Dáil debates

Friday, 7 February 2014

Down's Syndrome (Equality of Access) Bill 2013: Second Stage

 

10:00 am

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
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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.

10:10 am

Photo of Seán SherlockSeán Sherlock (Cork East, Labour)
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I welcome this debate and thank Deputy Finian McGrath for tabling this Bill and giving us the opportunity to discuss the allocation of resource teaching supports for pupils with special educational needs, including pupils with Down's syndrome. I am taking the Bill on behalf of the Minister for Education and Skills, Deputy Ruairí Quinn, who apologises for his absence as he is abroad on Government business today. There is an ongoing court case in the High Court on the issue of resource teacher allocations for children with Down's syndrome, which obviously limits somewhat the contribution I can make to the debate.

The Bill proposes to afford statutory recognition to Down's syndrome as a low incidence disability for resource teaching allocation purposes, in all instances, irrespective of a pupil's level of general learning disability as identified in a professional assessment. It also proposes to give statutory effect to the provisions of Department of Education and Skills Circular 02/05 which provides for the level of resource teaching hours to be allocated for all low incidence disability categories. I wish to make clear that the Government does not intend to oppose the Bill on Second Stage. However, to be very clear about its approach, the Bill will be referred to the Joint Committee on Education and Social Protection where it can be considered in the context of the forthcoming proposals to establish a completely new model for the allocation of resource teaching supports in mainstream schools. Rather than fixing the existing flawed system of resource allocations in primary legislation, the Government's preferred approach is to create anew model that will be fair and equitable and enable schools to meet the educational needs of all children on the basis of their need, rather than on the basis of their specific diagnosis. The underlying principle of the Bill is that students with special educational needs, including those with Down's syndrome, should be provided with the teaching supports they require to meet their full potential. It is in support of that basic principle that the Government has decided not to oppose the Bill on Second Stage.

The National Council for Special Education provided policy advice for the Minister in May 2013 which included advice that resource teaching supports be allocated to schools on the basis of their profiled need, rather than the diagnosis of individual children. In June 2013 the Minister appointed Mr. Eamon Stack, chairman of the National Council for Special Education, to head up a working group to develop a proposal for the recommended new model. This working group has almost concluded its work and is expected to report in March. The Minister has made clear his intention to allow for detailed consultation with all educational stakeholders, including Members of the House, in advance of the implementation of any new model. In addition to its recommendation for a new resource allocation model, the NCSE also fully addressed the central issue being addressed in the Bill in its policy advice, to which I will come back in more detail.

I would like to clarify some misconceptions which have emerged in recent reports.

Pupils with Down's syndrome are fully entitled to receive additional resource teaching support in schools under the terms of the general allocation model of teaching supports. This is the case if the child's educational psychological assessment places the pupil in the high-incidence disability category, which covers mild and mild to borderline intellectual disability. Pupils who are assessed as being within the low-incidence category of special need receive support through an allocation of additional teaching resource hours to the school by the NCSE. This category includes some children who have an assessed syndrome, including Down's syndrome, as well as children who have other low-incidence disabilities such as a moderate general learning disability, a hearing impairment or a speech and language disorder. Down's syndrome has not been designated as a high incidence or low incidence disability. Children with Down's syndrome may qualify for teaching support under high or low incidence provision, based on the severity of their general learning disability.

It is sometimes stated publicly in media comment or debate that pupils with Down's syndrome who are assessed as being in the mild general learning difficulty range do not receive or qualify for resource teaching support in schools. This is not the case. All primary schools receive allocations of resource teaching hours as part of their general allocation model teaching allocations to provide resource teaching and learning support to pupils who have been assessed as having mild general learning difficulties. Post-primary schools also receive general allocations to support pupils with mild learning needs. Pupils with Down's syndrome in the mild range receive additional teaching support from a school's general allocation in common with all other pupils in the mild range. Regardless of the manner in which resource teaching support is allocated to schools, resource teaching and learning support is available for all pupils with Down's syndrome in the same manner as for other children with assessed syndromes.

It should be noted that there is no qualitative difference between the resource teaching hours allocated to pupils under the general allocation model and those allocated by the NCSE on the basis of a low-incidence disability. Schools have the capacity to utilise and manage their teaching resources to best provide for the teaching needs of qualifying children. Each school uses its professional judgment to decide how the additional resource teaching time is used to support the pupils in the school and ensure all their individual needs are met. Contrary to what has been suggested in the past, it is not the case that pupils cannot receive individual teaching support under the general allocation model. Additional teaching time may be provided to pupils on an individual basis or in pairs or small groups as the school considers appropriate.

People often ask what the Department of Education and Skills has done to address these issues. The question of whether Down's syndrome should be classified as a low-incidence disability in all instances was raised and considered when the Department carried out a review of the general allocation model. That review recommended that research be undertaken to establish whether there is a sound and equitable basis for reclassifying Down's syndrome as a low-incidence disability. The Department also received a submission from Down Syndrome Ireland regarding this matter.

When the Minister for Education and Skills is revising or reviewing special educational supports, he is obliged to have regard to the advice and recommendations of the experts in relation to these matters. Under the Education for Persons with Special Educational Needs Act 2004, the NCSE has a formal role in advising the Minister on matters that relate to the education of children with disabilities. In 2012, the Minister asked the NCSE to provide comprehensive policy advice on how best to support students with special educational needs in schools. As part of the preparation of this policy advice, the NCSE was asked to consider the method of delivery of resources and the question of whether Down's syndrome should be reclassified as a low-incidence disability in all instances, regardless of assessed cognitive ability. In developing this policy advice, the NCSE considered the submission made by Down Syndrome Ireland and consulted that body in developing its policy advice.

As I mentioned earlier, the NCSE report on supporting children with special educational needs in schools has now been published and is available on the Department's website. The policy advice recommends that "a new model should be developed for the allocation of additional teaching resources to mainstream schools which is based on the profiled need of each school, without the need for a diagnosis of disability". The report also states that "if the Minister were to agree in principle to the development of the alternative model proposed, the NCSE will then proceed to the next phase and establish a working group to develop it". This working group has been established and its work is almost complete. The NCSE has also recommended that, in the short term, pupils with Down's syndrome who are in the mild general learning difficulty category should continue to be supported by schools' general allocation of resource teaching support in the same way as other pupils with a mild general learning difficulty. It has not been recommended that an exception should be made for children with Down's syndrome who are in the mild general learning difficulty range. However, the NCSE report expresses confidence that the introduction of a new allocation model will address the needs of all children with mild general learning disabilities, including children with Down's syndrome, who have additional difficulties and who can be supported according to their level of need in line with their learning plan process. In the meantime, the NCSE has advised that schools can differentiate the level of learning support granted to ensure available resources are used to support children in line with their needs.

This Government has been fully committed to protecting the level of investment being made to support children with special educational needs, at a time when there has been a requirement to make expenditure reductions in a range of areas. This area of spending has been prioritised above all other areas by this Government, despite the enormous pressures on all areas of public spending. There are over 10,700 additional teachers in schools supporting children with special educational needs. This is more than at any previous time. The number of comparable posts was 10,305 in the 2012-13 school year and 9,950 in the 2011-12 school year. These 10,700 additional teachers include the 5,000 permanent learning support and resource posts that have been allocated to all schools across the system.

Some 5,730 resource teaching posts have been allocated to schools by the NCSE for the 2013-14 school year to support pupils with low-incidence special educational needs. This should be compared to the NCSE's allocations of 5,265 posts in the previous year and of 5,175 posts in 2010. Provision has been made in the current school year to meet growing demand from schools for low-incidence special educational needs support. Some 480 additional new resource teaching posts have been made available to maintain allocations at their current rate. The Government has been increasing the overall number of resource teaching posts available in recent years. The new allocation model will, in effect, replace the provisions of the existing special education circular. The intention of the new model is that it will afford greater autonomy to schools to allocate resources to each child based on his or her individual needs, as opposed to being based on a specific disability categorisation. The Minister, Deputy Quinn, and I look forward to participating further in the debate on this issue with the members of the Oireachtas committee.

