District Disability Strategy Plan (DDSP) Puttalam District
“A collaborative effort of the District Secretariat, Puttalam and Child Vision Sri Lanka (Puttalam)”
ABOUT CHILD VISION
WHY THIS REPORT
DISTRICT DISABILITY STRATEGY PLAN (DDSP)
05 - 09
SITUATIONAL ANALYSIS AND EMERGING CHALLENGES
10 - 16
THE FIVE YEAR PERSPECTIVE
17 - 20
THE MEMORANDUM OF UNDERSTANDING (MOU)
This report has been a joint effort of the District Secretariat, Puttalam and Child Vision Sri Lanka (Puttalam). Valuable information has been provided by: The Planning Director-District Secretariat Puttalam, the District Engineer and the Small Enterprises Development Division- District Secretariat Puttalam. Dr. R.M.S. Ratnayake, Regional Director of Health Services Puttalam District and his team of Madampe. The Director of The Department of Social Services (North Western Province) and her team in Kurunegala. All the 16 Divisional Secretariats-the Divisional Secretaries and the Social Services Officers The Directors, Special Education-Chilaw and Puttalam zones Zahira Junior College, Madurankuliya PreSchool for Disabled Children, the Karuwalagaswewa Vocational Training Center for Disabled Persons and the YM enterprises, which employs disabled people. Puttalam based I/NGOs: CHA, RDF, HBF, ISRC, CTF, FORUT, UNHCR and WORLD VISION. Siviraja Deaf, Dumb and Blind Children’s Home, Puttalam District Chamber of Commerce (Chilaw). Colombo based I/NGOs have helped in giving a larger perspective to the issue and have provided some crucial inputs into the process. Amongst them were: LCI, Action Aid International, DOJF, CBM, Motivation-UK, EFC, SCF and PASS Consultancy. Mr. M.A.M. Alam, Director, National Secretariat for Persons With Disabilities (Ministry of Social Services and Social Welfare) has not only contributed with his information, but also enlightened our stakeholders with some useful information Dr. Padmini Mendis has given us her very sound ideas on future strategies, which we really value. We specially appreciate the Palmyrah Development Board-Kalpitiya, WODEPT and ANNOOR Radio who have already taken initiatives to make disability a community agenda The Print Media: THINAKURAL, THINAKARAN, SUDAR OLI, VEERAKESARI, NAVAMANI, INTERNEWS and DAILY NEWS. The Electronic Media: SLBC, SURIYAN FM, SHAKTHI FM, VASANTHAM FM, INTERNEWS and ITN. Both the media participated in the stakeholders meeting and have promised their support in the future of this process. The Association of Parents of Disabled Children (APDC) has been with us throughout and are an important part of this process – we look forward to them being the future leaders of this movement. Natasha Lewer has done a brilliant job of editing the report – many thanks for making this readable. Finally, VSO UK has been an important guide, a sounding board and a source of encouragement throughout this. VSO UK also provided the funding for this which made it all possible. And World Vision Lanka (Wanathawilluwa, Karuwalagaswawa ADP) also partly supported for the printing of DDSP. Accept our deep appreciation and our sincere thanks. The District Secretariat and Child Vision Sri Lanka is extremely grateful to you all for your support. We take this opportunity to mention that this is only the beginning of a future and not the end of a mere ‘report’. The District Disability Strategy Plan (DDSP) will soon be implemented - we are sure we can count on your support in this. M. Kingsly Fernando District Secretary/GA District Secretariat, Puttalam. A.C.M. Rumaiz Chief Executive Officer Child Vision Sri Lanka, Puttalam.
ABOUT CHILD VISION
Our Mission: to strive for increased respect for and realisation of child rights in
Sri Lanka for children's survival, development, protection and participation, for the purpose of improved recognition of children's rights as citizens with regard to more equitable access to quality education services and greater protection from violence and abuse.
Child Vision was established in Puttalam in 1996 as a response to the many challenges that were being experienced by the Internally Displaced Peoples (IDPs) who were directly affected by the war in the North and the East provinces of the country. The organisation decided to focus on the children who were at risk of abuse and neglect due to their displacement. Child Vision became the first organisation in Puttalam to conduct awareness-raising of Child Rights. Today, we base all of our activities on the rights of children. Child Vision is a secular, non-profit, non-political organisation working in two specific programme areas: child protection and disability management. The organisation has developed many supportive partnerships including local government, local and international NGOs and members of the community. Child Vision’s head office is based in Puttalam Town. We have expanded our activities in Anuradhapura, and Trincomalee districts. Child Vision is a registered National NGO under the Ministry of Social Services and Social Welfare, Colombo. Registration ID L.33904. We are also a member of GONGO (Government & Non-Government Organisation), the Puttalam District Child Development Committee (DCDC), the National and District Psychosocial Forum (NPSF and DPSF) and the CHA-CPN (Consortium of Humanitarian Agencies Community Protection Network).
