Finian McGrath (Dublin North Central, Independent) | Oireachtas source

I move: "That the Bill be now read a Second Time."

I thank the Leas-Cheann Comhairle for the opportunity to move the Down's Syndrome (Equality of Access) Bill 2013. I do so on behalf of every child with Down's syndrome, every family connected with Down's syndrome and, in particular, all the families in Down Syndrome Ireland. I also do so as a parent of a daughter with Down's syndrome and as a former chairperson of the Dublin branch of Down Syndrome Ireland. Today is a very important day for me personally as well as politically. I urge all Deputies to look seriously at the legislation and to support it next Tuesday.

The purpose of this Bill is to afford statutory recognition to Down's syndrome as a low-incidence disorder and, in doing so, to ensure adequate provision is made for resource teaching hours to be allocated to pupils with Down's syndrome. The terms of the Bill are principally based on the Department of Education and Skills's 2005 circular. The Bill gives statutory effect to the allocation of resource teaching hours. Section 1 defines 13 key terms which are relied on in section 2. These definitions very closely reflect the meanings which have been assigned to those terms in the Department's circular, which references Down's syndrome but does not define it. Section 2 requires that resource teaching hours at the level specified in the table which accompanies the section shall be delivered by a school to each pupil who suffers from one or more of the 12 types of low-incidence disability. Section 3 sets out the Short Title of the Bill.

The Bill will come into effect immediately upon its enactment. I thank Mary Doherty, president, and Pat Clarke, CEO, of Down Syndrome Ireland for their magnificent work and support to me with this Bill and all of the team and parents in Down Syndrome Ireland. I specifically thank my Independent colleagues who have done magnificent work on this issue and who have been very supportive of me over the past 12 months. I also thank all the Government backbench Deputies who have supported this over the past year.

The Bill represents an important step for families and students with Down's syndrome. It is also a test of this Dáil and our society in terms of how we treat people and in terms of our priorities and ambitions. It is not designed to change the world or to give advantage but is merely a requirement to correct a glaring anomaly in our educational system. Special Education Circular SP ED 02/05 sets out the policy and requirements for resource allocation, including the identification of 11 low-incidence disorders. A low-incidence disorder is one occurring in less than 1% of the population. Down's syndrome is not included on this list. Let us consider some facts. Down's syndrome occurs in 0.2% of the population, which clearly illustrates that it is a low-incidence disorder well below the Department's definition of such.

International research has shown that a child with Down's syndrome can benefit significantly from being schooled in a mainstream environment. Such an environment can have a very positive impact on the student, but the correct supports must be in place to allow the child to progress, and this means that resource teaching hours are essential in order for him or her to cope and thrive in a mainstream setting.

We know that Down's syndrome is a low-incidence disorder and that there are enormous benefits to providing the resource teaching allocation. It makes perfect sense that this policy should be adopted. The anomaly has occurred because the Department states that a child's IQ must be at least of a normal level in order to qualify for resource teaching hours. As a child with Down's syndrome will not meet this IQ requirement, it has not been included on the low-incidence disorders list.

This House, above all places, should know well there is no one-size-fits-all approach. Flexibility and leadership is demanded, based not on the process but on the proven results that can be achieved. I very much welcome the fact the Government has chosen not to oppose this legislation. Again, I commend Government backbenchers who have worked on this issue. That decision underlines the importance of this measure and the practical benefits it can bring.

While it is all very well to talk about structures and aims, we should remind ourselves that while we talk, everyday students and their families are trying to cope. Vital time is lost and that time cannot be retrieved. Currently, a Down's syndrome student is offered learning support. One in five of all students in our education system receives learning support. Such an approach is quite obviously inadequate for the needs of someone with Down's syndrome and, in any event, the programme is completely over-subscribed and unable to deliver for all the students that need such help.

Down's syndrome must be treated as a unique case. Students are currently falling between two stools. While a Down's syndrome student may not reach higher levels of IQ, the fact that he or she can benefit from resource teaching hours has been clearly proven.