I thank again Deputy Finian McGrath for bringing the Bill to the House.

10:30 am

Photo of Michael KittMichael Kitt (Galway East, Fianna Fail)
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Sixteen Members have indicated they wish to speak and 75 minutes remain until the Minister of State will be called to reply at 11.45 p.m. following which Deputy McGrath will have ten minutes to make his concluding remarks. Under the new Standing Order the names of those who wish to contribute are taken as they come into the Chamber. Some names were given before I arrived in the Chamber such is the interest in this legislation. The next speaker is Deputy Maureen O'Sullivan. I will call subsequent speakers from either side of the House as that is the only way I can do this fairly. Deputies Keaveney, Pearse Doherty and Pringle on the Opposition side of the House have indicated they wish to speak and Deputies Corcoran Kennedy, Regina Doherty, Keating and Coffey on the other side of the House were the first four names I was given. Each Member will have ten minutes but I suggest Members could consider sharing their time if they so wish.

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
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It would probably be best if each speaker had five minutes.

Photo of Michael KittMichael Kitt (Galway East, Fianna Fail)
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Is it agreed that each speaker will have five minutes? Agreed. I call Deputy Maureen O'Sullivan.

Photo of Maureen O'SullivanMaureen O'Sullivan (Dublin Central, Independent)
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We have two very good documents in our State, one is the Proclamation of the Republic and the other is our Constitution. Both of them guarantee equality and we often refer to the principle of the Proclamation of "cherishing all the children of the nation equally". We seem to be committed to the principle of equality and treating people equally but the reality is that we are not equal. Children born with special needs are not equal with other children who do not have those special needs. Children with special needs have to be treated differently in order that they can reach some level of equality with children who do not have special needs. All their parents are saying is: "Give our children a level playing field". In order to ensure a level playing there must be active, positive discrimination in favour of children with special needs. Is cúis áthais dom é go bhfuil deis agam labhairt ar an mBille seo. Ceapaim go bhfuil sé soiléir nach mbeadh an reachtaíocht seo os comhair an Tí murach an obair a rinne an Teachta Finian McGrath. I want to acknowledge the work of Deputy Finian McGrath not only on this legislation on special needs but on his dedicated and his long campaign as a parent, teacher, principal and TD on the whole area of special needs education. He invited members of the Technical Group to join him on the plinth in the summer when he launched this Bill and the press were invited but none of its members turned up. That just shows the interest in the media in children with special needs.

The central point is that because Down's syndrome is not listed as a complex, low incidence disorder, some children with Down's syndrome are not entitled to resource hours. Because of that classification of Down's syndrome for some as a mild learning disability, some children are not getting the extra hours that they need. Added to that, the cuts have been harsh. At times of financial pressure and constraint why is it that the needy and the vulnerable have to suffer?

This Bill will give children with special needs the resources they need to get on the level playing field. I speak from having long experience of teaching in a school that had a very open admissions policy and was very inclusive of children with special needs. I know from that experience the difference that the extra hours and the resources make and did make to children with special needs. It was great and we all got so much joy out of seeing those children with special needs - children with Down's syndrome - achieving their junior certificate and going on further.

I wish to make some general points. A very complicated system is in place for mainstream schools which have children with special needs, even though the National Council for Special Education has given some clarity and clearance on eligibility with the special educational needs organisers. I want to acknowledge the work of principals who have to do a great deal of juggling with the various allocations they are given. They have hours for special needs assistants, learning supports and resource teaching. The special needs assistants are supposed to look after the care needs of a child and that includes hanging up the child's coat, bringing the child to the toilet, getting the child's books ready and so on. Special needs assistants go further and get involved in helping the child with his or her homework and classwork. We are missing out a great deal in terms of the potential of special needs assistants when we do not examine their role further. There is a post leaving certificate course on the care of the special child and those who successfully complete it get a FETAC award and other qualifications and we could examine the role in that respect. A student can have teaching support but not special needs assistant support because of the rules applying to special needs students with regard to extensive care needs and issues where they would be a danger to themselves and others, but there are children with needs not in those categories who could benefit from the support of an special needs assistant.

Learning support is based on the number of children enrolled - I refer to the general allocations - but I believe it should be based on the needs of the individual child and not on the number enrolled in a school, and then it comes down to resource teaching. It is very problematic for schools when it comes to ensuring that each individual student receives allocated support. That is due to the logistical and financial constraints schools face. For example, a student could be awarded five hours weekly tuition but the wherewithal to deliver that on an individual basis may not be possible. Therefore, team teaching or group resource teaching may be used but then there will be other issues. There are difficulties for mainstream schools, including children with special needs. To take the example of a mainstream school, I could have 25 students and be teaching a curriculum to teenagers who all have varying social and behavioural needs, and in that context including special needs students without the resources would be a disserve and detrimental to all of those students.

The term "educational apartheid" has been used. Some schools that are very successful in including children with special needs get a name for being so and other schools are opting out of that responsibility. I hope the working group will examine this aspect. Down Syndrome Ireland tells us that the cost of including Down's syndrome on the low incidence list is less than €1 million. It is a paltry amount. I want to make it clear that we need a simpler and more straightforward system to ensure that children with special needs of whatever type are adequately served by our system. I hope the working group will tackle that and that we get that system.

Photo of Marcella Corcoran KennedyMarcella Corcoran Kennedy (Laois-Offaly, Fine Gael)
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I wish to share time with Deputy Coffey.

Photo of Michael KittMichael Kitt (Galway East, Fianna Fail)
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Is that agreed? Agreed.

Photo of Marcella Corcoran KennedyMarcella Corcoran Kennedy (Laois-Offaly, Fine Gael)
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I commend Deputy Finian McGrath on bringing forward this legislation. There is not a family in the country that does not have somebody in the family who has Down's syndrome or who has a family friend who has had experience of it. When we are considering where we are today and what we want to achieve it is no harm to look back to see where we were 40 or 50 years ago. Looking back only to the 1960s people with Down's syndrome were almost automatically institutionalised with society shunning them and rejecting them because they were different. Being different in Irish society is not something that goes down very well. We can see that from the recent debate about comments on a television programme. We still have some way to go to be inclusive of people who are different in our society. Back in the 1960s many parents who loved their child felt they were protecting them in hiding them away rather than exposing them to what they saw to be the cruelty of the outside world and the bullying that they may have experienced.

When Inclusion Ireland was founded in 1961 it began to turn the tide of the way people were thinking. At that time consideration was not given to the fact that people could read, write and contribute to society. Of course, now we know so much more. The expectations were very low at that point. Considering putting children with Down's syndrome into mainstream education would not have been considered. The schools would have been seen as not being capable of dealing with them and also the school authorities might have felt that it would be detrimental to their reputation.

Thankfully, today mainstream education is available to all children with Down's syndrome. They can go through the education system, through colleges and expect to live long, productive and fulfilling lives for themselves. Having an inclusive education not only has excellent outcomes for the children with special educational needs but also for the children who do not have special educational needs. That has come across very clearly to me from speaking to the parents of children who have Down's syndrome and other disabilities but also from parents of children who do not. They find that it broadens the thinking of the child who does not have those needs and it makes them much more inclusive and considerate children, recognising that there are other people who are not the same as themselves in life. Now thankfully through being able to access mainstream education people with Down's syndrome can enjoy life.

We see this in the number of them living with a certain degree of independence, in employment and participating in, for example, events such as the Special Olympics. While this is fantastic, it must not be forgotten that they will need ongoing support from family, friends and services. It is also key that they can access education. If they do, so much more will be available to them.

