Responding to the findings in the survey, Cliona’s Foundation CEO Brendan Ring said:
“In prioritising the care of their child, families are having to make terribly difficult financial decisions- and in the vast majority of cases those decisions leave the family considerably poorer off. The additional stress that this brings is extremely damaging to the already fragile emotional and psychological condition of all those involved.
“The survey results confirm what we have known for a long time- that State support to families caring for children with life limiting conditions, while helpful, fall well short of what’s required to give parents some peace of mind at the most difficult of times.”
The survey results come as Cliona’s Foundation makes their first pre-budget submission to the Government.
Since its establishment in 2008, Cliona’s has relied entirely on income raised through a range of activities including fundraising, corporate donations, philanthropy, private donations and partnerships with other charities. However, recent events, including the Covid19 crisis (which had a severe impact on fundraising income) and the current cost-of-living crisis (which is putting significant additional financial pressure on parents with seriously sick children), have highlighted the limitations of this funding model.