and puts in place appropriate intervention techniques with the active and
positive involvement of the parents. Thin resulted in "The HELP THE HANDICAPPED
AT HOME" Program, which was started in early 1987.
However after a period of
time, we had to make certain adaptations in the Portage Model to suit the
low social economic character of our target areas to make it more culturally
appropriate. We also began to make imaginative innovations to find ways
of involving the member of the community to take on the responsibilities
of the service delivery. Literature and examples of similar programs elsewhere
were mostly inappropriate and could not be transferred wholesale to suit
our uncork ethos. We found that given the socio–economic situation
in India, the tremendous need for services and the paucity of these services,
the best method of reaching those in need was to provide them with the
infrastructure of professional support and relief within their communities
and within commuting distance of their homes. This was in direct contrast
to the concept of Institutionalization of services, which was prevalent.
Here the parent and child must present themselves periodically to the service
organizers for help. This was a procedure which many of the families in
our target communities could not adopt since most of them were daily wage
laborers and economic necessity demanded that both parents work for a living.
Our thinking also reflected the global realization that institutions did
not cover the range of services necessary.
The strategy adopted was
to recruit workers from within the community and give them a basic training."
the HOME INTERVENTION PROGRAM, which was, now launched has evolved into
a distinct two pronged approach. The Home Intervention and the Centre Based
Support Program. The first is delivered by workers called HOME ADVISORS
from within the community and were identified and trained in specially
designed training programmers. The second is Centre based and staffed by
a multidisciplinary team of specialists. All the assessments screening,
diagnosis, the individual educational and training programs for each child
and all the therapy requirements are done at the Centre. Counseling and
guidance of parents and individual and family therapy farm a part of this.
The multidisciplinary team also undertakes in-house orientation of staff
and the training of Home Advisers, the six monthly reevaluations of children
already in the new various units of the program and the initial assessments
for new admissions.
The advantage of utilizing
the skills of trained local community manpower was the immediate rapport
they established among the families they visited. It also induced active
involvement of those in the community who had the time and the inclination
to work for the better future of the members of their own community who
happened to be mentally retarded. Some of these workers had a high school
education but there were many and in particular the older workers who had
no education at ail. But careful nurturing through periodic orientation
workshops coupled with opportunities for "hands on training " has resulted
in a group of very dedicated and loyal workers.
The HOME INTERVENTION PROGRAM
aims at transferring the skills of home management of the mentally retarded
child to the parents or care giver. The Home Advisors visit families in
rotation for one to two hours a week and demonstrate techniques, which
the mother then follows on her own. This has become a simple and cost effective
way of providing support to the family and is very successful.
A REHABILITATION CLINIC was
started as a support to the Home Intervention Program. In a situation where
the Home Adviser could not cater to some of the demands made on them they
refer the child and the family to the CLINIC where the professional services
of five member multidisciplinary team is available. Where possible the
appropriate intervention is carried out at the Centre itself. For specific
inputs such am surgery or fitting of hearing and orthotic aides etc. referrals
are made to other agencies or organizations.
The HOME INTERVENTION and
the CLINIC together provide a comprehensive COMMUNITY BASED REHABILITATION
PROGRAM (CBR). This makes extensive use of the trained and motivated workers
from within the target community. Our experience and a study of the needs
of the client families, which emerged, indicated that we focus on the early
identification of disability and the prevention of disability rather than
rehabilitation programs. Rehabilitation to be truly successful should lead
to independence and acceptance by Society .It is not an end in itself but
an ongoing process. This rarely happens. Our expertise gathered over the
years also supported this
The present focus therefore
of both the Home Intervention and the Rehabilitation Clinic is on the infant
and preschool child. In an effort to prevent the onset of secondary handicaps,
both children who are mentally retarded as well as those children at "risk"
for delayed development are identified as early as possible and preventive
intervention programs put in place. The responsibilities of the Home Advisors
therefore includes the identification of families who need help, locating
motivated persons to undergo training as possible Home Advisors, the actual
home visits and liaison with the professionals at the Centre. Some of them
also help in the actual running of the Special Education and the Vocational
Training Unit at the Day Care Centre by providing inputs within their capacity.