The purpose of this Bill is to ensure recognition of Down's syndrome in its entirety, which I welcome. I also welcome the Minister of State's clarification in regard to low-incidence disabilities, which is an issue of great concern for parents who want individual resource teaching to be automatically provided to their children. It is important to recognise the excellent work being done by the agencies in this area. All of these agencies working together, as happened for the Special Olympics, will be of tremendous benefit to all concerned. This Government is caring and wants to ensure that every citizen in this country benefits from investment. The increased investment in disability services to date is good news.

I spoke recently to a parent who told me that when his child was born 35 years ago he and his wife thought it was the end of their world, but in fact it was the beginning of it. Through their lovely child their lives have been enhanced, and the fact that their child has been able to participate fully in life has meant everything to them.

10:40 am

Photo of Paudie CoffeyPaudie Coffey (Waterford, Fine Gael)
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I welcome the opportunity to contribute to this important debate. I commend Deputy Finian McGrath on his work on this issue and on the introduction of this Bill. I remind Members that there are advocates in government for disabilities, including Down's syndrome. I include myself and other colleagues in that regard. This Bill provides us with the opportunity to state that publicly. It is important that we recognise the advocates for people with Down's syndrome and their families, particularly Down Syndrome Ireland and the support it provides to such families.

International studies have proven that children with Down's syndrome can and will thrive when they attend mainstream schools in which they are provided with adequate resources. A wonderful young lady from my constituency named Grace recently graduated from a third level college. Grace has faced many challenges since the day she was born 25 years ago but with loving support from her family and structured support from her schools she has blossomed into a wonderful, educated graduate. Grace mother's recently wrote:

I never dreamed I would see this day when 25 years ago we were told, "Your daughter has Down's syndrome". Two days after she was born the paediatrician told us, "She will never amount to anything. The best thing you can do for your baby is to take her home and love her because on the great motorway of life she will never be anything but a clapped out mini: she will never be a jaguar." I will never forget those words. By God did she prove them wrong. From that day to this she has amazed and delighted us with her determination and her drive, her hunger for learning, her passion for living, her wit and wisdom, her beautiful nature, her glorious smile, her gentle and compassionate nature, her courage and strength in overcoming whatever life has thrown at her and she has had to cope with so very much, her love of drama and acting, her poetry and script writing, every one of her many achievements including junior certificate, leaving certificate and college and her wonderful ability to see the best and the good in everyone. That's Grace and Grace has Down's syndrome.
I believe children such as Grace need and must have the educational support that Deputy McGrath and others have outlined today. I am chairman of the board of management of a medium-sized primary school. I hear almost daily about the challenges being faced by principals and teachers in managing resource hours in the current system. For this reason, I welcome the review referred to by the Minister of State. It is long overdue. All Oireachtas Members should engage with this process to ensure that young children with Down's syndrome and young people with disabilities are given adequate supports and resources in schools to allow them to achieve their full potential.

I again commend Deputy McGrath on his work in this area. The Deputy can be assured that he has allies in this area within Government. We will continue to do what we can within the resources available to us. As stated by the Minister of State, despite the challenges faced by this Government, backbenchers on this side of the House have been fighting to protect and secure supports for the disabilities sector, particularly within the education system. We must not abandon our children. We must do our best to support them in every way possible. Debates such as this will certainly assist in that respect. This is not about politics: it is about society and the supports we must put in place to assist every member of society, regardless of disability or syndrome, so that, like Grace, they can reach their full potential.

Photo of Colm KeaveneyColm Keaveney (Galway East, Fianna Fail)
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I welcome this Bill and compliment Deputy McGrath on its introduction. It is a short Bill but one that, if enacted, will have a profoundly positive effect on those benefiting from it. While there have been many improvements in how those with disabilities are treated in our society, we still have a good distance to go. In the past, and to an extent today, disability was treated as a charitable concern. Prior to the rise of the welfare state, it fell to charitable activity to support those with disabilities. However, this approach is no longer sufficient. The foundation documents of this State, the 1916 Proclamation and the Democratic Programme of the First Dáil, spoke of cherishing all of the children of the nation equally and of the "aged and infirm" being "entitled to the Nation's gratitude and consideration". This language may be somewhat antiquated but the sentiment remains a noble one. We must replace the charitable approach with one centred on those noble sentiments and founded on human rights. Every child has a right to assistance, in a manner appropriate to their particular needs, so that they can have a fair chance of reaching their potential, whatever that may be. A child born with a disability is entitled to the support of their community and of wider society through the services provided by the State. This burden cannot fall on their families alone.

Like all other children, children born with Down's syndrome vary in their abilities and achievements. By right, they should be entitled to whatever aids and supports they require to allow them to achieve their potential. Advances in medical care have led to longer life expectancy for those with Down's syndrome. This is to be celebrated. It also means that the importance of lifelong living and learning needs to be realised.

I welcome the Government's decision not to oppose this Bill. I hope this decision reflects a genuine commitment on the part of the Government to support its prompt enactment and implementation of its provisions. The Government's sincerity in expressing support for the Bill has been thrown into some doubt by reports in yesterday's media that a system giving schools power to decide how special needs teaching posts are allocated is likely to take precedence over its enactment. I hope that no action by Government will endanger the automatic entitlement to resource teaching that this Bill grants to all children with Down's syndrome. Yesterday's media reports would seem to indicate that the Down's Syndrome (Equality of Access) Bill will be superseded by a new system before it can become law. The Minister's spokespersons, in their briefing on this Bill, suggested that it would be rendered moot under a new allocation model. It would be better if the Minister of State were to be honest and clarified the position in this respect. If the Government is genuine in its support for Deputy McGrath's worthy Bill, it should indicate when it plans to move it through the remaining Stages in this House and in the Seanad. I have been assured by my party Whip that we will co-operate with the Government to secure the speedy enactment of this Bill. I would appreciate if the Minister of State could provide some clarity in this regard.

The Minister's proposals reported in the media yesterday reflect, in the main, the policy advice published by the National Council for Special Education. We recognise the urgency required in addressing the need to overcome the overt or covert barriers some schools erect to prevent or discourage parents from enrolling children with a disability.

We will support the Minister on all Stages of the Bill through to enactment. While the Bill poses some financial challenges for the State, the dedication and commitment of everybody who has spoken this morning would best be represented in our support for the progress of the legislation through all Stages. I thank Deputy Finian McGrath for bringing the Bill to the House and look forward to supporting it all the way. I ask the Government to demonstrate the sincerity of its professed support for it by facilitating its speedy enactment. We, on this side of the House, will co-operate in that regard. We must not let the opportunity pass to improve the lives of some children and their families.

10:50 am

Photo of Regina DohertyRegina Doherty (Meath East, Fine Gael)
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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.

Photo of Michael KittMichael Kitt (Galway East, Fianna Fail)
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I call Deputy Michael Colreavy who is sharing time with Deputy Pearse Doherty.

Photo of Michael ColreavyMichael Colreavy (Sligo-North Leitrim, Sinn Fein)
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I commend Deputy Finian McGrath for introducing this legislation. In any civilised society there are some fundamental principles to which every single citizen must be entitled. Among these fundamental principles are: the right of access to quality health care, when needed; the right to live in a warm, secure home; the right to adequate clothing and nourishment; the right to a level of education necessary to permit the person to achieve the maximum possible level of personal and occupational achievement; and the right to love and be loved and to be treated with respect. People with special needs, particularly children, must have these fundamental principles applied.

Recent Government budgetary choices and actions have undermined these fundamental principles, in particular, the withdrawal of discretionary medical cards from people with a long-term, severe and sometimes terminal illness; the reduction in respite care services; and the policy decision that children with autism spectrum and other psychological disorders are not "disabled" enough to qualify for carer's allowance, the respite care grant, special needs assistants and special needs resource teaching hours.

