by Stephen Kealy
In the past in Ireland, it was not unusual that when a husband died their widow did not always go to the graveyard for the burial. Children, depending on their age, were also often prevented from attending their parent’s funeral. In both situations, well intentioned relatives and friends wanted to minimise their emotional fallout, not realising that active engagement with the grieving was an important part of the process of dealing with loss. This issue of Frontline has the theme of grief and loss in the lives of people with an intellectual disability.
Relationship is an essential and integral part of the lives of people with an intellectual disability; yet so often insufficient recognition is given to their feelings and emotions when a parent, brother, sister, relative or friend dies. Is insufficient attention given to understanding what loss means for the person with an intellectual disability? The fact that some people with an intellectual disability may be unable to put words on their feelings or emotions does not mean that grief or loss is any less, or that it is absent.
A sense of loss is not confined to death. It can also arise from a ‘sudden move’ from one living environment to another—an environment where there were many attachments and relationships. There are strong research studies, recent and current, that suggest that one’s quality of life in moving, for example, from an institutional setting to the community is more meaningful and achieves better outcomes when attention is paid to the personal characteristics of people—their emotional well-being and level of ability. Even today, is it possible that in the drive to provide better living opportunities, insufficient attention is paid to understanding loss of relationship, attachment and the need to actively support people with such a major transition in their lives?
Bob McCormack’s article provides an timely look at the impact HIQA has on service delivery. What is important in any inspection regime is that what is written on the tin does, in fact, take place in practice. An objective of all service providers is to make the lives of people with an intellectual disability better—to foster independent living skills in an environment that includes risk-taking, but with safety. There is some suggestion, anecdotally, that the measures applied by HIQA do not sufficiently address outcomes for the person, but that they are more focused on the process. Striking the right balance between processes and practices will have positive outcomes. Failure to achieve this balance will mean only that all the correct boxes have been ticked—but that positive outcomes will not have significantly changed for individuals with intellectual disability in residential settings.
The spring issue of Frontline, featuring assistive technology, was well received by many readers—identifying how technology, when applied correctly, can be life changing. Assistive technology does need to have a higher profile, for families and for anybody who has daily contact with a person with an intellectual disability.
The Special Olympics was a real success in Limerick–providing many opportunities for people to showcase their talents and achievements, demonstrating once again people with an intellectual difficulty, with encouragement and support, can achieve in an environment where nothing is seen as impossible.
The next issue of Frontline (to feature health and wellbeing) will be in the current format. We plan that the winter/December issue will be both in ‘hard’ and electronic format. Our editorial board is aware that we must use several forms of electronic connectivity to ensure that Frontline remains topical and relevant to intellectual disabilities in Ireland.