John Whelan (Labour) | Oireachtas source

I thank the Minister of State for a comprehensive answer and do not doubt his bona fides in the matter. However, we would not have raised this matter on the Adjournment today if the measures set out by the Minister of State were in place.

Based on information I received from parents of children affected in the narcolepsy support group, that is the range of responses they seek but the required assistance is not in place on the ground. If it is, it is only available on a piecemeal or ad hocbasis. We require a strategic policy response.

I strenuously dispute that only 32 children are affected. The State does not know how many children are affected. There is a need for a public information campaign. Lifelong supports are required in conjunction with basic supports such as the provision of a special medical card. The condition cannot be cured and those who suffer will be afflicted for the rest of their lives.

We must also examine international best practice in the area and see what we can learn from that. In some cases, undue hardship is caused for families and there is a need for supports for students. It has happened in some instances that one or other of the parents have to become de factofull-time carers of their children. Such circumstances must be taken into account. We cannot just have a piecemeal response. A policy must be formulated in order that parents know where they stand. If the State does not live up to its responsibility in this matter families will be forced to go to court to vindicate their rights. They do not want to go down that road. Litigation is a costly process for families and it will be more costly on the State in the long run if we do not honour our medical and moral responsibilities in the matter.