The overriding determinant in Ireland today is not by how much we can improve the living and learning potential of vulnerable children but by how much we can cut services to remain within budget and still hope to win the next election. The so-called Celtic tiger appears to have destroyed more than the economy; it has also destroyed decency and compassion. This is not the Ireland dreamed of by Pearse, Connolly and MacDiarmada and the founding fathers.

Deputy Finian McGrath's Bill seeks to give all children with Down's syndrome an automatic entitlement to resource hours, regardless of assessed need, with the number of hours to be determined by an allocation model using the level of learning disability. I fully understand why the Deputy has brought forward the Bill. Like me and all other Deputies, he has experience of being approached by parents and teachers of Down's syndrome children with severe learning disabilities who have had resource hours refused or reduced. I can see why people would want and need a guarantee of a minimum number of hours for children with Down's syndrome and all other children, irrespective of the diagnosis, who require this support.

Sinn Féin believes the provision of supports to enable children with disabilities to reach their full potential should be a legal right, not a privilege to be granted or withheld at the whim of a Government or any budget holder. It is wrong that any child with Down's syndrome who needs resource hours should be refused them or have the required number of hours reduced because of budget choices. That should not happen. This is the key point. If the Government, in acting on behalf of and in the name of the people, agrees with the fundamental principles of a civilised democracy, the right to a level of education necessary to permit the person to achieve the maximum possible level of personal and occupational attainment, legislation must be brought forward to ensure this right is enshrined and protected in law. It also requires a legal guarantee that adequate funding will be made available to ensure the assessed numbers of hours will not and cannot be pared back because of resource shortages or budget choices.

I thank the Minister of State, Deputy Seán Sherlock, for his statement that the Minister for Education and Skills is obliged to have regard to the advice and recommendations of the experts in these matters. The real experts are with us today in the Visitors Gallery. They are the ones to whom the Minister and the Department need to talk.

11:00 am

Photo of Pearse DohertyPearse Doherty (Donegal South West, Sinn Fein)
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Cuirim fáilte roimh an mBille atá curtha chun tosaigh ag an Teachta Finian McGrath ó thaobh an cheist iontach tábhachtach seo. Ba mhaith liom fosta mo chomhghairdeas a chur in iúl do thuismitheoirí na bpáistí le siondróm Down a bhí ag eagrú ar fud an Stáit ionas go mbeadh an cheist seo i mbéal an phobail agus pléite sa Dáil inniu. They deserve our commendation for the way in which they have carried out the campaign to ensure the rights of children with Down's syndrome will be central stage. The number of Deputies who wish to speak in this debate is testament to their hard work.

I welcome the opportunity to support the passage of this legislation to Committee Stage. Sinn Féin is of the view that the Bill needs to be amended on Committee Stage. I note that in his concluding remarks Deputy Finian McGrath referred to other children with more rare syndromes who needed to be accommodated. Without a shadow of doubt children with Down's syndrome have proved that the list system is inequitable. The Minister of State has said the Bill will be permitted to progress to Committee Stage when it will be discussed in the context of the recommendations of the NCSE. He has also said the stated position is not to tinker with the list. I am concerned about what will happen in the next four or five years while the recommendations of the NCSE which are the right ones in the long term are being rolled out.

Professor Sue Buckley is the expert in this part of the world on Down's syndrome. In her contribution at the Joint Committee on Education and Social Protection she stated:

If I had a five year old with Down's syndrome, I would be very worried. There is a danger that there will be a group of children who are not getting enough support who will struggle and fail quite quickly in school before one gets to that point.
I think we are all agreed on the NCSE's long-term recommendations, but we need to deal with the short-term issues. Will the Government make a decision to ensure children with Down's syndrome and those children with other rare syndromes will receive the resource allocations they require?

I again refer to Professor Buckley's contribution at the joint committee on the definition of IQ, which is at the centre of this discussion. She said:

I emphasise that IQ is no longer used in many countries, including the United Kingdom. Most studies show that the distribution of IQ for children with Down's syndrome is in the average range of 50 to 55, but it goes down with age. This needs to be considered when using measures of moderate or mild intellectual disability as main criteria for support.

In this specific profile the children experience more delay in spoken language development and working memory development than would be predicted for their IQ. A child with Down's syndrome who is eight years old may have a non-verbal IQ of a four year old, but his speech, language and working memory skills will be more like those of a two and a half year old. In other words, their spoken language and memory development do not even keep up with their ability to understand and learn things they see. I could talk about this issue all afternoon as it is a very important one.
We need to deal with how the system works by introducing amendments on Committee Stage. For example, Professor Buckley has encountered parents who do not toilet-train their children and stop providing them with stimulation because they want to ensure the child is given sufficient help in the school system, which is the case if the child is regarded as low-functioning. This is one of the unintended consequences. She has said she is a professional and that this would make her want to cry. Other parents have testified that this is what happens. Parents believe they need to make their child as bad as possible in order that they can receive sufficient support. Deputy Regina Doherty referred to a parent who had asked why the system was making parents feel like this. It is abnormal for any mother or father to wish his or her child to fail in order that he or she can get the necessary supports from the State and which they deserve.

I have received a letter from parents who write about their four and a half year old child with Down's syndrome. They want the same for their son as their other two children. They write about the child's health difficulties, including open heart surgery and the fact that the child missed out on the first year of early intervention. The child is a fighter and resilient and approaching his psychological assessment. They say one would presume they would be hoping for the child to perform very well, for his assessment to confirm the progress made and for him to be assessed as having a mild learning disability. However, this is far from the case. Owing to the complete lack of resource hours available for those children considered to have a mild disability, the parents were hoping for a diagnosis of a moderate learning disability in order that their son would have access to resources to give him that necessary boost, a chance of holding his own in mainstream school. Coming up to the assessment they became more distressed about the possible implications of a mild diagnosis, especially with the prospect of there being no resources available in mainstream school. This would mean that they would have to send him to a special school. They describe the scene of their two children going to the mainstream school while a taxi collects their Down's syndrome child to take him to the special school one hour away. No parent should be trying to buck the system in order to ensure his or her child fails in the assessment. The international evidence is available.

Let us not bury this Bill on Committee Stage. I ask the Minister of State to confirm that there will be a change in September for children with Down's syndrome because that will be the test of the Government's generosity. I acknowledge that many backbenchers on the Government side of the House are arguing in the same way.

11:10 am

Photo of Derek KeatingDerek Keating (Dublin Mid West, Fine Gael)
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I am pleased to have the opportunity to speak and to share time with Deputy Joe McHugh.

I congratulate Deputy Finian McGrath on his journey in preparing and bringing the legislation to this stage. I have known Deputy McGrath for a number of years. Often times when we meet, our chat centres around the needs of disability and the needs of representative groups of disabilities. We have both been on that journey, as have many other Members, for many decades.

When the Constitution was written and adopted by the Irish people, no part of it excluded from education people with special needs, people with disabilities or people who have Down's syndrome. It is only right, therefore, that we should have arrived at this point in time. When I think of people with disabilities and I think of people with Down's syndrome, it is interesting that a considerable number of people from my constituency express not only interest but support for the Bill. I am happy to affirm that here today. I expect that is not unusual.

A friend of mine, a neighbour, whom I have known for most of her life, Maeve Phillips from Beechpark in Lucan, is one of those people who, when I meet her, and despite the responsibilities of being a Government Deputy, everything is forgotten. A smile comes to one's face immediately and then everything is put in perspective, not because she has Down's syndrome but because of the joy she brings. Maeve Phillips, for her young years, has something that I and Deputy McGrath and I suspect nobody here, will ever have, an Olympic gold medal. That reminds me of that very special year that was 2003 - more than ten years ago - when we celebrated what the movement wanted us to celebrate then, that word ability replacing disability. We saw that ability in Maeve Phillips and in so many other people.

