Clare Daly (Dublin North, Socialist Party)

It is quite humbling for us to be here in the presence of so many parents and warriors who have done an enormous service to this issue by putting a spotlight in recent days and weeks on the lives of parents and families who care for children with serious disabilities. It should mean the appalling negligence that has been perpetrated on some of our most vulnerable citizens has to stop. These people have exposed it and now the knowledge is there to be seen. These parents and families do not want a pat on the back. All they want is that to which they are entitled. They want something that is not too much to ask for - the right to raise their children with dignity and support. We are a long way from that type of society, however.

The individual stories people have told are important, although it is not possible to address them all in this debate. The parents and families have told us loudly and clearly about their stress, exhaustion and despair. They have also demonstrated the constant battle, isolation and the 24-7 commitment, 365 days a year. It is something that was never planned for or expected but has been dealt with by loving parents. The least they expect is a bit of support in that battle. We have failed in that and we must be honest about it.

I acknowledge the Government did not cause the problem, which predates it. If it does not address it urgently now, however, the Government will be just as guilty as the last lot. Today's message is that the ball is in the Government's court. It must answer the fear of those who wait for the postman. They feel that if they incorrectly fill out forms or do not provide enough information, their allowances for domiciliary and respite care will be cut.

The Government must take on board the significance of the information in the motion. The facts highlighted confirm the problem in the system. The numbers being refused on initial application compared with the numbers eventually approved months or even a year later can lead to no other conclusion than they are being excluded deliberately. They are being forced to jump some sort of convoluted obstacle course at enormous additional financial and emotional cost. That is simply not acceptable and it has to stop.

I accept the point made by the Minister for Health, Deputy Reilly, that there is a responsibility to mind public money. The implication is that by refusing some people there will somehow be a bigger pot for everybody else, but that is not the case. There is no justification for the current system of refusals. Neither is there any justification for letters telling parents their children did not require any more care or attention than a child of the same age who did not have that diagnosis. What an absolute insult that is to people like the parents of Danielle. She is six years of age with the verbal skills of a two year old. In addition, she has needs such as developmental verbal dyspraxia, hypermobile joint symptoms, hypersensitivity syndrome and 50% hearing. All of this requires massive intervention under the care of a special needs consultant, but her parents have been told her IQ is too high which means she attends a mainstream school. As a result, she will be refused the necessary allowances.

The reality is that the domiciliary care allowance is not much - not even €100 a week - to access the vital supports and treatments these families need. I respect the title "warriors" that many of these people have given themselves because they have shown from day one they must fight for diagnosis, access to resources and back-up. The system is the wrong way around.

I am glad the Minister is committed to a policy review. Unless parents and the organisations are involved in this review, however, to ensure a proper and transparent system, it will not work. The Minister has the opportunity to do that now and I hope he does so. We should be talking about changing the entire culture and moving towards a system where we support children and their families rather than excluding them from vital early intervention which would enable them to develop towards independent living and reducing their long-term care needs.

I can honestly say that these people have begun to organise. The lid has been lifted, they are not going got go back into their box, and the Government would do well to heed them now.

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