EDUCATE THE DISABLED CHILD
UDE-UK promotes social inclusion and development of those most excluded from society, in particular members of the Ugandan/African Diaspora by organising workshops in literacy and CV writing; by mentoring people in education and employment; and by providing counselling, advice, information and general support.
Educate Them App was established with the conviction that putting education of the disabled children first on the public agenda as a fundamental for the realisation of their rights and wellbeing and for bringing about lasting social and economic progress in Africa.
UDE-UK’s work is rights based, inspired by universal values and informed by global experiences and knowledge. Its work is guided by the UN Convention on the Rights of the Child, the African Charter on the Rights and Welfare of the Child, and other relevant regional and international human rights instruments. UDE-UK aims to specifically contribute to the well-being of the girl’s child giving priority to those with disability by providing a platform for dialogue; collaborate with governments, inter-governmental organisations and civil society in the development and implementation of effective pro-child policies and programmes and also promote a common voice for children in and out of Africa and giving school fees and support to keep them to the education system.
The world is becoming less tolerant of exclusionary and discriminatory practices, including discrimination against persons with disabilities, due to increasing knowledge as well as growing awareness of universal human rights. Increased global accountability and commitment to the rights of persons with disabilities was made manifest by the adoption in 2006 by the UN of a Convention and Optional Protocol on the Rights of Persons with Disabilities (UNCRPD). The UNCRPD is a comprehensive instrument which provides all necessary guidance for national law and policy to ensure non-discrimination, equality of opportunity, full participation and social inclusion of persons with disabilities in all countries.
Where attitudes and public discourse are positive and empowering, where services are available to all regardless of disability, and where persons with disabilities are participating actively in the life of their communities, then ALL will experience the benefits of inclusion.
Next to war and famine, the failure to provide education for all children can be considered an unforgivable scandal of the current sociopolitical order. This failure is particularly glaring in the case of persons with disabilities. People with disabilities have the fundamental human right to good quality education that will ensure their full involvement in social and economic activities.
Children with disabilities especially girls child suffer an even more severe impact of the discrimination and attitudinal challenges generally faced by people with disabilities. As children, they are powerless, reflecting their limited access to economic resources, their exclusion from political participation, and the corresponding cultural image of childhood as a state of weakness, dependency and incompetence.
According to UNESCO, disability is one of the least visible but most potent factors in educational marginalisation. This is despite the fact that educational access, and subsequent success in education, is the gateway to change in many other areas of life for individuals with disabilities parti8cularly the girl child. Nothing will change society’s attitudes to disability more than educational access. The way educational laws and policies are formulated and implemented determine the success or failure of the school system, and eventually of the children with disabilities learning within it; this means that these law and policy instruments have to be reviewed regularly and updated with new trends, knowledge and skills, lest they become obsolete and irresponsible.
A preliminary investigation, carried out by The African Child Policy Forum, revealed that most African countries lack a proper law and policy strategy for the schooling of children with disabilities that complies with the requirements recognised in International and Regional Human Rights Instruments, and which is in keeping with current trends and perspectives on the education of children with disabilities.
Eighty per cent of the estimated 140 million out-of-school children in the world, the majority of whom are girls and/or children with disabilities, live in Africa. Perhaps an important factor that distinguishes disability in Africa from disability in other contexts is the fact that a lot of disabilities can be traced to poverty, poor nutrition and restricted access to basic services. The other issue that is worrying is the large-scale exclusion of children with disabilities from education services. According to some estimates, one in every hundred children with a disability is denied access to education services. This is explained by a number of intertwined factors. Firstly, there is the generally limited appreciation of the right to education of children with disabilities, which is all the more important since it is easy to lose sight of it, especially at a time when public expenditure is increasingly governed by market forces, and the instrumental view of education is prevailing.
