Nemo iudex in sua causa – no man should be a judge in his own case. Essentially what this means in practice is – ‘how was a person heard?’ This applies to people on either side of the process. Fair procedures demand that a person is heard not only without bias, but also that any decisions taken about a person are not taken without that person having an opportunity to be heard and be assisted to respond. But often people with intellectual disabilities have decisions taken on their behalf without them being heard or given an opportunity of responding. The impact on them is significant—decisions with long-lasting consequences, some with devastating outcomes, others which were unhelpful for living a better and more independent life.
Over the years, many services for people with intellectual disabilities had a focus of protecting the person—providing places of safety, some of which also withheld any opportunity for engaging risk, making mistakes or putting into practice hard-won independence skills. Is this bias or non-consultative decision making? It is, of course, a combination of both supported by the restrictive unchallenged vision of many of those paid to provide care and leadership to ensure a better life for people with intellectual disabilities.
This issue of Frontline has the theme of advocacy, never more important than it is now when opportunities for people with intellectual opportunities are being curtailed within the constraints of the national budget. Thankfully, the National Advocacy Service is providing a voice to many people who otherwise would not be heard or listened to. Unfortunately, there are still many people directly involved in statutory and non-statutory service provision who do not recognise the need to actively engage and listen. Decisions are made daily on behalf of people with intellectual disabilities, but there continues to be considerable variability among service providers, and indeed some parents and guardians, about the need for the person to be aware of the potential of that decision—to check, as far as possible, whether they know the main criteria / facts / materials influencing the decision to be made, and whether they understand how the decision might affect them.
There is a huge amount of case law concerning the protection of fair procedures for able-bodied people. Thankfully, advocacy for people with intellectual disabilities is likely to generate ‘case law’ that will ensure the absence of bias, so that the implementation of fair procedures for decision making will become the gold standard.
This issue also has articles on health and wellbeing, a continuing need for all, but particularly for those who may not be in a position to self-initiate their own health promotion. The lifestyles of some people with intellectual disabilities are often compromised by few opportunities for exercise and poor eating habits, coupled with a diet that may be too high in sugar and carbohydrates.
Siobhán Barron’s article on e-learning opens up the prospect of learning opportunities that will readily click with an electronic generation now so familiar with the language and use of media, apps, and instant information.
Senator Mary Moran highlights the age-old struggle for parents of trying to get people responsible for services to engage with them in a flexible and approachable way. In 1849, Jean Baptiste Alphonse Karr expressed this struggle well in his much quoted expression ‘the more it changes, the more it stays the same thing.’