Down's syndrome should be added to the list of low-incidence disorders as it meets the definition of "low-incidence". A student with Down's syndrome should also be allocated the maximum number of individual hours per week, which is currently four hours 15 minutes, in order to give maximum benefit to the student. We should bear in mind that these hours have already been cut and there are better supports and facilities in other jurisdictions. All that is sought here is to allow children who clearly need this small resource, which the State makes available, to receive it. This is not a lot to ask. It is not an idea that meets with opposition from any quarter, except on the basis of administrative definitions and technicalities. There has been much talk about working groups, plans and tailored allocation models. We have had an abundance of advice and suggestions on how the problem might be overcome down the line. We are told that the current system provides at least some support. Ask the parents of children with Down's syndrome if the current system is working. Ask them for their input and, for once, perhaps heed the advice of people who are actually experiencing what they are talking about. The current system does not work and is inadequate. The Minister should accept that. Then at least we can start to deal with the problem.

It is all very well for those of us in this House to talk about long-term plans and to refer matters to committees and working groups. For once we have a chance to do what we are actually elected to do, namely, take decisions.

I urge all Deputies this morning to take these decisions and support the Bill; not to farm things out or look for cover but actually make a difference. This Bill is about making a difference on the ground.

It is entirely unacceptable that we leave students go to school every day and try to cope while we consult and deliberate. When the Minster has a new model ready, let it be brought before the House and let us put it to the test. This Bill has the potential to make a huge difference to the lives of many families, improve the prospects for many students and greatly assist mainstream schools and all of their students in working with children with Down's syndrome. It is not something that will break the bank, if they could be broken more than they already are. It is all about jobs for young teachers who could end up emigrating to Australia or elsewhere. We can deal with the matter effectively and cleanly. By passing the Bill, we can ensure these vulnerable children are protected, receive the services they need and have their rights enshrined in legislation. That would be a good day's work, which nobody can deny. What is required is leadership and a small amount of political courage. There is no time for delay. The hallmark of a strong Dáil and society is the ability to take decisive action. The Bill will not harm anybody. We must put petty politics to one side and show some initiative. All Independent Members, as well as Members of the other parties represented in the House, seem to be supportive of the Bill. We must stand up for the rights of those who need us. Where there are anomalies and bad policies, let us correct them, rather than seek to justify the indefensible.

Last year the Ombudsman for Children, Ms Emily Logan, criticised the approach taken by the Department and stated it had "adversely affected" the capacity of children with the condition to engage to the fullest possible extent in mainstream primary schooling and that there was "potential for loss of opportunity given the lack of adequate consideration given to the cluster of needs for such children." That is a damning indictment, yet nine months later we still have no action and students continue to try to attend school and their families to cope - nine months that will not be recovered when reports are finally presented and new systems are implemented. That is why we need to act today with this Bill.

The Bill offers us a chance to rectify a great wrong with immediate effect. A majority of Members know that it is the right thing to do. If we accept the Bill, it will not mean that long-term plans and systems cannot be implemented. The consultative process can continue and the new plans can be achieved in their own time. That is good for the students of tomorrow, but the Bill tries to give the students of today a chance. Let us not try to hide behind language or proposals. Let us not seek to blame inflexible systems. Let us not find make-believe barriers just to avoid a decision. We must be confident that we have the power and ability to change things. After all, we were elected on the promise of reform and change. We must believe we can cope with whatever changes are necessary and overcome them. We must decide that doing the right thing is worth any amount of work. If the Bill fails, children with Down's syndrome will be forced to continue their education without the support they need. That will be nobody's fault but our own. We have the power to change this now. The only question is if we have the courage to do it. I commend the Bill to the House with every fibre of my being, in the full knowledge that it is sensible, fair and honourable legislation. I ask everyone to think deeply about it and not to turn his or her back on those who have asked for our help.

I wish to ensure all children with a disability receive proper resource hours and nobody should be excluded. Concerns have been raised with me recently about people with other disabilities. For example, there is a rare syndrome, 1p36 deletion, where part of a chromosome is deleted, of which there are 12 cases in Ireland. The people concerned also have to be protected and must receive resource hours. I stand up for these children today, as I believe all families with a disabled child should work together on the resource issue. This Bill is about ensuring resource hours for children with Down's syndrome. It is about equality and respect for citizens. It is about inclusion but, above all, it is about changing the education service to suit the child's needs more and guarantee the right to a service for all children with Down's syndrome.

I commend the Bill to the House and will be delighted to listen to the views of other Members.

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