Understanding Down syndrome – are we doing the right research?

I recently had the honour of being invited to be a discussant at a symposium on Language, Reading and School Readiness in Down syndrome at the Gatlinburg conference on Research and Theory in Intellectual and Developmental disabilities (see http://kc.vanderbilt.edu/gatlinburg/program.html for program and abstracts). As my remarks were well received I decided to write them up for my blog and perhaps encourage some discussion. There were a number of interesting papers relevant to understanding learning and development in children with Down syndrome during the meeting and as I listened a number of questions emerged for me.
1. How relevant are ‘typical’ models of development? For example, in trying to understand the challenges that face children with Down syndrome as they learn to read studies frequently compare the way that they learn and use component skills with ‘typically developing’ children matched for word reading ability. One repeated finding is that the children with Down syndrome are ‘behind’ in their understanding and use of phonics – the ability to sound out letters and blend them when faced with an unfamiliar word. However, they are often competent at reading exception words – using visual sight word learning strengths. I think we need to be cautious in the way we interpret these results – as there may be different ways to achieve an endpoint. Given the incidence of hearing impairments in early years and the difficulties of developing clear speech, we should not be surprised that children with Down syndrome are not well set up to hear or manipulate sounds in words in an aural mode as they begin to learn to read and rely more heavily on the visual route to word identification than the phonological recoding one. In my experience, by the time children with Down syndrome have word reading ages of about 8 years, they do begin to be able to sound out words to read them and to spell and they are helped in this by the visual representation of the sounds in letters and by building words with plastic letters i.e. they go from the visual to the phonological as they are exposed to activities with letters and printed words. I am using this example to caution against the view that the only or even the best way for children with a disability to learn to do something is the way most other children do it. It may be more productive to recognise that there are different ways to reach an endpoint and to actually encourage children to use their strengths and build skills in a different order.
The ‘typical’ models we have of development are based on how children without sensory or learning challenges progress – they are not necessarily showing us all the different ways the human brain may be able to achieve an end point. I have used a reading example but I would argue this is just as relevant in other areas of development. If we teach children to sign by pairing spoken words with signs as they start to learn to communicate then we may well be building different pathways in the brain and ones that appear to help them retrieve spoken words as they progress. If delayed motor skills impair children’s ability to explore, manipulate and understand objects can we teach them by demonstration and by physically supporting them to explore toys at the age when other children begin to play with objects?
2. The difficulty of interpreting studies using ‘typically developing’ controls. Many studies compare children with Down syndrome with ‘typically developing’ children matched on mental age and then identify that the children with Down syndrome are delayed on a measure – for example that they are less likely to use mental state words such as know, think, when telling a story. We usually have no information on how similar the early language learning experiences of the two groups of children have been. Similarly, if we are looking at reading or number outcomes, we have no idea whether the two groups of children have had as much experience of books or counting games at home or how similar their educational experiences have been. Unfortunately, most studies demonstrating differences are interpreted as telling us something about the learning abilities of children with Down syndrome rather than reflecting the more complex picture. Development is dynamic and social – children learn in interaction with others. In this transactional process, child and adult influence each other – if a child is not giving the cues expected of a child of their age it is highly likely the input given to them is not the same. We need to take account of the transactional nature of development if we are to really understand the developmental profile described for children with Down syndrome and how to effectively change it.
3. Are intervention studies a way forward? In many presentations at the conference the researchers mentioned – as they described a study aimed at perhaps elucidating causal factors behind the children’s delays or difficulties – that once we knew more it would inform interventions. I would argue that this is not the case – we may learn more about causes from intervention studies designed to test causal hypotheses. We may also address the last issue raised – is the delay due to impoverished learning inputs? Training studies may be the most parsimonious way to untangle the effects of changed or impoverished input from an underlying learning difference linked to the extra chromosome.
4. Closer links to practitioners. I am always very impressed about the quality of researchers working in the USA and the research teams that focus on disability. However, in listening to some of the work that may be relevant to educational progress I was worried about the apparent lack of knowledge of the practical work going on in the field of education. Many educators and those who provide training for educators are well informed about research, the cognitive phenotype associated with Down syndrome and the social and behavioural challenges – and have been suggesting ways to adapt teaching and support to overcome some of these challenges in the classroom for a number of years. While the effectiveness of most such approaches has not been subjected to direct evaluation there is a great deal of practical experience to be shared by educators and closer links between the research and practice communities would benefit both and move things forward faster for children with Down syndrome and their families. I would suggest this applies equally in the field of speech and language research and therapy.
5. Individual differences. I was pleased that another issue raised by a number of presenters was the need to document individual differences and not just group trends. Group studies are important to show general trends and support policy decisions. However the RCT that shows that an intervention works for a group does not mean every child in the group benefited. The converse may also be true – an intervention which did not show benefits in a whole group analysis may have benefited a subgroup the characteristics of which can be identified but this may never be published (babies and bathwater?). As has been said by others and I have said elsewhere, what a parent, teacher or therapist needs to know is ‘what works for which child in what circumstances’. I think it really is time the research community took this seriously and ensured that group studies also collect in-depth data on the progress of individuals and the factors that specifically affected them in the real world – in both intervention studies and also when describing ‘differences’ in experimental studies as these also vary in extent between individuals with Down syndrome. There is another challenge in here – that when we select measures if at all possible we use measures which mean something in the real world i.e. that can be understood by teachers and parents and have a practical relevance.
6. We need to address the issue of measures. This was a point I discussed with a number of others at the meeting. If we are to move forward as I think we urgently should and make intervention studies the priority – then we need to accept how poor and often inappropriate most of the standardised measures we use actually are. The three main issues are firstly, inadequate sensitivity – most cognitive and language measures are too crude to capture change which may be having a quality of life benefit for individuals with Down syndrome. Secondly unhelpful norms – most were never designed specifically for those with intellectual and developmental disabilities so usually no standard scores can be obtained. For relevance to the life and education of someone with Down syndrome – we need to know how well they are progressing given they have Down syndrome – not against norms for the non-disabled population. Thirdly, age inappropriate content – how ethically appropriate is it to assess the language of a teenager or an adult with Down syndrome using a preschool language test?

