Much research has been carried out into what constitutes quality of life for people with intellectual disabilities. The results of this research suggest that some issues in particular are determinants of a high quality of life for people with intellectual disability. These are:
- the importance of good relationships with other people, particularly family and staff,
- the possibility of genuinely living, working and enjoying leisure time in the community,
- the chance to make effective choices in life that reflect the person’s control over their lives,
- the opportunity to do something that is recognised as making a positive contribution to the local community,
- the need to be treated at all times with respect. (Moss 1999, O’Brien 1987)
These are accomplishments that serve to provide a measure by which judgements can be made about a person’s quality of life. They may also act as signs that point the direction in which a person with an intellectual disability may wish his or her life to go.
Quality of Life for non-disabled people and for people with intellectual disability
Recent research carried out in Birmingham (Hensel, Rose et al.) compared the quality of life of 31 people with intellectual disability who were living in supported housing in the community, with 31 matched non-disabled people.
The authors found that in general people with intellectual disability,
- valued their achievements rather more than the people who were not disabled,.
- had a desire to bring about change in their personal circumstances and in effect to take some greater control of their lives,
- were less satisfied than the non-disabled population regarding their state of health,
- were not happy with their opportunities to spend meaningful time in the community,
- were more satisfied than the non disabled counterparts with their material well-being.
The researchers also found that in the area of community participation, objective measures of quality of life showed that people with intellectual disability perceived their quality of life as being higher than it actually was. Although both groups lived in ordinary settings, it seems that the amount of control that people with intellectual disabilities could exercise over their lives was quite limited. This was a source of dissatisfaction for them. Furthermore it appears from the research that people with disabilities do not get a chance to engage meaningfully with the people and places in which they live in the same way that non-disabled people do.
Challenges for Service Providers
All this suggests that there are several challenges that service providers need to consider:
- to enable people with disabilities to take greater control of their lives—this is an important issue in that if it can be brought about, it will affect all other aspects of their quality of life,
- to facilitate people with disabilities to achieve real integration in the places and communities in which they live,
- to value people with disabilities for who they are and what they have to contribute to society,
- to find out why there is such a dissatisfaction with their health status.
On a positive note, the researchers found that, excepting health, both disabled and non-disabled people were very satisfied with their quality of life. In fact those with disabilities had a slightly higher satisfaction rate (78%) than the non-disabled population (74%), which perhaps suggests that service providers are in fact doing many things right.
Hensel et al.’s study offered some valuable insights into how satisfied people with disabilities are with the services that are provided in community. The people with intellectual disabilities who took part in the study were people who could clearly assess their lives, their happiness with those lives and articulate their views. But what of those people with more severe disabilities who are not in a position to speak of how they feel? They often live in larger campus-based accommodation and have much less access to genuine community experience. Are they satisfied with their lives? What are the issues that concern them? As yet little is known that can answer such questions; however researchers from Holland and Belgium are attempting to find out ways to define quality of life for this group of people and to develop a way of assessing it (Petry, Maes and Vlaskamp). Their project started in 2000 and will last for four years. As yet they have published no results but hopefully interesting information will soon come to light. Watch this space!