Pauline Tully (Cavan-Monaghan, Sinn Fein) | Oireachtas source

I thank the Regional Group for bringing forward the motion and affording us the opportunity to address the House on the need to review and reform support for carers. Family carers have long been held up as a crucial pillar of parent support in Ireland. Various departmental strategies and documents refer to the important role that family carers play in our society, viewing them as the backbone of care provision in Ireland.

The often unquantifiable costs experienced by parents caring for a child with a profound intellectual disability include the impact on physical and mental health, the loss of income caused by the inability to work outside the home because of caring duties, the potential for a life of debt or poverty, social isolation, strain on relationships and the constant stress of always having to fight because of the inadequacies in the provision of services and supports to which the child is entitled. While many family carers reflected how they find caring for loved ones extremely rewarding and while their immense contribution is estimated to save the State approximately €20 billion per annum, research by Family Carers Ireland found that family carers are lonelier, more isolated and in poorer health than the average person in Ireland.

Time and again, family carers have not received the care and support they need and deserve. This is also reflected in the research findings which stress that the carer’s allowance scheme is inadequate. It is gender biased, restrictive, undervalues care and is no longer fit for purpose. The scheme was first introduced in 1990. It was not designed to meet the circumstances of lifetime carers who care for prolonged periods and need access to an integrated income support system that encourages rather than restricts participation in work and education. I welcome the fact an interdepartmental working group has been established to look at this issue. Is there a timescale for this work? It could go on forever, but we need it to be finalised within as short period as possible.

I question the figure of €600 million per year. Is it possible to find out how that was calculated and to share that information with the Opposition and Family Carers Ireland? Family Carers Ireland did some calculations on its own basis and also requested the Parliamentary Budget Office to do that. When we compared the results, they were very similar, coming in at just under €400 million, so I wonder where the additional cost of €200 million has come from.

Where carers are receiving a carer’s allowance payment, in many cases it falls well below the established minimum essential standard of living. In budget 2024, we called for the carer’s allowance and carer’s benefit to be increased by €15 per week as part of a vision to incrementally bring them in line with the minimum essential standard of living. We also called for an increase to the income threshold for carer’s allowance and for this to take effect from January 2024, not six months later, in June, as the Government has done. It would have resulted in higher payments for current recipients on reduced payments and more carers would have qualified for the allowance from the start of the year.

With regard to supports for carers, on Monday I engaged with a person who has locked-in syndrome and who can only move her eyes. Her mother is not getting the support she requires. She has a care package approved but the carers do not turn up half the time and it is very stressful for the family. It needs to be addressed.

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