Holly Cairns (Cork South West, Social Democrats) | Oireachtas source

I thank Deputy Connolly and the Independent Group for bringing forward this motion, which the Social Democrats fully support. I welcome this opportunity to discuss respite care. This motion goes to the heart of how the incredible role of carers is continually overlooked and undervalued by the Government and the State. The inadequacy in the provision of respite care is a symptom of a much larger issue. Carers are absolutely essential and provide incredible support every day, with disgracefully little State assistance in terms of payments and respite. Respite care is crucial for carers. It provides them with a much-needed break from the psychological and physical toll of caregiving, while also benefiting the person who requires care. We all know that carers have been paid a lot of lip service during the pandemic, but unfortunately this rhetoric has not been accompanied by substantive supports.

Family Carers Ireland’s 2022 pre-budget submission, entitled "The Forgotten Frontline”, perfectly sums up the position of many family carers throughout the pandemic. They provided essential care in the home and dedicated all their waking hours to caring for loved ones, in many cases without any day or respite services. While budget 2022 included some small increases in the weekly rates and long overdue changes to the means test, these measures were simply not enough to address the true cost of care, and they are even less effective now against the backdrop of soaring energy and household bills. A recent report into the cost of caring published by Family Carers Ireland found that the minimum essential standard of living costs for a two-parent household caring for an adolescent with a profound intellectual disability amounted to €752 per week, excluding housing costs. This is €244 higher than the cost for a two-parent household with an adolescent child who does not have a disability. With inflation having risen to 8.2% by the end of last month, this gap has undoubtedly widened since this report was first published in February.

In view of this increasing financial burden on carers, the absolute minimum the Government could do is ensure there is adequate access to respite services, instead of the current postcode lottery. Even before the pandemic and the cost-of-living crisis, the provision of respite was disgracefully inadequate. The State has for too long undervalued the role of family carers and, consequently, underestimated the importance of respite. Some of this is due to the fact family carers often suffer in silence. They get up every day and do this invaluable work with little fuss because they simply do not have the time to campaign for services, and they should not have to. The State should not need to be cajoled into providing basic services and supports.

When things reach a crisis point, however, they are forced to take to the streets. The recent Families Unite for Services and Support, FUSS, rally, which I attended with Deputy Shortall, co-leader of the Social Democrats, displayed parents' palpable despair. They have reached breaking point because the State is effectively ignoring and neglecting their children. These are children with disabilities and additional needs who are being left to languish on waiting lists, while their parents, who on top of their caring duties must now take to the streets, are undoubtedly fed up.

One of their requests relates to respite and the issue of open access to personalised budgets. If the Government were to address this issue, it would empower more people with disabilities and their families to make choices that work for them. This is about their rights under the UN Convention on the Rights of Persons with Disabilities, and about receiving the necessary supports to live as full and independent a life as possible, but the Government along with its predecessors has repeatedly failed to implement measures that would allow people with disabilities to exercise their rights as equal citizens. That is the very reason it has still not ratified the optional protocol to the UN convention.

I have continually raised the need to ratify the optional protocol and the Joint Committee on Disability Matters has also called for it. Last week, I attended the UN Conference of States Parties to the Convention on the Rights of Persons with Disabilities specifically to understand the role and importance of the optional protocol. In 2018, the then Government, some members of which still sit at Cabinet, was not shy about lauding itself for being the final EU government to ratify the convention, 11 years after it had been agreed. It failed, however, to ratify the very protocol that gives this convention teeth because doing so would leave the Government exposed, with nowhere to hide. It would shift the balance of power by giving citizens the ability to take cases against the State to the UN.

That is why the Government is dragging its heels, and it is an utterly shameful and cynical reason. Various Ministers have cited reviews, legislation and even the UN itself as reasons for the delay but as far as I can see, the only legitimate reason the Government has yet to ratify this crucial protocol relates to the fact it does not want to be held to account over its failures to provide an adequate level of disability services. After decades of failing to uphold the rights of people with disabilities, something needs to force its hand. This protocol could be that catalyst for change, not just in respite care but in every service needed to ensure the full realisation of the human rights and fundamental freedoms of all people living with disabilities.

When will the Minister for Health honour the Government’s commitment to ratifying the protocol, reinstate the respite beds lost during the pandemic and carry out an audit of respite services? These are legitimate questions we should not still have to ask. It has been 15 years since the convention was agreed. This farce must come to an end.

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