Children who are blind or have low vision: Findings from recent research supported by Sightsavers International Sarah Elliott/Sightsavers Sightsavers International works with partners in developing countries to support education for children with visual impairment and to promote eye health and prevent avoidable blindness. Several recent studies have been conducted in East Africa, South Asia and the Caribbean to assess both the causes of visual impairment and the strengths and challenges of current education services. This brief presents the main findings from this research. Sharon (aged 16) and Dorothy (aged 17) use special magnifying software to read in large print in the resource centre at Moi Secondary School in Nairobi. What are the causes of blindness in children? In East Africa, children in schools for the blind in Uganda, Tanzania, Malawi, Zambia and Kenya were examined to identify their levels of vision and the cause of visual loss. 1,062 children enrolled in these schools were examined according to standard WHO criteria. The common anatomical causes of blindness were found to be corneal scars (19%), diseases of the whole eyeball (16%) and cataract (13%). The results were compared with data collected in three of the countries in 1995, and it was found that the major causes of blindness have not changed significantly over time, although there are now fewer children needing cataract surgery. These studies confirmed that the development of cataract services for children in all countries had made an impact on reducing the number of children who are avoidably blind. They are providing evidence for ongoing efforts to strengthen paediatric eye care, including programmes to train health workers and teachers in childhood blindness and equip hospitals with the equipment needed, and advocacy for increased immunisation to combat corneal scarring. The findings also provided further evidence that there are still many children in schools for the blind who could attend mainstream schools with only a little specialist support. Sightsavers and other stakeholders will be discussing these findings with Ministries of Education with a view to supporting children to join mainstream schools wherever possible and, in due course, reviewing the wider role of special schools in East Africa. In Sri Lanka, 243 children aged 5-15 years with visual impairment and studying in 12 schools for the blind, 30 integrated education schools and 6 multiple disability schools were examined using the standard WHO methodology for childhood blindness. It was found that 58.5% were blind and the remaining children had low vision. For 43% of children, visual impairment was due to hereditary factors. The main causes of visual impairment were retinal disease (37%), whole globe causes (31%), cataract (20%) and glaucoma (7%). With the use of low vision devices, 25% of children had an improvement in their vision. As a result of this study, the Ministry of Health, in collaboration with Sightsavers, agreed to establish a specialist eye centre for children in Colombo. Sightsavers also supported the development of a national strategy for low vision care which has resulted in the establishment of at least 12 low vision centres in the country. This will facilitate the participation of children with visual impairment in regular schools, after the provision of assistive devices and sensitisation of school administration and teachers. In Pakistan, a national survey of all schools for the blind was undertaken in 2003 using the standard WHO guidelines for childhood blindness. 1,000 children in 46 schools were examined. The survey found that 77.5% of children enrolled in these schools were blind and the remainder had low vision. For 60% of children, visual impairment had a hereditary basis. The main causes of blindness were retinal disease (51%), whole globe problems (28%) and corneal problems (3.7%). Over 11% of children with low vision had significant improvement in their vision using low vision devices. Two population-based studies in Pakistan, one in a rural district and one in a semi-urban district, were conducted to determine the prevalence of refractive errors in school-aged children. They found a mean prevalence of 3.5%, implying that there are roughly 1.6 million school-aged children with visually impairing refractive errors in the country. Studies into community perception of refractive errors found key barriers to children wearing glasses were concerns about appearance and cost. In relation to the latter, 43% of respondents said that they could not afford more than US$3 for a pair of glasses; this is particularly significant for children because they Peter Caton/Sightsavers Devika (aged 10) is visually impaired and is supported by a special teacher so that she can enjoy attending her local school with her friends. require frequent replacement of glasses due to breakages. The studies in Pakistan were instrumental in engaging government education planners and policy makers with inclusive education. The data formed the basis for a national consultation on inclusive education that resulted in the establishment of an inclusive education cell in the Ministry of Education and the launch of a pilot programme to test inclusive systems in 16 demonstration mainstream schools in the public sector. Eight of these schools are supported by Sightsavers. The learning from this pilot programme has played a key role in the development of a revised policy for education. In India, a study was undertaken to determine the main causes of blindness and vision impairment in children enrolled in two inclusive education programmes in Orissa and Chhattisgarh. A random sample of 166 children from the 300 students enrolled were examined. In Orissa, 54% of children were diagnosed with cataract and corneal diseases, and in Chhattisgarh, the predominant cause was diseases of the retina. Following the research, children with cataract were referred to a tertiary-level partner for treatment, and children with conditions that required further diagnosis (such as diseases of the retina) were referred for