Joanna Tuffy (Dublin Mid West, Labour)
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I welcome our guests, Professor Sue Buckley, emeritus professor of developmental disability at the University of Portsmouth; Ms Patricia Griffin, national education consultant with Down Syndrome Ireland; and Ms Gina Grant, vice secretary, Donegal Down Syndrome. I also welcome those in the Visitors Gallery. As Professor Buckley and the other speakers will have to leave to attend a conference, I am aiming to finish the meeting at 2.45 p.m. I invite Professor Buckley to make her presentation.

Professor Sue Buckley:

I thank the joint committee for inviting me and agreeing to give time to this issue. As indicated in the Chairman's introduction, my background is as a psychologist and professor of developmental disability. Since 1980 I have been active in research into the development of children with Down's syndrome. In 1988 we began including children in school in the district where I work. I have a lot of experience of what is needed to support effective inclusion.

My presentation will focus on what I was asked to do. Members will know that the Dublin branch of Down Syndrome Ireland has organised a three-day conference which starts tomorrow. I am in Dublin to attend that conference and was invited to contribute to this meeting while I was in Dublin. More than 300 teachers will be in attendance at a training event tomorrow. This is a very impressive number, given the size of the total population. It also highlights the commitment of teachers in Irish schools to children with Down's syndrome and their willingness to learn about best practice.

I will focus on the first two slides in my presentation, which has been provided for the committee, which make up the executive summary. I will also take questions from members.

In recent years there has been a great deal more research conducted into the effects of Down's syndrome on children's actual development. It has highlighted that the children tend to have a quite specific behavioural profile. They can have delayed motor development, delayed social understanding, delayed spoken language, delayed motor skills, delayed learning in how to control and manage their behaviour. These are big areas of development where we can see what is happening. Research across the field of children with disabilities, particularly where there is an obvious label such as autism or Down's syndrome, is looking to understand in more and more detail how this disability impacts on the child's development and the way in which he or she engages in learning about the world. Research is using that information to develop more effective early intervention and education programmes. We now have a lot of information - I am sure there is a great deal more to learn - on the specific profile of children with Down's syndrome.

One of the aspects that is true for all children is a degree of cognitive delay, a degree of intellectual disability. In IQ tests the average child has an IQ of 100. An IQ range of 70 to 130 and above is usually taken to be the typical range of development. A person with an IQ below 70 is regarded as being in the range of intellectual disability. 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. IQ is not a good indication of their total range of needs. Committee members will all take it for granted that they have good working memory or else they would not be able to follow my meaning. The brain has to be able to catch the words and sentences and hold them long enough for it to process and understand them.

That verbal short-term memory system - it is a working memory system - is a better predictor of academic performance than total IQ measurement. That is an increasingly important area of research for all children.

I am presenting the argument to the effect that the dominant view when deciding on resource allocation seems to be the child's IQ. That will not do. I accept that they have cognitive delay, but they also have far more speech and language difficulties than many children with similar IQs. These working memory issues are really important in the classroom. Teachers talk all the time and if one cannot actually process and understand language and retain two or three instructions one has been given, one has lost it before the class follows the teacher's instructions. It is, therefore, hugely important in the classroom. In addition, 80% of children with Down's syndrome wear glasses and 80% have hearing losses which fluctuate - a lot of them remain - and this leads to their not having perfect hearing in their school years. Hearing impairment is one of the reasons for speech-language working memory delays. Children with Down's syndrome also experience visual impairment and significant motor delay. When they go to school, they have a level of motor delay which means that they cannot yet use knives or forks, manage cups and spoons, fasten the buttons on their clothing or put their shoes on. The level of motor delay will influence whether they can hold pens and write. It will also influence play and motor control outside. I refer to fine and gross motor control.

I am emphasising Down's syndrome as a complex developmental disability which includes intellectual disability but which is much more than that. There is a wide range of variability. When a baby is born with Down's syndrome, all the research indicates that there will be this relative profile of strengths and weaknesses. However, the extent will vary from child to child. As a result, some children have less impaired language and memory and some have more. Some children experience more motor delay than others, but they all have some. There are children whose IQs are higher and may be higher in early years. The reason IQ drops relates to the measures used. For example, one can see what a child can do and one can attribute to him or her an approximate mental age. One can say a four year old would be a certain way. One can then compare the child in question against norms for other children their age. If, therefore, a child with Down's syndrome is at the level of a four year old but is actually eight years of age, his or her IQ will be 50. One can crudely divide age by mental age in order to arrive at an IQ. The child with Down's syndrome is creeping forward but more slowly. That child may have reached the mental age of a four and a half year old by the age of nine or perhaps only the mental age of a four and three month old. As a result, his or her IQ score would drop because, although he is moving forward slowly, he is not keeping up with his or her peers. I hope that makes sense. The IQs of children with Down's syndrome drop not because they are not learning but rather because they are not learning fast enough in order to remain in the same position relative to their peers.

Having read the rules which apply in this country, I am of the view that all of these children would qualify with regard to the way we allocate supports in the United Kingdom in respect of this range of low-incidence support. I hope I have made clear the fact that Down's syndrome does not just involve intellectual disability.

I have many years of experience in this area and trained teachers all over the world. I have advised on the development of education systems and been involved in front-line classroom work locally and resolved issues. Research in this country and elsewhere - there is not a huge amount of such research - indicates that the academic and language outcomes for children with Down's syndrome are always better when they have been in mainstream classrooms. It is a more stimulating environment and there is more opportunity to access learning to read. Importantly, they are also in a positive spoken-language environment where all of the other children talk. All of the studies which have been carried out indicate that they have better spoken language and academic outcomes when placed in mainstream environments. This will only happen, of course, if they and their teachers are properly supported. Imagine a child with Down's syndrome being placed in a class of 27 or 30 five or six year old children. There is no way one teacher could manage when that child fidgets at story-time, when he or she cannot follow instructions or when he or she cannot sit still long enough to complete his or her work. If sufficient supports are not put in place - these must include a balance between assistant support and specialist teaching support - teachers will be set an impossible task. As I have indicated, 300 teachers are due to come to Dublin tomorrow because they want to know how to do the job better. They will be let down, however, if they are not given adequate support.

That is probably all I need to say. I should stop at that point and allow members to ask questions.

Joanna Tuffy (Dublin Mid West, Labour)
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I will open the floor to members in order that they might pose questions. I wish to offer a short explanation to those who are not official members of the committee. Our usual order is to begin with the party spokespersons - those from Fianna Fáil, Sinn Féin, the Technical Group, the Government parties - and then move to individual Deputies and Senators in the order in which they indicate a desire to contribute. We also have a rule to the effect that non-members of the committee may contribute when all official members have done so. I say this just in case people are wondering about the criteria I will employ when calling on members to contribute.

Charlie McConalogue (Donegal North East, Fianna Fail)
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I join the Chairman in welcoming our guests, Professor Buckley from the University of Portsmouth, Ms Patricia Griffin from Down Syndrome Ireland and Ms Gina Grant from Donegal Down Syndrome. I will be brief because I know there are many members present who wish to contribute.

Will Professor Buckley indicate how supports are provided for children in the United Kingdom and internationally? I accept that there is a significant issue in this country as a result of the fact that Down's syndrome is not on the low incidence list. As a result, teachers and schools must make do as best they can by using the small number of hours allocated in order to try to support pupils with Down's syndrome in mainstream classes. The hours allocated are extremely inadequate. Professor Buckley may be aware that a review is being carried out of how special needs supports are allocated and provided in Ireland. There is no doubt that schools are under pressure and we are all concerned about the number of hours allocated. Will Professor Buckley elaborate further on how supports, etc., are allocated internationally? Will she outline her thoughts on how this is done in Ireland and indicate the direction she believes we should take?

Professor Sue Buckley:

I will begin with the position in the United Kingdom and be as succinct as possible.