Every school should be inclusive

In my view every school should be an inclusive school to benefit all pupils. I will explain what I mean based on schools I have seen working this model. An inclusive school recognises that some 20% of the general education students will have additional educational needs during their school career before we begin to think of students with IEPs or Statements of Special Educational Needs. 1 in 6 adults struggle with literacy in the UK (5 million adults) and 1 in 7 in the USA (32 million adults) – in my view our schools have failed these people. Poor literacy too often leads to unemployment, crime, misery and wasted lives. A significant number end up in the prison system where more than half have poor literacy levels. These figures have been much the same for many years yet I do not think most schools address this in the way they could.
A child who is struggling to learn to read can be spotted by Year1/Grade 1 or before. Research studies show that if these children get 1 to 1 or small group help quickly many of them can catch up. This requires a school to plan to be able to deliver this individual help quickly. In a Year 1/grade 1class of 30 children 5 are likely to need and benefit from this approach. Every primary and secondary school should have a Learning Resource area in the prestige part of school ideally linked with the Library. Every school should have Learning Resource teachers and a team of assistants/aides who can work flexibly to go into classes to provide extra help for child or take children for individual and small group sessions. Any child including a gifted child could use the Learning Resource area – it should have computers and not be stigmatised as only for ‘slower’ children. A school with a flexible team of teachers and aides can successfully meet the needs of all children.
I have seen this model work well in primary and secondary schools in the UK and South Africa. In these schools pupils with Down syndrome were welcomed and not seen as a new challenge by the school as the resources were already in place to help any child succeed. These schools focus on raising children’s self-esteem, finding out what they can do, respecting and valuing all individuals. They teach children the caring values we would all like to see in the adult communities we live in.
An inclusive school Head-teacher knows that a teacher cannot teach 30 or more children in a class effectively in any year group. He/she plans to have the resources to take any child into small group or individual teaching to effectively meet the child’s learning needs. Most schools could change to this inclusive model and become more effective for 20% of their children, and probably all their children, very quickly by just reorganising their people and space resources. It is a matter of beliefs and attitudes not money. In the UK and USA most schools are well resourced with teachers and assistants/aides and could plan to use these resources better. The most impressive inclusive school I have visited was in South Africa and had very little money but a wealth of commitment and dedication from its staff and community to do the very best for all pupils in its neighbourhood including those with disabilities. Every child needs to feel valued, experience success and feel they belong in our schools.

Parent power is changing education – keep it up!

