Ms Zoe Hughes:

I wish members of the committee a good morning. I am pleased to be here to represent Care Alliance Ireland and make this statement and I thank the committee for the invitation. For those who may be unaware of the work of Care Alliance Ireland, we are an umbrella organisation and our 95 member organisations are drawn from across the caring, disability, addiction, mental health and chronic illness sectors. We provide research, policy and governance supports to our membership as well as providing online supports to a growing number of family carers across the country.

As an organisation, our vision is that the role of family carers is fully recognised and valued by society in Ireland. While our focus is on the family members who support and care for their friends and loved ones, we understand that in improving access to appropriate services and supports for disabled people, the lives of family carers and the family system as a whole is improved. I am not here to speak on behalf of disabled people. Caring and disability can be seen as two sides of the same coin and are closely related, but each have their own particular challenges. The challenges faced by disabled people are not the same as those faced by family carers, although they often overlap.

In simple number terms, we have seen research published recently which highlights the significant economic impact that disability and caring has on a family. From the Department of Social Protection’s own research carried out by Indecon in 2021, we see this figure estimated as being up to just under €12,000 per year in additional costs, as was already referenced. Similar figures come from research undertaken and published by Family Carers Ireland in 2022. In this brief opening statement, I have two points I would like to make in answer to some of the questions and proposed topics posed by the committee in its recent communications to us. I am of course happy to discuss other matters as they come up during the morning.

We were very interested to see a proposal for moving away from an incapacity-to-work approach to supports to incentivise work. For the purposes of social protection, family carer and disability payments are considered together, which creates an interesting case for discussion.

As the committee will know, carers allowance and carers benefit are payments made to family carers providing significant levels of care, which can limit their ability to work in the traditional paid workforce. The Department of Social Protection positions these payments as an anti-poverty measure rather than as a payment for work undertaken. However, family carers are the only group in receipt of a social protection payment who are required to work significant hours each week to receive a payment and yet are not acknowledged as working. If a household has another source of income, due to the means test, they may not even be eligible for carers allowance, leaving some family carers increasingly economically dependent on their partners or other members of their family. This is the case when many family carers report that they are providing significant levels of care 24 hours a day, seven days a week. Incentivising work is not an issue here. However, recognising the economic value of that work, which saves the Government up to €20 billion per year, is. Many family carers are frustrated that they are seen as not working because they are in receipt of carers allowance or benefit.

We believe that the current system of means testing carers allowance, which has not changed significantly in its organisation or execution in many decades, is not fit for purpose. We welcomed the increase in income disregards for the means test in budget 2023, for which we and others have been advocating for a number of years. However, the time has come for a radical rethink of how family carers, many of whom who have given up paid employment entirely, can be protected from poverty and acknowledged as making a significant contribution to society. The concept of a universal basic income or participation income for family carers must be seriously considered. We have seen how this can be managed for artists, which is to be welcomed. I am not here to pit groups against each other, but simply to highlight how sectors can learn from each other to create appropriate responses.

There are many other points to make which I do not have time to fully discuss in this opening statement. Key among these is the intersectional nature of caring, in particular as it relates to disability. There are many family carers who are disabled, who have long-term mental and physical health conditions, and who are doubly impacted by the siloing of care and disability.

I acknowledge that many family carers are no doubt listening to this conversation live, or perhaps finally getting around to doing so after a long day providing care for their loved ones. It is important that their contribution to ensuring that the mental, physical and emotional health needs of their family members is acknowledged and valued, over and above platitudes and written statements. Many family carers are struggling economically at present. We acknowledge the efforts of this committee to find new ways of supporting them.