Sir, – The recent series of articles on the experiences of family carers of persons with disabilities has shone a light on tired, fragmented and frustrated families (November 19th, 25th).
As a society, the question we must ask is why the discussion is framed as that of persons with disabilities as a burden on burnt-out families.
The stories that were portrayed last week are not new ones, and we must ask ourselves why families must bare themselves open, highlighting the “deficits” of their son or daughter in a plea for adequate service provision. We also need to ask ourselves why the discussion is not about the rights of persons with disabilities to a self-determined life in their community with the support that they need.
Through the research of Inclusion Ireland and others, we have found that for persons with multiple and complex support needs, there is a lack of whole-of-life planning and family-centred supports. The research demonstrates that supports and services must be personalised, and that a “one size fits all” approach does not work and leaves some families without the support they require.
Families are fearful of what will happen after they die and nobody should have that fear. The best way to support the families is to support all the individuals within those families. All international evidence shows that persons with complex needs can and do live good lives in the community.
Persons with disabilities are entitled to high expectations for their own lives and must be supported to pursue those high standards. – Yours, etc,
SARAH LENNON,
Equality & Human Rights
Officer,
Inclusion Ireland,
The Steelworks,
Foley Street, Dublin 1.