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.