Finian McGrath (Dublin North Central, Independent)

I welcome the opportunity to speak on this important debate on the domiciliary care allowance and the urgent need to refocus on the children with disabilities and their families. I commend my colleagues in the Technical Group on tabling this motion and I urge all Deputies in the House to consider seriously our proposals. I urge the Government to listen to the families who need the domiciliary care allowance. Treating families in this way is not acceptable. Terms such as "inclusion" and "protecting the vulnerable" are empty and hollow words unless these children are treated in a fair and respectful way. I caution the Government that it could be in breach of the Disability Act, which has clear guidelines. I urge the Government to deal with this issue from a human rights point of view.

The motion highlights that vulnerable families have encountered significant problems in accessing and retaining this vital support since the role of administering the domiciliary care allowance was transferred from the HSE to the Department of Social Protection in 2009. While welcoming the original motivation for transferring this function, which was to ensure consistency and transparency in the way in which applicants from throughout the country were assessed through the institution of a centralised application facility, the lack of appropriate expertise in the field of behavioural and physical disability among deciding officers is causing a problem.

The decision to schedule time for the discussion of this very emotive topic was made by the Technical Group in response to the ongoing and escalating appeals among constituents and representative organisations of children with special needs to pursue the Government with the aim of addressing the worrying escalation in application refusals, rulings of ineligibility for the allowance among those who have come to depend on the payment, and the excessive length of time to hear and adjudicate on appeals.

Representatives from Inclusion Ireland, Down's Syndrome Ireland and the Special Needs Parents Association came to Leinster House today to meet Members from the Technical Group. I thank the parents for making their submissions today and we all listened closely to their stories. A number of parents contacted me directly and I wish to quote a father's view as follows:

My son has an autism spectrum disorder which is a neurological condition and as such cannot be determined by a medical test. This is why I feel the importance of medical eligibility for DCA is so unfair. His diagnosis affects him, and others around him, in a more social way. He has significant issues with communication and at 5 years of age is still non verbal. Along with picture exchange systems, visual schedules and physical prompts he uses Lamh, which is a simplified version of ISL to communicate his needs and desires. This means that not everyone knows how to communicate with my child. As a result, he becomes very frustrated and starts to self harm by banging his head on the nearest object, be it a cushion or a wall, so he needs constant supervision as he has a very high pain threshold and wouldn't stop banging his head. [This is the reality for a parent of a child with special needs.]

We are currently under review for this payment, and our file was received by the Department of Social Protection's medical assessors on the 20th of March. I was informed by the Department that it takes 10/12 weeks to get a decision made by the medical assessors which means we must wait another 5 weeks for a decision from them, then our file will be returned to the department. I don't know how much longer it will be with the deciding officer there before a final decision is made. Which brings me to my first point, why does it take so long for this process to reach a conclusion? It is stressful enough being the parent of a child with special needs without having to worry about where the money is going to come from for next week's OT session, or how am I going to pay for the tax on the car to keep it on the road so that I can bring my child to school?

I also have a letter from a mother of a child with a disability as follows:

The Government have let me down so badly at a time when I really desperately need help. All they have done is added to the stress. I think about the DCA every day. I do not know how long I will have to wait to see if the boy's got it. If he doesn't, I can't get carers allowance and we will not survive financially. Every day is a struggle for us. It's like living in a battle zone, you can never truly relax. I am so ashamed of this country and the way they treat children with disability, the most vulnerable group in society. I am heart sick of having to fight for everything. This is not the way it should be in a civilised society.

Each year 2,500 children are not being assessed by the HSE within the legal time limits. I ask the Minister to consider the wording of tonight's motion. I urge her to listen to the parents and families. I urge all Deputies to support the motion and give all parents of children with a disability an allowance that supports their needs in a compassionate and common-sense way.

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