I am reminded also of another person, who is not a constituent, Mark Smith. Until this morning when Deputy Paudie Coffey alluded to one of his constituents I thought Mark Smith was the first and only person attending third level education in Maynooth from Ballyfermot. Subject to him passing his examinations, hopefully in the near future, he will be the first person, that I know of, who has Down's syndrome with a degree, something I do not have. Again, it reminds me of that wonderful ability and joy, that people can overcome what we perceive to be disability.

I am delighted the Government has taken the legislation on board. Often that co-operation is not written about. I congratulate the Minister for taking that step and the Minister of State who is present. I am reminded of that because as a member of the Constitutional Convention many references were made to that at the Constitutional Convention last weekend. I cannot think of a better example of that co-operation than the willingness of everybody who was engaged on that journey that began with Deputy Finian McGrath and reaching this stage today and the support of the Government. That is very important. When legislation benefits a certain sector in society it benefits us all, not just the people who are enshrined in the legislation but we benefit as a people and as a society. I am very happy to support the legislation.

Photo of Joe McHughJoe McHugh (Donegal North East, Fine Gael)
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In the short time available I wish to give an example of a young man, a friend of mine, who spent eight years in national school. He got support at national school through the generosity of the Down's syndrome association and through private support from his family. The Department of Education and Skills did not support any form of special needs assistance or general allocation learning support hours. His significant memory of national school, which was a negative one, was on his tenth birthday when he was bullied, an issue we should be conscious of when speaking about children with disabilities, as that day he was told he was disabled. That was the day he found out he was disabled and it was the first time he had to deal consciously with the fact that he was different in other people's eyes, even though he felt he was, and is, no different today in his own head. Special needs support and general allocation learning support hours help children with disabilities to deal with their condition.

He spent four years in secondary school without any support. In his final year, leaving certificate year, he got a special needs assistant, SNA. He was fortunate to have a very good SNA with the skills not only to help him with the day-to-day ritual of packing school bags, getting to the next class, speeding up and help with language. In fact, he ended up studying German for his leaving certificate. This young man also had help from his parents. His mother spent four hours per night helping with his homework and his sister also helped. He had massive support outside the system. The reality is that not everybody is in the same position. For people coming up through the system his argument is that if support was inbuilt at an earlier stage, through primary and secondary school, life would be easier. All people want a level playing field. They want life to be easier. Parents of children with Down's syndrome are no different from parents of other children, they want the best for their children and to have the best opportunities and to be treated equally in society.

Today, this young man is in a full-time job. Having got his leaving certificate he is able to carry out his role as an Irish citizen in the same way as anybody else. His strong message to legislators and those who make decisions in the Department as to whether general allocation learning support hours should be provided for people with Down's syndrome, is an overwhelming "yes". He said he was fortunate in that he had family support. He had a mother who was able to sit down for four hours per night and a sister who helped him day in and day out. While he had all this support he is not naive enough to think that every family is in the same situation.

The example I gave is an anecdotal one. It was the journey of one man. Advocates and practitioners, as Deputy Michael Colreavy pointed out, are the people who know and they have put forward many proposals. I commend Deputy Finian McGrath for bringing the Bill forward. As a former máistir scoile he knows the story and has his own experience in this area and, obviously, that experience needs to be shared.

I thank Deputy Derek Keating for sharing time. I recall an advertisement logo may years ago, "all different, all equal". That is something of which all 166 Members are conscious. We know we are all different but we strive to ensure that people have a level playing field and are treated equally and in a just way. We need to persevere with this and to give support to children with Down's syndrome. They need help along the way and when they get it they rise to the opportunity and can strive, be it in the workplace or in the sporting arena, in the same way as any other person with different abilities.

Photo of Thomas PringleThomas Pringle (Donegal South West, Independent)
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I welcome the Down Syndrome (Equality of Access) Bill 2013 which would give recognition to Down's syndrome as a "low incidence disorder" and in doing so would ensure that adequate provision was made for resource teaching hours to be allocated to pupils with Down's syndrome. I congratulate my colleague, Deputy Finian McGrath, for bringing forward this Bill which has brought about much discussion and awareness of the issue.

I also acknowledge and welcome that the Government has allowed this Bill to proceed to Committee Stage. This Bill is vital to ensuring that when recognising this condition as a "low incidence disorder", meaning disorders that automatically qualify for resource teaching hours, that quality educational provision is provided for these children in mainstream schools.

As a member of the All Party Group for Supports in Mainstream School for Children with Down's syndrome, I am committed to this issue and from speaking to concerned parents in Donegal on a regular basis, I understand the implications of not having Down's syndrome recognised as a low-incidence disorder and the urgent need for these children to receive resource teaching hours so that their specific educational needs may be addressed. Currently for Down's syndrome children with mild learning disabilities, special needs teaching comes from set hours that each school must share out to all pupils with less severe learning difficulties. This causes many complications, as was noted by the report from the Ombudsman for Children, Emily Logan, last May when she criticised the Department's response to previous complaints about the policy.

I have been working on this issue for some time and have pressed the Minister and the National Council for Special Education, NCSE, on this issue many times. Time after time I was informed that, as highlighted in the NCSE report on supporting children with special educational needs in schools, children should be allocated additional resources in line with their level of need, rather than by disability category. This effectively means that Down's syndrome should not be recognised as a low-incidence disorder. Instead, the report recommends that under the new resource allocation model proposed by the NCSE in its report, children should be allocated additional resources in line with their level of need, rather than by disability category. In fact, a senior figure from the NCSE contacted me directly only last October and stated:

We could find no evidence to suggest that children with Down syndrome, with mild general learning disability, should be treated differently to other children with mild general learning disability who also have additional difficulties. Rather, our research strongly suggests that resource allocation should not be linked to category of disability but rather should be based on the needs of children.
Only in December, the Minister informed me that the NCSE had established a working group to develop a proposal for a new tailored allocation model in line with this approach. Then completely out of the blue, we hear that the Minister and Cabinet have decided to do a complete U-turn with a spokesperson for the Minister being quoted as saying that they have allowed the Bill to go the Oireachtas Committee on Education and Social Protection and are "adopting this approach in the context of work the National Council for Special Education is doing to find a new model of allocating resources to schools in relation to special educational needs." Call me sceptical but I have to question what motivated this decision and how it suddenly fits right into the work of the NCSE.

Do not get me wrong, I welcome the idea of a tailored model based on the needs of children and recognise that all children, including children with Down's syndrome, have varying levels of educational needs and that children with Down's syndrome need more attention than others. In many ways, I welcome the direction that has been taken in this regard. What I have had problems with is the children who are left in the dark while this new approach was being devised as it certainly will not happen overnight. That is why I have supported Down's syndrome being recognised as a low-incidence disorder.

The Minister says an exception should not be made for Down's syndrome but it has been made for other disabilities. Down's syndrome is more low incidence than autism, for example, while autism is recognised as a low-incidence disorder, which is quite nonsensical. Nonetheless, parents across the country with Down's syndrome children have been asked to wait and be patient while the new model is being devised during which time their children fall further and further behind. I reiterate that while I welcome the move to accept this Bill, I would like an honest explanation for the change of heart because it seems like a ploy to keep us all quiet and the Bill will then be forgotten. Perhaps there are more cynical reasons for it. Down Syndrome Ireland, Deputy Finian McGrath and I and so many others have worked so hard on this issue so I would like to hear what will happen next and when and how it will fit in with the new tailored model.

11:20 am

Photo of Jerry ButtimerJerry Buttimer (Cork South Central, Fine Gael)
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In welcoming the Bill, which seeks to grant all children with Down's syndrome automatic entitlement to resource teaching hours, I compliment Deputy Finian McGrath on bringing the Bill to the House. In particular, I pay tribute to Pat Clarke of Down Syndrome Ireland for the way in which he has engaged with all of us. He is a model of how we can do business. I come to this debate with experience garnered from my years as a citizen with many friends whose children have Down's syndrome, as a schoolteacher and as a member of COPE Foundation, which is the patron of special schools in Cork city.

