Respite for children
There are few more arduous tasks than caring for a child with a life-threatening condition. Parents talk of constant exhaustion, isolation, marital tensions, financial worries, and difficulties in meeting the needs of their other children. They complain that services are often scarce or inaccessible, that they sometimes have to badger officialdom for supports so their child can have a life mirroring that of healthy young people. Parenting can be a tough brief anyway but the parents of the 1,500 children with life-limiting conditions deserve the nation’s special succour.
They may take some consolation following the publication of Respite Services for Children with Life-Limiting Conditions and their Families in Ireland, A Needs Assessment which has been launched by the Irish Hospice Foundation and Lauralynn Children’s Hospice. It seeks to map the extent of the need for respite care, and makes pertinent recommendations, among them that the National Development Committee for Children’s Palliative Care should oversee the development of national standards for both in-home and out-of-home children’s respite care.
A core proposal is that regional groups should be established to act on the report’s findings. It is inequitable that access to respite services often depends on a child’s particular diagnosis and home location. Services, the report says, need to be dynamic and flexible to meet the needs of 816 children – a number expected to rise to 925 by 2021. Based on a 70:30 split between in-the-home and out-of-home respite care, the cost will be more than €8 million annually by 2021.
Meanwhile, the work of the Jack and Jill Foundation, the Children’s Hospice, the Brothers of Charity, and Cope, among others, will continue to buttress the heroic undertaking of parents who are determined to raise their children at home, whatever the difficulty. The least they deserve is guaranteed, consistent and high-quality respite care. This report may help bring that day nearer.