Many families of children with life-limiting conditions spend about a third of their post-tax income on the additional costs of caring for their child. Prof Charles Normand, who is an economist and professor of health policy and management at Trinity College Dublin and also senior investigator at the All Ireland Institute of Hospice and Palliative Care said, “Even with the best efforts of voluntary and statutory supports, the economic burden on families is huge.”
A lot of the time one parent is put in a position where they have to reduce or give up their work when there is a disabled child in the family. The families’ budget is further thrown off by the fact that most families have other children at home and may have to spend money to pay for extra childcare because of the disruption of normal family life and the need for the parents to be at the hospital supporting the sick child.
Research has proven an interesting paradox, namely that the cost to families tends to go up when their child is hospitalised. Normand explains that, “this is due to the family upheaval being greater when the child is out of the home. This is another economic argument against unnecessary hospitalisation of these children that can happen due to the lack of lower cost, in-home support.”
Many families have expressed their preference for the home nursing model. “There is also a clear desire for more positive action, such as physiotherapy and speech therapy services, in an attempt to help the child to gain or regain, some form of independence”, said Normand. He continued to explain that the government is failing to protect these families from a heavy financial hit, he said “It does put into stark relief the fairly small numbers of people who have a very heavy burden, both emotionally and financially, as a result of just the bad luck of having a child with a disability.” To read the full article, click here.