I suspect different models can work equally well. I should probably point out that the assessment systems used in various countries are different. Therefore, in terms of identifying a child's profile of needs, I do not know when I last saw an IQ test score for a child in the United Kingdom. There is not the same kind of rigid structure when it comes to allocation. Ireland is moving towards this. We have statements on children with the highest degree of disability which set out the point to which their motor and speech and language skills have developed and indicate whether they have hearing impairments. They also describe their developmental needs and how these are going to impact on their education. In deciding the number of support hours and on the direction in which money might travel, it is what Ireland is moving towards, namely, a description of special educational needs, not just diagnosis. As pointed out, diagnosis might be very important in setting the scene in this regard.

As is the case in Ireland, in the United Kingdom much more money has been allocated directly to schools. Like the general allocation model which obtains here, much more money is now available in schools in the United Kingdom. This is a recognition of the fact that 20% of the school population have additional educational needs and that some 18% of these have always been in mainstream schools. This reflects the bigger picture in having a flexible school system for all children. As a result - as is the case here - much more money has gone straight to schools in the United Kingdom.

There are virtually no children with Down's syndrome in the United Kingdom - even those with higher IQs - in respect of whom statements have not been compiled. Typically, they definitely qualify for a statement. I would be prepared to state 99% of them have statements. These statements list their needs, including some that might come from the area of health - for example, speech and language therapy or physiotherapy - and identify the level of assistant support the child will receive and, possibly, the services of incoming support staff from outside the school system. Having stated a child should receive 20 hours of support assistance - I will come back to this - it may also be decided that the school already has enough money to pay for 12 hours. A little more money will go to it, in the same way that low-incidence funding is allocated here.

Some money already will be in one's school system to fund such additional time. However, the other thing members need to know is the way in which schools have changed in the United Kingdom. The drive for this inclusion started in the mid-1980s, as it did here. I have been coming here to run training since the mid-1980s and I should tell the joint committee how impressed I am about how rapidly the Irish system has progressed and developed and has welcomed children in inclusive settings. While the same thing has been happening in the United Kingdom, one important development was the introduction in 1981 of statements of special educational needs. This comprised getting rid of the diagnosis and listing the child's special educational needs. Very quickly thereafter, people realised there was insufficient expertise in special education in schools and as I am sure members are aware, all schools, primary and secondary, must have a special educational needs co-ordinator, who increasingly might be called the head of learning support. This person is a member of staff with full or part-time responsibility for special education for all the children, which entails reviewing their statements, doing their individual educational plans, IEPs, every year and, importantly, training and supporting assistants and teachers in school. This would be a bit like having one of your special education resource teachers permanently in school.

In addition, members probably are aware that over the years, we have built an army of what we now call teaching assistants. When we started in 1988, the teachers in the reception year classes who were getting the five year-olds had never had an adult in the classroom. They actually were more worried about the assistant coming in with the child than the child with Down's syndrome. While we of course have come a long way from there, at the time the view was that one would not be able to support this little tot with delayed motor issues, delayed communication and therefore a tendency, if not properly supported, to start challenging behaviours without another adult in the classroom. As members are aware, this provision has grown and as a result, many of our primary schools have as many teaching assistants as teachers. I believe I am correct in stating that in most of our primary schools in respect of reception year, year one and year two, there always is a teaching assistant plus a teacher for all the children. This is before anything to do with a child with an additional need. A group of these have been built up, which is critical. It involves both expert teaching and supporting the class teacher. Any teaching the teaching assistant does for individual children or small groups is under the direction of a teacher and that is how it works.

Joanna Tuffy (Dublin Mid West, Labour)
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I will take two questioners this time, the first of whom will be the Sinn Féin spokesperson, Deputy Jonathan O'Brien. Thereafter, I will take a member from the Technical Group, if someone from that group is present and if not, it will be a Government spokesperson.

Jonathan O'Brien (Cork North Central, Sinn Fein)
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In the course of undertaking some research in the lead-up to this meeting, I found that because there is no set method and each country in Europe has different models as to how it assesses-----

Professor Sue Buckley:

Yes.

Jonathan O'Brien (Cork North Central, Sinn Fein)
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----- it therefore is difficult to get evidence-based data. I seek Professor Buckley's views in this regard because while studying some of the areas in England, I read through an all-party parliamentary report published in 2012 on Down's syndrome that focused on education and some of its recommendations appear to suggest commonsensical approaches. Another area in which I noticed many differences right across Europe concerns the funding models. There is a wide range of funding models and based on her experience, Professor Buckley should provide the joint committee with her opinions both on how the evidence-based data vary across Europe and on the funding models.

Joanna Tuffy (Dublin Mid West, Labour)
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Does Deputy Joan Collins wish to come in at this point?

Joan Collins (Dublin South Central, People Before Profit Alliance)
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No, I will not do so, as I missed a lot of the introductory remarks.

Joanna Tuffy (Dublin Mid West, Labour)
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Okay, to make sure everyone gets in, I will take a spokesperson from the Government side. Those who have indicated are Deputies Ó Ríordáin and Bannon and Senator Moloney. It is up to them as to who wishes to speak for the Government.

Aodhán Ó Ríordáin (Dublin North Central, Labour)
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I will be brief.

Marie Moloney (Labour)
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We will all be brief, as I have only brief questions.

Joanna Tuffy (Dublin Mid West, Labour)
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Yes, but I will bring in only one person from the Government side now, after which I will follow the order in which people indicated.

Aodhán Ó Ríordáin (Dublin North Central, Labour)
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I welcome the witnesses. I have two questions, which are along the lines of Deputy Jonathan O'Brien's point regarding funding models and what works best. Professor Buckley mentioned classroom assistants and attention in the classroom and, in this context, I have a background in education and am doing some work at present. I refer to the interaction of the classroom or special needs assistant with the child and the potential dependency in that regard. Professor Buckley should expand on this because I have dealt with situations in which a child has been allocated a special needs assistant, SNA, it has been a wonderful experience and the child has really benefited from it. However, I have experienced other situations in which the child actually has regressed and become more dependent and it has not been a success. Does Professor Buckley have a template on what is best practice in this regard? Second, Professor Buckley may be unable to answer this general question but perhaps someone else can. What is the status of the witnesses' interaction with the Minister on this broader question?

Professor Sue Buckley:

As I do not know about the Minister-----

Aodhán Ó Ríordáin (Dublin North Central, Labour)
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I know Professor Buckley does not.

Professor Sue Buckley:

----- let me deal with the first part of the question. I am not an expert on all the funding of what goes on in all the different countries in Europe and it varies hugely. All sorts of things lie behind that, including attitudes to disability and the extent to which people have built special school systems and so on. As the Deputy might have guessed, it is complicated. A huge issue concerns the shifting of attitudes in some countries and consequently, people have done all sorts of things. Certainly, it was the case in the Netherlands and Belgium that large numbers of children had not been included and when they were, they were not well enough supported and consequently, it was only the most able who could make it. However, what tends to happen in every country is that this moves. Members should allow me to answer the dependency question and then link together these two things. I reiterate I am not an expert on the finances and probably should not go down that route, except to state that best practice in lots of countries would be what Ireland already has done, that is, to get a lot of money out through general allocation because one is talking about a large group of children with special educational needs of one sort and another. I think that has happened and holding back money has come to be for the most disabled group or the most educationally disadvantaged group.

