Ms Samantha Kenny:

I agree. The HSE needs to be asked. From our experience, there is a massive over-reliance on charities and NGOs to provide services that the HSE lacks. That is not right. We depend on a charity for nursing hours. Personally, we are ageing out of that charity. I have no idea who will provide my nursing care. I am not getting any feedback from anyone. It is "computer says no" or there is no one there from whom to get a response. I am not alone in this - it is a common issue for families in similar situations.

Something else I might ask to be raised is the loco parentisrule in terms of nursing care. Under it, nursing care is provided but there has to be another adult in the house with the child. This basically means that nursing care is provided but the parent is not given time away. What is the point in having the nursing care if the parent cannot leave to do what he or she needs to do and that cannot be done when the child is with the parent? This rule needs to be reviewed, although I know it was reviewed previously. Nursing care has been referred to as support rather than respite. Nursing care is support - it is not respite. It is not that we want time off. Rather, we need space to go to a bank. Otherwise, we have to drag our child with a wheelchair into and out of a car and through an inaccessible building just to lodge money. It is not that we want time off to go to the cinema and have a meal. Rather, we use those hours to do basic things like take a sibling to a swimming lesson. I cannot do that if I have to stay in the building with a nurse. If I do not stay, then other family members have to. What is the point in having a nurse if a family member has to stay with the nurse? This rule needs to be examined. It is not support if we have to stay there.

I thank the committee for giving me the time to have my say and put my point across on the issues we have raised today.