In 2005 there were approximately 5000 people in Ireland with a severe and profound degree of intellectual disability (Barron and Mulvany 2005). The terms ‘severe and profound’ have been used over a long period of time and are difficult to define, owing to their varying connotations; for the most part, the terms refer to a person who requires maximum assistance in all aspects of everyday life, with 24-hour care and supervision. The person with severe and profound intellectual disability may have difficulties in eating and drinking, continence and mobility, additional physical and sensory impairments, usually with communication inability (Gates 2003). This article briefly examines some aspects of communication, challenging behaviour, depression, bullying, data recording issues, and staff morale that relate to people with severe and profound intellectual disability, providing a constructive outlook to the concerns raised.
With little consideration previously given to people with severe and profound intellectual disability as people responsible for their own lives, recent disability thinking has begun to examine the situation of the individual lives of those with this degree of disability. There is a generalised assumption that people with severe and profound intellectual disability cannot know or understand what they want in life. A typical scenario is that verbal communication is rewarded with attention from non-disabled people, while non-verbal communicative behaviour is ignored—thus, critical sources of information may be missed. In many instances, the communicative content of challenging behaviour is responded to by the use of behaviour modification strategies.
A study by Olney (2001) on communication approaches for adults with severe and profound intellectual disabilities proposes that embedded in each communicative act is a drive towards self-determination by that person. However, in order for self-determination to be actualised for a person with severe and profound intellectual disability, communication partners, parents, carers and professionals must learn to apprehend and respond appropriately to the messages—messages which may come in many different shapes and forms, in contrast to the spoken word (Olney 2001). A constructive outlook is for partners, parents, carers and professionals to adopt and feel their way in using and understanding the many irregular non-verbal ways of communication.
While there is a limited understanding of the origins of challenging behaviour, the literature discloses that the more serious the disability the higher the prevalence of challenging behaviour. In trying to understand challenging behaviour in people with severe and profound intellectual disability, a study by Janssen, Schuengel, and Stolk (2002) found that a stress-attachment model shows promise as an explanatory framework for challenging behaviour. The study found evidence that people with intellectual disability are more vulnerable to stress and use less effective coping strategies, and that they are at risk of developing insecure and disorganised attachments. Accordingly, people with severe and profound intellectual disability may develop behaviour problems and this understanding for the need and application of effective coping strategies may be useful for the prevention and treatment of behavioural problems.
There has been considerable concern in the literature that people with severe and profound intellectual disability may suffer from unrecognised depression, with the result that the illness remains untreated. Depression is said to be under-recognised in people with severe and profound intellectual disability because of difficulties in diagnosis attributable to the inability of such persons to describe their mood. Conversely, a study on the assessment by nurses of depression in adults with severe and profound intellectual disability found that specific behavioural criteria tests were reliable in the manner in which they assessed residents in their care (Evans et al. 1999). An appropriate test may provide a more constructive approach to supporting a person with severe and profound intellectual disability who sufferers from depression.
Bullying is not something that comes to mind as a concern for people with severe and profound intellectual disability. However, in the UK the extent to which adults with intellectual disability were bullied or harassed by neighbours was documented in the 1980s, as part of the move to community care and such cases have also been prominent in Ireland. The UK study showed that victimisation significantly lowered people’s quality of life, but not enough for them to seek to return to the institution from which they had come; they ‘put up’ with the bullying. A study in Nottingham found sufficient evidence of bullying behaviour involving adults with severe and profound intellectual disability to warrant the adoption of specific anti-bullying strategies not usually incorporated into services for adults with severe and profound intellectual disability (Sheard et al. 2001). Bullying is a part of human society and people with intellectual disability will feel, learn and have to cope with this common social predicament, but they should not have to do this without some specific support and assistance.
Data recording issues
The National Intellectual Disability Database in Ireland classifies people into rather homogeneous diagnostic groupings, placing 9536 people with a moderate intellectual disability together with the 5000 people with severe and profound intellectual disability. Thus part of the intellectual disability services in Ireland are planned on the basis of a group of 14,536, who receive services under the heading of moderate, and severe and profound intellectual disability (Barron and Mulvany 2005).
It is not unexpected that difficulties in finding services for individuals with severe and profound intellectual disability in Ireland have been to the forefront of many national newspapers, when services are provided on the basis of the needs of a wider, relatively undefined group of people. A constructive way forward is for the Irish database to define and detail each group separately, in order to aid in effective planning of services for each specific group and going a little bit closer to meeting individual needs.
People who work with individuals with severe and profound intellectual disability have a major impact on their quality of life. With the current trends and development of community-home settings for people with intellectual disability, a study in Australia found staff working in this setting with individuals with severe and profound intellectual disability held favourable views of their job, the nature of the work and the supportive relationships with co-workers.
The study found a need for increased participation in decision-making and for stronger, more supportive bridges to be built between administrative and supervisory staff, and the direct-service staff in the community. Staff who feel good about their jobs, their colleagues at work, and the organisation they work for, are more likely to contribute to endeavours that promote quality outcomes to the individuals they serve (Ford and Honnor 2000).
The needs of people with severe and profound intellectual disability present parents, carers and professionals with numerous challenges for which solutions are indeed difficult to find. However, this should not mean that their needs are overlooked. Many studies about people with severe and profound intellectual disability suggest possible solutions, even though they may not be obvious to see or easy to use. These solutionscan be made to work by effective proactive endeavours with people with severe and profound intellectual disability, meeting their needs to the high standard required for care provision both at home and in healthcare settings.