On the issue of support assistants, the Deputy of course is absolutely correct. This is about best practice and my definition for them is they are there to help the child to access the curriculum and to encourage independence. They are there to step in when the child needs a little more help to maintain his or her attention. In our situation, they would be involved in differentiating the curriculum and helping the teacher to find more pictures and more material to simplify the curriculum. They may sit with the child in question or with a small group as they have a teaching role, albeit always under the direction of the class teacher. The child is the full responsibility of the class teacher, not the resource teacher and not the special educational needs, SEN, carer. Moreover, all these things can go wrong. A class teacher can leave it to the resource teacher if one is not careful and the way in which an assistant is used can be good or bad. As this growing army of assistants has come into being to help across an entire range of children, children with Down's syndrome are much more likely to have two or three assistants during the day or the week, which stops such over-dependency on a single person. Moreover, one has an increasingly skilled workforce and one can draw parallels with the health care system of having health care workers and nurses. One has a flexible workforce with varying degrees of training to deliver the service as effectively as possible.

To link this to the broader question, since we started to do this inclusion, I have worried a great deal about the 20% of the population that still gets out of school without adequate literacy and numeracy for the workplace. Right back at the end of the 1980s, I was going into classrooms and could see a child with Down's syndrome who had an IEP, professionals coming in to support him or her and an assistant sitting with him or her while quite clearly, another four children in that class also needed the same level of help. I would like to think this is how we have moved, because we have become less stuck to the child money but have built up a flexible workforce. We know the 20% in question and can tell at the age of four and five who will be the ones who will fall behind with literacy and will become socially and educationally disadvantaged. We also know, from lots of studies, that if one quickly puts in the right sort of one-to-one instruction, particularly in respect of literacy, some of them catch up within a term or two. They cannot crack it from whole class instruction for a variety of reasons including poor attention, delayed motor issues and so on.

It struck me more and more that we should have this big vision in mind because the other experience I will share with the committee that might answer some other questions - what I have just described is real - is that going into classrooms and realising that, and then seeing the assistant paid for by the child with Down's syndrome actually helping that small group. We often see that in a primary classroom, that the children who need extra help have already got grouped and this extra person who is helping them.

These are real stories. On our first children to hit the secondary school, we got in touch with a big local secondary school two years ahead. It had 1,800 children, was historically a grammar school and was proud of its academic record. I went to see them. I telephoned the head and asked did he know there were two girls with Down's syndrome in feeder schools. "Yes", he replied, "I had heard about it. Come and see us." This was the early 1990s. The guy said to me, "I have been here four years. I have really invested in special education. Come and meet the head of learning support. I want every child who comes through here to go out able to go to work." He meant that 20%, mostly boys, who we know make up 90% of our young prison population. They come from the children who we have failed in the education system - this is relevant to those worrying about Down's syndrome. He said, "Meet the head of learning support. We have three full-time teachers in our learning support team and 18 assistants, and we can use those flexibly." The assistants could go and support a child in the classroom, do individual work, do small group work and be training up teachers or helping teachers adapt material for a pupil, and they would be supporting the individual education plans. The learning resource area in this big secondary school was part of the main school library. Trying to get away from the stigma, one could have a gifted child doing his or her homework in there or a child needing extra help, and yet anybody in the population could have individual needs. That school did not bat an eyelid at taking two very different children with Down's syndrome because it already had the attitudes and resources in place. Does that make sense?

Aodhán Ó Ríordáin (Dublin North Central, Labour)
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Yes.

Professor Sue Buckley:

This is an answer to the Deputy's question about what models work. A child can only have difficulty across a range of developmental areas: autistic child, social impairment - other children can have social or emotional difficulties - physical disabilities, sensory disabilities, speech and language. These all can happen to a child with a high IQ. Of course, the other big piece of this is properly training teachers so they know what to do quickly about a child who has got a dyslexic profile, has additional behavioural issues in the classroom or whatever. There are two sides to it. It is recognising the right model works for everybody, particularly that group with whom are not doing very well, once one has that inclusive view.

In my experience, it is about attitude change. For our group of children, we found very early that I needed to go and change people's attitudes and we would do a bit of training before the child hit the system. One needs the school to believe this is the best place for the child to be and to want the child to be there.

There are issues associated with specific disabilities, but if we got this right and if we spent our resources properly, one would have flexible staff teams in schools so that one can do the individual small-group work quickly when it is needed. If one could afford for all those staff to be fully qualified teachers, that would be wonderful. However, most staff are not. The teaching assistants are predominantly women who want to come in and work with children, and they are often brilliant. In the case of many of our children who have gone right through the system and done so well, it has been because of the support assistant teams, as well as good teachers. Does that make sense?

Aodhán Ó Ríordáin (Dublin North Central, Labour)
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Yes.

Professor Sue Buckley:

We all have limited pots of money - it is all going down hill - which is why I think we need to take this big view, and then many of the battles one would have around individual children would not be such battles because the school system would already be more confident-----

Aodhán Ó Ríordáin (Dublin North Central, Labour)
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One would not be playing children off against each other either.

Professor Sue Buckley:

-----and more resourced.

It does not mean one still does not need a little bit of money because if a blind child or a child who needs a deaf signer arrives in school, that is an unusual event. The Deputy will know what I mean. Most systems are working it well. That pot shrunk and they recognised it is about developing an inclusive system where every child is an individual and we can value the individual, and we can make the best use of our peers.

Some school systems are much better at the peer-support exercise where other children are supporting. They are working in a small group together and they are doing one-to-one peer support or small-group support, and everybody benefits. The research shows that if one learns to teach something to somebody, one has benefited.

We need to be creative and flexible, do we not? I know I am slightly off the specific agenda, but this is really important and one will hear me say so whenever I run training. It is not only about Down's syndrome.

Joanna Tuffy (Dublin Mid West, Labour)
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I might take another couple of questions. The next on my list of those who indicated is Senator Moloney, and then Deputy Bannon.

Marie Moloney (Labour)
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Deputies O'Brien and Ó Ríordáin have already touched on some of the questions I was to ask and I will keep it brief. I welcome Professor Buckley and thank her for taking the time to come. Of course, I welcome Ms Patricia Griffin who has been a long-time advocate of children and adults with Down's syndrome.

I have a couple of questions. There is a report of the National Council for Special Education due out soon and I wonder whether or not Ms Griffin or Ms Gina Grant have fed in a submission to it.

Professor Buckley stated IQ is not a good model for assessing children. I wonder, when a child with Down's syndrome goes to school, at what stage is he or she assessed for IQ. Is it when he or she starts school or before he or she starts school, and is there a continuous assessment to ascertain whether or not his or her IQ is dropping?

I am concerned about the poster that went out about the two sisters, where Ruby, if she had a speech and language disorder, would receive resource teaching hours whereas Zara does not because she has Down's syndrome. Is Professor Buckley stating that Zara would not get support, if she had a speech and language disorder, merely because she has Down's syndrome?

Professor Sue Buckley:

Yes. On the Department's current criteria, what I stated was a specific speech and language disorder, because it is a gap with the child's IQ, does not count. If the child has Down's syndrome, he or she must have a normal IQ, above 70, to get resource teaching.

Marie Moloney (Labour)
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Even if the child had a speech and language disorder as well.

Professor Sue Buckley:

Yes, under the current rules, if applied rigidly.

Marie Moloney (Labour)
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That is a worrying aspect.

I am also concerned that the general allocation model, GAM, is based on the number of children enrolled in the school, not the number of children requiring support. In that case, a school that does not have any child requiring additional support would get the funding as well.

Professor Sue Buckley:

It does not work like that in the United Kingdom. Nothing is easy to do, but I think the Senator will find I am correct in stating it is allocated on the basis of free school meals as a crude indicator of deprivation. In the United Kingdom, the starting point is to look at the number of children in school and how many qualify for free school meals, which is a poverty indicator. The Senator is correct that it should not be merely based on a head count because a primary school in a really deprived area may have the same number of children as a primary school in a well-to-do area where there will be probably fewer children dropping behind. The Department would be wise to try to refine that a little.

Joanna Tuffy (Dublin Mid West, Labour)
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Before we go to the other questions, does Deputy Bannon have any additional questions?

