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Editorials

People with intellectual disabilities

BMJ 2004; 329 doi: https://doi.org/10.1136/bmj.329.7463.414 (Published 19 August 2004) Cite this as: BMJ 2004;329:414

Efforts to address the health needs of people with intellectual disabilities are hampered by the ‘hidden’ population

Editor – Recent contributions to the BMJ have highlighted the
significant challenges faced by people with intellectual disabilities.
Cooper et al (1) highlight the fact that the health needs of people with
learning disabilities are known to differ from the rest of the population;
they have lower life expectancy and face unique barriers in using health
services. Cooper et al (1) conclude that the population of people with
intellectual disabilities require specifically targeted public health
interventions.

More recently, Cornwell (2) emphasized that people who are registered
with learning difficulties are falling through the net in the NHS. We
believe that the problem is even more serious. We suggest that efforts to
address the health needs of people with intellectual disabilities are
hampered by the problem of the ‘hidden’ population.

According to the 2001 White Paper (3), there are approximately
210,000 people with severe learning disabilities in England, as well as
1.2 million people with mild to moderate disability (4), amounting to a
prevalence of about 2% of the general population. However, as noted by
Whitaker and Porter (5), the vast majority of this population is unknown.
Nationally, Whitaker and Porter (5) calculate that there are over one
million people with a learning disability whom learning disability
services are not aware of. More recently, Whitaker calculated that 88% of
the people who are supposed to be provided with a service are not known
about (6). These calculations are based on estimates; no complete
register exists of people with learning disability.

Our own ongoing research, carried out with the assistance of Essex
County Council Learning Services and supported by Colchester Primary Care
Trust, aims to reach the hidden population of people with learning
disabilities (7). To date, we have contacted a group of young adults who
had been given a Statement of Special Education Needs (SEN) for non-
specific learning difficulty, or autism whilst in school. Of the 102
respondents, 37% indicated they had not been helped by any organisation,
including Colchester’s Health or Social Services learning disability
teams, since finishing school. Although this was a small-scale study, we
believe that it demonstrates how rapidly people who had previously been in
receipt of a range of specialist support services can become lost to view.
This group represents but one small section of the hidden population.

Cooper et al (1) are correct in stating that the population of people
with intellectual disabilities require specifically targeted public health
interventions. However, any such interventions will only benefit a small
minority until steps are taken to address the problem of the hidden
population of people with intellectual disabilities.

Fernando De Maio, co-ordinator, Essex Research and Development
Support Group.
Department of Health and Human Sciences, University of Essex
(fdemai@essex.ac.uk)

Dan O’Neill, teaching fellow.
Department of Health and Human Sciences, University of Essex
(doneila@essex.ac.uk)

References

1. Cooper SA, Melville C, Morrison J. People with intellectual
disabilities: Their health needs differ and need to be recognized and met.
British Medical Journal 2004;329:414-415.

2. Cornwell KL. People with intellectual disabilities: People
registered disabled with learning difficulties tend to fall through the
net. British Medical Journal 2004;329(7471):917.

3. Department of Health. Valuing People: A New Strategy for Learning
Disability for the 21st Century. London: Department of Health, 2001.

4. Martin G. 'Valuing People' - a new strategy for learning
disability for the 21st century: how may it impinge on primary care?
British Journal of General Practice 2001;51(471).

5. Whitaker S, Porter J. Letter to the editor: Valuing People: a New
Strategy for Learning Disability for the 21st Century. British Journal of
Learning Disabilities 2002;30:133.

6. Whitaker S. Hidden learning disability. British Journal of
Learning Disabilities 2004;32(3):139-143.

7. De Maio FG, O'Neill D. The hidden population of people with
learning disability: an example of integration or a major unmet need?
Essex Primary Care Research Network 1st Annual Conference. Chelmsford,
England, 2004.

Competing interests:
None declared

Competing interests: No competing interests

26 October 2004
Fernando De Maio
co-ordinator, Essex Research and Development Support Group
Dan O’Neill, teaching fellow. Department of Health & Human Sciences, University of Essex. Wivenhoe Park, Colchester. C04 3SQ
Dept. of Health & Human Sciences, University of Essex. Wivenhoe Park, Colchester. C04 3SQ