People with intellectual disability in limbo as families shun talks on future
Families are 'not having the conversation' about who will take on the care of a relative with an intellectual disability when a parent is no longer able to care for them.
A Symposium on Caregiving Capacity and Contemporary Irish Family Life has heard that "the majority" of parents are reluctant to pass the burden of care on to their other children.
The discussion, held as part of Trinity Week at Trinity College Dublin (TCD), heard that for most families, the decision about the future care of the person with an intellectual disability did not come about until the family had reached crisis point.
For many, this resulted in acrimonious relations with other family members.
Dr Damien Brennan of TCD's School of Nursing told delegates that families are not sitting down to do the future care planning and this leads to "family rows and tense situations".
"The majority of families say they will not pass on care-giving to the rest of the family members which means the family may require residential services in future," he said.
Professor Mary McCarron, Dean of Trinity's Faculty of Health Sciences, said this is the first time in history that we have an older population living with an intellectual disability and that this is to be celebrated.
"However, we must ensure that the necessary supports are made available to carers," she said.
Families are the main care providers of care-giving support for people with intellectual disabilities but because of the changing structure of families, family care is more difficult and complex, delegates heard.
Michael Gannon, of Newbridge, Co Kildare, told the symposium of his experience of living with an intellectual disability and of living with an extended family in adulthood.
He requires support in cooking, paying bills, visits to the doctor and going on holidays but that some of his friends would need additional help.
Meanwhile, Mark O'Connor of Inclusion Ireland said carers need more of the basics - such as changing facilities for adults in public places, greater levels of respite care and greater flexibility in the hours they are allowed to work outside the home.