James Bannon (Longford-Westmeath, Fine Gael)
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The previous question on the general allocation model of the block hours was the one that I meant to bring up. That is where there is a problem, where it is based on school size and has nothing to do with the numbers of students requiring support.

Professor Sue Buckley:

Yes.

James Bannon (Longford-Westmeath, Fine Gael)
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The only person who can really address this is the Minister. The Minister has written to the Down's syndrome association, as I understand it, stating now was not the time for to re-classify certain disabilities.

Professor Sue Buckley:

I have seen that letter.

James Bannon (Longford-Westmeath, Fine Gael)
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The Department of Education and Skills has also stated it will not do it in the short term. That is where the problem lies and the only person who can answer that is the Minister himself. We need to bring the Minister before this committee as soon as possible to get further clarification on this issue.

Professor Sue Buckley:

Deputy Bannon is correct. There is a process going on, from the publication of that report May last. There is a working group and Ms Griffin is on one of the working groups advising. The Department is going in the right direction but I am not quite sure what is the timescale. 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.

Obviously, that is one of the issues for parents whose children are just starting school and the only way we can address that is to get the Department to recognise them as low incidence for the moment, if that makes sense. The only way they can get the extra help currently is to recognise them as low incidence. We are not talking about a large group of children and if somebody says to me the Department cannot afford it, I would say it is a question of human rights and equity.

The children on the list include children with autism and high IQs, etc. One could probably take 15 minutes per week from other children and have enough for this group of children. It is about using the budget equitably. Unless the children in question get more support, we will be failing them. This is why I was asked to consider the staff and focus on the argument - they should be low-incidence - in addition to feeding in. There is a simple solution until a new system is in place.

Joanna Tuffy (Dublin Mid West, Labour)
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Would Ms Griffin or Ms Grant like to comment? Senator Marie Moloney had a question for them.

Ms Patricia Griffin:

Deputy Ó Ríordáin asked about the status of our engagement with the Minister. Our letter from the Minister after our last meeting stated a working party to develop a new model for the allocation of resources in line with the NCSE's main recommendations is expected to report progress before the end of September. I read last week that this will now be October and that the Minister expects the work to be completed fully by Easter 2014. We have been in touch with him and have asked to be kept informed about the progress of the working group. Unfortunately, the Minister was not able to reclassify Down's syndrome, as was our request at the time.

I will talk about the general allocation model. Ms Buckley stated early individual attention is vital. The general allocation model – I have said this before to a group here – is a good model in itself and works for some children but it does not work for our children with Down's syndrome who are availing of it at present. Some children in the infant classrooms do not get any general allocation time because that is the school policy. The schools actually do not use their general allocation in terms of time or resources for their junior classes. Thus, children who have had good early intervention and who have the famous IQ that Ms Buckley spoke about, which can be higher in the earlier years, do not get any support from many teachers when they enter school. The gap widens – it will widen in any case with any child with Down's syndrome, as I know as a parent - but will also widen because less individual attention will be given to the child. As Ms Buckley mentioned, the type of teaching given to the child is paramount at the stage in question. Proper training is required for teachers who know what they are doing and who know how to deal with behavioural issues, which are very rife at the start of a child's years in school and when they move into a new environment. The children need lots of help with literacy and numeracy. Teachers and teaching assistants have to be trained properly. I agree with Ms Buckley that the way to address our big SNA problem is to develop a system with good teaching assistants who can be put to work in the best interest of the child.

Professor Sue Buckley:

Can I add something else? A question was asked about assessment. I have seen a number of examples although I am not the expert here. Assessment seems to be a little hit and miss. Some children seem to be going to school based on an assessment done when they were between two and three. That is hopeless but members know what I mean. One cannot predict on that basis.

It appears that when a child gets into school at five, what was said when he or she was two and a half suggests he or she might not need extra help. One cannot actually get another assessment; they are restricted. I have been told one can have only so many assessments in a school in a year and that a child will not get one. Is that not all back to front? There needs to be an assessment at an appropriate point. If there is a scarcity of money and an assessment is to be carried out only once, it is better to carry it out at five, not two. It may not be very obvious at the age of two how delayed language will be at five. Therefore, issues arise over assessment.

I have seen some lovely, beautifully written and very positive assessment reports from professional teams describing the child properly and sensitively and recommending resource allocation on the basis that the child should be low incidence. They do not receive their allocation.

Marie Moloney (Labour)
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The committee can discuss this and make recommendations if necessary.

Professor Sue Buckley:

Yes. The problem is that if a child's IQ is above 50, it does not matter what else the professionals have said about his or her needs in the classroom as they do not get their allocation. Obviously, I have been provided only with a very small sample but there clearly are some issues arising regarding the best approach.

Ms Gina Grant:

Ms Buckley made the point on assessments. Assessments are carried out at the age of three. My son was assessed at the age of three and I was told he would not get help entering the school system. One is told one's child will not get an SNA, for example. This makes it very difficult. Ms Buckley just said everything I was going to say. A child cannot get reassessed.

Professor Sue Buckley:

Even worse, I have encountered examples of where, because of the way the system works, parents do not get their children toilet trained and stop stimulating them because they will receive enough help in the school system only if they are low functioning. That is one of the unintended consequences. It would make me want to cry. I believe that is real.

Ms Gina Grant:

Yes, it is real.

Professor Sue Buckley:

People understand that they need to make their child as bad as possible to get enough support.

Ms Gina Grant:

One has to get the modern diagnosis. If one does not get the modern diagnosis, one will not get help from the school. It is an awful set of circumstances for a parent to be put in. One has to hold one's child back at such a vital stage to get assistance when the child enters school. For a child with special needs, especially a child with Down's syndrome who is delayed in so many areas, entering a mainstream school is a terrifying prospect. It is heart-wrenching to leave one's child in the playground. As a parent, one feels one has to prove one's child’s worth to the likes of country and state. One must say: “Please believe me: my child is worth it.” At present, the system for children with Down's syndrome is very unfair.

Joanna Tuffy (Dublin Mid West, Labour)
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I call on Senators Moran, Power and O’Donnell.

Mary Moran (Labour)
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I have several points I want to touch on briefly. Ms Buckley hit the nail on the head when she mentioned that the main criteria concerned teacher training. I have a background in education also and believe it is vital that when a child enters school, the teacher, first and foremost, should know how to meet his or her specific needs. I have raised this issue on several occasions. I hope that the additional year for teacher training will help. I have constantly asked for additional training in the area of special needs.

Everyone comes across the issue of ongoing assessment. One is told constantly that one's child, having received an assessment at the age of three, might not have another until the age of 18. They are put into a box and that is it. Have the delegates any suggestions on how we might make progress in this regard? I have advocated that assessments be compulsory at every critical stage in a child's life, including the point of reaching the teenage years.

How will the legislation proposed last week to address cherry-picking in regard to admission to schools affect children with special needs, including Down's syndrome, who are entering secondary school or a school that may not have the resources to meet their needs? It is hoped the legislation will alleviate the problem.

My next question is for Ms Grant. I believe the parents group submitted further information on the research to the Minister, Deputy Quinn, in the past week. Could she fill us in on that information and on how we can move on? I have a million other questions.

Professor Sue Buckley:

I will try to deal with some of those matters. The IQ issue needs to be put into context, irrespective of what we do about assessments. IQ is not helpful as a total predictor of children's progress.

It cannot be used on its own. It is not that it does not have some valuable information, but it should not be seen as the only thing. One would rarely see IQ tests in the UK but one would see them in the US. Everywhere is still different. Children in this very low incidence group - less than 0.2% - would get statements in our system which would focus on describing their education. It would be very unusual for the statement for starting school to be done before they were four. It is then reviewed every year, which is the issue about assessment. An IEP is set for the child, which is the practical programme in the classroom and has practical targets, but there is a review meeting every year so there is ongoing assessment and refining. If at a review meeting, people felt that the support for this child was not adequate, they would go back and ask for the statement to be reviewed. That could be done at any time.

