The lifelong health & wellbeing of adults with neurodevelopmental disorders associated with intellectual disabilities

There is a growing body of research evidence showing that specific genetic determined neurodevelopmental disorders have distinct and quantifiable physical and psychological consequences. This research is important for people who have an intellectual disability (ID) because these personal attributes are likely to be as important as their social environment in determining their health and well-being. With research providing a more refined conceptualization of the consequences of living with an ID it is becoming increasingly important that this new knowledge - characterising atypical behavioural and cognitive and emotional differences and disturbances - challenges us to think differently about health care and wellbeing. While the recognition of differences has in the past been considered to have been detrimental to the interests of people with an ID, it is the time to begin discussing the possibility that a recognition of difference may be necessary in order to positively improve the health and wellbeing of people with an ID. In some areas this debate has already begun in arenas set apart from the official government policy. While the stated aim of government policy is the social inclusion and mainstream participation of people with ID as full citizens, it is also recognised in residential settings that people with Prader-Willi Syndrome (for instance) because of an abnormal satiety response to food intake leading to severe obesity cannot have unrestricted access to food, or the opportunity procure it. People with Fragile-X syndrome show a marked propensity to social anxiety and if they are to be supported to participate in mainstream society special measures are likely to be required. Similarly evidence is emerging in the case of people with Cornelia de Lange Syndrome that increasing age brings with it a greater risk of incapacitating anxiety. The effects of specific genotypes on developmental phenotypes may be manifest from early child and remain throughout life or may only emerge at specific times in development. Specific, sometimes superficially similar behaviours, are appear early in life in those, for example, with Smith Magenis, Cornelia de Lange and Angleman Syndromes. In contrast, psychotic illness associated with behavioural change develops in the later teens and early twenties of those with a particular genetic sub-type of Prader Willi Syndrome, and improvements in the life-expectancy of people with Down?s syndrome has led to the recognition that there is a marked age-related increase in the prevalence of dementia of the Alzheimer-type later in life.

The different genetic causes of peoples? intellectual disability (ID) can have a profound influence upon their lives, with respect to: i) life span, and vulnerability to particular health conditions and illnesses; ii) the trajectory of their lives with respect to education, employment and retirement, and other opportunities for participating in mainstream society, and iii) what it means to live ?good life? in which a person can flourish.

To date this knowledge has had very little impact on recent developments in health and social care. Rather, the reverse has been the case. Legislation and polices designed to support people with ID have overlooked the diverse and complex nature of living with an ID. Policies of ?normalisation?, and recognition of ability rather than disability, have been pursued in which the interests of people with ID are seen as identical to those of the general population. This is exemplified in the ?People First? movement and the 2001 White Paper Valuing People, both of which promote equality of citizenship. Where there is an explicit acknowledgement that people with disabilities face different problems from the general population, as in the campaigns of Disability Rights Movement, and in the Disability Discrimination Act and the Disability Equality Duty, the interests of people with ID are seen primarily in term of accessibility and thus broadly analogous to those of men and women with sensory and physical impairments. While this focus on ability and accessibility has significantly improved the lives of people with ID, and will continue to do so, there is awareness that improvements in the welfare and wellbeing of men and women with ID have stalled. Our aim is to develop a network that can, in the first place, scope the potential benefits and possible limitation to the provision of health and social care service that are cognisant of, and responsive to, the particular characteristics and behavioural phenotypes associated with the different genotypes causing intellectual disabilities. Our long-term aim, assuming there are potential benefits, is to trial such innovatory services.

To scope the for potential promoting the lifelong health and well-being of people with specific genetic syndromes we propose to gather and consider research evidence, and the practical experience of carers? that recognises the diverse and complex age related needs of people with specific neurodevelopmental disorders.