further assessment, and treatment where possible. The findings provide guidance for Sightsavers ongoing work with partners to strengthen child eye health. The findings have been shared with eye care stakeholders in the region with a view to strengthening paediatric services, and are also being used as input for country and regional situation analysis, which, in turn, will inform the development or revision of regional and national eye health plans. Peter Caton/Sightsavers In the Caribbean, a comprehensive assessment of children in education programmes designed to support children with visual impairment was undertaken to ascertain the clinical and low vision support required. A purposive sample of 171 children was drawn from 3 countries (Jamaica, Trinidad & Tobago, and Guyana), and a detailed ophthalmic examination, low vision assessment and cognitive assessment were carried out by the review team. The assessments of children in Jamaica indicated that the predominant causes of visual impairment in the sample were diseases of the retina and glaucoma. Adita (aged 9) has low vision and attends Tunbridge School in Bangalore, India. The school has special equipment to help her learn alongside her sighted friends Policy implications • A high proportion of childhood blindness is preventable or treatable. At least 25% of children enrolled in schools for the blind or inclusive education programmes have preventable or treatable causes of blindness or vision impairment. More action is needed to strengthen eye health services for children and prevent childhood blindness. This should include better monitoring of immunization coverage and vitamin A supplementation to reduce corneal blindness, and enhanced access to specialised cataract treatment, with low vision care for good visual rehabilitation to support children’s continued education. • Refractive errors and low vision are common causes of vision impairment in children, affecting 50% or more of children in schools for the blind or inclusive education programmes. Providing low vision devices and glasses would promote education opportunities for a large number of children. Programmes to provide glasses need to address barriers of cost and style. How effective are systems for assessing children with visual impairment and providing appropriate low vision devices and glasses? In Malawi, Kenya, Tanzania and Uganda, over 4,000 children enrolled in education programmes designed to provide support to children with visual impairment were examined by trained teams to assess their vision and determine causes of visual loss. The research found that 42% of the children needed glasses (but less than 10% had them), and 31% needed low vision devices (but less than 5% had them). This assessment provided much needed information on the need to expand the provision of glasses and low vision devices for children in these four countries. Sightsavers has since engaged with Ministries of Health in each country to discuss how best these needs can be met, both in the short term to ensure that all children currently in school benefit as much as possible from the education provided, and in the longer term by supporting the development of new schools of optometry in the region, to increase the quality and number of optometrists available to support children in school. The study demonstrated the need for greater linkage between low vision services and education. As a result of advocacy to the federal and provincial governments, low vision clinics, resource centres and early intervention centres were set up in Nick Bell/Sightsavers In Pakistan, of the 1,000 children examined in schools for the blind, 135 children could read 1M/N8 (normal print) with the use of magnifiers. Improvement in the number of lines seen on the visual acuity chart (LogMar) was also assessed. A new prescription of glasses resulted in improvement of 3 or more lines in 58 children, while with the additional use of telescopes, the number who had an improvement of 3 lines or more went up to 116. This suggests that at least 10% or more of children studying in the schools for the blind would be able to read and see the blackboard with the use of glasses and low vision devices. Suleman (aged 10) was provided with glasses after his sight was tested during a school screening in Pakistan. ten schools for the blind that also provide low vision devices. Furthermore, the Ministry of Education has agreed to set up 8 resource centres for the 16 pilot inclusive education schools to facilitate low vision assessment and training in the use of low vision devices. This has resulted in fewer children with low vision being enrolled in schools for the blind as they are now joining mainstream schools. In addition, four Text Accessibility and Legibility Centres were established in five public and school libraries. In India, the assessments of vision impairment in children enrolled in education programmes in Chhatisgarh mentioned previously found that 76% of children could potentially benefit from low vision devices, but only 2 children were previously using them. This study played an important role in establishing systems for children to be properly assessed for visual function and low vision before enrolment in the inclusive education schools, so that they receive the most appropriate support. It has also been used to develop stronger systems for the provision of assistive technology, to ensure that children benefit from the necessary low vision devices. In the Caribbean, the assessments of children with visual impairment in education programmes in Jamaica, Trinidad and Tobago, and Guyana found that 67% of the children were either blind or severely visually impaired, while 17% had moderate low vision. There was a significant improvement in vision in the low vision category when low vision devices were provided. Sightsavers’ partner, the Caribbean Council for the Blind (CCB), has used this research to continue raising awareness among stakeholders about the importance of low vision services, and to strengthen education programmes to better support children with low