Mary Moran (Labour)
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When professionals are looking for help, they always look for the psychological report rather than the IEP.

Professor Sue Buckley:

If a statement was reviewed, an educational psychologist would be involved, but so would speech and language therapists, physiotherapists and everybody else. It might not be the person who co-ordinates all of the statement, so it would vary. If one is reviewing these low incidence children with high levels of need - I would do it for the rest of the 20% about which we were talking - one is building it in. There is a statutory requirement for a review at 13 with a view to planning teenage education and adult life, but we have these SATs assessment for all children of academic progress at the end of Year 2 and Year 6 and once in secondary education. That is for all children. That is a measure of how they are doing against the curriculum on academic progress, but there is no fixed point. If a statement still seems to be okay and the results the child is getting are okay, there is no particular need to review it. It is having a flexible system in place that works.

Mary Moran (Labour)
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If the teacher doing the IEP does not have the experience of working full-time with special educational needs, the question is whether the IEP is accurate.

Professor Sue Buckley:

The educational psychologist would be invited to take part in the annual review and at the annual review meeting, anybody putting in support to this child from outside school would be invited, so speech and language and the EP would be from outside. They do not always get to all of these meetings but they should attend. They are invited to attend and would comment on and be expected to submit written evidence if they were not attending. It is not just down to the school. I am an optimist and if one has really good expertise building in schools, one should be able to trust the school to do it. Often, that is fine.

Joanna Tuffy (Dublin Mid West, Labour)
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I want to bring in Senator Power and then Senator O'Donnell. I know we must go back to Ms Grant but before I do so, I will take questions from Senators Power and O'Donnell.

Averil Power (Fianna Fail)
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I thank Professor Buckley for her presentation, which I found very interesting along with her interaction with the members, Ms Griffin and Ms Grant. If I have taken her up correctly, Professor Buckley appears to be saying that a properly organised and resourced generalised system is better than one that is overly individualised. What we had before the general allocation was that every child had to get an individual assessment. It was mayhem and there were years of delays. It was crazy. The whole point of the general allocation model was to move away from that and have a system where the resources were there before the child. Of course, we must review it and look at the fact that it has been there for a few years and whether it needs to be changed and tweaked. That was always the intention of the past Government when it was brought in.

I am interested in how Professor Buckley thinks our system should be modified. Professor Buckley is aware that the National Council for Special Education, NCSE, has proposed that we move to a different general allocation model. It has not been specific about what that would involve but it has indicated that it would be a more generalised system with more leadership devolved to schools and more general resources across the system and that we would end up with less children being classified on the basis of low incidence. If this is done correctly, it will, one hopes, head in the direction of what Professor Buckley has indicated. If it is not done correctly, there may be more groups as unhappy as Down Syndrome Ireland. Due to the fact that it is unhappy with the current system, it sees some comfort in being classified as low incidence because it avoids the disadvantages its sees as being associated with the current general allocation model. Instead of fixing the model for everyone, we are trying to find ways of addressing the groups that lose out the most from it. How does Professor Buckley feel it should be tweaked? Apart from the size of the school, the Irish model takes into account some other factors which are quite crude. How would Professor Buckley modify it so that it would be a more sophisticated system?

In respect of the special education circular, Professor Buckley's presentation draws attention to the disabilities listed as low incidence and the fact that, as has been pointed out by members, children with some disabilities get a certain number of hours while children with Down's syndrome do not. In terms of teasing out the evidence base for that, and I understand where Down Syndrome Ireland is coming from in terms of showing that Down's syndrome is a low incidence disability, does Professor Buckley have information about the percentages of children with other disabilities that are classified as low incidence? That is not given in this chart and circular.

Professor Sue Buckley:

I can guess at that.

Averil Power (Fianna Fail)
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Are any of them more frequent than Down's syndrome?

Professor Sue Buckley:

Autism is more like one in 100 children, not one in 500. The birth rate here for children with Down's syndrome is near one in 500 because there is no screening or termination. That will not be precise but it is something like that. Internationally, we are talking about one child in 100 with autism. That includes the whole spectrum so it includes high functioning children with Asperger's who may have an IQ of 140 and in the past would have been thought a bit eccentric but will now have a diagnosis of Asperger's. There is a significant variation in the incidence of those conditions, which was the reason for my slightly out of order comment that one could cut a little bit off that group - a quarter of an hour of resource - and have more than enough for the children with Down's syndrome. It is a bit odd how it ever came to be like that.

Returning to Senator Power's broader question about general allocation, I would not set myself up to be a general expert on education systems. One must have some way of identifying the level of special educational need in a school. There is a school census system in the UK. I am not quite sure whether it is every term or twice or once a year. It is basically a tick box and takes in how many children there are with specific conditions like autism or hearing impairment. We have had a system of waves of extra help. If one was in wave one, it was minimum and if one was in wave two, it was a bit more and it also included wave three. Schools were rating their own children on level of special educational need. None of these things is perfect but that would be a relatively sensible way to go about it. Again, we should be able to train and trust head teachers and teachers not to cheat the system.

Averil Power (Fianna Fail)
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Does one then end up with-----

Professor Sue Buckley:

One would genuinely be shifting it according to the identified children in school.

Averil Power (Fianna Fail)
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From an enrolment perspective, would one end up with the risk that some schools become identified as the ones that have the resources because they tend to have a higher incidence of children with special needs? That links up with the other issue we are trying to address as part of the education system, namely, the fact that not all schools are taking children with special needs and reaching out and supporting them. The two interact.

Ms Patricia Griffin:

The HSE is trying to move away from the idea of assessment. It does not want to have to present any kind of educational assessment, which was really what it was doing. The HSE was responsible for the assessment of needs in the early intervention services and was doing the assessment, yet it was presenting an educational assessment. It is trying to move away from that and has almost stopped doing those assessments. Many people are having great difficulty getting them done. We do not know what is going to happen, which was one of responses to the NCSE policy document.

We have no idea about how assessments will be managed. The current system was based on those reports. There is no clear time frame for something new to happen. Will it be the teachers in schools with the children who are currently in school? If a teacher is responsible for a class of 30 students when and how will it happen? What about the children who have not yet started school? Who will carry out assessments in regard to their education? Given that they will be in the system for 14 years, they require a proper educational assessment if they are to benefit. There is no suggestion as to when that might happen. Teachers are best trained to deliver that kind of assessment but it is also an ongoing process and I prefer to refer to the process in terms of the statements that Ms Buckley discussed rather than assessments, which are very definite.

Professor Sue Buckley:

I spoke about different issues. For the general allocation model, one needs the best information available on special educational needs in a particular school. Another means of attaining feedback from staff is required if one does not use the free school meals system. These children might not have been assessed under the big picture that the general allocation model is supposed to support. The better we train staff and develop the big model of inclusive schools so that there are well-trained staff with the flexibility to help any child, the better. Many able children have additional needs. If we have such a structure we may not require assessments and statements. That argument has been made in the UK but each time it gets to that point, disability groups are immediately up in arms and meet in council because their experience suggests that if they do not retain statements for the most vulnerable children, their needs will not be met and schools will not be motivated to take them. Money also matters. Teachers in schools are not going to take children if they do not think they will be accompanied by sufficient resources. The current UK Government would like to get rid of statements and move towards a different system but the experience of disability groups is that statements have provided a wonderful legal protection. Once a need is set out on the statement it becomes a legal requirement and the education system has to provide for it. Individuals can go to tribunals to ensure provision. The individualised education plan, IEP, in the United States provides a similar legal structure to our statements. There appears to be a consensus that a formalised assessment is needed to protect the child.

