Ms Catherine Cox:

On behalf of myself and my colleague, Clare Duffy, I thank the committee for inviting us here today to present our estimates in respect of budget 2022. Our written submission, which members have received, provides an overview of the policy context within which informal care is situated in Ireland and the increasing dependence on family carers to meet the demand for long-term care and support for the reorientation of the healthcare system away from institutional care and towards primary and community-based care. It also provides a summary of our key proposals relevant to the committee’s work that Family Carers Ireland would like to see delivered in budget 2022.

I will give a brief background on Family Carers Ireland. We are the national charity that supports family carers who care for loved ones, be they a child with a disability, an older person, or an adult with intellectual or physical disability. As the Chairman stated, we are aware that there are more than 500,000 family carers in Ireland who provide a huge level of care and save the State €20 billion per year. This is the cost of replacement care.

The past 12 months have been particularly difficult for everybody in society but it has been a very difficult time for family carers. They have witnessed their services and supports for their loved ones depleted and, in many cases, completely eradicated. The blanket withdrawal of supports such as home care, respite, personal assistance hours and residential care during lockdown forced many family carers to care alone, around the clock and without the support of extended family and friends. Parents of children with a disability lost the routine and relief of school, day services and essential therapies. This left them in a situation where they were obliged to watch their children regress before their eyes. Older carers with underlying health conditions were expected to cocoon. As a result they became both isolated and reliant on others. Even carers who were doing quite well prior to the pandemic became mentally and physically drained. Many of them are now struggling in their caring roles. In April of last year, Family Carers Ireland’s conducted a survey, Caring Through Covid, which explored the experiences of more than 1,300 family carers and the nature of their caring situations during the pandemic. The research found that the pandemic is having a profound impact on the majority of carers’ lives. Not only are they caring without practical supports, they are also struggling financially and are seriously worried about what the future holds for them and the people they care for. Despite this, family carers have continued to care for their loved ones, around the clock, to ensure that they stay safe and out of hospital.

Family carers have played a significant role in suppressing the virus in our communities but rather than being acknowledged and applauded, they have felt largely ignored and overlooked throughout the pandemic. This is particularly the case when they were not provided with personal protective equipment or with priority testing, nor were they considered a priority for vaccinations. The vaccination issue is probably the biggest upset for so many carers across the past year. Family carers continue to feel this abandonment despite the statement in the programme for Government that "Family carers are the backbone of care provision in Ireland. They deserve support and recognition from Government." They have not had this over the past year. On a more positive note, however, as we emerge from this pandemic, we believe there is a real opportunity for Government to show family carers that it does care and to recognise their work.

This can be done in a number of ways by implementing three of the key commitments set out in the programme for Government, which are outlined in our submission. The first is to deliver the carers' guarantee proposal. This will guarantee the delivery of a core basket of services to family carers right across the country regardless of where they live. These services include emergency respite, intensive one-to-one support for carers in crisis, training for family carers, targeted support groups and networks and access to the information and advocacy clinics in their local community. While this will be led by the Department of Health, the carer guarantee is very relevant to the work of this committee given its aim of ensuring that all family carers have access to services regardless of where they live, whether in the heart of Dublin or in rural Connemara. As such, this has the potential to end the postcode lottery of services and supports that we currently see across Ireland.

Our second request is the funding of a refreshed national carers' strategy for family carers. Given the period of significant health reform we are now in, including the implementation of Sláintecare and the creation of a statutory home care scheme, both of which are predicated on the provision of care in the home, it is critical that the national carers' strategy is developed as a matter of urgency. We need ring-fenced funding to ensure its delivery. Again, the national carers' strategy straddles most Departments addressing crucial issues such as housing, transport, education and access to equipment and vital therapies and supports, many of which, again, have been eradicated over the past year.

Our last key point is to call for the introduction of a dedicated lifetime carer’s pension for carers who have provided care for more than 20 years. Rather than penalise this group of carers we need to recognise them. We are pleased that we have seen progress on this issue in the last number of months and we hope to see that continue.

Last, but most important from a social protection perspective, we have to see reform of the means test, income disregards and allowable deductions for carer's allowance payments in the short term. Taking a longer-term view, we would like to see this payment reclassified to one which is neither means tested nor taxable, similar to the foster care payment we have at the moment.

To end, it is apt to quote from President Higgins's May Day speech just this week, where he stated "Our definition of work must change, ... evolve and widen, to incorporate the ... role of ... carers as essential workers; workers far too long undervalued by society". Once again, I thank the committee for the invitation to be here today and we look forward to questions.