WHY THIS REPORT
For 7 years now, Child Vision Sri Lanka had been working in the field of disability. There has been a lot of focus on individual disabled people from a ‘rehabilitation’ point of view. This means that a large number of disabled people have benefitted from physical and speech therapy, from referral for surgeries and for assistive devices. While this has had an impact in their functional levels, we realized that a lot remains to be done in order to improve their quality of life as human beings. The ordinary things that non-disabled people take so much for granted – like going to school, watching a movie or attending a wedding still remained a distant dream for them. Society’s acceptance of disabled people and the government’s priority of providing equitable access to them still remained low. Addressing this issue became important for us. Many discussions with the government ensued and we became partners in taking up this issue. As a starting point, we thought it fit to study existing opportunities for disabled people, the impact it had on their lives and explore future strategies to improve the situation. In short, this is what this report is all about. The report has opened avenues to implement a social model of disability at the district level. We have worked at practical and on-the-ground solutions that will be jointly implemented by the District Secretariat and Child Vision Sri Lanka. We do hope this will create a disability movement that will change the image of disability in society and that will also be a model for other districts in the Island. The District Disability Strategy Plan (DDSP), as we have named it, is the first step towards this movement.
Vidhya Kalyani Capacity Builder (Disability) Child Vision Sri Lanka, Puttalam.
DISTRICT DISABILITY STRATEGY PLAN - (DDSP) PUTTALAM DISTRICT
EXECUTIVE SUMMARY: Puttalam- the region Puttalam district lies in the north western province of Sri Lanka. The district has 16 divisional secretariat divisions and a population of 709,677. It is approximately 3 hours (140 km) north of Colombo. The town itself is shielded from the sea by a narrow strip of land, which forms the Puttalam lagoon. Puttalam is in the dry zone and is an agricultural district – the majority of its inhabitants are poor dry-zone cultivators and/or agro-related labourers working in prawn farms and at the salt works. Coconut farming is another source of livelihood here, most of the produce being either exported or else sold to the government or private companies. The cement works is also a big employer in the town area. Puttalam district has a mixture of all Sri Lanka’s major ethnic and religious groups. The majority of its population is Sinhalese by ethnicity and Buddhist by faith. There are also large Muslim and Tamil populations in the district. Puttalam town, however, is predominantly Muslim - its population is approximately 70% Muslim, 20% Tamil and 10% Sinhalese. Muslim, Hindu, Buddhist and Christian places of worship can be found in the district. Even though Puttalam is not in the war zone, a large number of people here have been affected by the war, particularly since 1990. About 63,145 families have been displaced from the north and the east and are now settled here, in welfare centres and temporary model villages. Despite being here for over 17 years, there are tensions between these Internally Displaced People (IDPs) and the original inhabitants over sharing the limited resources and opportunities of the district. Lack of employment, child labour, child trafficking, poor participation of women in community development, marginalisation of disabled people and a limited awareness of environmental and conservation issues are some of the serious social issues facing the community here. While NGOs and the government are working hard to mitigate some of these problems, there is still a long way to go. 5
The disability scenario: According to the 2001 census report, the total population of Puttalam district 709,677 (Male:352455, Female:357222). Out of 274,711 People with Disabilities (PWDs) in Sri Lanka, 11,558 are in the district of Puttalam.
Disabled persons by sex and district District Total Disability in seeing Disability in hearing/ Speaking Disability in hands Disability in legs Other physical disability Mental disability
Puttalam Both sexes Male Female
11558 6653 4905
2964 1522 1442
3231 1722 1509
2121 1374 747
3824 2352 1472
688 367 321
2517 1398 1119
A national policy for disabled persons has been formulated, which outlines measures that ‘promote and protect the rights of People who have Disability in the spirit of social justice.’ The policy goes so far as to suggest some proactive strategies. Yet, almost five years after it was approved, there are few signs of a rights-based approach. Schooling, employment and social participation are still out of reach for large numbers of disabled people. It appears that public awareness of the national policy is very low, and therefore, people with disabilities and their families – for whom it is intended – know very little about it. On the other hand, schemes like the Community Based Rehabilitation (CBR) programme, which are extremely charitable at ground level, continue to promote a welfare-orientated notion of disability. In Puttalam district, the CBR programme receives Rs 500,000 each year, which goes towards the distribution of aids and assistive devices, housing grants, self-employment grants and the like. However, the programme does little to promote disabled people’s independence or inclusion in society as a whole. Provisions for school education do exist. There are a number of special units which help prepare children for entering mainstream education. There are also traditional, institutionbased services, mostly catering to specific disabilities. Finally, there is the regular classroom, which is accessed by a marginal number of disabled children. However, despite these provisions, about 31% of disabled children in Sri Lanka have never been to school. The special units, which were originally conceived as a pre-inclusion training ground, have mostly become an end in themselves. Often, children stay there until they are 18, only moving on to make space for other children. This is because regular schools completely lack the capacity to address the educational needs of disabled children. For example, in the Puttalam region, which has a total of 183 schools, the only annual training provided is a one-day programme attended by one teacher from each of only 40 of those schools.