Marie Louise O'Donnell (Independent)
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I want to put a wasp in the butter. We are discussing Down's syndrome educational equality, with which I absolutely agree. I do not necessarily define equality as inclusion. I tend to define equality as what best befits a child, whether he or she has Down's syndrome or is a musical or mathematical genius. He she could have a different kind or level of ability. Inclusion is not necessarily the answer.

Many of witnesses' arguments could be used to make a case for specialised education. They argue for specialised teaching and assistance, one-to-one supports and resource teaching and suggest that the fourth year of teacher training should produce teachers who are all things to all men. These teachers are supposed to be able to lock in to specialised and mainstream education, whatever that means. That is not necessarily possible, as the witnesses acknowledge when they point out that the assistants who might not have received teacher training, such as women who return to the workforce, are brilliant in this area thanks to their life experiences.

Their submission includes mainstream education and special schools among the benefits of inclusive education. According to one graph, the two are on par when it comes to daily living and socialisation but are not on par in respect of communication. However, the one-to-one nature of resource teaching could happen anywhere. It does not necessarily have to happen in a mainstream setting. It is not simply all right to say we are going to mainstream all children with special needs because we appear to have a problem with the pushing in process in terms of making it all things to all men.

The submission cites two or three studies, including one by Buckley, Bird and Sacks. Where are the Irish studies on inclusion over the past 15 years? It may be a case of ignorance on my part but they are what I need to read.

Professor Sue Buckley:

I will take the Senator's questions in reverse order. A small study was carried out by Mary Immaculate College in Limerick but I am not sure how it was published.

Marie Louise O'Donnell (Independent)
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What does it tell Professor Buckley about where we are if there is only one study from Mary Immaculate College?

Professor Sue Buckley:

There are very few studies on an international basis. Members should not beat themselves up about that.

Marie Louise O'Donnell (Independent)
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It is important.

Professor Sue Buckley:

Yes, but one of the arguments we have put to the UK Government, which overlaps with the Senator's question on special education, is that we do not at present know where children with Down's syndrome are going because they are not listed on the census document. We argue that, as a starting point for research, we know where they are and whether they are in mainstream or special needs education. They are particularly hidden in mainstream education. There is no obvious way of finding them. We cannot even start research unless we know where to find them.

In regard to the Senator's comments on mainstreaming, people would argue that the academic gains occur because typically the teaching for numeracy and literacy is more structured. A review paper recently published by a Dutch researcher examined this issue across children with Down's syndrome in various settings. The better academic outcomes occur largely because the contrast with special education classrooms is significant. The drift towards inclusion for everybody creates a tendency in special education classes towards children who are even more disabled. I did not tell the committee that I have a 44 year old daughter with Down's syndrome. When she was in school, everybody with Down's syndrome went to a school for severe learning difficulties. The population was much more able than it would be today. There can be a significant contrast between these environments both in terms of the intensity of opportunities to receive appropriate literacy instruction and because students are immersed in a more stimulating spoken language environment. Our results suggest it is due to a mixture of these factors. The way in which teachers speak to the students is very different in a small class of eight to ten very disabled children. The child-to-child conversation in such a classroom may be quite limited but the adult-to-child conversation would also be different. The entire spoken language environment and the pace of the curriculum are different. There are not many studies and none involves large numbers of children but the issues of better spoken language and better reading and writing emerge in all of them.

Socialisation is a slightly tricky issue.

Marie Louise O'Donnell (Independent)
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The graph is very interesting.

Professor Sue Buckley:

There was a difference in self-help and independence in schools. However, our special schools would argue that they focused on this area. We expected more independence and daily living on a life skills programme than turned out to be the case. In regard to socialisation, the children who were included partook in more inclusive activities outside of the school setting. The children were involved in similar amounts of activities but if they were in special schools they accessed the specialist activities, whereas if they were in mainstream schools they were more likely to be involved with inclusive social activities. The other question that provided an interesting result was whether they had special friends, boyfriends or girlfriends. They were more likely to answer that question positively if they were over the age of 16 and in special education.

We did not have many students over 16 years who had been all the way through the inclusion process. The issue is whether they have that peer group of other folks. My daughter lives with a partner with the community. She leads an ordinary adult life with support. She is in a relationship that is just like being married. Her partner has Down's syndrome and one would expect it to work when people have similar abilities and interests. They are fantastic. The way they love and look after each other would put many people of normal ability to shame because they have had quite a lot of things to deal with such as health issues.

I am passionate about inclusion. It is not that one does not need to deliver special education services, but the child should be going to school in his or her community where he or she can make friends outside school. We should be preparing them to be able to live in the real community. If one talks to adults with Down's syndrome, one will see that they want what you and I want; therefore, if a person grows in that community, the community gets to know him or her. Mark and Roberta's neighbours are not fazed when they appear in their flat. The issue about whether it is better to deliver high quality special education services but in a mainstream setting-----

Marie Louise O'Donnell (Independent)
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I am not for exclusion; I just think we need to come up with very concrete measures. We want Governments to change and, in respect of what Deputy Ó Ríordáin was talking about, need very concrete examples. I have not read any, although I would like to read some studies because Professor Buckley is right in everything she says, but it is not enough just to say "inclusion" and, therefore, that it means equality. We need very good sociological, academic and language examples, although I think the level of verbal language is on the decrease in mainstream education because of this, this and this. It is very much on the decrease amid computerisation such that one might have another problem very soon. I absolutely take on board what Professor Buckley is saying, but we need far more concrete examples if we are to get away from a situation where the money is distributed generally, not specified and mainly based on numbers as opposed to need.

Professor Sue Buckley:

There should be some way of balancing properly the issue of need versus numbers.

Marie Louise O'Donnell (Independent)
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"Inclusion" is a very odd word.

Joanna Tuffy (Dublin Mid West, Labour)
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Before I go back to our guests, I might bring in some more members because there are many on the list. I will take questions from Deputies Daly and Doherty.

Jim Daly (Cork South West, Fine Gael)
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I welcome the delegation and have two brief questions. I am out of the classroom for as long as I was in it, but I was in the classroom for ten years and had a particular interest in special needs education. I would be interested in learning what Professor Buckley thinks about children with special needs moving out of the classroom for one-on-one teaching. It was the bane of my life when I was a teacher and I took some awful chances when I look back at encouraging parents to let their children stay in the classroom. I would give them extra help and think it worked in a number of cases. However, I know one cannot be global in something such as this. It is an issue I have all the time.

I have found today's presentations fascinating and say "Well done" to all of the contributors across the board. It has been very enlightening. This is a simplistic way of putting it, but putting another 1,000 SNAs and another 2,000 resource teachers into the system is not the solution, which was where we were coming from in previous discussions. While politics will pull and drag at both sides of that argument, we need to look at what we do and the way we do it. That is why I welcome the NCSE looking at allocation and assessment and how it allocates accordingly. This is being done after 20 years, but it is being done nonetheless. To be fair to us as a country and society, we have come a long way in dealing with special education challenges.

In the absence of the committee being able to do anything in reclassifying children with Down's syndrome as low-incidence, which the Minister seems to have said will not be possible in the short term - I presume there are good reasons for everything - what is the first short-term solution to what we are talking about? Would I be right in trying to distil it to the argument that every child should have an IEP? Do we in Ireland have the same arrangement as that in the United States? Is it the case that every child with Down's syndrome should, by law, right and common sense, have an IEP? If there was a pot of resources somewhere, would it be directed towards making more assessments available with a view to having an IEP? There are many resources that are not being used and directed as they should be. Tradition has more of a say than educational need and right. In respect of where we would like to see movement, should we try to push in the short term because parents of children in the system today will not benefit from the NCSE's re-evaluation of how it assesses and allocates? Should we push for more assessments at NCSE level? Would that be a productive solution?

