Martin Conway (Fine Gael) | Oireachtas source

I appreciate that the Minister for Health, Deputy Varadkar, has only been in his current role for several days but this issue has been well ventilated in the press and in these Houses recently. I am speaking specifically about the loss of €88,000 to the Irish Motor Neurone Disease Association. Under the special scheme for financing national organisations, the association used this money to facilitate a visitor programme. Perhaps it will be able to replace this money from within its own budget but that is not the answer. The bottom line is that it is down €88,000. All of us know the devastating impact of motor neurone disease on anybody who has the misfortune to acquire it. Our colleague, the late Deputy Nicky McFadden, passed away last March as a result of motor neurone disease. I know a number of people who suffer from the disease, as well as several who are no longer with us because of it.

I do not think any fair minded person wants to see a reduction of €88,000 because most people would acknowledge the work that the association does. We need a long-term solution to this problem. The national disability strategy is a good strategy but this cut flies in the face of its implementation. This is a case of the Government governing by the head rather than the heart but there is no logic in the decision because it will have to be rectified. In the long term, I hope that a proper multi-annual approach will be taken.

The Motor Neurone Disease Association exists specifically to support and advocate for people who suffer from motor neurone disease. As it is not going to go away, it has to be supported. Let us put in place a multi-annual programme of funding to support its advocacy, research and visiting work, as well as the assistance it gives to the families of those who suffer from the disease. Approximately 13% of its funding comes from the State, whereas the remaining 87% is raised by volunteers. The taxpayer and the State are getting good for money from its work. I appeal to the Minister to include this issue in his suite of reviews. I understand other organisations, such as the Disability Federation of Ireland, have sought a review. I am on the board of directors of a governing body of another national organisation, the CARA centre in Tralee, which applied for funding under this programme for the first time and was turned down. We need to take a long-term strategic approach based on multi-annual funding so that organisations and their service users are not left in a state of anxiety.