Source : census of population and housing, 2001, Sri Lanka
Teachers feel inadequate in dealing with disabilities such as hearing impairment, which require alternative methods of teaching within the classroom. For children with severe and multiple disabilities, physical accessibility to and in schools adds another barrier. So far, there are no NGOs in the district promoting inclusive education actively, although ‘casual integration’ is encouraged. Providing continuous support, training and facilitation to promote good inclusive practices in schools is a major need. As far as rehabilitation services are concerned, the situation is even less encouraging. Provisions for medical interventions or prevention and treatment in the hospitals are extremely scarce, and there is a scramble for the few services available. For example, in the whole of the Puttalam district, there are only two physiotherapists and not a single speech therapist. While the health system reaches out to every village household through community midwives, disabled people hardly benefit from these services. Furthermore, the 53 health centers in the district are not equipped to provide any care for disabled people. People are obliged to travel to Colombo for any form of service, or else to try to access Child Vision’s monthly clinics. While there has been an increase in the referrals to Child Vision - especially referrals of infants – this is far from sustainable, nor is it possible to reach out to the numbers that really need them. The challenge is to build capacities within the existing health system so as to increase disabled people’s access to basic facilities. Employment of people with disabilities remains low-priority. There have been efforts by the Employers’ Federation of Ceylon (EFC) and the National Employment Sourcing and Delivery System (ESDS) to promote the employment of disabled people, but the unemployment rate is still a staggering 84%. According to national employment trends, this figure will be even higher in rural areas. Many factors contribute to this: a lack of jobs in general; the often low level of education and skills possessed by disabled people; and a lack of awareness of disabled people’s abilities and potential. In addition, the four vocational training centers for disabled people in the district, run by the Social Services Department (SSD), offer stereotypical skill training that has little or no market value. Some centers in the district do not distinguish between training for livelihood and leisure-time skill training. Sporadic interventions by NGOs in terms of loans for self-employment are by far the most that happen as regards employment of disabled people in the district. The need is for a facilitation center that will act as a referral and training ground for unemployed disabled people in the district. An overall focus on inclusion is almost entirely absent from the district. The government’s development programmes do not actively include disability within their various components. For example, the District Child Development Committee (DCDC) addresses issues of child development within the district, but has not addressed the needs of disabled children. Similarly, the Small Enterprises Development Division (SEDD) provides training and support for individual entrepreneurs, but there is no policy of including disabled people in this. The case with NGOs is not very different. While a lot of development activities are carried out by them some even with a rights-based approach – few consciously include disabled people and any inclusion is therefore incidental. Most governmental and non-governmental organizations limit themselves to referrals for specialized rehabilitation services, like the provision of assistive devices or physiotherapy. Including the disability agenda into every activity, and at a policy level in all development activities, is a challenge that needs to be addressed.
One of the biggest issues faced by disabled people today is the lack of physical access to public amenities. In Puttalam, there is not a single public building, cinema hall, park or shopping complex that disabled people can access easily. Lifts, ramps, sound systems and signage in all public places and transport need to be taken up on a massive scale if disabled people are to become an active part of society. The recent government gazette on accessible built environments is a positive step in this direction. However, awareness among engineers, architects and builders needs to be massively increased to make this a reality. Given that there is such a long way to go on such fundamental issues as education, health and employment, it is perhaps not surprising that issues like socio-political participation lag far behind where disabled people are concerned. The phrase abaditha lamaiya (disabled child) is commonly used to address disabled people of any age, reflecting an attitude that disabled people never grow up. There are few instances of awareness campaigns on disability, mobilisation of disabled people and advocacy for disability rights in the district. The Association of the Parents of Disabled Children (APDC) – initiated by Child Vision – and the Suwa Shakthi Organisation for Persons with Disabilities in Navagathegama – initiated by the divisional secretariat – are the initial signs of people mobilising themselves. As yet, both these groups are focused on the medical aspects of disability, rather than on the social inclusion aspects. There needs to be a consistent focus on developing the potential of disabled people and their families as advocates of their own rights.
