Project Proposal. Disabled Support Program

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Project Proposal Disabled Support Program Rural Thirukalukundram Block South India Disabled Centre for rehabilitation and special education

Project Proposal Disabled Support Program Disabled Centre for rehabilitation and special education in Thirukalukundram Block, Kancheepuram District, Tamil Nadu, South India Jan 2008 Authors: Fabien Schiereck Earth Aid Holland Foundation T.Nishath Mikka Foundation Project Manager

Contents PROJECT PROPOSAL 2 DISABLED SUPPORT PROGRAM 2 CONTENTS 3 DISABLED SUPPORT PROJECT 4 The Current Situation for Disabled Children in Tamil Nadu 4 Medical/ Rehabilitation 4 Education 4 Employment 5 Kancheepuram District (project Area) 5 Medical/ Rehabilitation 5 Education 7 Employment 7 PROJECT PROPOSAL 8 Target group 8 Goal 8 Strategy 9 Outreach 9 Information and empowerment centre 9 Special Education Centre 9 Education 10 Satellite Centres (Branch centres) 10 Action Plan 11 Results 12

Disabled Support Project The Current Situation for Disabled Children in Tamil Nadu In rural India a child born with a disability is destined for a life of dependency. For the poor this burden can be extreme. Disabled children can be a social, financial, mental and physical burden to their families. Through lack of knowledge and skills of the family, the children do not get the appropriate help they need. The children do not go to school and hardly leave their homes. Therefore, they are not challenged and do not develop mentally or physically. Families will often favour a healthy child over a disabled child, when it comes to food and attention. Medical/ Rehabilitation Medical and rehabilitation treatment does not reach the disabled children in the poor villages. Due to the high level of illiteracy in villages, the families do not understand or know what benefits the government provides. In addition, villages are far from medical or rehabilitation centres, therefore transportation cost is another obstacle. Education The children who don t have to be carried, can sit up strait and behave in a group can go to a government school. In these schools they will have a place amongst 30-40 other children and if they cannot follow, there will be not much extra attention for them. The children will have a hard time finding friends to play with because they are not understood. Special education is rare but through a so called IED teacher, most schools get weekly support by a special teacher that visits schools that have enrolled disabled children.

Employment Very few opportunities exist in the work place for people with disabilities. With the growing population size and the lack of jobs, very few people with disabilities get paid employment. They are often confined in their homes and are dependant on their family for life. Disabled support and awareness in the Tamil Nadu government is in its infancy. Kancheepuram District (project Area) Kancheepuram has the eighth highest number of disabled residents out of Tamil Nadu's 29 districts. To date only three disabled resource centres have been established in Kancheepuram district for a population of 71,231 disabled people. (Government of Tamil Nadu Dept. of Economics and Statistics, 2001 census) Private clinics have set up schools and centers, but not all area s are covered and especially in the rural area s it s hard to reach the children due to transport problems. Medical/ Rehabilitation The government provides rehabilitation support for poor families, with the help of local healthcare workers from Non-Government Organizations (NGOs), specializing in different disciplines. In 2006 a scheme was finished in the district where healthcare worker s were employed by the government to find the disabled people and provide them with free care, free aids, and a possible scholarship. Community Based Rehabilitation (CBR) officers visited the villages to identify the disabled people. Based on the CBR s survey, the NGOs scheduled a registration day for a specific area. During the registration days, doctors assess and record the degree of disability in a National Identity Disabled Certificates (Pass Book) for each disabled person. In addition, the family income and caste are recorded in the Pass Book. The pass book entitles the disabled person to receive the government benefits and it must be renewed annually. Four NGO s in the district are working alongside of the scheme; they are not asking for government funds, but are approved by the government to work in rehabilitation and disabled support.

