Valuing people: a New Strategy for Learning Disability for the 21st Century

The White Paper ‘Valuing People’ has again brought home to us a problem we have in Learning Disability that doesn't seem to be acknowledged, namely that we don't know who or where the majority of people with learning disabilities are. The White Paper quotes a rate of 2.5% for the percentage of the population who have a learning disability. This is quite close to the 2.3% that one would expect if we defined learning disability as having an IQ of 70 or below. It then goes on to make a number of proposals for learning disability services nationally, one of which is the expectation that each person with a learning disability will have a Health Action Plan (HAP) by June 2005. If this can be done, clearly it is going to benefit people with learning disabilities; however, the problem I can see is that it requires us to be able to identify all people with learning disabilities. In Huddersfield, we have a total population of 226 000, which, based on a rate of 2.5%, means that there are 5650 people with learning disabilities living here; however, we know of only 993 people. This seems a pretty poor state of affairs; however, when we checked with neighbouring districts we found similar results: Bradford has a population of 547 000, so should have 13 700 people with learning disabilities yet knows of only 1243; Airedale has a population of 117 000, so should have 2900 people with learning disabilities but knows of only 208; Dewsbury has a population of 175 000, so should have 4400 people with a learning disability but only knows of about 646. Taking these figures as a whole, we seem to only know about 11.6% of the predicted number of people with learning disabilities based on the 2.5% of the population as suggested by the White Paper. If these figures are repeated over the country, it would seem that there are over a million people who would be considered to have a learning disability of whom learning disability services are not aware. Quite apart from the problems this could have in implementing the letter of the White Paper, it also seems to raise a number of other questions: • Where and who are these people? • Are they coping? • Why have they not come to the attention of learning disability services? • Would it be advantageous to them to be identified, which would possibly result in them being given a service, but also a label of having a learning disability? • Should they indeed be regarded as having a learning disability? The above statistics are based on the predicted population with IQs below about 70, yet most definitions of learning disability do not regard a low IQ as sufficient to classify someone as having a learning disability and also include a deficit in actual level of functioning. • If all these unidentified people are not to be regarded as having a learning disability, then what proportion of people with an IQ below 70 should be regarded as having a learning disability? Clearly, in a short letter we don't have space to address these questions; however, we feel that it is important that people working with and planning services for people with learning disabilities should be aware of these issues.