The basic tenet of this Bill is entitlement to provision but we as parliamentarians and legislators must look at what is behind the text of the Bill to see how it would be implemented on the ground and whether it would have the desired effect that is in keeping with the spirit of the Bill. That is why it is important that it be referred to the Oireachtas Committee on Education and Social Protection.

It is important that in supporting this Bill, we make reference to other pieces of legislation enacted by the House over the past number of years including the Special Educational Needs Act and the Disability Act, which contains provisions on the assessment of needs. We should also make reference to the national disability strategy, the focus in progressing disability services for children and the advice of the National Educational Psychological Service, the INTO and the Psychological Society of Ireland. Underpinning all of the Acts mentioned above and advice coming from all national experts and teaching organisations is that fact that for additional resources to be meaningful and optimal, they should be individualised and personally tailored to meet the unique learning and development needs of the individual child. We are talking about the individual needs of the child who is a person in his or her own right. Yes, resource teaching hours should be available to all children with Down's syndrome but the work done by the resource teacher with that child should be designed on the basis of thorough assessment throughout delivery based on best practice and reviewed on a regular basis. There is also an implicit, and I would argue, explicit assumption that such work should be agreed with the child or the parents of the child if appropriate. There needs to be involvement with the parents or guardians of children in this case. Resource teaching hours are important but it is essential that we contextualise the totality of education provision to a child with Down's syndrome. The individual education plan should become an essential and real educational passport for all children with special needs, not just children with Down's syndrome.

I have noted the comments of the Minister earlier this week when he stated that the NCSE is expected to bring recommendations in the next two months on a revised system of allocating resource teaching hours to schools for children with disabilities which could replace the system in place since 2005. This new model should include the automatic entitlement but should also include an automatic built-in audit and management system to ensure that the resources are being used to maximum effect.

Last week saw the passing of Paul O'Donoghue who with his mother took legal action in 1993 against the State to assert his constitutional right to an education. Paul and his mother were courageous and determined and through their actions opened the door for many others with severe and profound disability to access an education, which is their right. What was crucial and central to that legal action and what I believe is central to the debate before us today was the definition of education that was used and an acknowledgement that all children are entitled to an education that is suitable and adaptable to meet their needs. For me and others, education must not be defined narrowly as the three Rs. Instead, we must broaden that definition.

There are those who would turn this into a political football. Deputy Finian McGrath, to be fair, has not done that. It should not be a political football. It should be an honest and holistic debate on what is best for the children who need it and their families. Let us have that debate in the committee to which it has been referred. I commend Deputy McGrath on this Bill, which will provoke a very good and honest debate from which change will result which will be to the betterment of all concerned.

Photo of Michael KittMichael Kitt (Galway East, Fianna Fail)
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I call Deputy Catherine Murphy. I ask for brevity because there are a number of speakers before the Minister of State is called.

Photo of Catherine MurphyCatherine Murphy (Kildare North, Independent)
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I commend Deputy McGrath on bringing this Bill forward. I know there is much discussion about the Friday morning sittings of the Dáil but Deputy McGrath would make the point because this issue is very close to his heart that this will make the entire five years of this Dáil term worthwhile for him. I know he is a tireless crusader on disability rights and has done work in the area of Down's syndrome in particular.

The Bill is fundamentally about equality. People should be equal before the law and have equal opportunities regardless of the circumstances into which they are born or what they are born with. For some people, achieving equality is more difficult than others. The State has a duty to create a balance to give the optimum prospect of equality, which is what is being sought here.

Down Syndrome Ireland, DSI, sent Members a briefing document, which is worth noting. This issue appears to be complex. Most parents of disabled children who end up in mainstream schools expect supports for them as an automatic right. According to DSI:

Children with Down syndrome require the diagnosis of a second disability from the "Low Incidence Disability List" before receiving Resource Teaching Hours, most children with Down syndrome have a second disability but there are approx. 200 children with Down syndrome who do not have this vital education support...

Low Incidence Disabilities are disabilities that occur in less than 1% of the population, Down syndrome occurs in 0.2% of the population. Down syndrome is in fact a "Low Incidence Disability" and should be included on the Department of Education's list of "Low Incidence Disabilities"....

The cost of including Down syndrome on the "Low Incidence Disability" lists is less than €1 million.
An investment of €1 million would be quickly recouped over the lifetime of sufferers if they were enabled to be the best they could be. That means giving special attention where it is required.

Deputy Doherty referred to diagnosis. I have frequently encountered parents who want to hope for the best in the context of a diagnosis and psychological assessment but they are given the worst outcome, and that is the most awful position in which to put them. This additional burden cannot be placed on them because there are no supports or because the Government is trying to limit them. Getting a place in school is not the same as getting equal access to education. Mainstream education is not only about the social benefits; it must be about educational benefits.

The Lisbon treaty contains the EU Charter of Fundamental Rights, which provides for the right to education for all. Every time we have debates such as this, it brings into sharp focus the fact that the Government is spending the equivalent of the entire education budget on servicing the national debt. The result is that we are talking about cutting resources for services that should be a guaranteed right.

11:30 am

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
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Hear, hear.

Photo of Catherine MurphyCatherine Murphy (Kildare North, Independent)
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We have to fight that, because the users of these services are the ones who are paying the price, and that is just not right.

Photo of Joan CollinsJoan Collins (Dublin South Central, People Before Profit Alliance)
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I am pleased to support this simple Bill, which will resolve a problem for children with Down's syndrome and meets the concerns of parents. The use of the phrase "equality of access" in the Title says it all. It will not cost a fortune and the figure suggested is less than €1 million. We can contrast that with the cost of pensions for former taoisigh, Ministers, Presidents and judges, which amounted to €15 million in 2012. A sum of €1 million is all that is needed to help these children who need to access the education system.

I am not surprised by the Government's position. It will allow the Bill to pass Second Stage, but the Minister of State said the Minister was awaiting the model that will be proposed by the NCSE and I am a little cynical about this. Members have attended meetings with parents of these children in the audiovisual room. They have been canvassing for years not just to have Down's syndrome recognised as a complex low-incidence disorder but to right the wrong whereby it was taken off that list. They have been fighting ever since to restore it to the list to get the necessary resource hours. That must be recognised, and the Bill provides for Down's syndrome to be restored to the list. If the NCSE's new model for allocating resources houses is based on disability rather than assessment and so on, the inclusion of Down's syndrome on the list will put it in the reckoning as a complex low-incidence disorder. It is crucial that the Bill be enacted quickly in order that those who need resource hours now, next week, the week after or next year, get them. We should not spend another six months discussing how to change the model and allocate resources.

Resourcing is the key issue because, far from protecting the most vulnerable, which surely includes children with intellectual disabilities, the Government has systematically targeted them. The cumulative annual reduction in the disability allowance amounts to €847 since 2008, while there has been a 15% reduction in resource teaching hours since 2011, 1,900 children are awaiting an assessment by primary care occupational therapists and 763 children must wait six months or more for an assessment of need. That is outrageous in the context of our so-called Republic and giving fair access to education to all. The Government's strategy is to cut spending by making it more difficult to access payments and supports. The preoccupation with diagnostic tests to determine access to services and supports means a return to the former medical model of disability, the exclusion of people with disabilities and a straightforward denial of the right to independent living. Families are forced to pay for expensive medical assessments in the private sector because of the waiting lists for assessment in the public system. It emerged recently that more resources are invested in children with disabilities in wealthier areas, which is outrageous. This is a political issue, contrary to what many Government backbenchers said.

I congratulate Deputy McGrath on introducing the legislation, which should be enacted as soon as possible rather than waiting for something else to be put in place down the line.

