Martin Browne (Tipperary, Sinn Fein) | Oireachtas source

The case I want to address today concerns a young man, Stephen, whose lack of adequate home help support arrangements is something I raised in this House in December 2021. At the time, he was in receipt of one hour per week of home help and two hours per week from the local independent living centre. Since then, he has been left short.

Let me give some background to Stephen's case. This young man has muscular dystrophy. He lives in the same house as his parents with his own quarters where he can live as independently as possible. However, that is being made more difficult by the fact that, currently, the number of hours he is receiving is not adequate, and more so the hours he is receiving cannot be used properly because they are very much hands-off. Stephen receives one hour per week from the HSE home support and seven hours per week from the Tipperary Centre for Independent Living, TCIL. He had been approved for additional hours but despite the fact that all private agencies have been approached to provide additional support hours, none have capacity at present. The additional hours he has been approved for cannot be filled, which is one issue.

The second issue, and probably the most important, is how the hours Stephen is receiving are being used and what practical use they are to him. In light of his disability, he needs a specific type of care, especially in the mornings and at bedtime. In the morning, he needs to be turned and helped out of bed. He needs to have leg movements carried out and he needs to use cough assist. These all involve the presence of someone who can assist him with this. However, none of this is available to him even with the current hours of home support he gets each week. This is because his providers do not have the staff who are covered to do this. The consequence of this is that despite having home support workers coming in for seven hours a week, his parents, Donal and Nicola have to do this for him. They have to physically get him out of bed and prepare him for the day. They have to carry out the procedures that I mentioned.

This is not good enough for Stephen's independence because, as he said to me in an email, he is going on 29 years of age and has no support to allow him to be himself.

I understand that south Tipperary disability services continue to seek a provider that can use the cough assist, but Stephen continues to go without. His family have to fill that gap while arranging their activities around that schedule. Only yesterday, Stephen explained to me that the half hour during which his mother, Nicola, goes to school with his sister seems like the longest half hour of the day, as he is waiting and thinking something might happen whereby his mother has to rush, while he is also stressed out. In situations such as Stephen's, so many things have a potential consequence. For his family, preparations have to be made, if they can be made at all, in order for his parents to be out of the house for any length of time, especially in the mornings and at night when Stephen requires the most physical assistance and help. This can affect the family's ability to do other things, while also leaving Stephen feeling responsible for the demands he places on the family.

My purpose in raising this issue is to see whether anything can be done to address this specific situation. The family needs more hours, but they also need those hours to be attended by someone who has the ability and permission to be hands-on and to provide Stephen with the physical assistance he needs.

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