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Editor,—Professor Sir Roy Meadow paints a spine chilling tableau of the lethal effects of abnormal mothering in three fascinating case reports,1 conspicuous by the lack of involvement of paediatric, education, and social services. He goes on to ask “whether there are similar children today being kept in bed, or being kept at home, and being prevented from participating in normal school and social life, and from growing up as healthy independent adults?” The simple answer is yes—there are children today who grow up believing that they are disabled or unable to attend school because of their parents’ disordered perception. It has been our experience that Social Services have great difficulty in proving “significant harm”, even when alerted by health professionals, and they feel powerless to act in such “borderline cases”. The problem is compounded further by at least two unrelated pieces of legislation, respectively the Disability Living Allowance (DLA)2 and the Education Otherwise3 regulations; the finer details of which do not usually form part of child protection training.
Currently, it is perfectly legally possible for a parent to label their child as disabled and to receive Disability Living Allowance for the child’s “severe disability”, without the child having ever been assessed by a paediatric medical/surgical/psychiatric specialist. The (unsuspecting) general practitioner’s report of “mild asthma, eczema, behaviour problems and scholastic difficulties” is interpreted as “severe disability” by the Benefits Agency (who has surprisingly very little leeway in the matter), and the child acquires a sometimes lifelong, entirely inappropriate and potentially extremely damaging lucrative tag. We propose the term “DLA abuse” for those cases where the child is thus inappropriately labelled, as in the cases described by Professor Meadow (which one could call disability abuse), with the additional complication of a financial incentive for the disability status. It should also be noted that, at the other end of the spectrum, the current disability regulations do not serve the needs of some seriously learning disabled but physically normal children, whose parents’ application for an allowance is often turned down, even when a paediatric specialist has recommended they apply for it.
It is not generally known to paediatricians or social workers that it is also perfectly legal for a parent to either never send a child to school, or to remove their child from school at any stage, provided they undertake to make alternative provisions. There is no requirement on the education authority or anyone else to assess the alternative provision (apart from an initial visit, about to be abolished), or its outcomes. There is no current mechanism for an older child’s choice in such matters to be established. It is our experience that some parents, when pressed by a network of heath, education, and social services for poor school attendance, suddenly discover the existence of the “Education Otherwise” provisions and use them to avoid prosecution (even when the child has a statement of special educational needs). These children then become “lost” and are invisible to the usual agencies; they are only ever seen by their general practitioner, or accident and emergency services. Some of them resurface a few years later in adult psychiatry services, by which time their emotional health is beyond repair.
This is not meant to ignore the fact that many children are appropriately in receipt of Disability Living Allowance and some children receive excellent education outside a normal school environment; but it is equally undeniable that there are a number of cases in which, in our view, the current legislation is misused and the letter of the law is adhered to while its spirit is ignored, with the result that children are suffering avoidable significant harm.
All professionals concerned about the welfare of children need to ask for a rationalisation of the regulations that lead a child to be labelled as severely disabled and a monitoring system for children Educated Otherwise. Unless this happens, the lost children of today will, 10 years after the Children’s Act, continue to lead their hidden and unhappy lives, regardless of “the welfare of the child is paramount” principle.