The next five years:
Given all these factors, the situation of disabled people in the district of Puttalam is very poor. However, there is huge potential for change. With determined and path-breaking initiatives by stakeholders, the next five years could see disabled people becoming included and equal members of society. Child Vision (CV), which has been working in the field of disability for the last seven years, has been addressing the medical aspects of rehabilitation, focusing on the individual. About 3,500 disabled people have benefited over this period from CV’s services in the Puttalam district, including physiotherapy, occupational therapy, speech therapy and referrals for aids and appliances. CV is now at an important juncture where it is studying the needs of disabled people from a social point of view, as well as the opportunities available in the district, so as to promote their equal participation in society. In this context, CV’s role will be that of a facilitator, working with disabled people and their families, the government, NGOs and other community organizations. After a thorough analysis of the situation, the three-pronged collaborative strategy of CV and the government for the next five years is as follows: 1. To develop prototypes that will serve as visible models and which will also be replicable throughout the district. CV proposes to: a) develop an inclusive education model programme that will demonstrate best practices in two schools in the district, while also preparing ground by training other teachers across the district; b) train a team of health workers who will be able to identify, refer and do basic management of disabilities at the community level; and c) create an accessible built environment within 1 km of the district secretariat that will serve as a visual model on accessibility. 8
2. To promote the livelihoods of disabled people, CV will: a) establish a livelihoods resource center, that will assess, train and place disabled people in suitable jobs; and b) develop business enterprises for disabled people. 3. To mobilise and create awareness. Realising that people’s participation and ownership is crucial for development, CV will: a) build the capacities of the APDC, which, as an independent body, will advocate disability issues in the entire district; b) conduct awareness campaigns in the communities, using media – both traditional and modern - to project positive images of disability and raise issues regarding the rights of disabled people; and c) include disability in the agenda of other existing development programmes in the district, of both governmental and non-governmental organisations.
To do the above, the following strategic objectives have been formulated: • • • • • • • to protect the rights of disabled people by promoting self advocacy amongst disabled people and their families to promote disability as an integral part of the development agenda in the district to ensure disabled children gain from formal education along with their peers in the community to ensure disabled people have access to basic health and nutrition programmes within their own communities to promote physical accessibility for disabled people in public built spaces in the district to promote gainful livelihoods for maximum number of disabled people in the district
Child Vision will systematically document its experiences and review its own functioning to ensure that it is on track to meet its objectives. It will involve the participation of stakeholders in this process of reflection. The capacity building of staff to develop critical thinking will be crucial in this process. The DDSP programme strategy for 2009–2013 works towards ensuring that disabled people have as equal a place in society as their non-disabled counterparts.
SITUATIONAL ANALYSIS & EMERGING CHALLENGES
Disability and Inclusion: Throughout the world, the most common approach to disability emphasises rehabilitation institutional and, more recently, community-based. Fundamental to the medical model, rehabilitation addresses only a limited number of the needs of disabled people – usually mobility aids, communication skills and skills for daily living. While these aids and skills vitally contribute to the quality of life and independence of disabled people, they should not be seen as an end in themselves: they are rather the first essential step towards enabling disabled people to gain access to other services. Traditional rehabilitation often fails to address the full range of disabled people’s needs and rights, which are far more diverse than these most basic needs. For example, consider the visibility of disabled people: how many disabled people have access to education, exercise their right to vote, or are even able to cross the road with ease? Years of emphasis on attaining higher levels of physical independence, without the accompanying interventions for inclusion, have failed to help disabled people become a part of mainstream society. The government of Sri Lanka has signed the Convention on the Rights of the Child (1991); it has a National Policy on Disability (2003), and in 1996 it passed the Disability Act. All of these guarantee a dignified life for people with disabilities. They ensure, amongst other things, equity, inclusion and empowerment in decision- making. In reality, however, large numbers of disabled people are still treated as objects of pity and charity. Not only are disabled people excluded from mainstream education, access to health facilities and employment, but there is also little sign of disabled people participating in decision-making, either at a personal or at a socio-political level. In Puttalam district, this marginalisation is further compounded by poverty and lack of employment. Families lack the resources needed to take care of a disabled person or to access proper treatment. Often a member of the family (usually the parent) is forced to give up work in order to look after their disabled relative. Take the case of Asma (not her real name), who lives in a one-room house in an IDP camp. Her father works in a bakery. Her mother is unable to work because the