Marie Sherlock (Labour) | Oireachtas source

I move:

That Seanad Éireann:

recalls that: - the Citizens’ Assembly and Joint Committee on Gender Equality recommended a referendum to replace Article 41.2 of the Constitution obliging the State to take reasonable measures to support care within the home and wider family, and the Government has committed to a referendum on this in November, 2023;

- there are over 500,000 family carers in Ireland, and unpaid family carers save the State €20 billion a year, while the 2022 Census shows the number of unpaid carers increased by 53 per cent to over 299,000 from 2016;

- the Government committed to introduce a pension solution for long term carers in January 2024; notes that: - the restrictive means test and low rate of Carer’s Allowance payment and the complex application appeals process for Domiciliary Care Allowance (DCA) are not sufficient to meet the financial needs of those caring for dependents;

- research by the Vincentian Partnership for Social Justice in 2022 shows income supports for family carers are inadequate in supporting low-income households caring for a child with a profound intellectual disability to meet a minimum essential standard of living, with an additional weekly care cost of €244, being more than the maximum rate of Carer’s Allowance;

- it is 33 years since Carer’s Allowance was introduced and there have been repeated calls for the abolition of the means test which has been estimated to cost €397 million;

- both the National Economic and Social Council and Joint Committee on Gender Equality recommend that consideration be given to a participation income for carers;

- if the person you are caring for is under 16 you must be getting DCA to qualify for Carer’s Allowance, but nearly 38 per cent of claims for DCA were rejected in 2022, while over 70 per cent of over 2,000 rejected cases were successful on appeal in that year indicating major problems with the current application and approval system;

- Family Carer’s Ireland has called for the weekly rate of Carer’s Allowance and Carer’s Benefit to be increased to €325 in Budget 2024; agrees that: - the current rate of Carer’s Allowance undervalues care work and is the only social protection payment where recipients are expected to provide full-time work and in return receive just €16 more than the basic social welfare rate; and calls on the Government to: - carry out an evaluation of Carer’s Allowance and other social protection income supports to ensure it meets the needs of parents, guardians and next of kin caring for relatives, as part of a full cost of care review that also calculates the financial cost and societal value of unpaid care;

- at a minimum in Budget 2024 increase the Carer’s Allowance income disregard to €1,000 for couples and €500 for single carers, and outline a pathway to abolish the means test by 2027;

- increase the rate of Carer’s Allowance and Carer’s Benefit by a minimum of €25 in the Budget with a pathway to a Minimum Essential Standard of Living and the Family Carer’s Ireland target of €325 a week;

- commit to increasing the rate of the Carer’s Support Grant to €2,000 in Budget 2024;

- reform the application process for DCA which is not sufficient to meet the financial needs of those caring for dependents, raise the age limit to 18, and increase the rate of payment;

- replace the Mobility Allowance and Motorised Transport Grant with the long promised Transport Support Scheme, and increase funding to the Housing Adaptation Grant;

- commit the additional €3m annually needed to fully fund the Carers’ Guarantee.

I thank the Minister for Social Protection for coming to the Chamber. I thank Senator Wall, who has done so much in the area of carers' supports in the Joint Committee on Autism and Joint Committee on Social Protection, Community and Rural Development and the Islands. I thank the people who have shared their experiences of caring roles with us. I know they will be arriving in the next minute or two.

As we all know, hundreds of thousands of people across this country have found themselves in caring roles either full or part time. It can include caring for a child with additional needs, a family member with a physical or intellectual disability or a parent or relative who can no longer fend for himself or herself. They do it out of love but, unfortunately, the reality is that many carers suffer in silence because of a sense of wanting to afford dignity to their loved one, a sense of pride, a need for privacy and a desire to protect those for whom they care. We know that of all this means there are thousands of people hanging on by the skin of their teeth in financial terms and in terms of their health and well-being.

The outcome of the citizens' assembly on care was certainly ground-breaking. The recommendation to ensure recognition of care in Bunreacht na hÉireann will make up for the many decades of a very old-fashioned view of care and provide recognition for the thankless work so many undertake for their loved ones across this country. We hope to have the referendum at the end of this year. I look forward to the Minister providing an update on the date of that referendum in her contribution.

With or without the referendum, the true value of any insertion or change to Bunreacht na hÉireann will be how we treat carers in practice. How we do afford them recognition and respect for the work they do selflessly day in and day out? We know the impact on so many is debilitating in terms of holding on to paid employment and the impact on their household finances and sense of independence.As we know, the reality is that, by and large, it ends up being mostly women who step back from their paid employment or take on that caring role. There are of course many men as well. I am very conscious that there are many men in caring roles who do not feel able to talk about it but, by and large, the majority of carers are women.