vision. The findings were instrumental in the formulation of the new strategic plan for CCB, which identified the training of Itinerant Teachers in low vision care and the establishment of low vision centres as vital supports to education services. So far, at least eight low vision centres have been set up in Guyana, Jamaica and Belize, and these are closely linked to the education programme. Policy implications • Strong links between the health and education sector and effective assessment procedures are essential to ensure that all children receive the type of educational support that is most appropriate for them. • Refractive errors and low vision are common among children participating in education programmes designed to provide support to children with visual impairment, yet very few of those in need have low vision devices or glasses. Addressing this would result in a marked improvement in the quality of education of these children. Systems for the provision of assistive devices and glasses need to be strengthened, including adequate low vision services and training of personnel in low vision care. How effective are current systems for supporting education for children with visual impairment? In Sri Lanka, a situation analysis of all children with visual impairment was conducted in 2003 in collaboration with the Ministry of Education. It was found that 434 blind children were studying in schools for the blind and 644 children with low vision were studying in mainstream schools. Using WHO criteria, it is estimated that the prevalence of childhood blindness in Sri Lanka is about 5 per 10,000 children (or about 7,000 children). This means that of all children with blindness and low vision, only about 15% are in school. Discussions are under way with the Ministry of Education on holding consultations between various stakeholders to develop a national strategy for promoting inclusive systems in education. Jamshyd Masud/Sightsavers In the Caribbean, the assessments of children with visual impairment in Jamaica, Trinidad and Tobago and Guyana found that coverage of children in need by educational programmes varied from 21-60% in the three countries. There was a gender bias, with more male children receiving support. Raheela (aged 19) has low vision and was struggling to see the board in class until she was provided with glasses. Sightsavers partner, the Caribbean Council for the Blind, is using this research in their ongoing advocacy for more inclusive education. Jamshyd Masud/Sightsavers In Kenya and Uganda, research was undertaken in 2007/08 with 85 Itinerant Teachers (ITs) and school-level Vision Support Teachers, to better understand their role and any challenges encountered. These teachers were providing support to 417 children and young people aged 020 years, which included 60 children who were blind and 324 children with low vision. Data were collected over one year using a journal in which the ITs recorded details of their caseload, their daily timetable of activities, what they did during the visit to each child, agreed action points, and any difficulties they encountered. The study found that the ITs were not able to visit Sadif (aged 13) lives in Pakistan and can now enjoy school thanks to her new glasses. children as frequently as planned, often due to the pressure of other classroom duties. In addition, most ITs spent considerable time trying to identify new children with visual impairment for the programme or increasing community awareness, rather than supporting individual children on their caseload. Levels of Grade 2 (uncontracted) Braille experience varied greatly, with only 50% of ITs with the relevant experience in Kenya and almost none in Uganda. This meant that Braille books produced in Uganda in Grade 2 were effectively inaccessible to both ITs and children. These two detailed studies confirmed the value of Itinerant Teachers in supporting children with visual impairment, but also highlighted several areas where this support could be improved. Discussions have now started with Ministries to consider how this can be done, including consideration of strategies to make more use of existing special schools for intensive Braille tuition, and better support systems for Itinerant Teachers. The Braille skills of Itinerant Teachers are also under review with a view to enhancing their skills. Policy implications • Many children who are blind or have low vision are not currently in school. More action is needed to identify children who are blind or have low vision and to develop and implement policies for inclusive education systems. • Itinerant Teachers are a valuable resource in the education of children with visual impairment, but they are currently unable to spend adequate time on providing itinerant support and have insufficient knowledge and experience of teaching Braille to support blind children in mainstream schools. Action is needed to redress heavy workloads and to provide more orientation and capacity development. • Gender imbalances must be addressed so that more girls with visual impairment are identified and supported to participate in education. Research and Development to support education services Sightsavers also supports research to develop new tools and technologies that can support education for children who are blind or have low vision. For example: In Pakistan, a research and development project is underway to develop a functional vision assessment kit and standardised procedures to assess a child's use of vision and visual efficiency in daily activities. The assessment determines how the child accesses his/her visual environment. A teacher trained in the use of the kit can perform a complete cognitive and functional vision assessment. Based on this, the teacher can then make an appropriate selection of learning medium, environment modifications and visual skills training to develop an individual education plan for the child. Sightsavers provides ongoing support to the development of affordable high-quality low vision and assistive devices for use by children in their education settings, including