Pearse Doherty (Donegal South West, Sinn Fein)
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I thank our guests for their presentations. A document was prepared for us by the Oireachtas Library and Research Service which assists the committee, although I am not a member. The first conclusion is that it is exceptionally difficult to identify how children with Down's syndrome are supported in mainstream classes on a national basis. That is where I want to start because we received the Ombudsman for Children's recommendations last December, one of which was that we needed to address the absence of arrangements to centrally monitor the impact of additional support measures on the educational progress of children with Down's syndrome. There is an absence of looking at the outcomes for children with Down's syndrome who are in this model that changed in 2004, did not assist children with Down's syndrome and was a negative. There are children with Down's syndrome who, because of other conditions, are receiving support. Is it Professor Buckley's view that one of the first things we must do is carry out additional research into outcomes?

Professor Buckley's contribution was very clear. It stated all of these children qualify under the heading of low-incidence and that all had language and memory deficits below their IQ expectations. This goes to the core of the matter because there is a broad acknowledgement within society that the NCSE's report is moving in the right direction. However, the problem is that the report may not be implemented. The Education for Persons with Special Educational Needs Act 2004 will not be implemented. The NCSE does not even call for the Act to be implemented because it is aware of the resource implications. Even it were to be implemented, we would be looking at a period of two years.

Professor Buckley mentioned IQ. A reference to IQ in respect of speech and language disorders is included for a reason. Am I right in saying it is included to show there is a disorder that is not part of normal developmental delay? The problem is that we have not been able to nail this lie or untruth. Children with Down's syndrome have a specific and distinct speech and language disorder in terms of development. If one proves this conclusively, one has hit the nail on the head. Therefore, they should automatically be assigned. Will Professor Buckley comment on this? The NCSE's report refers to lobbying by the parents of children with Down's syndrome. It acknowledges the fact that there is a specific speech and language condition for children with Down's syndrome and goes on to state it will be addressed in the new model. If it is to be addressed in the new model, it should be addressed now for the children in the system.

The NCSE has stated it could not establish an evidence base to support a recommendation that a child with Down's syndrome should be allocated supports over and above those allocated for children with syndromes that have associated co-morbid conditions. Will Professor Buckley refer to this also? I thank her for her presentation.

The fact that 300 teachers are coming tomorrow shows that teachers who are dealing with the issue in class know that the Department of Education and Skills is way behind on it. My wife attended one of the courses in County Donegal. I know the teachers who will attend over the weekend will get much out of it.

Joanna Tuffy (Dublin Mid West, Labour)
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Before I bring Professor Buckley back in, Senator Moran asked a question about research submitted this week by Donegal Down Syndrome. Will Ms Grant explain it very briefly?

Ms Gina Grant:

In response to Senator O'Donnell, if children with Down's syndrome were put on a list, we could get better research, but when children enter the mainstream, they go under the heading of mild or moderate disability. Even when children with Down's syndrome are born, they are included in the congenital defect group. They are not classified as children with Down's syndrome; therefore, it is very hard and scattered, which is why we need to recognise them in order that we can start building the research. That is a problem.

That leads me to what I said to the Minister, Deputy Quinn, in regard to a child who is born with a congenital defect. A prediction of needs is drawn up for such a child. We know that he or she will be entering the system in the next five years. The process of education should be started for a child born with a disability or diagnosed with a disability in his or first year so that the assessments can link with the school system. This would allow a child with Down's syndrome to receive full support and his or her development would be pushed from the outset. I asked the Minister to explore this issue because if we are put on the low-incidence list we can build on the research that is vital at this stage.

Joanna Tuffy (Dublin Mid West, Labour)
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Did Ms Grant submit research to the Minister?

Ms Gina Grant:

As I told the Minister, the research into Down's syndrome is limited. The latest research shows that the IQ of children with Down's syndrome is not as relevant as previously thought in the education system. I asked the Minister to investigate different systems and develop a prediction of needs that would include Down's syndrome so that we could produce valid research. I pointed out how little we know about the subject in Ireland.

Mary Moran (Labour)
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Is the Minister considering Ms Grant's submission?

Ms Gina Grant:

The national secretary of Down Syndrome Ireland and I met him in Glenties to discuss various issues arising in Ireland, including the lack of research and the way in which children face discrimination from birth. Everything is being estimated and we are unable to get accurate data. We are relying on Professor Buckley's research, which is fantastic and has helped my son, but we need to conduct research here.

Marie Louise O'Donnell (Independent)
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We want inclusion but we also want to be able to define the issues arising.

Ms Gina Grant:

We want our children to be involved in society.

Marie Louise O'Donnell (Independent)
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That was my point.

Ms Gina Grant:

We want them to be able to go to work.

Mary Moran (Labour)
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That was why I asked about Irish research.

Ms Gina Grant:

Two pieces of research have been produced in Ireland in the past 13 years but nothing has been commissioned on Down's syndrome. This is shocking. We do not want our children to be looked after by the State once they leave the system, but rather than spending the money afterwards on care the State needs to invest it at the outset. Additional funding should be also provided for preschools, but they need to be recognised before such investment can proceed.

Joanna Tuffy (Dublin Mid West, Labour)
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Deputy Daly asked what would happen if the Government did not reclassify Down's syndrome.

Professor Sue Buckley:

The first question was about one-to-one teaching. I tried to be swift in answering that question. As any child may need one-to-one teaching, a good educational reason is required to provide it. The research on delayed readers shows that if they are given one-to-one or small group instruction at an early stage they can catch up. Every school should be able to deliver one-to-one teaching when a child needs it. Ideally, class instruction should work and if it does not a small group should suffice. However, for some children even small group instruction will not allow them to make the progress they could make in a one-to-one setting. Wearing a different hat, we have just completed a trial on reading and language intervention that draws on international studies in this area. There is no black and white. If a child needs one-to-one attention, he or she should get it. That does not mean his or her education is not inclusive.

In regard to what people can do now, they have to insist these are low-incidence children and, as such, should receive some of the resource allocation. I do not see any other quick fix. I am worried that they have insufficient support in school. The support they need could come from an extension of the role of SNAs but also from expertise and specialists. Many class teachers have the requisite skills and knowledge but they feel it is not something they have done previously. Often it is a question of supporting the class teachers and reassuring them that they have the skills to teach the child. One cannot put a six-year-old child with poor communications skills in a class of 30 and expect him or her and the teacher to cope. In regard to the quick fix, I am not one to take "No" for an answer. It is a pity I am not speaking with the Minister. Just because he said "No" once, it does not mean I accept the matter is concluded.

Pearse Doherty (Donegal South West, Sinn Fein)
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I expect he is listening if Professor Buckley wishes to send him a message.

Professor Sue Buckley:

One has to argue that this is a quick fix which need not be costly.

Ms Patricia Griffin:

It is important to note that the numbers are very small. Approximately 120 children are born with Down's syndrome per year in Ireland, of whom 80% to 90% will attend mainstream schools. Some can be resourced under the current system but even if all of them need resources, they are not a large number.

Professor Sue Buckley:

Their numbers should be considered in the context of the total budget for children with low-incidence disabilities. They are probably a drop in the ocean. It would mean taking 15 or 30 minutes per week from some children to shift elsewhere.

Marie Moloney (Labour)
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That would not go down well.

Professor Sue Buckley:

It may not, but I argue it is a question of equity. Other groups of children may also have fallen off the bottom.

Ms Patricia Griffin:

There are no figures for children with Down's syndrome in our schools.

Marie Louise O'Donnell (Independent)
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That brings us back to that word "provision", which can choke as well as give a great sense of freedom.

Regina Doherty (Meath East, Fine Gael)
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It is a privilege to listen to Professor Buckley and I thank her for taking the time to meet us. We are not going to take "No" for an answer and I am delighted that she is supporting us. For the record, I ask her to explain how we will be excluding and damaging the 192 little children currently in primary schools who receive no resources from the educational system other than the teacher at the top of the class if we wait for the NCSE to report in several years' time.

