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| Galton Institute Home Page | June 1995 Newsletter Contents | Newsletter Index |
In this brief description of some of the major causes and consequences of the noticeable increase during the last decade or so of those with Learning Difficulties (L.D.), we are concerned with individuals who would previously have been labelled as suffering from severe mental handicap, a disability very often associated with physical handicap as well. The category includes people of all ages, children and adults, since the term ‘learning difficulties’ is something of a euphemism designed to minimise stigmatisation and negative attitudes amongst the public as far as possible. Children with moderate L.D. are largely integrated into mainstream schools and provided with extra help, while adults may live with their families, in sheltered accommodation - or on the streets.
Affected individuals become the responsibility of the Social Services Departments of County Councils, generally from nursery school age onwards. The transfer of funds for this purpose from health authorities to local government was designed to finance the needs of all those who would not benefit from further purely medical care, among them people who had suffered serious accidents. It is generally agreed that such funding was not intended to result in a saving, nor does it. However, the cost per residential place has risen to between £500 to £2,000 per week, depending on level of disability because of progressively higher standards of care and general facilities required by law. High staffing levels account for the bulk of the amount.
The graph provides an illustration of the incidence of severe learning disability in one shire county whose population is about 740,000. The rate is 3.4 per 1000 with a mean age of 29, a modal age of 8 and an age range of 0 to 93. It can be seen from this age profile that the problem becomes acute for the Social Services Department from about age five unless the family requires major support from birth. The graph shows the numbers of individuals at each age and includes those:-
Life expectancy has greatly increased throughout this century together with that of people with congenital, hereditary or accidental disabilities. With the development of antibiotics, most infectious diseases including TB are no longer a common cause of death. Many other conditions have become treatable, even if not curable, with the immensely more powerful products of the pharmaceutical industry as well as new medical and surgical techniques. Such advances have also had an effect on the longevity of people such as those with Down’s Syndrome, who tended to succumb to infections at earlier ages. Interestingly, people with Down’s are now beginning to reach an age when they develop Alzheimer’s disease, albeit somewhat earlier than is the case among the general population. However, because of much smaller family sizes fewer children are born to older parents, which is likely to decrease the incidence of Down’s overall. But birth accidents and very low birth weight, due in some cases to fertility treatment resulting in multiple births, now account for a not insignificant proportion of learning disabilities of various kinds, since a much greater number of such babies are now enabled to survive.
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About 14 per cent of the population in the county in question belong to ethnic groups from the New Commonwealth, rather concentrated in certain localities. As is now well known through the work of Sarah Bundey and others, it is particularly the case among those of Pakistani origin that genetically transmitted disabilities, including those leading to L.D., are higher than in other groups because of the incidence and degree of consanguinity in about 50 per cent of marriages. This is a higher proportion than in Pakistan itself where the available gene pool is greater. Fragile X is the most common form of genetically inherited mental retardation. If transmitted through the female it becomes more destructive in each generation. Other genetic defects which appear among the Pakistani community and which express themselves as physical and learning disabilities are beta-thalassaemia, Hirschsprung’s disease, Robert’s syndrome and Glucose 6-phosphate dehydrogenase deficiency. These or other inherited disabilities may occur in all ethnic groups, though not in so concentrated a pattern. There seems little doubt that a change in marriage practices would have a marked effect on the genetic health of any given population in that certain diseases would in time disappear.
The move away from large hospital units and local authority hostels, replacing them with small units of, say, six or eight people, increases the total staffing required. The ‘expectation explosion’, sometimes fuelled by over-simplified reporting of new research and subsequent popular pressure, has led to an increase in demand for the provision of an enriched, high quality environment; an increased need for day care services and therefore transport; the teaching of ‘life skills’ to enable residents to cope in community situations, for instance road safety and appropriate social behaviour in shops and pubs. In practical terms this means, for instance, that the county must provide an additional sixty-place day centre every year.
Genetic counselling and termination of pregnancy are of no avail for mental handicap caused by birth accidents and very low birth weight. Most of those with disabilities have no alternative but to depend on society’s good will and compassion, which continues to be plentiful. The whole subject is, however, fraught with ethical dilemmas which have not begun to be discussed publicly in Britain. It is as yet hardly amenable to any kind of cost/benefit exercise even concerning quantity and quality of life.
Elizabeth Still