a range of magnifiers to suit different needs and electronic devices such as closed circuit television and the Dolphin Pen, a portable screen reader and magnifier. Sightsavers’ support to research and development in the area of low vision care has resulted in the production of vision assessment material and tests, together with a wide range of affordable low vision devices and assistive technology that have helped to enhance coverage of services to the poor. This has also had immense global implications, with low vision resource centres established in Hong Kong and South Africa for distribution of assistive technology, low vision devices and assessment material to support low vision and education programmes in the public sector in many developing countries. Rachel Heald/Sightsavers Our support to the Dolphin Pen is supporting computer use for children and adults who are blind in several countries in Africa and beyond, thereby enabling better education and employment opportunities. Several other manufacturers are now exploring similar products. Sandra (aged 13) has low vision and lives in Kamuli District in Uganda. She uses a special tactile globe to learn about countries around the world. For more information on Sightsavers’ research, please contact: East, Central and Southern Africa: Ronnie Graham [email protected] India: Elizabeth Kurian [email protected] Pakistan: Niaz Khan [email protected] Sri Lanka: Sunil Fernando [email protected] Caribbean: Phil Hand [email protected] Other countries and global research: Simon Harris [email protected] Low vision, refractive errors and research & development: Hasan Minto [email protected] Researchers, partners and acknowledgements Surveys of children in schools for the blind and resource centres in Kenya, Malawi, Tanzania and Uganda C. Tumwesigye, Department Of Ophthalmology, Mulago Hospital, Kampala, Uganda G. Msukwa, Lions Sightfirst Eye Hospital, Blantyre, Malawi M. Njuguna, Eye Department, University Of Nairobi, Kenya B. Shilio, Department Of Ophthalmology, Kilimanjaro Christian Medical Centre P. Courtright & S. Lewallen, Kilimanjaro Centre for Community Ophthalmology, Good Samaritan Foundation, Moshi, Tanzania Ministries of Health in Kenya, Tanzania, Uganda and Malawi Ronnie Graham, Sightsavers International Funding from Optometry Giving Sight (OGS) Ronnie Graham, Sightsavers International With support from: Kenya Ministry of Health Ministry of Education Kenya Institute of Special Education Kenyatta University (Department of Special Education) Sightsavers Kenya Country Office Malawi Ministry of Education, Science and Technology Montfort Special Needs Education College Malawi Institute of Education Sightsavers Malawi Country Office Uganda Surveys of children in schools for the blind Ministry of Education Kyambogo University (Faculty of Special in Zambia Education and Rehabilitation) G. Chipalo-Mutati, University Teaching Hospital, Ministry of Health (Iringa District) Lusaka, Zambia Sightsavers International Uganda Country International Centre for Eye Health, London Office School of Hygiene and Tropical Medicine Caribbean Ronnie Graham, Sightsavers International Dr. P Vanes, Georgetown Public Hospital, Assessments of children with visual Guyana impairment in India, East Africa and the Caribbean Council for the Blind Caribbean Hasan Minto, Sightsavers International International Centre for Eyecare Education (ICEE) India Dr. Sunita Lulla, Venu Eye Institute Sightsavers International India Office The role of the Itinerant Teacher in Kenya and Uganda Pakistan Population Based Studies on Refractive Errors Paul Lynch, Visual Impairment Centre for Teaching and Research, University of Birmingham Ronnie Graham, Sightsavers International Dr. Ghani Sheikh, Community Ophthalmologist, Al-Ibrahim Eye Hospital Dr. Zahid Jadoon, Epidemiologist, Pakistan Institute of Community Ophthalmology With support from: Pakistan National Situation Analysis of Refractive Services Kenya Ministry of Education Kenya Institute of Special Education Kenyatta University (Department of Special Education) Sightsavers Kenya Country Office Uganda Ministry of Education Kyambogo University (Faculty of Special Education and Rehabilitation) Sightsavers International Uganda Country Office Pakistan Blind school study and National Census Data Analysis Dr. Haroon Awan, Sightsavers International Dr. Hasan Minto, Sightsavers International Dr. Mubashir Jalis, Paediatric Ophthalmologist Dr. Clare Gilbert, International Centre for Eye Health Mr. Tayyab Shah, GIS Specialist Dr. Aliya Qadir Khan, Community Ophthalmologist With support from: Ministry of Social Welfare and Special Education Directorate General of Special Education Provincial Departments of Social Welfare and Special Education Ministry of Health Provincial Health Departments National Eye Health Committee National Paediatric Ophthalmology Task Force Mr. Hasan Minto, Sightsavers International Dr. Haroon Awan, Sightsavers International Ms. Sumrana Yasmin, Sightsavers International Mr. Niazullah Khan, Sightsavers International Mr. Syed Farrukh Aftab, Researcher, Pakistan NGO Federation Dr. Zahid Jadoon, Epidemiologist, Pakistan Institute of Community Ophthalmology Dr. Aliya Qadir Khan, Community Ophthalmologist Prof. Asad Aslam Khan, National Coordinator, Prevention of Blindness Programme With support from: Ministry of Health Provincial Health Departments National Eye Health Committee Pakistan Optical Association Pakistan Community Perceptions Study Mr. Syed Farrukh Aftab, Researcher, Pakistan NGO Federation Mr. Hasan Minto, Sightsavers International Ms. Sumrana Yasmin, Sightsavers International Sri Lanka Situation Analysis Ms. Lucy Roberts, Consultant Sri Lanka Blind Schools Study Dr. Habiba Rawoof, Ophthalmologist With support from: Ministry of Health Ministry of Education For more information or to contact any of our offices worldwide see www.sightsavers.org Registered UK Charity Numbers 207544 and SCO38110 Ireland Charity Number CHY15437 US Employer Identification Number 31-1740776 Printed on 100% recycled paper
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