In 2003 there were approximately 5000 people in Ireland with a severe and profound degree of intellectual disability (ID) (Barron and Mulvany 2003). The terms severe and profound have been used for a long time and are difficult to define, owing to their varying connotations. Severe and profound mostly refer to a person who requires maximum assistance in all aspects of everyday life, a 24-hour cycle of care and supervision. The person with severe and profound ID may have difficulties in eating and drinking, continence and mobility, additional physical and sensory impairments and, for the most part, communication inability (Gates 2003). This article is set to explore in brief some aspects that relate to people with severe and profound ID, providing a constructive outlook to the concerns raised.
With little consideration of people with severe and profound ID as people responsible for their own lives, recent disability thinking has begun to examine the situation of the individual with severe and profound ID. There is a generalised assumption that people with severe and profound ID cannot know what they want. A typical scenario is that verbal communication may be rewarded with attention from non-disabled people, while other 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 on communication approaches of adults with severe and profound 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 the person with severe and profound ID, communication partners, parents, carers and professionals must learn to apprehend and respond appropriately to the messages (Olney 2001).
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 ID, one study (Janssen et al. 2002) found that a stress-attachment model shows promise as an explanatory framework. The study found evidence that people with ID 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 ID may develop behaviour problems. This understanding 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 ID may be suffering from unrecognised depression, with the result that some individuals continue to suffer from the untreated illness. Depression is said to be under-recognised in persons with severe and profound ID 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 ID found that behavioural criteria tests were reliable in the manner in which they assessed residents in their care (Evans et al. 1999).
Bullying is not something that comes to mind as a concern for people with severe and profound ID. However, in the UK the extent to which adults with ID were bullied or harassed by neighbours was documented in the 1980s, as part of the move to community care. 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. A study in Nottingham found sufficient evidence of bullying behaviour involving adults with severe and profound ID to warrant the adoption of specific anti-bullying strategies (not usually incorporated into services for adults with severe and profound ID) (Sheard et al. 2001).
Historically, institutional care was the primary service for people with severe and profound ID. Findings in the UK on deinstitutionalisation established that community services are more expensive than institutional services in relation to service provision for people with severe and profound ID (Felce et al. 2000). (Is this paragraph relevant here?)
Data recording issues
The National Intellectual Disability Database in Ireland classifies people into rather homogeneous diagnostic groupings–lumping the 9549 people with a moderate ID, alongside the 5000 people with severe and profound ID. Thus part of the ID services in Ireland are planned on the basis of a group of 14,590, who receive services under the heading of moderate, severe and profound ID (Barron and Mulvany 2003). It is not unexpected that difficulties in finding services for people with severe and profound ID in Ireland have been to the forefront of many national newspapers, when services are provided on the basis of the need of a broad, relatively undefined group of people with moderate, severe and profound ID. Services for people with severe and profound ID are required to meet the needs of those individuals as people first and foremost, and not based on larger groupings. The Irish database needs to define and detail each group separately, in order to aid in effective planning of services for each specific group.
People who work with individuals with severe and profound ID have a major impact on their quality of life. With the current trends and development of community-home settings for people with ID, a study in Australia found staff working in this setting with individuals with severe and profound ID held favourable views towards their job, the nature of the work and the supportive relationships with co-workers. The findings found that there is 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. When working with people with severe and profound ID, staff who feel relatively 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 ID present parents, carers and professionals with numerous challenges for which solutions are indeed difficult. However this should not mean that their needs are overlooked. Solutions are available by working proactively with people with severe and profound ID, meeting their needs to the high standard required for care provision both at home and in healthcare settings. (Did I redo this sentence okay??)