When a child is born or diagnosed with a life-limiting illness or sustains a serious injury, parents are thrust into an enormously stressful and threatening world and yet widespread evidence shows how important their role is in their child’s recovery as well as limiting the impact for siblings or other family members. The report sets out three key recommendations:
- Government to establish a ‘looking after a child with life-limiting illness’ grant.
- The establishment of a national database on families caring for children with a life-limiting condition.
- Cliona’s Foundation to tailor its support services to meet the unique needs of the families including partnerships with service companies to provide a range of assistance to the families.
Speaking about this report, Terry Ring, co-founder of Cliona’s Foundation says:
“Our report highlights the scale of the problem and the need for State support for these vulnerable families through the creation of a special grant system to help families with exceptional non-medical expenses. The report underlines how state support is often inadequate, slow to respond, poorly targeted on the needs of these families and can be difficult to access. Non-medical expenses can be astronomical, as we know from first-hand experience, which is why we set up Cliona’s Foundation, to help provide grants to alleviate some of this considerable financial stress. Because when you’re already in a deep and dark place with a sick child, the last thing you want to worry about is money.”
A copy of the report can be received by emailing [email protected]