Inclusion of Deafblind People (Dbp) Through CBR Approach

Inclusion of Deafblind People (DbP) through CBR approach

Madhav Prasad Aryal

Secretary

Ankur Foundation for Inclusive Education

Change in the concept of Rehabilitation Services

The traditional concept of viewing Persons with Disabilities (PWDs) through welfare based approach has been changed towards Human Rights approach. The International Year of Disabled Persons (IYDP) 1981 with its slogan “Full Participation and Equality” opened inclusive door to PWDs from exclusive family, institution and society.

Beginning of Rehabilitation Services for PWDs Nepal

Nepal does not have long history in the rehabilitation of PWDs. Nepal Disabled and Blind Association (NDBA) was established in Kathmandu in 1969. However, education for children with visual and hearing impairment was started in Kathmandu by the government agencies in 1964 and 1966 respectively.

The NDBA started its educational and rehabilitation activities, in a sheltered workshop with accommodation facilities. It was the only institution that served PWDs till the celebration of International Year of Disabled Persons in 1981. The NDBA spitted itself as Nepal Disabled Association (NDA) and as Nepal Association for the Welfare of Blind (NAWB) in 1985. Welfare Society for Hearing Impairment and Association for the Welfare of Mentally Retarded were established in 1984 and 1985 respectively. NGOs provided conventional welfare based services to PWDs till early 1990. Self Help Organizations (SHOs) of PWDs came into existence only after late 1990.

Community Based Rehabilitation (CBR) Rights Based Approach

Many international treaties instruments and Declarations have constantly contributed to focus more on human rights dimension of PWDs than welfare issues. The CBR approach is human right approach. CBR respects disabilities and differences and provides equal opportunities and access without discriminations.

Dr. E. Helander defines CBR as “CBR is a strategy for enhancing the quality of life of disabled people by improving service delivery, by providing more equitable opportunities and by promoting and protecting their human rights. It seeks the integration of the interventions of all relevant sectors educational, health, legislative, social and vocational and aims at the full representation and empowerment of disabled people, promotes interventions in the general system of society, and adaptations of the physical, psychological environment that will facilitate the social integration and the self-actualization of disabled people.”

The UN Standard Rules has also emphasized that “All rehabilitation services should available in the local community where the person with disabilities lives”.

CBR in Nepal

A CBR approach was introduced by NAWB in 1985 to rehabilitate rural blind persons in Nepal. Thereafter Bhaktapur CBR, NDA and many other NGOs and SHOs started CBR activities in their respective areas. The success of CBR program in Nepal can be judged as the Ministry of Women, Children and Social Welfare (MWCSW) has started its support to local SHOs to run CBR programs at local levels. CBR National Network has been working for last seven years to promote CBR in Nepal.

Due to CBR activities local people in communities have become aware on disability issues and realized the capabilities of PWDs. Community people have started appreciating PWDs in their achievements and progress. It has created an inclusive environment for PWDs, specially for persons having single type of impairment. Inclusion of PWDs has been materializing in education, employment and participation in community and societies without any discrimination. PWDs of (both sexes are getting married and accepted by families and communities which was not imagined two decades ago in Nepal. In order to address 2500000 PWDs CBR is the right approach for Nepal.

Rehabilitation Service for Deafblind People (DbP)

Sabitri, a young girl of eight years who lost speech, hearing and sight due to typhoid was the first Db to receive rehabilitation services. Sabitri was brought to NDA Kathmandu from a remote area of western part of Nepal for rehabilitation services. During 1970-1980 she learnt knitting and weaving and Palm reading to communicate with outside world. She was eager to go home but no one turned up to get her back to home. She spent whole life in NDA and a tragedy of sheltered institution or special schools.

CBR approach to DbP and to Multiply Disabled People (MDP)

CBR for DbP and MDP is a new start from late 1995 only. The writer was motivated by a British volunteer Ms. Susana Gibson who met a Db girl in a village of Kathmandu valley during her field visit in screening the street children. Due to strong request of Susana (as she was leaving Nepal) writer started home visit program during weekend and public holidays. The emerging trend in education shifting from segregated to integrated and to inclusiveness, has created a new height for CBR. A Joint Position Paper on CBR produced by International Labor Organization (ILO), United Nation Educational, Scientific, Cultural Organization (UNESCO) and World Health Organization (WHO) in 1994 has urged to promote a common approach to the development of CBR programs. The joint paper has emphasized the CBR approach especially for those with the least access include women with disabilities, people with severe and multiple disabilities, people with psychiatric condition, people living with HIV persons with disabilities who are poor and their families.

