Louis O'Hara

Overall sentiment: 0.17
Back to Debate

Carers across Ireland are the backbone of our healthcare system, saving the State an estimated €20 billion annually. Despite this massive contribution, they remain undervalued and pushed to the brink due to systemic failure to provide adequate respite. Respite is not a luxury. It is a fundamental necessity that prevents burnout, protects mental health and ensures the most vulnerable in our society receive sustainable long-term care. Organisations such as Ability West do fantastic work supporting families in the local area, and do their very best with the resources they have, but the reality is that in County Galway many parents of children with disabilities simply cannot access respite because of the lack of capacity and funding. The responsibility for this lies with the Government. One parent has told me of how she has been fighting for overnight respite for her son with high care needs for some time. She informed me that no availability exists because he needs two-to-one care and his needs are too high. She said the system is very broken if the children with the highest level of needs are getting turned away. Another parent told me of her 12-year-old son who is non-verbal and autistic and has an intellectual disability. He attends respite at St. Teresa's respite house in Ballinasloe run by Ability West. She stressed that the staff there are exceptional and the care provided is invaluable but this support is already extremely limited with access only twice a month. At present respite services have effectively been withdrawn due to a child requiring a crisis placement. While this child absolutely deserves appropriate care and support, the reality is that one child's crisis has resulted in other vulnerable children and families losing a service they depend on and this should never be allowed to happen. The situation has become so uncertain that although her son was offered a respite night this Saturday, she was warned he may have to be collected at any stage with little notice if issues arise. For her this is not respite but instability. She said that respite is one of the few places where he feels safe, secure and understood, and faced with the risk of this safety being disrupted she has had to make the difficult decision not to send him. No parent should be put in a position where they must choose between getting a break and protecting their child from a potentially distressing experience. These are just two examples but they reflect the experiences of many families and many carers when it comes to accessing respite. Many parents are unable to access any support for their children. Many have to travel very long distances to access care. I have been told that out of 40 children who attend St. Oliver's Special School in Tuam only two can get respite at St. Teresa's in Ballnasloe. There is no overnight respite for children in the Tuam area, which Ability West has raised with me previously. Ability West has indicated a willingness to expand services, including the development of an after-school respite programme at St. Oliver's school in Tuam but the main barriers are funding and support. What will the Government do to increase funding for respite services in County Galway to support the expansion of services? When will this happen? As I have said, parents have been left waiting for years and years in many cases and they deserve much better.

Sentiment score: 0.12

I welcome any additional investment and the plans the Minister of State has outlined for Tuam and elsewhere. I would make the point that proper respite care is the very least we should be able to provide in a very wealthy country for our most vulnerable citizens, their families and those who care for them. The Minister and her Department must ensure this happens. There is no excuse for having a system that is under-resourced and not meeting the needs of vulnerable children and their families. We clearly still need to go further because many of the parents who are in touch with me are simply not getting the services they need. I ask that there continues to be specific engagement on this issue with the likes of Ability West and supporting the proposals it has and that the Minister of State outlined, particularly for the likes of after-school respite and things like that, which can make a big difference for people. I also ask for specific funding for the area of crisis placements to be considered so that the emergency cases, such as those I outlined earlier, do not displace others from their planned respite. These are the kinds of assurances the families in touch with me are looking for because, as I said, for them respite is not a luxury but is absolutely essential. The risk of burn-out is real without it. The Toghermore campus in Tuam provides a real opportunity through equine therapy to provide another form of respite to families and to bring real benefits to children with disabilities. That opportunity must be taken by the Government. Locally, we expect to see that project being progressed. I know that Ability West is very keen to work with the Government and the HSE on this. I also want to mentioned the Before We Die campaign. There are obviously significant issues with the lack of space in residential care. I have constituents who cannot access full-time residential care for a loved one who has an intellectual disability and who desperately needs it. We must do much better for our vulnerable citizens. They are being failed.

Sentiment score: 0.21