Has the time come to launch a new policy addressing the plight of disabled children in Egypt? Hannah Rashdan explores some of the answers discussed last week An estimated eight per cent of Egypt's children suffer from disabilities ranging from mental retardation to physical malformations. While children's disabilities has been a key subject of debate for politicians, NGOs and international organisations for the last 15 years, a national strategy to confront the problem has not been formulated. The absence of a cohesive national plan of action to prevent disabilities and promote rehabilitation continues to hinder progress. "We need a system. In Egypt we have infrastructure but not a working system. It is like having anatomy without the physiology," said Dr Alaa Shukrallah, pediatrician and chairman of the Association for Health and Environmental Development (AHED), an independent NGO. As a pioneer in the drive to protect disabled children, Dr Shukrallah complained that too many of the recent initiatives lack coordination and that individual efforts have not been complementary. The protection and rehabilitation of disabled children was the focus of the Workshop for the Early Prevention and Rehabilitation of Disabled Children, which took place on 16 and 17 April. Egypt prides itself on being one of the first 20 countries worldwide to ratify the Convention on the Rights of the Child (CRC) and as an organiser of the 1990 World Summit for Children. In addition, an extended national plan was launched by President Hosni Mubarak in 1989 called Decade for the Protection of the Egyptian Child. Yet, 2.5 million disabled Egyptian children still lack access to quality services and facilities guaranteed by the national plan. Statistics released by the State of Women and Children published last August by the UN Children's Fund (UNICEF) and the National Council for Childhood and Motherhood (NCCM) suggest that out of a sample study of 600,000 disabled children in Egypt, only five per cent are enrolled in school. This is in part due to a lack of personnel and negative parental attitudes towards educating disabled children. Specialists at last week's workshop argued for the need for a national plan that directs the participating committees, NGOs and volunteers to identify the needs of disabled children, provide resources to fill the gaps and to develop and prove methods that can be standardised on a national level. The workshop was organised under the umbrella of the Committee for Disability Prevention and Rehabilitation, an inter-sectoral body established in 1997 under the auspices of the Ministry of Health. Dr Sarwat Badr, who leads the Rehabilitation Department in the Ministry of Health and is the head of the committee, explained that the committee provides "prevention, early detection and early intervention through treatment and rehabilitation via a referral system linking rural areas to district hospitals, and general hospitals to special institutes." As a result of this effort, Dr Hameed Kadesh, head of the Programme for Disabled Children at AHED, said that today there is better understanding and heightened interest from the community with regards to disabled children. "We have a more developed approach now. Many networks of organisations have been formed, such as special committees and departments, community programmes and financing services," said Dr Kadesh. According to Dr Shukrallah, the recent workshop is "a continuation of the work UNICEF has been doing. [Its purpose] is to present and develop three programmes for community-based rehabilitation (CBR), as well as [being] a tool for early detection of disabilities." A major obstacle on the road towards a national plan has been the lack of an adequate "early detection tool". A testing procedure for the early detection of disabilities developed by the World Health Organisation (WHO) was implemented and found by the committee to be difficult to apply. Dr Shukrallah explained that a new technique is being developed in Egypt to replace the more cumbersome "WHO tool, which was a complex combination of six previously approved tools". Dr Randa Kamal, assistant professor of pediatrics at Ain Shams University, says that misapplication of detection tools is a potential source of error. She presented the Egyptian-developed tool for early detection during the workshop and explained that it should be "simple and short enough for nurses to apply without as much room for misapplication". Questions were raised about the timing of the tool's application. Dr Kamal said, "It is important to detect any disabilities early on because they could indicate the presence of further disabilities such as Down's Syndrome, which could eventually cause more problems." However, many are concerned that the early testing for disabilities may provide "a false positive result" when conducted at the wrong age. Still, Dr Kamal asserted, "The earlier the better so that parents can look for and be aware of what is normal for their child. Follow- up testing can always be set up for a later date if a false positive result is suspected." Another issue was the arrangement of age-specific testing brackets to detect disabilities according to the child's age and corresponding characteristics of health and behavioural progress. "A range from birth to six months is too wide. Either develop a chart which positions the child according to age or narrow down the brackets' ranges," argued Dr Shukrallah. While disabled persons in Egypt are entitled by law to services free of charge, "there is a huge problem with financing," Dr Shukrallah said. The provision of free services is limited by "the scarcity, lack of quality and lack of access to resources and equipment. People have to pay to acquire them." Another important area for progress is CBR, which aims at fulfilling the rehabilitation needs of the disabled by expanding a community's available resources. Based on this philosophy, the workshop suggested three CBR programmes to be implemented in Cairo, Alexandria and Qena (Upper Egypt) in order to involve the disabled and their families in all levels of the projects. "The programmes' general objectives are to provide services and equipment, empower the disabled and their families, and facilitate their integration into society," said Dr Kadesh, adding that, "local committees should govern projects, provide services, and classify disabilities." In an attempt to relieve some of the financial pressure for such programmes, the proposed CBR programmes aim to be self-sustaining. During the workshop, Dr Kadesh presented a LE600,000 budget spread over two years for all three programmes under which 30 per cent is allocated for implementation costs with the bulk of funds allocated for start-up costs. Sustainable loans will be relied on for the maintenance the programmes. Despite all of the discussions, the time for setting deadlines by which to measure achievement has not yet come. "The plan is to implement the three programmes over the coming year, but resources still need to be mobilised," said Dr Shukrallah. This is where the work of organisations such as UNICEF comes in. "UNICEF offers support for the committee through its experience in implementing CBR and in cooperation with three large NGOs as programme organisers -- the Coptic Evangelical Organisation for Social Services (CEOSS) in Cairo's Salem City, Caritas in Alexandria's Al-Amareya district, and AHED in Qena," said Dr Sarwat. UNICEF Child Protection Officer Nadra Zaki described a new strategy for the achievement of programme objectives referred to as one-class community schools. "One-class community schools are based on the rallying of services around schools for the disabled as community centres. It's done for the most part by NGOs at the field level because they know the community's needs. All of this comes under the umbrella of the Ministry of Health committee, of which the ministries of health and social affairs are the main axes. We are not working in a vacuum here," said Zaki. "It is high time to establish a system," said Dr Kamal, in reference to the standardisation of CBR programmes and the quality of services they provide. It would be about time. After all, the obstacles are formidable. "We need to work on unifying policies, decreasing the gap between strategy and implementation, better defining the role of those involved, making services accessible, especially in rural areas, sharpening early detection methods, providing education opportunities, and changing media messages which propel stereotypes," said AHED's Dr Kadesh.