The Salamanca declaration on Inclusive Education for Special Needs Children and the Joint Position Paper on CBR by ILO, UNESCO and WHO were strong guide lines for writer to attempt mainstreaming DbP and MDP through CBR approach in Nepal. It helped writer to contact and coordinate with NGOs Social Workers and well-wishers to run CBR program confidently. Staff of NAWB, staff of teaching hospitals, Principal of Deaf and Blind Schools teachers and volunteers started to inform writer about DbP and MDP. Up to four children with Db writer with his friends from teaching hospitals (speech Pathologist and Physio-therapist) and from Ankur Vidyashram have managed home visit. The number of DbP and MDP referred to writers reached to 14 in numbers. It was difficult for writer and his friends to visit even during weekend. Ankur Vidyashram extended its support to writer to start as out-reach community program from 1995 to mid 1997. The increased number of DbP and MDP encouraged writer to establish a NGO. Ankur Foundation for Inclusive Education (AFINED) was established in June 1997 with likeminded professionals and social workers. It is a first institution to work in the field of DbP and MDP and other Special Needs Children in an inclusive way. The writer was aware of CBR concept. He practiced it for persons with Visual Impairment for 10 years period during his association with NAWB. The 10 years experience devolved confidence to begin CBR services for DbP and MDP in Nepal.

Prevalence of Disability

Due to in consistency in the projection of data that varies from 0.45 to 8.99% in Nepal, during the studies conducted by different agencies from 1971 to 2001. National Federation of Disabled Nepal follows WHO estimation of 10% as the population of PWDs. It comes around 2500000 in number when compared to present population of the country.

Prevalence of DbP and MDP

In Nepal Db is treated as multiply disabled. As per the situation analysis of disability conducted by National Planning Commissions and UNICEF Nepal in 2001, the prevalence rate of PMD is .51% (118,000 numbers). This number is large to be served for a least developed country like Nepal.

Challenges faced during the start of CBR to DbP/MDP

AFINED realized the gravity of situation at the beginning of home visit program, which was started with the objectives to intervene, aware about DbP and MDP children and to counsel the parents/ family members as a first step of CBR approach.

During home visits AFINED encountered with the following challenges;

1. Negative and non cooperative neighbors and community members (N)
2. Reluctant and unwelcoming parents and family members (R)
3. Frustration for not getting permission to contact the children.

These two elements N and R made many of our visits almost fruitless. The pathetic condition of children was the motivation factors to continue visit and revisit the homes in different communities in spite of non-cooperation due to following reasons;

1. Neighbors in the respective community were the first to discourage us to visit such families due to many reasons. Some of the main reasons found were; social taboos, jealousy, poverty and belongingness of children in disadvantaged group.

ii.Parents (specially mothers) were afraid of speaking for the children as they were coaxed by family members resulting beating from their husbands for having such children. Fathers too were humiliated in social gathering, which turned them stiff and non-communicating even with their closest neighbors.

iii.Parents started exclusion from participating in all social and cultural activities to avoid sarcastic remarks at them for having DbP/MDP children.

AFINED found out Conditions of DbP/MDP children were pathetic in many aspects such as;

1. They were kept inside in a dark corner so that outsiders cannot view.
2. Children were seen in living in most unhygienic and malnourished condition with poorly dressed.
3. Children were left unattended for hours as parents have to go out early morning to work in farms and other labor oriented jobs.
4. Most of the children found tied and kept in locked rooms to protect them from unwanted accidents. AFINED was unable to start immediate services without derailing the N and R.

We AFINED became more serious to begin the work even it received cold welcome by parents/neighbors. After a gap of some months it was decided to adopt a change in our strategy and approach to face the challenges. AFINED started talking about general issues concerning their day-to-day activities. (We introduced ourselves as university/school teachers/professionals from teaching hospitals and have come to visit disabled children to support them whatever we can if parents allow us to expose their children and neighbors from the community ready for interaction. This modified introduction helped us greatly. We did not refer AFINED as community people found it difficult in understanding the concept of inclusiveness. The changed approached has created a favorable environment as somebody have problems in education, some of them need services from teaching hospitals and so on. The areas of discussion were limited to;

1. The condition and activities of their livelihoods,
2. The extra burden they face due to DbP/MDP in family,
3. The negative attitudes of neighbors/community,
4. Problem in not finding family support,
5. No one to care such children except parents,
6. The heavy workload to solve their hand to mouth problem, and
7. Exclusion from social and cultural activities due to having children and youth with Db and MD.

Outcomes

Beginning of discussion based on above-mentioned issues relating to daily business in different groups separately created interest among the concerned parties. These meetings helped to ease the relation slowly. Many changes in the facial expression of parents were visible when the writer and friends informed them that, DbP and MDP could be rehabilitated with appropriate services and facilities similar to other disabled children.CBR approach provided opportunity for professionals and workers to home visit interact with parents/family members and neighbors to develop close relation and understanding. Citation of successful examples, interaction and demonstration of the right steps in handling DbP/MDP properly created sentimental attachment. Sentimental attachment developed mutual understanding and that lead to build up confidence among the parents. Supports of professional, teachers, technical experts and field staff in improving ADL among children energized parents to boost their morals. The frequent visit of outsiders provided due status to parents in families/communities. These activities have led to the promotion of inclusion of DbP/MDP within their families and communities. It has encouraged parents to join counseling classes and at many times with their children despite of negative remarks they often receive during traveling. It has facilitated mainstreaming mild and moderate children at near by schools leading to inclusive education and severe/profound to ADL training in centres as equal to other children.