Finian McGrath (Dublin North Central, Independent)
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I thank the Chair for allowing me to attend the meeting. I welcome the witnesses and thank them for their contributions. Taking off my hat as a legislator for the moment, I am also the parent of a young adult with Down's syndrome who attended a mainstream primary school. I have been involved in this debate for many years. Professor Buckley is highly regarded by parents in Ireland and internationally for leading the battle for civil rights and inclusive education.

I commend Professor Buckley on the magnificent work she has done over many years with Down Syndrome Ireland. I want to ask a few short snappy questions about the resource hour issues. I have presented the Down Syndrome Equality of Access Bill to the Dáil which I am trying to get onto the agenda for this session. It deals with the low incidence disability issue. I accept that we are in a downturn and resources are a problem but what gets up parents' noses is that we and our children are taxpayers and citizens and we feel very strongly that we have rights. The resources have to be put in and they will cost money. I told the Minister for Finance before the summer holidays that if he put 2 cent on the price of a pint of beer it would bring in €13.8 million. That would wipe out the problems of resource hours. That is a small sensible idea.

In respect of the average child with Down's syndrome between five and eight years of age in mainstream school, what minimum resource hours would Professor Buckley recommend? I am talking about the minimum hours. I think I heard her say 12 hours but that would be the stuff of dreams in the current climate. Professor Buckley says that inclusive education and mainstream education is the way forward. Does she also accept, taking a hard-nosed economic benefit analysis point of view, that having more independently educated young children will in the long term save the State more money? I think she said in her submission that we in the political establishment, all of us in the Oireachtas, are letting them down. Can she expand on that point? Is there a country in Europe, or anywhere in the world, which gives an example of best practice that really works and is efficient? That question comes up regularly in the debate on children with Down's syndrome.

Professor Buckley mentioned the importance of peer support which costs no money. When my daughter was in junior and senior infants and in first class in the local national school, older girls from sixth class took her away to do a bit of reading or play games, which not only helped my daughter massively, it sent a message throughout the school that it was inclusive. I meet those young women today and they all say they learned from having a child with a disability in their school. That peer relationship is important and does not cost a lot of money.

Professor Sue Buckley:

As members know I will be online at 3 p.m. on an international website so I have to keep my eye on the clock. There is an overlap in some of the questions so I will start at the beginning. If children are put into school without adequate support, the most common outcome is that they will drown in the system. They could become quiet and not learn very much but just stay there. Most children with Down's syndrome do not do that. If they cannot cope there will be behaviour issues. As soon as those arise they are out of the system. It will be said that they behave like that because they have Down's syndrome, not that they are behaving like that because they cannot cope and we are not properly supporting them. They may manage but they will not make the academic progress of which they are capable. Most of them will not manage without adequate support. They will fall behind, teachers will not know how to manage the curriculum and there will be behavioural issues. Then they will be moved out. That is the pathway.

We are talking about a range of children. We have probably made several of the points linked to the questions members have asked. Members probably heard me mention support hours, not resource hours. They are two separate things. The resource hour allocation of five hours would probably be fine. Some children may not need that much because we would be assessing them on that statement. Very disabled children might have 30 hours of teaching assistant support because they need someone to meet them when they arrive at school and when they leave. That is because we have had children with quite profound and multiple disability go right through the school system, including secondary school. That is the absolute maximum a child might get but that is an assistant, to make sure they are safe.

We do not allocate teaching hours in the way it is done here. Across the whole range another child with Down's syndrome might have only five hours of support assistance. Typically it is something like 20 hours for most children. That support person could be doing anything from care needs, helping them to attend in the class, small group or one-to-one teaching, preparing materials, working across the range of extra help that child needs. The model is that a teacher who is an expert in Down's syndrome may come from outside. We still have special education advisory teams. They would be likely to come every week and their role is training and consultancy and there is the special education person inside school. That is somewhat flexible. They could have teaching hours allocated. The short answer is that the five hour resource allocation would solve the immediate problem.

There needs to be a discussion about broadening the role of support assistants. I suspect that members will find it is going on anyway. The people in the schools are intelligent adults, they learn how to work in the classroom. I suspect that is happening but I believe there are union issues around that and so on but I will not get into that area. It is a question of balance. The resource teacher will not be there when a child's attention wanders and cannot keep up in the lesson. I agree that more data needs to be collected. All systems are different. We do not have resource teachers. Ireland has different pockets of expertise that have worked in different ways. Everybody’s cultural, community expectations and approach to running schools is different. Ireland needs to collect its own research data.

Professor Sue Buckley:

Yes perhaps on the working group.

Ms Patricia Griffin:

There is a consultative forum next week and I will be at that.

Professor Sue Buckley:

If there is anything else I can feed in I would be pleased to do so. I prepared this in a fairly short time but with more time we could have a more comprehensive review of the literature with this kind of information available. I am happy to help Down Syndrome Ireland and the advocacy group and so on although I have a lot of time pressures.

Marie Moloney (Labour)
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I am looking at the Ombudsman’s investigation following a request by two parents of children with Down's syndrome. The Ombudsman did not recommend that Down's syndrome be made a low incident disability. Why not?

Professor Sue Buckley:

Pass. I do not know what the Ombudsman was investigating or doing.

Pearse Doherty (Donegal South West, Sinn Fein)
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That is a policy issue.

Ms Patricia Griffin:

The Ombudsman said there was inequity in the way the system is being managed and that it was to the detriment of children with Down's syndrome. That was practically the same thing. It was to do with the general allocation model. The Ombudsman said that the present allocations have impacted on the fullest educational inclusion of our children and that this has resulted in a potential loss of opportunity for children with Down's syndrome. The report also stated that children with Down's syndrome had been adversely affected and we have always reiterated that point to the Department in any meetings we have had with it or the Minister.

It also upholds the view of Down Syndrome Ireland that Down's syndrome should be reclassified as a low-incidence disability and that children with Down's syndrome should have the necessary educational resources allocated to them.

Joanna Tuffy (Dublin Mid West, Labour)
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I am conscious that many parents choose special education schools for their children. Is this the right choice for some people?

Professor Sue Buckley:

It is probable that approximately 15% of youngsters with Down's syndrome will have acquired extra brain damage and have profound and multiple disability. For some of those children I agree that such schools may be the more appropriate place. However, I have a vision where we do not do that and where specialised units within mainstream community schools could provide whatever resources are needed. I do not want children segregated and put on a bus, and that is a much bigger issue. At the moment, many people, I suspect, choose a special school because they just do not think their child will be adequately supported; not because they would prefer it but rather they see that is where the child will be happy and safe.

Ms Patricia Griffin:

That is happening more at second level than at primary level. Most of our children at primary level are going into mainstream primary schools but at second level there is still a tendency for many of our members to put their children into special second level schools. There is also another issue in that the special educational needs organisers, SENOs, are becoming very aware of how difficult it is for parents to find second level places for their children. This is a significant difficulty, particularly in urban areas. I do not agree with this finding in the report but the special educational needs organisers are beginning to suggest that schools, when requested by the SENO, should be prepared to set up a special class in their schools for children with intellectual disability. In my view that is segregation. I had experience of this policy in one school, which was in receipt of a lot of money, and I was horrified to see what was being planned. One of the proposals was that the children's lunch break would be at a different time to the rest of the school. We have to be very careful and be aware that just because a proposal is recommended by the NCSE does not mean it is right.

Joanna Tuffy (Dublin Mid West, Labour)
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I thank our guests for a very informative and thought provoking discussion. I thank the members for their contributions and I thank our guests in the gallery. This is an issue which the committee intends to deal with on an ongoing basis. We will also deal with the report referred to by Deputy McEntee. We may make further recommendations as a result of this meeting.

Professor Sue Buckley:

I thank the Chairman and the committee members for such an interesting debate.