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

I thank Sinn Féin and Deputy Tully in particular for this important and timely motion, which the Social Democrats fully support. It is another week and another motion on the disgraceful state of our disability services, with another reminder that life is harder, more stressful and more expensive when someone has a disability in Ireland. The motion highlights the unmet need in terms of respite care, with particular reference to the lack of respite beds in Cork. Last week we discussed the 10,696 children who have been waiting for more than 12 months for initial contact with a children's disability network team, CDNT, and two weeks before that, we debated a motion on the utter failure of this and previous Governments to replace the mobility allowance and motorised transport grant since it was discontinued for new applications in 2013.

There are common trends here, including a disregard for people with disabilities and an uncoordinated and antiquated approach to understanding disability. The Government has been busy infighting and kiteflying on proposed tax cuts at a time our disability and health services are shockingly understaffed. How many more Opposition motions do we need? How many more disabled people have to come forward and tell their story? How many more parents will have to save and sacrifice to afford private services that should be provided by the HSE?

Those living with a disability in Ireland are at a significantly greater risk than non-disabled people of experiencing poverty, social exclusion and unemployment. Indeed, we are the highest in the EU when it comes to unemployment. Disabled people also experience barriers in transport, housing and education. Another way is possible however. Week after week at the Joint Committee on Disability Matters we examine the importance of a rights-based approach. We also see how children and adults with disabilities are denied their rights to education, healthcare, to live independently and to work. The Government would claim that it is committed to a rights-based model but this is evidently untrue. One of the most concrete actions the Government could take, if it was willing, is to ratify the optional protocol of the UNCRPD. This mechanism allows individuals and groups to hold the state to account for failures to uphold their rights by making complaints directly to the Committee on the Rights of Persons with Disabilities. Ireland is the only country that did not do that. I have consistently and repeatedly asked the Minister to show he is committed to a rights-based approach by ratifying the optional protocol. Not only does the Government keep refusing to do so, it keeps shifting the goalposts on why it cannot. For ages it cited the assisted decision-making capacity legislation but that is done now. What is the next excuse? It keeps changing. The Social Democrats are fully committed to ratifying the optional protocol and guaranteeing rights through the introduction of a statutory right to home care and personal assistants. We would commence, in full, the Education for Persons with Special Educational Needs Act 2004, also known as the EPSEN Act, and the Irish Sign Language Act 2017. These are all actions that the Government can and should take, and can blatantly afford to take at this time.

Respite is an essential part of disability services but it is clear that there are very few respite beds and community services. When talking with families, one of the issues they often bring up is the lack of respite services for children and adults with disabilities. Many people in my constituency have not had any respite care at all since before the pandemic. In Cork, there are supposed to be 27 beds for overnight respite services for children under 18 with an intellectual disability, physical disability or autism. However, ten of the beds in the words of the HSE are "suppressed or suspended" due to staffing shortages. Almost 40% of the respite beds for children and young people in Cork are just not available. The numbers are marginally better for adults, with six of 39 beds closed, also due to staff shortages and one bed only available at weekends. The total number on paper was already insufficient but the number of available beds in reality is shockingly low. This drastically reduces the chances of families being able to access respite and leaves overstretched and already exhausted families without basic services.

There has also been a gradual increase in the number of agency staff in this area but this is only a stopgap measure that fails to address the much larger systemic issue of staff in disability services. When discussing respite services, it is important to understand how important they are for disabled people, their families and carers. Research has consistently shown that respite improves wellbeing. It is about giving everyone a break and giving the individual and families some space. This gives everybody a chance to rest and recharge. We all know the incredible stresses faced by families with either children or adults with disabilities. Nobody can live under that pressure without it affecting their mental and physical health. Families and carers need respite.

A report from the National Disability Authority, NDA, explained that respite is an opportunity for disabled people to increase their independence, socialise with other people and experience new and different activities. This report, based on participation from people with disabilities, showed high levels of satisfaction with many aspects of respite services, especially the chance to get some time for themselves away from their families and to engage in interesting and meaningful activities.

The participants also noted that respite gave their family members and their carers, in particular their mothers, a break. Respite is an essential service. The Government has to recognise that. There is a pressing need for a drastic increase in our respite capacity.

In our alternative budget, the Social Democrats proposed moving towards an annual entitlement of 20 days' respite for disabled people and carers as part of the broader reforms needed to support family carers. Those reforms include increasing the rate of carer's allowance by €25 per week; instead the Government increased it by €12 per week. We also made provision for a cost-of-disability payment that would not be a one-off but that would acknowledge that disability is every day of the year. Respite needs to be treated as a vital service for disabled people and their families, and until the Government appreciates its importance and many benefits, thousands of families will continue to be denied it.

I have pointed out that respite capacity in Cork is especially poor. Service providers are overstretched and under-resourced. I think we all know that. In response to a parliamentary question, the HSE has informed me that the new development funding strategy under the national service plan, which provides for the 2023 Cork-Kerry community healthcare disability services, will mean that the funding available for expansion of respite services to CHO 4 is less than 50% of the usual annual development funding allocation for CHO 4 for respite services and contains no funding for residential respite. Any prospect to improve services in Cork, therefore, will presumably be impacted by that. That is unbelievable. There is also the ongoing impact of the proposed closure of the Owennacurra mental health facility, in Midleton, and the failure to set up a development team to establish a new ten-person mental health unit. Then there are the issues of the children in Carrigaline Community Special School, who cannot access overnight respite services. That is down to a complete lack of connected and child-centred services. The school is under the patronage of Cork ETB and the students are assigned to children's disability network teams run by service providers but do not have access to respite offered by the same service providers.

Finally, worst of all is that while all these things, a lot of the stuff we talk about, are about children's access to things such as the network teams, speech and language therapy, physiotherapy, places in special classes or autism spectrum disorder, ASD, classes, and special schools that are non-existent in many of our constituencies, after that, when you become an adult and you are a disabled person in Ireland, you have absolutely nothing. You are not even fighting for a place in a particular place. There is no provision in housing plans to build houses that are adapted for independent supported living. We saw the massive fallout of that in west Cork recently, when CoAction was potentially going to use a building purpose-built for children's day services to accommodate adults. The whole thing is a complete disaster. I worked abroad for many years in disability support services and have seen how good services can be and the very profound impact that that can have on individuals' and families' lives. I have seen the differences between learning and not learning how to communicate and people learning how to move themselves around independently, be it in a wheelchair or in whichever other way. That is the difference, and it can be done. It can be done so much better that I could not believe when I came back to Ireland years later and got into politics how desperate the services were here compared with those in other countries. The country I worked in was Malta. A lot of similarities could be drawn between here and there. There is no reason we cannot do this. We have the money. We need the political will, we need a connected approach and we need a rights-based approach to disability in this country.

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