Regina Doherty (Meath East, Fine Gael) | Oireachtas source

I thank Deputy Finian McGrath for bringing the Bill to the House and welcome those present in the Visitors Gallery.

A low-incidence disability is defined as a severe disability or a disabling condition that has the expected incidence rate of less than 1% of the total population. In Ireland Down's syndrome occurs in 0.2% of the population. The policy of the Department of Education and Skills is to provide resource teaching hours on a one-to-one basis for pupils with the highest level of special education needs. It has a list of 11 low-incidence disabilities that qualify for the allocation of resource hours, but Down's syndrome is not on the list. Despite repeated requests to the Department and the NCSE, we get no answer as to why it is not on it. Based on my reading of it, the Minister of State's speech suggests this is because Down Syndrome Ireland had asked for the resource hours within the general allocation model to continue to apply. In actual fact, it has been fighting for the exact opposite for a long time.

Everybody agrees that early intervention for children with special educational difficulties is vital. It is an attempt to at least minimise, if not prevent, the impact a disability has on a child's development. Most people agree that children with Down's syndrome who receive help from early in life are more advanced than children who do not. It begs the question as to why the State would not want to give equal opportunity to all children. In the education system some children with Down's syndrome are required to have a diagnosis of a second disability in order to qualify for these precious resource hours - the very link with providing them with the best chance of a positive outcome for a fruitful life. It is as if being born with Down's syndrome is not challenging enough in itself. This is wrong and I hope the Bill represents the first step in correcting this ludicrous position.

Children with Down's syndrome face development challenges in five areas: language and communication; concept development; social and emotional development; motor development - stuff such as sitting, walking, running and playing with toys; and self-help and adaptive development - stuff such as feeding or dressing themselves. They nearly all have some degree of hearing loss which affects their language development. Most children with Down's syndrome have vision impairment. This all means that children with Down's syndrome typically learn at a slower rate and often have more difficulty with abstract language-based concepts. However, we seem to believe it is acceptable to make these lovely children and their families jump through a series of hoops just to get the educational resources they deserve and which are vital to achieving a more positive and successful outcome for their lives.

When I was 12 years old, by best friend at the time got a new little brother, Paul, who was born with Down's syndrome. He had the most profound effect on me as a girl growing up. He had a huge capacity for affection. His ability to overcome life's hurdles with the aplomb of a child with no inhibitions was incredible. He had a positive perspective to fight his challenges. His family were wonderful because of their ambitions for him, which had a significant effect on me. As a society, we need to cherish the positive outlook these families have. The State needs to cherish, foster, support and encourage these families and not make things difficult for them.

Just over a year ago I made another new friend, Aaron Doherty, who is now five and a half years old. He is one of the most adorable and cutest little persons I have ever met. It has nothing to do with his physicality and everything to do with his personality. I also made friends with his mother, who is in the Visitors Gallery today. She is one of the most formidable and passionate mothers I have ever met. We are all passionate about our children, but the difference between Mary and most mothers is that we, as a state, have made her feel like a second-class citizen. Just over a year ago she sent me the following e-mail:

I am writing to you as a concerned, upset, disheartened mother of three beautiful children one of whom has Down Syndrome. My son Aaron is 41/2 years old and it is our wish and hope that he will start mainstream school in September 2013.

Since Aaron was born we have fought against a system that we feel regards him as a person of no significance. We have had private physiotherapy, cardiac, ophthalmology, ENT, speech and language appointments for Aaron as the public system was failing him.

As a result of private consultations, our never ending efforts and Aaron's interest in learning and continuous hard work he is progressing very well. Now we are faced with assessments and reports made by strangers for strangers who will decide what if any assistance Aaron will receive as he embarks on this new stage in his life...

I have discovered that all these reports have to focus on Aaron's negative attributes. All his hard work, progress and achievements over the last 4 1/2 years only stand to hinder his chances of getting the assistance he requires to successfully part take in mainstream school.

The realisation of how unjust, negative, degrading, disgusting and completely wrong our treatment of children with Down Syndrome is really hit me today as I sat through a professional assessment with Aaron, praying, hoping and willing him to fail so he would get a chance at maybe getting the assistance he needs to help him reach his full potential. I was sick to my stomach and totally ashamed of the way I was thinking.

What parent hopes, prays and wishes their child to fail?

How dare you make me wish this for my child.

We, as a state, have made Mary feel the way she does and we need to change this. I really hope that change will start today. We need to be serious and sincere in our support of the Bill. I again thank Deputy Finian McGrath for bringing it to the House and fully support it. On Tuesday Mary told me that when she had given birth to Aaron, somebody said to her that he was her cross to bear. She told me that the education system was her cross to bear. That is down to people in this House and the Government. We have the power to change this and it starts today.

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