http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_117961.pdfTo be completely clear about how serious genetic damage can be. I wonder if some of the behaviours reported on this site, for example about parents forcing their children to marry someone, may actually be symptomatic of genetic damage over several generations.
Following the publication of Valuing People Now in 2009 I was asked to undertake a review of services for adults with profound intellectual and multiple disabilities and to make recommendations...
People with profound intellectual and multiple disabilities1 are among the most disabled individuals in our community. They have a profound intellectual disability, which means that their intelligence quotient is estimated to be under 20 and therefore that they have severely limited understanding2.
In addition, they have multiple disabilities, which may include impairments of vision, hearing and movement as well as other problems like epilepsy and autism.
Most people in this group are unable to walk unaided and many people have complex health needs requiring extensive help.
People with profound intellectual and multiple disabilities have great difficulty communicating; they typically have very limited understanding and express themselves through non-verbal means, or at most through using a few words or symbols. They often
show limited evidence of intention. Some people have, in addition, problems of challenging behaviour such as self-injury.
2. This means that people with profound intellectual and multiple disabilities need high levels of support from others with most aspects of daily living: help to eat, to wash, to dress, to use the toilet, to move about and to participate in any aspect of everyday life 3.
3. Despite such serious impairments, people with profound intellectual and multiple disabilities can form relationships, make choices and enjoy activities. The people who love and care for them can often understand their personality, their mood and their preferences.
Numbers
4. Recent research4 estimates that there are just over 16,000 adults with profound intellectual and multiple disabilities in England now. That this is a relatively small, easily identifiable group with undeniable needs for support should make improving services easier.
5. The number of adults with profound intellectual and multiple disabilities is estimated to increase by on average 1.8% each year to 2026, when the total number would be just over 22,000 people. In an ‘average’ area in England with a population of 250,000 the researchers suggest this would mean that the number of adults with profound intellectual and multiple disabilities will rise from 78 in 2009 to 105 in 2026, and that the number of young people with profound intellectual and multiple disabilities becoming adults
in any given year will rise from 3 in 2009 to 5 in 2026. These rates will be higher in communities that have a younger demographic
Adults with profound intellectual and multiple disabilities:
• have a profound learning disability and
• have more than one disability and
• have great difficulty communicating and
• need high levels of support with most aspects of daily life and may have additional sensory or physical disabilities, complex health needs or mental health difficulties and may have behaviours that challenge profile or contain a greater proportion of citizens from Pakistani and Bangladeshi communities (where the incidence of learning disability is higher). The projected rates will not be influenced by level of socio-economic deprivation.
1 This phrase is the term used internationally. It refers to the same people often identified in the UK as having ‘profound and multiple learning disabilities’.
2 World Health Organisation. (1992) ICD-10 Classification of Mental and Behavioural Disorders: Clinical descriptions and diagnostic guidelines. Geneva: World Health Organisation.
3 PMLD Network. Profound and Multiple Learning Disabilities. London: Mencap.
4 Emerson, E. (2009) Estimating future numbers of adults with profound multiple learning disabilities in England. Lancaster: Centre for Disability Research.
Topic: Is having casual sex or marrying your cousins harmful?