Currently, some NGOs have set up disabled centres to provide treatments such as physiotherapy, occupational therapy and speech therapy. A few disabled centres have provided additional vocational training. This is a positive step to addressing the immediate situation. More local and international NGO s are trying to connect provision with the ones who need it. Some NGO's in the district have started to help disabled children that do not get help from the government program. These children live far from the existing disable centres; therefore the NGOs are providing home-based care through their outreach programs. Transportation between the villages to the hospitals and rehabilitation centres, require time and resources from the NGO s. The NGOs, like Mikka Foundation, are still finding disabled people, who have not been registered or are still not receiving any rehabilitation. Apparently the NGO s are not able to cover the whole area of Kancheepuram. The centres are struggling to provide the care needed, with limited resources and limited skilled staff. They are mostly reaching the children that can afford to travel. In the government scheme there is nothing written about long term or follow-up treatment. Overall one can say that the children are not challenged to use their abilities or to develop them. The focus is mostly on physical needs and adjustment, which are not enough to give a child a chance in the wider society. It will also need education and skilltrainig. Parents of disabled children are often insecure about asking for help. The provided benefits are difficult to reach when you get sent away or don t get all the information from the doctors or social workers. Doctors don t give all the information because of several reasons: 1. They are afraid the parents will abandon their child 2. They don t have time to do the proper assessments or tests (for free) 3. They don t always have adequate knowledge about different disabilities Also, parents feel guilty about having a disabled child due to misbelieves and fear. Family and neighbours are likely to encourage that feeling of guilt and a lot of mothers are left alone with the care of their child. In India, it is almost impossible for a woman to be independent. When a husband leaves them, they will be depending on the help of their family and charity. Because of the feeling of guilt, it is not likely they will raise their voice to stand up for the rights of their child.

Education The educational policy states that if a child is "less than 50% disabled" they can attend regular classes. There are 25 government run special schools in Tamil Nadu catering for 1919 disabled children. (Government of Tamil Nadu Dept. of Economics and Statistics, Statistical Handbook 2004) In Kancheepuram district there is one special school catering to children with speech and hearing impairments. Within the government schools, some teachers have completed the course in special education and can provide inclusive care for the disabled children. The program is called Inclusive Education for the Disabled (IED). In the education system there is currently some provision for special needs children, who are enrolled in mainstream government schools. These provisions include scholarships, bus passes and special education from IED teachers. In reality, a lot of disabled people do not have the opportunity to get the appropriate education, due to poverty and illiteracy in their family. The free benefits do not reach the villages because children are not registered after birth and the families do not know they are entitled to government provisions. Also, children will be sent away from schools because the school cannot provide the care needed and parents don t know how to ask for special education or where else to go to. Children who do get enrolled in the normal schools are often neglected and are sitting in the back of the class without a possibility to learn at their own speed. Again, parents are not raising their voice to change this, because they risk being sent away. The IED program does not guarantee that the child will be able to learn at his own speed. Disabled children are not getting the additional attention they require due to the large class size. Parents fight to keep their failing children in the school so they are able to work, providing what income they can to support the family.

Project Proposal Based on the information above, we can conclude that many disabled children in the Kancheepuram district do not get the appropriate support. This project would like to contribute to the improvement of the current support. Mikka Foundation will work with other NGOs in the area, as well as provide additional support. The project will focus on promoting awareness of the existing benefits, offer support and influence the government policy. Mikka s outreach team will visit the villages in the district to assess the community services and villagers. They will identify the disabled children and determine what their initial needs are. Then the outreach team will decide what the best provision will be and who will provide those provisions. Based on the assessment of the current situation, we need to provide additional support. Mikka s vision is to build a Special Education Center. The center will include special education, rehabilitation and vocational training. A future residential facility will also be available. The Earth Aid Holland Foundation wants to be the catalyst in the process, so that eventually Mikka Foundation can take the responsibility with local staff. Target group The target group for the disabled support program will be children in the age of 0-15 with a mental and/or physical disability in Kancheepuram district, Tamil Nadu, South India, who live in poor needy families that cannot afford (medical) care for their children. Goal The overall goal of the Disabled Support Centre project is to improve the quality of life for disabled children in poor families in Kancheepuram district. Increased and more appropriate support for disabled children and their families Increased social interaction between families with disabled children in villages in the area. Integration of disabled children and young adults into the wider community. Education and Life skills development.

Strategy The best way to achieve the goals will be through education. Challenging the children to develop themselves and by giving them a chance to come out of their isolation and mean something for their environment. This is why we want to set up a centre for special education with multidiscipline support for mental and physical disabilities. Outreach Currently, the outreach team visits the families to educate them on their rights and benefits, as well as showing them how to receive the benefits. In the Mikka day-care centre in Thirukalukundram, we have started a successful workshop program for parents and caretakers. Through this we have taken away the feeling of guilt and empowered the attending parents to stick up for their child and find ways to create a better future. The parents with enthusiasm have invited topics like causes of disabilities, children s rights and how to share worries. Information and empowerment centre In the first phase of the project we will set up a centre where parents can come for support and education about government benefits and available provisions in the district. We will educate the parents that come individually and in groups. We will continue the workshops to give knowledge about the disabilities, possible treatment, provided facilities and benefits. This centre will also help to make individual future plans for the children. We will help the parents make decisions about care for their child. Also this will include making a financial plan to secure future treatment and other plans. If needed, we can provide financial support in a way that the parents will be responsible through micro credits or sponsoring. A plan we need to work out is to increase the income level of the parents through small businesses that can be set in or close by the centre. Special Education Centre In order to have an effective program, Mikka Foundation would like to bring different disciplines under one roof. The primary focus will be on special education with additional support, such as physiotherapy and vocational training. All the disciplines will be working together for the same goal. Each child will have a specific treatment plan with individual goals that the whole team will work towards.