majority of her time is spent caring for her disabled daughter. Most of the father’s income goes on paying a trishaw driver to take his daughter to and from the special school she attends. With the influx of more than 60,000 IDP families sharing resources with the original (host) community, the economic conditions are poor. The fact that services are not available within local communities exacerbates the situation, with the added costs of having to pay for transport. The lack of accessible public transport means that disabled people are forced to travel by trishaw or other private vehicle, which is expensive. The situation is worse for daily wage earners who often find themselves obliged to give up a day’s work in order to provide care for a disabled family member. In this context, there is an urgent need for facilities - education, healthcare and recreation - to be made available for disabled people within their own communities. Schools are not yet equipped to admit disabled children, even though education is seen to be a fundamental right of every child in the country. Although the government has set up ‘special units’ to prepare disabled children to enter mainstream education, it has neglected to prepare mainstream schools to receive them. As a consequence, these children remain in the special units, frequently until they reach adolescence, when they are moved out to make space for younger children. In the Zaira Junior College (Puttalam), for example, only four children have moved into the mainstream and only 13 have left the centre since it was started 11 years ago. In effect, this system promotes isolation and further marginalisation of disabled people. In Puttalam district, there are 22 such centres in both the zones, catering to about 400 children. The Social Services Department (SSD), in a separate attempt to promote educational opportunities for disabled children, is doing something similar by running pre-schools for disabled children. There are two such centres in the district – one at Madurankuliya and the other at Chilaw. 10
The Madurankuliya ‘montessory’, as it is popularly called, has 12 disabled children who come from different parts of Puttalam district. Children enrolled here start coming to the centre from only two years of age and stay on till they ‘attain a vocational skill’. There is also a range of disabilities and functional levels. The referrals come from the health department’s midwives or through the Social Services Officer (SSO).
The day starts with group activities, in which all the children participate, irrespective of age and functional level. One hour of the day is kept aside for providing individual academic input for specific children. These children attain some level of functional literacy and numeracy as a result of these sessions. The two teachers here have been through a one-year training programme in working with disabled children. They are very involved in the progress of the children and conduct the sessions with great enthusiasm. They encourage and involve the participation of every child in the school in all the group activities and bring about joy in the sessions.
The issues that need to be addressed here are:
The nomenclature - by calling this a pre-school and yet retaining children until adolescence, the myth that disabled people are less capable than their non-disabled peers is being reinforced. Academic focus – by not having a clear academic focus, the fullest academic potential of the children is not being achieved. For example, children with hearing impairments will leave the centre with some basic functional literacy and numeracy skills, despite having the potential to achieve at far higher levels. Preparation for the future – while the centre does focus on the children‘s social and daily living skills, there is little focus on preparing them for their future. Therefore, they continue to remain a ‘burden’ on their family members after they leave the centre. Inclusion - these centres continue to promote the segregation of disabled people, even though there exists a policy for inclusion. Given this, it appears that these centres – both the special units and the pre-schools - function as relief–providing centres for the families for the time that the children remain there. The challenge here is to ensure the inclusion of disabled children into the mainstream right from the beginning, and to remove the myth that they require a special service. The challenge is also for the community - parents, teachers, the school system and the community at large – to raise their level of expectation vis-à-vis disabled children. Ultimately this will help to achieve quality education.
As far as disability management services are concerned, there are two crucial issues:
the prevention and management of disabilities at a basic level; and the provision of higher-level medical interventions that will bring about a change in the nature of the condition itself. Today these are scarcely available in the district. There is a huge need to address the issues of the large numbers of disabled people in the district who could benefit from often quite minor forms of intervention, for example the leveling of a road to make it easier for a wheelchair user to attend school or go to the playground. Linked closely to this are the services provided under the CBR programme. Amongst all the provisions for people with disabilities, the CBR programme is perhaps the most well known amongst disabled people and their family members, as well as amongst government staff. The main aspect of this programme is to provide assistive devices and grants under various schemes for the welfare of disabled people. The Social Services Officer (SSO), who has undergone a 14-day training course, supervises a team of volunteers. Together they conduct a needs assessment, after which assistive devices are provided. A list is also compiled for referrals to the various grants provided by the government, eg housing grants, the public assistance grant etc. Thereafter, follow-up visits are carried out to ensure that the appliances are being utilised and that they are not sold off or discarded.
