Kathleen Funchion (Carlow-Kilkenny, Sinn Fein) | Oireachtas source

At the core of this debate are families. Family carers provide around €10 billion in unpaid care each year. They face daily battles just to get what they are entitled to. They face inadequate respite services, inadequate assessment services and difficulty in obtaining allowances and benefits, and they must constantly jump through hoops for the State to get every little thing.

Families of children with disabilities rely heavily on organisations such as the Jack and Jill Children's Foundation because they cannot rely on the State. The foundation is invaluable to the families it helps because it places the family at the centre and builds care packages around each family's dynamic. The foundation advocates on behalf of parents and families on issues such as the in loco parentisclause in home-care nursing contracts. This clause needs to be abolished immediately. The HSE must consider seriously the impact it has on parental well-being and on combating isolation, and it must give parents a break. It impacts unfairly on siblings, who can feel isolated and overwhelmed by having a brother or sister who needs so much of their parents' time. It makes parents virtual prisoners in their own home. This and other aspects of the motion are desperately needed. We need to see meaningful change and put legislation in place that helps instead of hinders.

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