We have a long way to go in our thinking before true inclusion of the disabled can be achieved, writes Mary Dickins
I have spent much of the past year travelling around the country meeting and running workshops for early years special educational needs co-ordinators (EY SENCOs) and other early years professionals. I have encountered individuals who were enthusiastic and equal to the task. I have been greatly encouraged by some of the excellent practice that is being developed.
But I have also met many early years workers who were lacking in confidence and felt confused about the demands of the roles they have assumed. Included in this category were some EY SENCOs who do not have disabled children currently attending their settings and little immediate expectation of having any.
In addition to the EY SENCO infrastructure now in place for the vast majority of settings, the DfES is now developing an additional layer in the shape of Area SENCOs who will each be responsible for advising approximately 20 settings.
While such developments are to be broadly welcomed, I believe that it is time for the sector to scrutinise and address the real issues.
For example, we need to ask:
- How many disabled children are there?
- Are disabled children able to attend mainstream settings?
- What are the real barriers to inclusive practice?
- How should we plan for inclusion?
How many disabled children are there?
Reliable statistics on the incidence and prevalence of different disabilities among the child population in the UK are largely unavailable. The Office of Population Censuses and Surveys published the last national survey in 1989. A scoping paper produced in 2001 by the Audit Commission, which is conducting a cross cutting survey into services for disabled children, produced some national estimates for the most common conditions.
For Down's Syndrome the prevalence in the child population is estimated at 10 per 10,000; for cerebral palsy it is 25 per 10,000; for autistic spectrum 20 per 10,000; Asperger's syndrome spectrum 71 per 10,000; vision impairment 4 per 10,000; permanent childhood hearing impairment 13 per 120,000; and for hyperactivity (ADHD), a controversial and disputed estimate of 3 to 5 per cent of school-age children.
These estimates are based on data obtained from voluntary organisations and extrapolations from limited academic studies. They are issued with a warning that they are 'subject to heavy qualification'.
Are disabled children able to attend mainstream settings?
While there is no doubt that much has been achieved, my own observations suggest that one of the biggest problems we currently face in early years is inconsistencies around the country in the support needed to enable children to be properly included in mainstream settings, or even, in some cases, be admitted at all.
This anecdotal evidence has now been given substance by a parallel study by the Audit Commission into provision for special educational needs, for which I have been a member on the advisory panel. The authors of this report, SEN - A mainstream issue, make the following specific observations:
'Arrangements for funding additional provision to meet children's SEN in the early years' sector remain incoherent and piecemeal. Although the situation should improve as a result of the new monies made available to establish a network of area specialists and SENCOs across early years settings... arrangements still fall far short on the level of advice and support provided for children of school age.'
The report goes on to recommend:
- 'LEAs, in consultation with Early Years Development and Childcare Partnerships, should consider the availability of support for children at Early Years Action and Early Years Action Plus and for children with SEN whose parents want them to attend a non-maintained setting', and
- 'Government should make available to LEAs funding to extend SEN advice and support to early years settings.
In real terms the current system means that the experience of inclusion for many families, particularly where choice of settings is restricted or children have complex needs, may begin and end when their child is refused entry to a local group on grounds of health, safety and/or ratio considerations.
Practical issues such as medical procedures, toileting and changing arrangements also figure large in the national picture. Some settings still require children to be 'toilet trained' prior to entry and make no allowances for the child who is likely to be incontinent throughout their life due to disability or impairment.
These issues will all need to be addressed in the longer term, as they are open to challenge via the new Disability Discrimination Act (see the eight-page pullout on Inclusion, Nursery World, 7 November 2002).
What are the real barriers to inclusive practice?
The biggest barrier to successful inclusion remains that of attitude. This is because there remains in our society an enormous amount of prejudice, fear, ignorance and misunderstanding regarding disability issues. The families of disabled children often encounter public misunderstanding. If the child has a visible disability there are stares, false sympathy and 'pity'. If the disability is not physically apparent and, as is often the case with disorders on the autistic spectrum, the child's behaviour is challenging, the families are accused of lack of control. Such reactions can make a simple visit to the local shops or park a harrowing and humiliating experience.
Early years settings do not exist in a vacuum. They are microcosms that reflect and absorb the views and influences of their local communities and wider society. In my view it is vital that training and other measures enable early years professionals to understand the following:
- That the current context for the education and care of young disabled children cannot be properly understood without considering the eugenicist practices and preaching of the past.
- That a vast amount of human potential was wasted in the past because of the idea that disabled children are 'ineducable' and should be segregated not only from their peers but often from their families and communities.
- That through inclusive practice and policies, early years workers are agents of positive and historic social change.
- That inclusion is primarily a human rights issue.
How should we plan for inclusion?
While the estimates presented by the Audit Commission are guarded, they do seem to indicate that individual early years settings are unlikely to be overwhelmed with disabled children. While we must develop inclusive strategies and policies, and increase accessibility for all children, there is no indication that we should expend our energies and limited training resources on 'preparing' for individual syndromes or disabilities, unless there is a real expectation that children with specific impairments are likely to attend. Instead we should:
Get to know the individual disabled child: We need to focus on getting to know children as unique individuals and learning to what extent and how they are affected by disability. We must beware of extrapolating inappropriately from textbook descriptions, because misunderstandings and presumptions may inadvertently inhibit a disabled child's ability to develop self-esteem and fulfil personal potential.
Move away from the 'medical model' of disability: We need to move away from a medical model of disability that assumes that, because disability is caused by mental or physical impairments, it is a medical 'problem' that we must 'treat' or cure.
Recognise that disability is part of ordinary everyday life: We need to recognise that disability is on a continuum and is a feature of ordinary, everyday life that will touch all of us at some point, directly or indirectly. It should not be confused with illness, chronic disease or mental disorders.
Proceed from the social model of disability: Using this model, the 'problem' is located outside the province of disabled people and their families, and back into the collective responsibility of society as a whole. It is the social and physical barriers that society creates which are in themselves disabling.
Laura Chapman is a trainer who specialises in disability equality training for early years workers. She speaks from both a professional and a personal viewpoint when she says, 'Social model thinking should guarantee that every child in every setting feels included. All children's needs can be met by an inclusive approach because it is child-centred, taking each child as an individual. Being included is not a financial issue - it can be incredibly cheap. The issue is primarily one of attitude, not finance.
'I am a woman with cerebral palsy. When the barriers and attitudes against me have been removed from society, I will no longer be disabled. But I will still have cerebral palsy and still be called Laura.'