Ms Catherine Cox:

I will address some of those questions. Ms Johnstone can jump in on them, too. On the issue of elder care, quite a number of the 500,000 carers in Ireland are elderly people caring for a spouse, an elderly parent or an adult with intellectual disability. The pressures and challenges are significant. As regards respite, for example, even before Covid it was inadequate, inconsistent and completely unfair and inequitable. Now that we are coming out of Covid, it is even worse. Respite beds that were available are no longer there. In addition, there is the crisis in the home care sector and trying to get paid home care workers across the country. All of that has put far more pressure on family carers, who are trying to do it on their own without the required supports.

As regards strategy, the first national carers strategy was published in 2012. It is due to be renewed and refreshed, with additional funding. We still do not have a new carers strategy. The vision statement of the strategy states that carers will be recognised and respected as key care partners, supported and empowered. The harsh reality is that carers are neither recognised, respected, supported or empowered.

We carried out state of care research last year. Of carers surveyed, 88% feel the value of what they do is not recognised, 71% feel left out of society, 23% struggle financially and have had to cut back on essentials such as fuel and groceries, and 29% are living on an income of less than €20,000 per annum. That speaks to the issue of financial support raised by the Deputy. Carers are struggling financially and emotionally. The carer's allowance is a means-tested payment. Until that means test is abolished and replaced by an assessment based on need, carers will continue to struggle financially.

There are other issues, such as transport, which is a significant issue for people with disability and their family carers. It is key and causes exclusion for many in society. As the committee will be aware, prior to 2013 there were three transport schemes for people with disabilities and their carers, namely, the mobility allowance, the motorised transport grant and the disabled drivers and disabled passengers scheme. All of those schemes are gone. There is no current transport support scheme for people with disabilities.

To go back to access to vital supports and services in the community, there are more than 18,000 children on waiting lists for vital therapies. They are waiting on services such as physical therapy and occupational therapy.

They are being denied those services and the opportunity to develop to their full potential, and, yet, family carers, as Ms Johnstone said, are continuously battling for it. As a solution, Family Carers Ireland has suggested that additional funding could be put into the National Treatment Purchase Fund, NTPF, to pay for those through private sources. At least we would then eliminate the waiting lists and get to a point where new applications could be processed and supported.

The Deputy talked about dignity for people and the balance required with regard to awareness of the rights of people with disabilities. Awareness of the rights of the family carers is very important as well. No family carer or person with a disability wishes to go on the public airwaves, open his or her heart and soul and tell the world how he or she struggles. The reality is that he or she has to do that because the supports and services are not in place. What happens is that one case is probably fixed but the system remains broken. The main message today is that we have to fix the system. We have to put in place supports that support the family carer and people with disabilities to live, engage and participate in society. It is crucial everybody here today takes away that message. It needs a joint effort and everybody singing off the same hymn sheet.