Photo of Clare DalyClare Daly (Dublin North, Socialist Party)
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It is incredible that we are discussing this issue because, on the one hand, it affects such a small number of children, but on the other, if it was addressed, it would be life-transforming for them. We should all take cognisance of the fact that an 18- or 24-month delay in the life of a child cannot be compensated for later in life. Every party and Member knows this anomaly exists and would like it to be addressed, but that is not the issue; the issue is whether the legislation and the Government's response to it will address the concerns of parents.

I refer to a letter from a constituent:

I'm a 38 year old mother of a two year old boy that has Down's syndrome. I never thought in a million years I'd find myself writing to a member of parliament. Then again, I never thought I'd end up being the privileged mother of a boy with special needs. Silly me thinking "Ah sure I'm sure we'll get plenty of help". Little did I know. I was naive enough to think that "Sure isn't every child's basic right to get a proper education to reach their full potential". I intend to send my son to a mainstream school where his siblings attend and also other children within our community but I really fear that he will be lost in the system.
That is the reality for children who do not automatically qualify for additional resource teaching hours. That is the nub of the issue. She goes on to say:
This discrimination and inequality needs to be addressed with urgency. I remember someone once said to us "Oh you're going to have to fight for everything". Do we honestly have to fight for something so basic? Gosh we really do have our work cut out for us, don't we?

The challenge is to ensure that, at least in respect of this issue, the parents of children with Down's syndrome will not have their work cut out for them.

Drafting this legislation was a great move on the part of Deputy Finian McGrath and it was a welcome twist of fate when it was chosen, by means of the lottery, to be taken today. This is the only mechanism we have at out disposal, as Opposition Deputies, in trying to bring forward necessary reforms. That is what Deputy Finian McGrath is attempting to do and I am delighted his legislation was chosen for debate. Having said that, it is absolutely ridiculous that legislation needed to be introduced in order to have this matter addressed. Legislation is not needed. All that is required in order to place Down's syndrome in the low-incidence category is the signature of the Minister for Education and Skills, Deputy Ruairí Quinn. The Minister of State spent most of his contribution referring to the overall changes in the area of special needs education which the Department was considering. That is fine. He should go off, do his work and then return when it is ready. In the meantime, children with Down's syndrome should not be left behind. If there is a need to introduce overall changes, they should be introduced for everybody. That is the nub of this matter.

I honestly was going to spend my contribution welcoming the fact that the Government had decided to support the Bill and stating the next step would involve keeping the pressure on. Reading between the lines of the Minister of State's speech, I am not at all convinced about the Government's approach. I see what is being done as a stunt to get its own backbenchers off its back. The approach seems to be to pretend that it accepts the Bill and then refer it to the relevant committee. I am not saying this to have a go at anybody, nor do I say it lightly; I am saying it because that is the reality. People such as the woman who wrote to me are going to be obliged to wait. The Minister stated yesterday that there would be no move until 2015. There are children with Down's syndrome who are due to start school in September and in order to qualify, they must apply by March. Unless some miracle of a type never previously seen in this House occurs, the legislation will not be passed by then.

Will the Minister of State direct his Department to deal with this matter and place Down's syndrome in the low-incidence category in the interim? It was indicated that the Minister for Education and Skills had been named as a respondent in a High Court case to be heard next Wednesday. The case is on precisely this issue and being taken by two parents. If the Department is really going to address this issue and if it really is intent on shifting its policy in the context of Down's syndrome, will it instruct its legal counsel to withdraw from the proceedings and seek to resolve the issues with the parents involved, or does it intend to tie the State up in an expensive legal challenge involving moneys which could be spent on the children to whom I referred and who are due to start school in September? I am delighted that the Government is not opposing the Bill. If that is to mean anything, however, the test will be what happens next and what will happen on Wednesday in the High Court.

11:40 am

Photo of Mick WallaceMick Wallace (Wexford, Independent)
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I will be brave and try to follow the contribution of Deputy Clare Daly. However, my contribution will be nowhere near as good, for which I apologise in advance.

It is welcome that Deputy Finian McGrath has made this a matter of public debate once again. Matters of this nature tend to slip out of notice or drag on and, as a result, children lose out. In addition, ground that it is not possible to make up is lost, which is very unfair. Many parents see bureaucracy getting in the way of fairness for their children and find it difficult to comprehend that this is the case. A constituent of mine, Dr. Tadhg Gleeson, wrote to me about this matter over a year ago and again in recent days. He has indicated that he finds it difficult to understand why, given the low number of children involved, there is such obstinacy in achieving fairness in this matter. He has further informed me that Down's syndrome is both complex and low incidence. He states that it is complex in that it affects every cell in the body, causing multiple disabilities which can influence the ability to learn and low incidence in that it affects only one in 546 children. He adds that for the purposes of comparison, it should be noted that autism spectrum disorders affect approximately one in 100 children and that such disorders are listed as low incidence.

Parents who have applied for resource hours to be allocated to children with Down's syndrome have been asked whether there is anything else wrong with them. It must be difficult to have to deal with questions of that nature. Surely that these children have Down's syndrome is enough to be going on with for their parents.

There is both discrimination and inequality in this matter. The level of inequality has increased dramatically in recent years. What is happening is adding to it; it is discrimination and amounts to inequality for some. My constituent, Dr. Gleeson, says there is a need to deal with the issue as a matter of urgency. If, as Deputy Clare Daly pointed out, we are going to be obliged to wait for the legislation to be enacted, the children involved will lose out to an even greater degree. Perhaps it is time to state they have lost enough already. It will be outrageous if they are not in a position to have resource hours allocated to them next September. The Government must include Down's syndrome on the relevant list to ensure these resource hours will be allocated. It is to be hoped that, in the aftermath of this debate, the children involved and their parents will not be obliged to wait long.

I refer briefly to the issue of medical cards. While I appreciate that this matter does not come within the remit of the Minister, he is in a strong position to raise it with the Minister for Health. According to Down Syndrome Ireland, approximately 1,000 children with the syndrome are at risk of losing their discretionary medical cards. That is outrageous. Yesterday thejournal.ie featured an interview with the mother of a young boy who has Down's syndrome and lost his medical card. She stated her son had 13 associated conditions, including a cardiac problem and acute asthma. It costs her approximately €2,500 a month to cover his various medical needs. She stated that while the medical card would not eliminate all of this, it would help a great deal. We can discuss new models and structures until the cows come home, but we must take action now in order to address the inequality and unfairness attached to this issue.

Photo of Peter MathewsPeter Mathews (Dublin South, Independent)
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We are running very short on time. I ask the remaining speakers to be concise in their remarks because the Minister of State and Deputy Finian McGrath must both reply to the debate.

Photo of Shane RossShane Ross (Dublin South, Independent)
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I will be brief.

I congratulate Deputy Finian McGrath on introducing the Bill. When I heard that it had been accepted by the Government, my understanding was that its provisions would be implemented at an early date. I was disappointed, therefore, when the Minister of State said, "I wish to make clear that the Government does not intend to oppose the Bill." That does not mean that he is accepting all of the clauses and provisions contained in the legislation. What we are witnessing is a subtle political ploy. The Government is going to refer the Bill to the relevant Oireachtas committee and let it take its place in the mix of the committee's work, which is a great pity. What is being done is misleading and I presume the aim behind it is to satisfy vested interests. It is also designed to satisfy the lobby group, the members of which are in the Visitors Gallery, but it is not a promise that the hours they so badly need will be allocated. Apparently, the allocation of the necessary hours would give rise to a cost of €1 million. That is equivalent, perhaps, to the cost of three senior officials of the National Treasury Management Agency.

I do not understand why the Minister of State could not have accepted the Bill and stated it will be implemented tomorrow.