Typically, there are many issues that challenge the effectiveness of the CBR programme: a lack of funds; the high drop-out rate of volunteers; and a lack of proper assessments. The ‘needs assessments’ do not assess the real needs of disabled people in terms of their quality of life, nor is there any training given in the use of the assistive devices. The entire programme focuses on giving-out measures, rather than on independence and inclusion, thereby projecting an image of disabled people as objects of charity and recipients of benefits for their welfare. The programme’s inability to project disability in the larger context of development is perhaps one of its biggest failings. The challenge here is to develop a team of basic-level community health workers who can be trained to manage disabilities in a holistic manner which promotes disabled people’s inclusion in society. Moving away from a medical model of rehabilitation to a more holistic one is an issue that needs to be addressed. Livelihoods is an area that is still much neglected. The 84% unemployment rate amongst disabled people is hardly surprising if we consider the following factors: there is a massive lack of awareness regarding the employability of disabled people; many employers fear low productivity because of disabled employees; in general the skill base of disabled people is low; and there is a huge dearth of jobs. The district has no database of disabled job-seekers, no center to equip them with skills for the job market, and no community awareness programmes on the employability of disabled people. NGOs, through their self-help groups, provide loans and some training for selfemployment, though they are few and far between. Initiatives like that of YM Enterprises, which has successfully employed a number of disabled people, need to be promoted more. YM Enterprises is a small business that packages savory items and soaps. With the aim of helping disabled people, the proprietor initially employed one disabled person in his unit. This having proved successful, he then took on two more. According to their co-workers, the disabled employees initially took longer to get fully trained, but were soon working as ably as the other workers. However, unless there is a huge, conscious effort to bring disabled people into the mainstream job market, these will always remain rare examples. Vocational Training Centres (VTC) are supposed to equip people with useful skills for the promotion of livelihood opportunities. However, these centres have done little to move away from the stereotypical version of vocational training. Sewing is by far the most popular activity taught in these centres.
The Vocational Training Centre (VTC) for disabled people in Palugasgama has been running for the last five years.
The ten women, who attend the centre once a week, are being taught sewing, and occasionally some basic cooking skills. They bring their own raw materials and take home the things that they make. There is no time-limit to the number of years they attend this center. The trainer, who is attached to the Rural Development department, is deputed to do this once a week in addition to her other responsibilities. There are not sufficient funds for the centre to start any new initiatives or take in more trainees.
The immediate concern that comes to mind is that if there is no attempt to market either the products or the skills of the trainees here, how exactly does the training benefit them? If the centre is to be seen as a place to develop leisure-time skills, then a lot more needs to be done to make it an attractive centre for people to attend, while also making it more inclusive and community-based. Training disabled people for the market is one of the biggest challenges; disabled people, their families and NGOs all need to adopt a business-minded approach. A systematic approach to addressing the issue of livelihoods - through aptitude assessment, skill training, work placement and further on-the-job training - is vital if disabled people are to be seen as an active work force. Inclusion of disability in all development issues is another area that has limited focus. Though the government has its specific programmes for disabled people, there is little attempt to ensure that disability is a part of every existing development agenda, and there are no policies regarding this. NGOs frequently view disability as an issue to be referred to the ‘specialists’, while actually it need not be so. A number of NGOs work with community-based groups and on rights-based issues. Including disability in their agenda would not only help to reach out to large numbers of people, but would also be cost-effective in the long run. It could also promote disabled people as participants in the community development process – something that would have the potential to change their status in society in the long run. Initial signs of these processes can be seen in the work of some NGOs. WODEPT, in particular, has made a conscious effort in this direction by organizing discussions between Child Vision and their Community Based Organisations (CBOs) children’s groups, women’s groups, youth groups and pre-school teachers. There are about 600 registered NGOs and CBOs in Puttalam district. If all of these took up disability in their agenda, then inclusion could become a reality. If disabled people are to be a part of mainstream society, then it is important that there is a disability inclusion policy in every development agenda – both of the government and NGOs.
It is important to remember that taking part in social and political events which most nondisabled people take for granted – attending festivals, going to the cinema, or casting a vote – can be out of the reach of many disabled people. Apart from the fact that attitudinal changes need to be brought about, there is a huge issue around physical access in built environments and on public transport. No park, cinema, library or office in the district provides access for the disabled. Access, it should be stressed, should be seen in a wider context than just the construction of ramps. Built environments need to be made accessible to all types of disabled people. Visually impaired people, for example, need to be able to ‘hear’ the traffic signal so as to cross busy roads. It is hoped that the recent government gazette on accessibility will bring improvements to the present situation. It is heartening to note that the tenders for the construction of the new District Secretariat in Puttalam include access for disabled people. CV is also advocating that the new bus stand complex be made accessible. However, the concept of accessibility needs to be better understood by engineers,, architects and entrepreneurs, as well as government institutions.
A rights-based approach - whose responsibility is it?