We can draw the following lessons that we believe must be kept close to the heart of law and policy makers and educational practitioners:
- All children are equal and have the right to equal opportunity and equal treatment without discrimination;
- Every child with a disability is primarily a child, with the same rights to acceptance and education as any other child;
- Children with disabilities are different there is no doubt that a disabled child is different from one who does not have a disability. In addition, however, one disabled child is as different from another as one non-disabled child is different from another. Caution must be exercised, therefore, when putting children with disabilities into groups, such as – for example – “the mentally disabled”;
- Differences among children should be seen as both natural and enriching. It is not necessary or helpful to equate difference with deviance; rather, the ways in which we respond to differences reflect our own values concerning diversity. Further, the best interests of all people would be served by encouraging their interaction with broad range of other people;
- Prevention and early attention to learning problems arising from, or exacerbated by, nutritional deficiency or imbalance, chronic infection, and/or mild sensory impairment is more effective and less costly than later, remedial measures;
- The educational process is likely to be facilitated by collaboration based on mutual respect between educational establishments and structures and children’s families and homes;
- Instead of embarking upon ‘inclusion’- oriented reform with bandwagon fervour, a fruitful marriage can be fostered between special schools and ordinary schools. Special schools must develop an outward-looking stance and take on new roles, whereas ordinary schools have to revolutionise themselves at the levels of academic, organisational, curricular and staff development;
- In spite of the extremely complex nature of the content and approach for teaching disabled children, “trial and error education” should be avoided at all costs
- The teacher’s work is to devise and implement means by which each child learns and makes progress (rather than to appear before pupils and issue statements of knowledge);
- Development of the child’s general communication skills is vital to facilitating the interaction between child, teacher and curriculum – hence using communication media appropriate for a
child’s particular needs is crucial;
- In testing and assessing the academic performance of disabled children, there has to be a shift away from standardised, mainly psychometric, tests, towards predominantly teacher-produced diagnostic testing that determines a child’s learning potential and identifies how it can be improved;
- Children with disabilities should not be disciplined for being disabled, or because of a disciplinary problem related to their disability;
- Language has to be used in a non-offensive manner, and the use of laboratory, medical, or other potentially exclusive language must be minimised;
- For children who have appreciable difficulties, a carefully modified curriculum is usually required for progress to be made in earlier years;
- Post-school goals have to be identified and incorporated into the curriculum, to prepare the young person with disability for post-school life.
Once such rights awareness is inculcated in the minds and hearts of law and policy makers, as well as in people on the frontline of the implementation of those laws and policies, it is important to take the following steps:
- Guarantee a deep level of political commitment for equality and nondiscrimination;Ensure equitable and adequate funding;
- Supply qualified teachers who show compassion and commitment to their roles;
- Make individual schools as inclusive as possible;
- Foster a fruitful engagement between homes and schools.
Finally, it must be acknowledged that the progress already made on each of these fronts has been encouraging; and it can be said, with some level of confidence, that the world is indeed on the right track towards creating a future for persons with disabilities that ensures and respects their unfettered right to a dignified life, including the right to education.
There are 500-650 million persons with disabilities in the world, approximately 10 per cent of the total population. Of these, about 150 million are children, of whom 80 per cent live in developing countries. It is estimated that 140 million of the world’s children are out of school, of whom the majority are girls and children with disabilities. Eighty per cent of these live in Africa.
Major causes of disability in Africa are communicable diseases, war, accidents, and inadequate prenatal and neonatal health care services. It is now established that many disabilities can be traced back to poverty, poor nutrition and restricted access to basic services.
Cause and extent of educational exclusion of children with disabilities
Disability has been a major cause of educational exclusion. Children with disabilities are far less likely to go to school or to stay in school, for a variety of reasons including poverty, inaccessible school and public transport facilities, and public prejudice.
In many instances, regular classes may contain up to 100 children and are staffed by teachers who have only just left school themselves. In such circumstances, it is not surprising that some schools are unwilling to include children with disabilities, or that some parents prefer to keep their children at home, working in the fields or looking after younger siblings. According to UNESCO, fewer than 10 per cent of children with disabilities in Africa receive primary education. Various official estimates even suggest that perhaps only one child with disability out of a hundred attends any form of schooling in most African and Asian countries. Schools admitting children with disabilities normally only exist in towns and cities, often organised by parent groups or voluntary organisations, and with access restricted to those that can pay95.
Children with disabilities aged 0-6 years are the least catered for educationally. Pre-school children with disabilities are not a common feature in sub-Saharan Africa. Most preschools found in the region form a section of an existing special primary school. This is partly due to the lack of assessment and screening services and expertise.
Lack of educational facilities is not the only reason for the limited access to education of
children with disabilities. Household deprivation and negative parental and community attitudes – which can go as far as causing parents to hide children from public view, or to think they are uneducable – play an equally important role in limiting access.
In Kenya, for instance, community-based projects include fieldwork designed to:
- Identify children with disabilities, and work with parents, siblings and relatives, training them to train their children in turn, using individualised programmes (mainly the Portage or other materials developed by the field workers themselves).
- Organise playgroups for early stimulation and pre-school activities.
- Organise meetings and workshops for parents.
The field workers, selected from the community, are trained on the job. The projects are run by management committees, but rely on external funding.
Involving parents and caregivers
Inclusion is often happening one student at a time. This is usually a result of advocacy by individual parents. The burden on families and particularly parents to be on the front line in insisting on education for their child in an “inclusive” setting is a global reality. We can state with confidence that positive change in inclusive practice is linked to parent demand. It is their vision, goals and dreams for their child that pushes the inclusive education agenda forward296.
