Joe McHugh (Donegal North East, Fine Gael) | Oireachtas source

I propose to share time with Deputies English and Regina Doherty. In the time available I will not have the opportunity to speak at length on this important topic. In the context of an emotive debate on carers, politicians are tempted to give extreme examples from their experience. No two examples are the same and it is very complex for any individual household dealing with the daily life of caring. It is important to give extreme examples because the manner in which we treat extremes defines us as a society. One example from my constituency is a mother of a 23-year-old man. She changes his nappies regularly during the day, which is a 24/7 job. She gets respite through day services five days a week. In the days before the budget, I raised the cut to the respite grant to flag my concern about future service reductions in respite care for people with disabilities. I am thinking of the extreme example, the 24/7 parent of young adults. The work is so intense that we cannot understand it unless we live it. It is difficult for people in that situation to articulate what it is like without being angry all the time. The issue becomes muddied in that case.

The bus collects the son at 9 a.m. and he returns at 4 p.m. In that time, the mother has respite, relief and downtime and she lives her life in that period. In that time, she mops the floor, washes the dishes and does the clothes. Living her life involves doing those chores. During care of her son, whether at 2 a.m. or 4 a.m, she or her husband must go into the bedroom to ensure the quilt has been pulled up around their son because he is unable to do it himself. I am attempting to get into the head of someone and describe what it is like but it is futile because I do not know what it is like. To a degree, I and my colleagues can empathise. People with children, changing nappies on a daily basis, can also empathise. For them, there is light at the end of the tunnel because the nappy changing stops at the age of three years. What happens to the parent of the 23-year-old, the 26-year-old or the 32-year-old who continually changes nappies? The parents' concern is who will do the job when they pass away. We define ourselves as a society in terms of how we treat these individuals.

I am trying to articulate that service plan reductions will be made by the HSE. I am calling on unions, civic leaders and those who have a good conscience within the HSE to examine other ways to make 3% or 5% cuts in the service plan for people with severe disabilities. The services are vital to people who require the services in their daily lives. I call on unions and leaders in the HSE to address this. We are all too quick to blame the administrative end, saying that civil servants are doing desk jobs and that their jobs are protected. However, these people are in leadership positions to define and decide where cuts will be made. I am calling on them to use all their resources. The HSE is not an autonomous and independent body but it has varying degrees of independence and autonomy and there must be ways of protecting the most vulnerable in society. The way we treat the most vulnerable and the way we map out a process where we look after the most disadvantaged is significant. If we take away day services from those who receive respite care, the parents will not have the physical or mental capability to deal with their children in the house on a 24/7 basis. In an economic context, it will cost more in the long run.

See this speech in context