If inclusion and social responsibility are one side of a coin, then human rights and the law are the other side. A rights-based approach to disability means looking at people with disabilities as being protected by law. The aim of this is to ensure their empowerment and active participation in all walks of life. The purpose of the UN Convention for Persons with Disabilities is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. The Disability Act was passed by the Parliament in 1996. But 12 years on, most disabled people are not even aware of the provisions of the act, and access to it is limited. The Human Rights Commission does not have an office in Puttalam able to take up issues concerning disabled people. There is also a need to understand human rights violations in a larger context. As much as sexual violence or physical abuse are serious violations of human rights, so too is the denial of access to education, employment and healthcare. In this context, disabled people face a serious violation of their rights - something that needs the urgent attention of human rights groups and development workers. Whilst there is no doubt that the government and NGOs have a crucial role to play in ensuring inclusion, the importance of people’s participation in the development process is indisputable. It is now established development wisdom that community pressure effectively brings about change. Across the island, various groups are mobilising disabled people to promote them as self-advocates for their cause. The efforts of the Disability Organisations’ Joint Front (DOJF) and the Leonard Cheshire International (LCI) are encouraging. In Puttalam district there have been no such initiatives, barring the one at Navagattagama. The Association of Parents of Disabled Children (APDC) is attempting to take up disability issues in the district. At present they meet once a month and have recently started a radio awareness programme with the support of CV. The organisation, however, needs consistent support in order to be able to address rights issues of disabled people. In addition, it needs to promote the participation and self–advocacy of disabled people themselves. Organised community mobilisation, rigorous capacity building and leadership development are crucial to ensure overall development. These inputs are required until a culture of reform develops. 16
THE FIVE-YEAR PERSPECTIVE
Upholding the UN convention on disability, which Sri Lanka has signed, CV aims to work on a rights-based approach to viewing disability. This means that CV will now promote disabled people as having the same rights as other citizens, even though their entitlements may have been denied to them. To work towards this, the participation of the entire community is crucial, from the villager to the highest official in the district. Disabled people and their families, community leaders, government departments, NGOs and business people will all need to take a share of the responsibility to ensure equal opportunities. To this end, CV will play a facilitating role with all the stakeholders, while also taking on the responsibility of initiating the necessary programmes. The following three-pronged, five-year strategy, to be implemented in collaboration with stakeholders, is suggested: 1. Developing prototypes in the district: A huge barrier in attitudinal change is the lack of visible models that can convince society of the possibility of inclusion. Disability is still viewed as a mystical and abstract problem that can be solved only by ‘experts’. These models will demonstrate that solutions to inclusion not only lie in the hands of the people, but also that it is the responsibility of the service providers to ensure the same. a) Inclusive education programme: This starts with the premise that all children with disabilities should have the same opportunity to attend school as their non–disabled peers. To achieve this, there needs be a shift in perspective – from viewing the child as having a problem, to seeing the system as being responsible for addressing the needs of every child. Therefore, inclusion needs to address the entire system – the classroom, the teaching practices, the curriculum, extracurricular activities and the entire school community. Two schools will be involved in this demonstration programme, which will focus on the entire school community. At the same time, primary school teachers across the district will be trained in inclusive practices. This demonstration project will be run for a period of two years by CV, after which the government and the community will take over, so that sustainability is ensured. The direct beneficiaries in these two years – that is, disabled children - will number about 30, but the indirect beneficiaries will be an entire community of teachers (in the district), peers in the two schools involved in the demonstration programme, community leaders and CBOs - amounting to approximately 200,000 people. The programme will also prepare the ground for the inclusion of disabled children for the future. b) Disability management programme: Basic health is a requirement and a right of all human beings. Often disabled people are denied this, because of misconceptions that they require specialist intervention. The concept that basic health management does not require experts needs to permeate widely, while simultaneously being put into practice. To this end, Public Health Midwives (PHM) in two Ministry of Health (MoH) divisions (Chilaw and Anamaduwa) will receive training. The idea is to enable them to identify and do basic management of disabilities at the community level, while referring further problems to specialists in the district. If successful, the experiment is expected to reach at least 1,200 disabled people in the two divisional secretariat divisions. In addition, it will further strengthen the capacities of 50 midwives to take up disability issues. 17