11:50 am

Photo of Tommy BroughanTommy Broughan (Dublin North East, Labour)
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I warmly commend Deputy Finian McGrath for bringing forward the Bill. It is fair to state he has a good consistent record of supporting people with disabilities and their families. He has been particularly tenacious in supporting people with Down's syndrome. I also wish to put on record the support of the Acting Chairman, Deputy Peter Mathews, for the Bill and for the urgent need for resources to implement it. The fact he will not have an opportunity to speak shows the interest of Deputies in the Bill. The debate could easily have continued for hours. Other Deputies will also not have a chance to speak.

The all-party campaign led by Deputies Regina Doherty, Róisín Shortall and others deserves tremendous credit for supporting the re-categorisation of Down's syndrome resources as resources for children with low incidence disability. I cannot understand why Down's syndrome is not already on the list of low incidence disability as contained in the Department of Education and Skills circular SP ED 02/05. The case made by the national campaign on the matter is particularly compelling given the cost factor to which Deputy Ross referred. The Bill should not just be put on the clár and left there like a number of other Bills which have been taken on Friday mornings. The Minister, Deputy Quinn, should immediately implement it.

Photo of Patrick NultyPatrick Nulty (Dublin West, Independent)
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I support the Bill and I hope when the Minister of State, Deputy Sherlock, speaks he will apologise for the lack of time afforded to the debate on this very important legislation.

Photo of Seán SherlockSeán Sherlock (Cork East, Labour)
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With all due respect I cannot be blamed for that.

Photo of Patrick NultyPatrick Nulty (Dublin West, Independent)
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I recall being in the House when a Bill passed Second Stage and moved immediately to Committee Stage in the Chamber. It happened with social welfare Bills slashing payments and entitlements and with regard to Anglo Irish Bank. If the Government is genuine and sincere, as I know are many Members in the Government parties, the order should be amended to take Committee Stage of the Bill next week and we should bring it through the legislative process swiftly. Parents and families affected by this will take with a healthy dose of scepticism the good words of the Government on not opposing the Bill if it is not very swiftly made law or the necessary regulations are not amended.

The Minister, Deputy Quinn, has been very slow to act on this issue and the fact Deputy McGrath, whom I commend, had to draft the Bill to try to force action and bring this issue to the forefront of public debate is an indictment of the Government. The Government has still not ratified the UN Convention on the Rights of Persons with Disabilities and I ask the Minister of State to address when this will happen. If we are to build a republic of equal citizens there can be no ifs, buts or equivocation; it can only be full equality for all citizens and all children. I hope not only will the Bill not be opposed but that it will swiftly be brought into law.

Photo of Seán SherlockSeán Sherlock (Cork East, Labour)
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I am conscious the proposer of the Bill has yet to speak again and only six minutes remain in the slot. I genuinely thank all Deputies for their considered views in the debate. The Government's non-opposition to the Bill is not a cynical ploy. We want to state categorically we have accepted the advice of the National Council for Special Education and there is no question the development of a new model for allocating additional resource teaching support to schools must be explored.

The intention of the new model will be to allocate resources as fairly as possible to those schools most in need of these resources and to provide greater autonomy - I cannot emphasise enough the word "autonomy" - for schools in targeting the resources to the pupils who need them most regardless of their disability, categorisation or diagnosis and in accordance with the recommendations contained in the report. It is clear the report will fully address the issue raised with regard to pupils with Down's syndrome and the reason we are taking the approach we are on the Bill is to allow for it to be referred to the Joint Oireachtas Committee on Education and Social Protection where it can be considered in the context of the forthcoming proposals to establish a completely new model for the allocation.

I sincerely take the points raised by Deputies on the length of time between now and September 2015, when the report will issue. I certainly will take it up with the Minister, Deputy Quinn, arising from the interventions made by Deputies across the House. All Deputies are mindful of the historical perspective on the challenges and the unconditional love one feels from people in the community. It has been well-articulated by Deputies in certain testimonies and we have all encountered it from people with Down's syndrome. We are genuinely trying to deal with the issue. I understand people are absolutely and utterly frustrated at this stage and I am confident the issues raised on the time-lag will be addressed by the Oireachtas committee, but I assure the House I will take them up with the Minister, Deputy Quinn.

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
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I thank the Minister of State and all my colleagues for their support today. I will not accept any more kicks to touch or delays on this issue. We need to get on with it and provide resource hours for these children with Down's syndrome. The parents involved in Down Syndrome Ireland feel exactly the same. They will not accept any more delays. We want to get on with the job. We have made our case and we have cross-party support.

I thank my colleagues in the Technical Group, namely, Deputies Thomas Pringle, Catherine Murphy, Joan Collins, Mick Wallace, Clare Daly, Shane Ross and Maureen O'Sullivan, for their massive support and I really appreciate it. Sometimes Independent Deputies get a hard time from the Government, but I recognise and compliment those on the Government benches, including Deputies Marcella Corcoran Kennedy, Paudie Coffey, Regina Doherty who has done much work on this, Derek Keating, Jerry Buttimer, Ray Butler and Joe McHugh. I also thank Deputies Tommy Broughan and Patrick Nulty, and the Acting Chairman, Deputy Peter Mathews, who could not contribute to the debate. I particularly thank Deputies Colm Keaveney and Michael Moynihan of Fianna Fáil for their support because it is very important to have support from the Government and the Opposition, and I thank Deputies Michael Colreavy and Pearse Doherty of Sinn Féin for their support. Down Syndrome Ireland also appreciates the support of the Deputies.

Down's syndrome is a complex disorder and is much more than an IQ issue. It also includes speech and language difficulties, fine and gross motor skills difficulties and behaviour issues to name but a few. Government policy puts people at a disadvantage by not recognising this and merely referring to their IQ.

My friend and colleague, Deputy Shane Ross, touched on the issue of costs, which can range from between €600,000 to €1.2 million depending on the number of children in primary schools. The Government should get on with the job. We are sick and tired of it. We are taxpayers also. The 2,000 members of Down Syndrome Ireland contribute revenue and taxes to the Exchequer but we must fight for these resources.

Deputy Clare Daly touched on that important aspect also.

As well as providing resource hours, we are asking the Government to respect our rights and those of our children. If it believes in an inclusive republic, it will respect the rights of all citizens. We pay our taxes every year just like everybody else. We are entitled to a service, but we should not have to fight on every issue. Some 20 years ago, as new parents - I acknowledge Mr. Frank O'Sullivan who is in the Visitors Gallery - we fought to get our children into school. We had to bang on doors to achieve this because we were hearing comments such as, "We do not know whether we can teach those children in those situations." We now have resource hours and special needs assistants, with which we are delighted, but we are now moving into another zone. We want equality and respect for rights and for that to be done and dusted today. This is an opportunity for the Government to do so. I know, from the good will shown by Members, that it means to do this, but it is up to the Minister and the Government to deliver.

The Minister of State spoke about the Oireachtas Joint Committee on Education and Social Protection. I know he is representing the Minister, but I ask him not to allow this issue to be kicked to a committee with which it will remain until 2015 or 2016. We will not accept this and will be out shouting and roaring on the streets again if we cannot get it.

It should be realised also that even the hard-nosed cynics have spoken about the economic costs involved. If we educate a young child and do our best at an early age, it will cost the State less. My daughter is in an adult service. I drop her to the bus stop on the Swords Road every day at 7.50 a.m. and she uses her bus pass. She is a very independent young woman and attended mainstream primary school in which she received great support from many good teachers. We did not receive resource hours or the assitance of special needs assistants 20 years ago. However, we still had a group available. I thank, in particular, the staff of St. Brigid's girls school in Killester who took on children with disabilities without resources.

I thank all Members for their massive support and ask the Government to get on with the job of providing resources. It would only amount to four hours and 15 minutes every week for every child with Down's syndrome in primary school.

Question put and agreed to.

12:00 pm

Photo of Peter MathewsPeter Mathews (Dublin South, Independent)
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As this is a Private Members' Bill, it must, under Standing Orders 82A and 118, be referred to a select or special committee. The relevant committee is the Select sub-Committee on Education and Skills.