Bríd Smith (Dublin South Central, People Before Profit Alliance) | Oireachtas source

I thank Sinn Féin for bringing this motion to us. The figures in the motion are stark. Three quarters of families get no respite care at all. In 2022 fewer than 5,200 received a respite service, despite the fact that there are 20,000 people or more with disabilities, including physical and sensory disabilities, or autism who need respite care. Fewer people received respite services last year, in 2022, than they did in 2018. We have to acknowledge, and it would be a really good start for the Government to acknowledge, that respite care is on its knees. Having been a carer myself, I know that the grant that is handed out to people is welcomed but, particularly nowadays, in a cost-of-living crisis, the grant for many families is used to cover additional costs associated with disability, that is, fuel, transport, medical and other costs that are particularly acute during a cost-of-living crisis.

The recent closures of services alluded to in the motion are shocking, and many Deputies have talked about local services that were recently closed. In my constituency, in Cherry Orchard, where there is a community-based hospital, respite wards were chipped away at over many years and, despite very vocal, loud, cross-party, local campaigns to try to ring-fence and save those services, they have been, as I said, chipped away at and are very limited now in what people can receive. Yet that is a very large community in west Dublin that covers areas like where Deputy Gino Kenny is a Deputy, where I am a Deputy and beyond in Tallaght etc., and we are looking at a real crisis in respite care.

There was a move last year - or maybe it was the year before; it was mentioned earlier - to close Cuisle, in Roscommon. Unfortunately, it did close, and the Minister of State was possibly there talking to the people affected outside the gate. The users and their families came here and told us in graphic detail what that hotel meant to them, particularly the users, the people with disabilities and challenges who looked forward so much to having the option of a holiday in Cuisle, Roscommon, every year. It is not just any old hotel that can cater for the complex needs of people with mobility issues, feeding issues and medical issues, but Cuisle in Roscommon did that. Surely now it is time to stop closing any more respite services and to give those who care in our society a break. They have given the State so much. We need to increase the respite grant and we need to ensure that no more services are closed.

I know that others have referred to it but I will talk about Mulcahy House, in Gorey, briefly. We are told that staff challenges have closed it for 12 weeks. That is a three-month period over the summer, and parents, caregivers and people from all over the community marched down Gorey's Main Street peacefully with one aim, namely, to call for the reopening of the services. They consider it a lifeline. I quote Janet O'Hagan, whose 21-year-old son requires full-time care:

I'm rearing my son myself. I don't have any help so when this respite shut down, it meant there's no break for me. My son is ... 6 foot 6, he has moderate to severe autism [and] he has a lot going on. The respite was my only break. I basically just got a letter to say we're closing it down [with] no consideration for the domino effect that would have on me and my son.

Ms O'Hagan has no respite care for the first time in 20 years.

This kind of message is repeated time and again by various service users. It is heartbreaking to read through such accounts.

Ms O'Hagan also states:

This is my life. There's no one knocking on my door to make sure I am ok. It is very isolating ...

She adds:

[A]lthough I adore my son, he also needs the help. He saw it as a holiday and would say Mam I am going on my holiday when he will get the break and the respite centre."

Deputy Gino Kenny has testified to this.

It is time to give carers and those they care for a break and to ensure respite services are ratcheted up and no more services are closed down. How do we do that? The answer is in the thesis Professor Kathleen Lynch submitted to the Joint Committee on Gender Equality recently. She has written a book called Care and Capitalism: Why Affective Equality Matters for Social Justice. What she argues is very interesting because she has studied carefully what is happening not only in respite care services but also in all other care services throughout society. She argues that we have to place care, love and solidarity at the very centre of human life. She states that according primacy to care in life is essential. She quotes the following:

Because we become what we live, the work that we do, and what and who we value while doing it, have a major impact on our character and who we become.

Therefore, care is not removed from social justice. In the context of the crisis we are facing, which relates to staff retention and all the rest of it, I argue that we should start at the root. The root is where pay and conditions are not up to standard for people to sustain themselves in their jobs. I have known Deputy Gino Kenny over a period of 40 years. He loved his job. If people are not paid well enough to do the job they love, however, they cannot continue to do it, particularly in a crisis in which housing costs and rents are going up and up. Just as we have to consider the crisis associated with retention and nurses' pay, we have to consider the housing issue. If there are no homes for the people who do the care work, either on or off site, or if they cannot afford the housing, they will move on to different types of work, not the work they value and love doing or work of the kind that this society needs to repair itself, become more caring and become more involved in ensuring the solidarity we all need. None of us would disagree with that statement.

Professor Lynch's statement is very obviously about something that makes us human and goes deep into our psyche. The problem is the system we live under, which privatises care, does not look after workers and does not accord those who need care the centrality they deserve. Therefore, we have to start at the roots and examine the causes that are driving people out of their work. We have a staffing crisis in this area not because the staff do not love to do the work but because they are not paid and treated properly and because they cannot provide themselves with homes, which makes them move on. This will continue. There will be a domino effect until the Government regards the matter holistically, deals with this and acknowledges that care under capitalism is not working and that we have to have a different approach.

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