Parents are the first to contend with the disability of their child. According to experts, parents work through such stages of denial as grieving, anger, and depression, before eventual acceptance of their child’s condition, a state that is no less caring but which is defined by more limited
There are a host of concerns that parents live with relevant to their children’s disabilities, which often dictate their actions. Parents ask questions and seek answers on various issues, including the following:
- Cause of the disability: what factors are responsible for the disability? What did we do to contribute to the condition? Why us? Why did that happen to us? Is it safe to have another child? Parents generally feel that they are responsible for the disability. They constantly seek reasons for the disability by visiting different professionals to establish the cause and a cure;
- Impact on the family structure: parents are concerned with how their child with a disability will impact upon the family. Will his or her presence affect the situation of the family? How will the disability be explained to other children, relatives and neighbours, and what will be their reaction? Are there educational and community resources available to serve my child?
- Treatment and intervention: many parents spend countless hours seeking treatment or a cure for the disability, and they ask: what type of treatments or interventions are recommended? Where may the needed services be located? How will the child’s school be decided?
- Prognostic outlook: parents are deeply concerned with the future for their children. They often question: will a cure be found for our children? Will our children outgrow the disability? What will our children be like when they are adults?
Parents and the extended family are the principal, and in some cases the only, source of structured stimulation that children with disabilities receive. In fact, formal intervention
can only achieve anything if it is reinforced by, and tied to, family activities and community relationships. Studies have shown that children who have warm, affectionate relationships with parents have higher self-esteem, even when they are relatively inadequate at specific skills.
It is therefore important that parents should be encouraged to be active participants in setting goals for their children, and in helping their own and other peoples’ children to meet these goals. Parents will understand the inclusive philosophy of their children’s school, and will be encouraged to engage in advocacy efforts to support that orientation301.
When encouragement and support are there, parents can also support their children in combating negative attitudes and changing their self-image, as well as supporting them pedagogically at home to deal with prejudice, not internalising it, but confronting or ignoring it, perhaps, or working their way around it. In this way, parents can also create a better understanding of their child’s situation by school personnel, and can be advised in their turn by the school personnel302.
Education costs and modes of funding and financing
Parents end up covering private costs of schooling (e.g. uniforms, development fees, examination fees, lunch, transportation and tutoring) that in most cases are not affordable and as a result, most disabled child end up staying at home.
Poverty-related funding: Because of the fact that the number of pupils identified for special education is a poor measure of prevalence, and because of a plethora of perverse identification and placement incentives, a better proxy measure for true prevalence has been called for. This is behind the move towards adjusting special education funding based on pupil poverty. In an attempt to find a proxy measure for true prevalence, or the degree of special education need in a district, a funding amount is determined based on whatever general formula is being used, and then these allocations are further adjusted according to a ‘poverty factor’.
There are arguments for and against a poverty adjustment to special education funding. For example, while parental reports of disability diminish with family income, no relationship between the percentage of pupils in poverty and those in special education is observed. Some will argue that the first measure, showing a positive relationship between disability prevalence and poverty, is weak because it is based on parental reports, while others will argue that the latter relationship, showing no link between special education and poverty, is not strong because it is based on special education identification rather than prevalence rates.
Starting with the notion of education as a human right, education can be analysed through a rights-based approach. A human rights-based approach to education is founded upon three key principles:
- Access to free and compulsory education.
- Equality, inclusion and non-discrimination.
- The right to quality education, content and processes365.
The view of education as a right is hugely important, since it is easy to lose sight of it, especially at a time such as now, when market forces increasingly govern public expenditure, and the instrumental view of education prevails. The right to education is enshrined in a host of international and regional human rights instruments, including the Universal Declaration of Human Rights, the International Covenant on Economic, Social and Cultural Rights, the Convention on the Rights of the Child and its General Comment No 9, the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities, and the Convention on the Rights of Persons with Disabilities and its Optional Protocol.
Foster a fruitful engagement between home and school
The challenges facing the implementation of inclusion in schools include the difficulty of envisaging inclusive schools within a society that pursues policies and practices that exclude some of its citizens from participation. This fact signals the need for partnership between schools and the community at large, in which the home and family is the singular important unit. Parents are instrumental in the overall upbringing of their children, and not least in their education.
For a number of reasons, however, their role has largely been limited to the home setting. Without home-school relationships, there cannot be effective educational progress in the life of the child with a disability. The responsibility for home-school relationships lies with both schools and parents or caregivers. Schools striving towards inclusion have to aim at fostering a fruitful school-community partnership, in order to ensure that efforts within the school compound are extended to the larger community.