To make this initiative more holistic, Samrudhi Development Officers (SDOs) and Social Service Officers (SSO) in these divisions will also receive training. They will be trained in holistic needs assessments of disabled persons, problem solving at a community level and referrals for services. A well coordinated effort of the PHMs, the SSOs and the SDOs can help a large number of disabled people access community services in a manner that promotes their inclusion. c) The physical access programme: An area of 1 square km around the District Secretariat will be redesigned to demonstrate physical accessibility. This will include roads, pavements, traffic signals etc. The second part of this programme will be to build the capacities of local architects, engineers and builders on accessibility issues. 2. Community development and awareness creation: While the prototypes will demonstrate good practices on inclusion, this programme will address issues of sustainability, people’s ownership and high-quality services to disabled people. Creating an aware society will be the final objective of this programme. a) People’s mobilisation programme: The capacities of the APDC will be built upon to ensure that this is an independent body addressing disability rights. Important to mention is that the APDC committees will be trained in all of the programmes’ components mentioned here. This will give them a good working knowledge of the issues as well as prepare them to be future advocates for the cause. Alongside this, the systematic inclusion and promotion of disabled people as leaders will also be ensured. In the long run, they may form into separate associations for disabled people, or be an integral part of the current association – a decision that will evolve in the process of the association’s growth. b) Awareness programme: By using both modern and traditional forms of media, an awareness programme aimed at the entire district will be put into place. Radio will be one of the main forms of media used, as it is widely listened to, along with more traditional forms of entertainment like local theatre and songs. Creating positive images of disability, as well as raising issues of discrimination and prejudice, will be the focal points. c) The partners’ development programme: This programme will work to include disability in the existing agenda of the NGOs and CBOs. Three NGOs working with other CBOs of women, children and young people will be selected for this. These partners will be trained on the rights perspective of disability so that inclusion becomes their own agenda. This programme will address inclusion of disability both at a policy level and also in the regular activities of these NGOs. 3. Livelihoods programme: This programme will: a) establish an employment exchange that will assess, train and place disabled people in suitable jobs; and b) develop a business enterprise to be run by disabled people themselves and/or by the APDC. 18
IMPLICATIONS FOR CHILD VISION SRI LANKA
CV will now evolve into a more rights-based organisation, where it will integrate disability with issues concerning human rights and other development issues – all in the context of the community. CV will take the role of establishing initial contact with disabled people and all the other immediate stakeholders, and will therefore have the crucial task of influencing the surrounding environment. There will also be an important focus on meeting the needs of disabled people, developing their ownership on disability issues, and in turn increasing the sustainability of the initiatives. There will be an effort to network not only with the development organisations in the district, but also with national-level organisations in the field, so as to keep track of current trends and policy changes in the field. The following diagram explains the role that CV will play:
The disabled person Needs/resource assessment of disabled people Need based technical interventions Training self and carers
The larger community Resource mapping Awareness and advocacy on disability Capacity building of stakeholders Promoting inclusive services Human rights
Disabled people’s groups Mobilising disabled people/carers Awareness on human rights Leadership building/advocacy
Working with all three – the individual disabled person, the disabled community and the larger community - is what will ensure complete inclusion and sustainability. To this end, CV will address some key management issues such as: Recruitment of staff for each of the programme components. All-staff training in rights-based approach, organisational management and leadership Five-year funding strategy Annual plans and monitoring, evaluation strategy Process documentation of each programme 19
An advisory committee for APDC as well as Child Vision will be set up. The disability manager will coordinate the various activities and will be the key person in taking the programmes ahead, along with the executive secretary.
The human resource requirement for the next five years will be as follows:
Overall coordination – one disability manager, preferably a social worker with field experience and capacity-building abilities. Inclusive education programme - one inclusive teacher with capacity-building abilities. Disability management programme - one physiotherapist with capacity-building abilities. Physical access programme - disability manager + consultant engineers. Community development and awareness programme - disability manager. Livelihoods programme - one livelihoods manager with a disability background (educator or occupational therapist)
It is crucial to reiterate here that CV will play a facilitator’s role, which implies that there are many more stakeholders of primary importance in the entire process. The District Secretariat and the APDC will be central to the whole process. VSO, which has been supporting the growth of CV for the last nine years, will, of course, be one of CV’s advisors. Besides this, CV will liaise with the Provincial Ministry and NGOs involved at both local and national level.
MEMORANDUM OF UNDERSTANDING (MOU) BETWEEN CHILD VISION SRI LANKA AND THE DISTRICT SECRETARIAT, PUTTALAM
Contact details: District Secretariat, Kurunegala Road, Puttalam, Sri Lanka. Phone: +94 32 22 65235, +94 32 22 65225
Child Vision Sri Lanka No.07, Anuradhapura Road, Puttalam, Sri Lanka. Phone/Fax +94 32 22 67457, +94 32 56 73008 E-mail: email@example.com, firstname.lastname@example.org URL: www.childvisionlk.org
Wanathawilluwa, Karuwalagaswawa ADP World Vision Lanka