New research conducted by the Cliona Foundation has revealed that in more than 70% of families who received assistance from the Foundation, the main breadwinner has had to give up work to look after their child.
The research also showed that in 71% of families, the partner of the main earner in the family had to reduce their work hours in order to assist with care of the child.
An overwhelming majority of those families surveyed (99% ) also said they considered State support to families caring for children with life threatening conditions to be insufficient.
“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,” responding to the findings in the survey, Cliona’s Foundation CEO Brendan Ring, said.
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.
“We have seen demand for our services grow year on year since the establishment of the Foundation in 2008. During that time we have been entirely reliant on corporate donations and contributions from the public to fund our services, but if we are to be able to respond to the needs of a growing number of families who are seeking our support, we need to move to a more sustainable model of funding involving the Department of Health”, Mr Ring added.
Cliona’s Foundation is asking the government for €250,000 in Budget 2024. The funding model proposed by the Foundation would see close collaboration with either the Department of Health, Children, Equality, Disability, Integration and Youth or Department of Social Protection. A submission has gone to all three departments with a request that the officials meet to discuss which department this important issue lies. This would ensure the core needs of families supporting children with life limiting conditions are met, and for the expansion of the Foundation’s reach to assist the many other families in need of support.
Cliona’s Foundation distributed €308,000 in funding to 135 struggling families up to end of June 2023 surpassing another record amount during the same period last year of €172,500 to 69 families. Since 2008 Cliona’s have distributed funding to over 1200 families across the island of Ireland.