Our motion today seeks to ensure that carers are better supported by the social welfare system. Families come from vastly different care situations but there is a common thread throughout each of their experiences and that is the shocking lack of staff available for community therapies and supports, whether it is home care packages, occupational therapy, speech and language therapy, care for children, care for older people or care for those with a disability. The inconsistent and patchy service that we see across the country means one thing: that there is a disproportionate burden, in effect, on families to care for their loved ones. We have had people tell us heartbreaking stories. There is an 80-year old man who is caring for his son with an acquired brain injury. On top of the distress and worry of caring for his son, he now has to fill out a tax return every year on his carer's allowance. He gets a part-rate carer's allowance. The stress of having to fill out that tax return at 80 years of age has meant that this man is seriously considering giving up his carer's allowance. We have the parents of the 13 young adults who are leaving St. Michael's House school, who now have nowhere to go. Those parents have given their lives to their children with an intellectual disability to ensure that they have the proper supports and care. There is the mother who will stick in my head forever, who has a 40-year-old daughter with an intellectual disability. The daughter has ten hours a week in Supervalu and has been told by the health system, effectively, that she is deemed too independent to be put into sheltered housing. Her mother, who is now 78, does not know where her 40-year-old daughter will go when she is simply unable to care for her any longer. I know a number of mothers who have autistic children who have ended up having to take a step back from their paid employment in order to look after their children, in particular because of the shocking lack of services with regard to initial contact for assessment and then, on the other side of it, for therapies. One mother said to me during the week that the domiciliary care allowance was the most upsetting form she has ever completed.

We know from Family Carers Ireland that 1,500 people with intellectual disabilities are living with their carers, their parents, who are aged 70 plus, and 450 are living with parents aged 80 plus. There is a huge lack of residential supported housing and there is an unmet need for 2,300 residential places. The lack of services is at the heart of why carers shoulder such responsibility. We absolutely need to see an increase in services, but our motion today is about how we ensure that we provide supports to carers too. Our focus in particular is on the design of the carer's allowance. To me, it is very much from a bygone generation. When we see who it excludes, we see a payment utterly unfit for purpose and ignorant of the many different care needs that exist. It is sexist and penalises women in particular who have to reduce their hours and leave jobs to care at home. It is the gross income of the household that is considered, not the net income, and not the individual doing the caring. For those who are eligible, it locks many of them into a low income and restricted situation. Rather than encouraging carers to be able to take up employment or education, there is little or no pathway for those on carer's benefit or the carer's support grant. Ultimately, the carer's allowance was originally introduced more than 30 years ago to look after those who were caring for older persons, when the reality is much broader than that.

I am painfully conscious that profound change is needed in the provision of services. Where I am located on the north side of Dublin in community healthcare organisation, CHO, 9, we have the longest waiting list in the country for children to get an initial contact for disability services. That is the case when we compare CHO 9 with all other areas across the country and it places an enormous strain on parents who are trying to help and support their children, who need support. As the Minister is aware, weeks and months matter in a child's life. Parents see their child regress because they are not getting support.

In our motion we talk about the financial supports but we must also look at the other supports. We know from research conducted in 2019 by Family Carers Ireland in conjunction with UCD and the College of Psychiatrists of Ireland on more than 1,100 carers that 67% suffer from physical ill health; a massive three quarters are worried about their health and well-being and 50% were diagnosed with mental health issues. I think of one family in particular where not one but both parents have developed serious mental health difficulties because of the strain of caring for their eight-year old son and the constant grind of fighting for respite and the psychiatric care he needs and fighting for a proper education for him.

The irony in this country is that while we have a statutory right to hospital care and to public healthcare, we do not have a statutory right to home support. I know the Government is making moves in that space, but there have been delays. The reality is that care within the community has remained the Cinderella or the poor relation, relative to all else in the health services. We are into the sixth year of the Sláintecare plan, yet we see such torturous progress and a real delay in progress in terms of providing care in the community. It feels that we are no closer now than we were back in 2017 when the report was published.

Census 2022 records just under 300,000 people self-identifying as carers. That is an increase of more than 50%, but what is really striking is the number of people who are providing care for 43 hours or more in a week, which has more than doubled between 2016 and 2022. There are now 86,972 people who tell us that they are providing unpaid care for more than 43 hours in a week. We have to ask what we are doing for those people to ensure that they are able to provide the dignity and respect to their loved ones, but also that we are looking after them as well, and that we do not have lost lives. I will hand over to my colleague, Senator Wall, who is seconding the motion.