Since most of the workers
have at best middle school education only the training done had to depend
on visual and practical inputs. Therefore a video on training parents,
Home Advisors as well members of the community called EK KADAM AAGE (One
Step Forward) was made. It graphically illustrates the methodology of training
an infant or a preschool child in skills which are necessary for daily
living and which prepare the child for interaction in a school set up or
in society. Shot on location in Dakshinpuri itself using the Portage Model
of service delivery, the advantage of this film is that it shows how anyone
with motivation but not necessarily academic education can work effectively
with these children. A number of slides have also been prepared. Alertness
to the changing ambience of the low-income target areas and imaginative
innovations to meet the new demands which are constantly surfacing have
become a part of the planning process.
Apart from our programs in
the low-income areas, a center-based service called THE EARLY INTERVENTION
CENTRE also functions five days a week providing specialized services to
the child in the 0 to 6 age bracket. This operates form Vinobapuri (Lajpat
Nagar), which is an urban residential area and caters mainly to middle
income families. The program is provided in an enriching and stimulating
atmosphere and the child allowed to work at her own pace. Special sessions
in the afternoons provide extensive therapy as indicated through the assessments
for children who cannot attend the regular morning school. Most of these
children are severely retarded and no other school accommodates them. 4
DISTANCE TRAINING PROGRAM is conducted from this Centre where families
from outside Delhi come far an initial assessment but return to their homes
to carry out the written programs given to them.
An extremely innovative and
successful program has been attracted in Dakshinpuri. This is the inclusion
of DRAM4 THERAPY, which uses the techniques of drama as a therapeutic tool.
All the components of drama such as music, rhythm, movement, voice, and
dance areused to enhance specific skills in the child. Working in close
collaboration with the Occupational therapist and the Clinical Psychologist,
Drama Therapy has become an integral part of the curriculum. Introduced
to us by Dr. Sue Jennings of THE INSTITUTE OF DRAMA THERAPY in the U.K.
we were instrumental in introducing Drama Therapy into India through an
all India workshop. Successive workshops have helped us to establish this
medium of education .Our goal now is to transfer the techniques of drama
therapy into the rich Indian tradition of dance and music.
Our experience in DAKSHINPURI
where we made many mistakes and tried different approaches helped to finally
arrive at a viable and replicable program. It has resulted in four other
centres. TRILOKPURI in the east of Delhi, ASOLA VILLAGE and VINOBAPURI
in the mouth and BURARI VILLAGE in the north. 411 of them, except Vinobapuri
which is a middle income residential area, share more or less common characteristics.
Approximately 400 children
benefit from a continuum of services in our five-Day Care Centres. Special
Education is offered to children in the 5 plus to 14 age group, Vocational
Training to the 14 plus and Early Intervention to the 0-6 yrs. The statistics
from the Rehabilitation Clinics tend to fluctuate since many of the families
migrate into the city when there is a season of maximum employment and
spend the rest of the time back in their villages.
An INFORMATION AND DOCUMENTATION
UNIT has been initiated to cater to the many requiring information on various
aspects of disability and mental retardation in particular.A REFERENCE
LIBR4RAY has about 500 books on mental retardation and magazines
and journals from all over the world. There is also a small library of
videocassettes and slides. Considerable referrals are done through this
service matching parents needs with service providers not only in India
but all over the world. The need we seem to fulfil is for information since
most of the requests we receive are from research students, in India and
abroad and from parents seeking support services.
As part of this Unit we bring
out a Newsletter called SAMADHAN NEWS which is published as a quarterly
issue. It has a worldwide circulation of about 1000. Periodic bulletins
on issues of relevance and importance are also published with the aim of
providing up to date information to parents and professionals working in
this field. Another aspect of this Unit is the organizing of seminars and
workshops dealing with topical issues and which highlight the needs of
the mentally retarded. Training programmers by our multidisciplinary team
is also undertaken for parlors of other NGO's. Video shows and talks to
schools and colleges help in disseminating information about mental retardation
and dispel many superstitions and myths.
As affiliate members of the
world body INCLUSION INTERNATIONAL since 1988 with its headquarters in
Brussels and representing India on the ASIAN FEDERATION FOR THE MENTALLY
RETARDED (AFAR) we are in constant touch with global happenings and in
particular news of latest research and trends in services for the mentally
retarded. This helps in aligning our work and our priorities to present
day realities and expectations. We act as advocates for this most vulnerable
group in our Society by highlighting issues either through the Newsletter
or organizing seminars and workshops to debate these issues.
Although
started as a single disability program there has been a paradigm shift
towards catering to all disabilities except the visually handicapped. Consequently
our programmers have taken on an integrated approach and admission is given
to any child who is in need but our main will always remain an the child
with mental retardation.
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