Importance of Inclusion of DbP and MDP through CBR

In a country like Nepal where government has not prioritized the services for general PWDs and the present situation when DbP and MDP have not been defined in providing services by the government, CBR is a practical and multiprongyed tools to address the needs of these children and youths with rights based. AFINED has experienced that strong mutual understanding can be translated into sustainability. CBR creates, supportive home environment in families and empowerment to parents and positive awareness in communities in lobbying with the government. It provides easy access to needy Db and MD children, youths and adult for appropriate services at their doorsteps. Thus CBR opens the door towards inclusion and sustainable development if developed and designed with direct participation of parents/family members by supplying needed support (funds and materials with regular follow up).

Environment for Inclusion

An environment for inclusiveness has been developed in Nepal. Ministry of Education and Sports (MOES) has adopted inclusive education for PWDs MOES has changed the name of Special Education Section to Inclusive Education Section to show its commitment towards inclusive education. MOES has started piloting inclusive class in 60 schools in 22 of 75 districts. MOES has pressurized the special/residential schools by decreasing the grant for hostel expenses to encourage inclusiveness. Primary teachers are being trained for inclusive education. MWCSW has adopted CBR approach to rehabilitate PWDs in their communities. MWCSW has started allocating annual budget for local SHOs and CBR National Network to encourage CBR program as a means of rehabilitation for PWDs through out the country. These government initiatives have created an environment for inclusive community/society.

Process of Inclusion through CBR Approach

AFINED goes door-to-door, counsel the parents/family members, develop confidence among the parents that their children can be rehabilitated with proper care and specific training. Citation of successful examples of other PWDs inside and outside the country has increased motivation to take care of the children in a better way Field staff/teachers and professionals visit the homes as per the need. Orientation and demonstration on the development of functional abilities through ADL have changed (although slow in nature), the quality of lives of children. Parents observe the changes in children and that have created increased interest for their participation in meetings. Sharing of information during home visit has encouraged parents to bring children with them in resource classes in near by schools. Setting up of a training centre will be an added facilities for regular training for parents and children to promote inclusiveness. One cannot assume inclusiveness in totality at once. It should be a continuous process till goal is achieved. The full-fledged of inclusiveness has yet to achieve even for PWDs. Writer likes to emphasize on the changed attitudes of parents for agreeing to expose DbP and MDP to outsiders and to bring their children/youth out from their homes ignoring sarcasting remarks from communities at training centers or resource rooms is a positive sign of inclusion. Mothers have started their participation in meetings traveling for hours. Neighbors have expressed their support to professionals in carrying out activities in communities in improving the condition of respective children. These changes can be seen as crumbling down of social barriers and positive steps towards the process of inclusiveness.

Presently, 21 children are under CBR coverage and 4 of them are in regular schools.

Training of Teachers and Expansion Program

AFINED has been providing orientation and basic training to government special teachers working (for children with visual, hearing and intellectual impairment) in regular schools and volunteers of NGOs on DbP/MDP to promote inclusive education and expand CBR programs. Parents groups have been formed to increase their participation.

Signs of Achievements

The developed mutual understanding and partnership has smoothed the program with strong bond. Some of achievements can be observed as follows:

1. Parents and neighbors inform us about the new children and assist in home visits in their communities.
2. Sharing and progress reporting of their respective children have started during regular meeting.
3. Expansion of program in two districts (Lalitpur and Bhaktapur) was possible due to the cooperation of NGOs, parents and neighbors. AFINED, which began its service from Kathmandu with two Db children in 1995 reached out to 21 children including MDP in 2005.
4. Four DbP/MDP children are in Inclusive classes in their respective areas.
5. The increased self-confidence of parents has empowered them to take professionals, teachers and field staff as friends to share their difficulties and feelings.
6. The confidence and support of parents encouraged AFINED to extend their services to children living out side the valley. In that line AFINED is in touch with 25 government schools and a few local NGOs in 10 districts to create an environment for inclusive education in coordination with Inclusive Section of Department of Education. AFINED has planned to cover 30 more government schools of 10 districts to expand inclusive program.
7. AFINED has succeeded in forming associations and cooperation committee of parents. The Danis Parents Association of Db has assured to support the parents association.

Carrying out all these activities would not have been possible without the support of Hilton/Perkins Program of Perkins School for the Bind, USA since September 2001 and Ankur Vidyashram since1995. Support received from professional friends including Mrs. Indira Shrestha (Principal of Deaf School) volunteers and parents is appreciable. The constant guide from the renowned social worker Dr L N Prasad is inspiring us to go ahead.