The Special Education Centre will comprise of 2 therapy rooms, a day-care centre, classrooms for education and training, an office and a staff room. There will be showers, toilets and a place to wash clothes. If funding permits, there will be a therapy pool. In the future, Mikka Foundation would like to accommodate children who can not live at home or who do not have a home. Although Mikka Foundation would like the children to live with their families as long as possible, it may be more beneficial in some cases for the child to live at the centre. A residential home will be added as part of the centre during Phase VI of the program. The Special Education Centre will be built in a location close to a government school for the children to attend. It will be close to major bus routes so that the centre is easily accessible. Special, individually tailored education will be provided at the centres for those children who are unable to attend the mainstream schools. Education The centres will provide education appropriate to the needs of the individual children. The 0-5 year old children will benefit from day-care with basic skills training such as walking, talking and small, manageable domestic tasks. Those from 6-13 will receive formal education, either in a local government school or, alternatively, in the centre itself. A program of skills training will be available for children over 14. A long-term goal of the program is to be able to influence policy at governmental level. Through this, special needs education will be given a higher priority and changes implemented at State level enabling all children with disabilities to access appropriate support and education in their area. Satellite Centres (Branch centres) The Special Education Centre will support locally based satellite centres that are implemented through the Disabled Support Program, developed and managed by locally trained coordinators. These will provide similar services to the Special Education Centre and will be able to reach those families who are unable to regularly access the Special Education Centre due to distance or level of disability.

Action Plan 1. In depth assessment of the area to include numbers and needs of children with disabilities and the provision available for them (with knowledge of other NGO s) in affiliation with the rehabilitation centre of Kancheepuram district 2. Make contact and links with other providers in the area, such as schools, clinics and homes (government and private). 3. Set up an empowerment centre for the empowerment of disabled children and their parents. 4. Find locations for satellite centres and recruit staff. 5. Equip the families of disabled children with the knowledge and skills to provide targeted care for children and provide means by which the children can develop a level of independence relevant to their needs. 6. Equip the families of disabled children with the knowledge and skills to provide targeted care for children and provide means by which the children can develop a level of independence relevant to their needs. 7. Train staff in order to help them understand how they can take care of the children and challenge them to develop. 8. Provide workshops in the villages through outreach and the satellite centres. 9. Improve the accessibility of the provisions. 10. Educate about the benefits and how to get them. 11. Arrange transportation to provisions (hospitals, clinics and the Special Education Centre). 12. Satellites will provide local support, such as outreach, education and care to those villages that are too far from the primary Special Education Centre. 13. Build a Special Education Centre with a provision as complete as possible for disabled children and their care-takers and recruit staff for the centre. 14. Sustain and expand the centre by assessing needs and program effectiveness, by provision of Mikka Foundation coordinators to monitor and support the centre's activities and by identifying potential community members to continue with and develop appropriate programs. 15. Find financial support from the local government and local/international sponsors.

Results 1. A complete assessment of all organizations that provide disabled care in the area and whether the families can reach them. 2. Effective coverage of provision in the area. 3. An empowerment centre for education of parents and mediation between provisions. 4. A Special Education Centre will exist with the following provisions: Medical Care, Physiotherapy and mental support. Day-care and rehabilitation for the children ages 0-5. Early intervention centre. Vocational training for children. Resource centre for school going children, separate from the day-care. A resident for children who have nowhere else to go. Utilization of disability aids, such as crutches, braces and wheel chairs. 5. A sufficient amount of satellites with the following provisions: Day-Care for children who live too far away from the primary centre or who do not need specialized treatment. Education to families about specific disabilities and how to deal with them. Personalized support for the families with disabled children. 6. Families with disabled children are financially and mentally supported to take care of their child at home. 7. Children develop and are challenged to do so by their environment. 8. All disabled children in Thirupporur, Tirukalukundram and Cheyur blocks have access to the provisions needed. 9. The local staffs that understands and maintains the goals guarantees sustainability. 10. Financial support for long term is guaranteed for at least 5 years.