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Researchers call for end to raw deal for chronically ill children

Chronically ill pupils should be treated as having special educational needs to avoid them being marginalised or excluded, researchers have recommended.

A study by Alison Closs and Claire Norris of Moray House Institute of Education comes hard on the heels of a major review of post-school provision for special needs announced last week by the Education Minister.

The research took two years and involved children with "fluctuating or deteriorating" conditions ranging from cancer and Aids to severe asthma and epilepsy. Normal patterns of schooling were frequently disrupted. Such children, Ms Closs said, "should fall within the category of special needs. But education authorities tend not to see health problems that way, preferring to concentrate on disabilities and learning difficulties."

Some sick children did not have a record of needs or an individualised learning programme, the study discovered, "even when a very clear case existed for one or more of such responses".

Ms Closs said her preferred option was an individualised programme in order to ensure that pupils' needs were addressed "in a systematic and humane way". But she conceded this would involve a major financial commitment.

Schools are sometimes unwilling, because of concerns about untrained staff or fears of legal consequences, to address children's medical care fully and there could be delays in making arrangements, the study found. Some children are stigmatised or ostracised by other pupils and occasionally teachers.

Ms Closs said one of the "disturbing" findings was the lack of reliable data on the number of pupils involved. Councils, all of which responded to the survey, said the problem involved just 1-3 per cent of the 5-18 school population. Medical surveys, however, put the figure at 9-15 per cent.

Ms Closs said the gap "could reflect lay perceptions of illness which seems to polarise between pupils who are too ill to benefit from school and those who are not ill at all. We were concerned that there were many youngsters in a grey area in the middle, such as the child with asthma who has been awake all night coughing but turns up the next day and probably underperforms as a result. "

She suggested that the Scottish Office should include a relevant question in its annual census.

Children absent from school on health grounds in Scotland do not have a legal entitlement to education at home or in hospital, as they do in England and Wales, even where they are well enough to benefit. "Authorities which do make such provision rarely do so at a level which would be considered educationally adequate," the Moray House report states.

Ms Closs said legislation on its own, without accompanying guidance on priorities or equity of treatment, would be insufficient.

Schools coped better with sudden terminal illnesses, which are traumatic but where they "rose to the occasion". Long-term, fluctuating illnesses could lead to children being written off as "a problem", Ms Closs said. One of the report's 31 recommendations is that the "low level" of knowledge of medical conditions must be tackled by "substantial staff development at all levels from classroom teachers to education officers and educational psychologists".

The researchers looked in detail at two councils and four mainstream schools, as well as examining 18 child profiles. The full report and an abbreviated version are available from Moray House (Pounds 12 and Pounds 6 respectively).

* The Education Minister this week announced an extra Pounds 20,000 for the Scottish Sensory Centre at Moray House. The cash will allow development packages to be produced for staff working with children who are deaf and blind or have multi-sensory impairments.

* Three pupils in every classroom could face a lifetime of debilitating ear noise, the Tinnitus Action organisation warned this week at the start of a nationwide campaign.

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