In recent months I have delivered teacher training in Hertfordshire; UK, Donegal; Ireland and Texas; USA and each event was the result of parent power.
Last week I ran 2 days of training for teachers and assistants from 16 schools in the North East Independent School District (NEISD http://www.neisd.net/ a large public school district in San Antonio. I was last at NEISD in January this year training the staff of 10 schools taking part in the first US pilot of DSE’s Reading and Language Intervention (RLI http://www.dseusa.org/en-us/resources/teaching/rli/ ). The pilot schools have been supported by the senior special education team at NEISD. The team invited me back last week to train more schools and asked their special educators to use RLI with other children with Intellectual Disability as well as those with Down syndrome – we have not yet collected all the pilot data so I assume they have been impressed by seeing the programme in action for themselves.
How did we reach San Antonio and start the pilot? It was all due to the efforts of parents led by Marie Livingstone – they set up LLQ (Living, Learning, eQuiping children with Down syndrome to live full inclusive lives http://llqusa.com/ ) after hearing the DSE team at the 3 day Education Conference in Austin Texas in 2010. They were determined to improve the education their children were receiving after hearing what is possible and what should be happening in schools for children with Down syndrome.
Next week I will be at the Region 13 Education Service Centre http://www4.esc13.net/ running RLI training for teachers from 12 of the 19 education Regions across the state of Texas and training the first US based RLI Trainers. In January Region 13 invited me to run RLI training for their own region staff and are now hosting a much larger event that is state-wide. Yesterday they hosted a day workshop on ‘Developing social competence and managing behaviour’ for over 70 parents and teachers with the Down Syndrome Association of Central Texas, DSACT. DSACT hosted that 2010 Education conference – more parent power.
In January and again last week, with parents and the President of the NEISD Board, I met with a number of people at the State level with education and disability remits to discuss issues that need to be addressed possibly with legislation including full access to inclusive schooling without a bureaucratic and sometimes legal battles, better access to literacy resources and full access to the general education curriculum. The Texas parents are driving this and will see it through but I am pleased to contribute.
Parent professional partnerships
A defining feature of this work in Texas is parents and professionals working openly together. Parents start the process – ask for more for their children and some excellent professionals hear them and help them to make it happen. In Hertfordshire, parents and head-teachers working together secured the funding to train 25 schools in RLI in May and I return in July for a follow up day. In April, Donegal Down Syndrome Association hosted training on Effective Education for Teachers for some 80 teachers and assistants (http://www.donegaldownsyndrome.com/ ) and parents from this group are lobbying the Irish government to improve the support that their children get in school.
What are the education issues we still need to be campaigning for?
Full inclusion – having the right to be a full member of an age-appropriate mainstream school class and access the curriculum. In the USA, as in other countries, this is a right in law but parents still have to battle to get it. I am shocked when asked to help to get a 4 year old into kindergarten and find lawyers acting for school board to keep him out. I am very shocked at the bureaucracy – 19 professionals signing documents for a 4 year old, many of whom barely know the child? How much does this cost? To what purpose? This is a human rights and disability discrimination issue in my view.
Breaking the barriers – while most children with Down syndrome may be on a mainstream site in the USA and in other countries – they are still not full members of the school community, they belong to special education and that room down the hall. They are not seen by the general education teachers or their peers as full members of the class – the class teacher is not fully responsible for them. They do not access resources and remedial programmes available on the campus for other students even though they could benefit. They are labelled as different – what does this do to their self-identity and self-esteem? It is not just an education issue.
Resource rooms – used well these can be an asset but how much better if this was a learning support area for any child in the school needing extra one-to-one or small group teaching. Too many children spend too much time in the resource room – or the self-contained classroom. I even still hear of special education classrooms with children from kindergarten to grade 5 in one room. These children will have a wide range of individual needs. How can a teacher possibly teach this group? Can anyone tell me how any educator, head-teacher or school board can justify this and argue it can be the way to offer these children effective education?
These things will only change when parents absolutely refuse to accept them. Do not underestimate the power of parents, especially when they stand together in a district. Parent power has changed the world for our children over the last 40 years – we need to continue to stand up and fight for their rights. Please share your stories with me to encourage others and share the resources you have found that may help others in this fight. Meanwhile thank-you to all my new friends in Texas, Herts and Donegal – it is a privilege to know you and learn from you. I and DSE will continue to help you as much as we can with our experience, information and training – just ask.

Putting my toe in the water

I have started this blog to share what I am learning as I engage with so many interesting, informative and dedicated people – parents, researchers, and practitioners (particularly educators, speech and language therapists and early interventionists) as I am privileged to travel and work widely within the Down syndrome community.
Be patient as it is going to take me time to be fully proficient with the technology. I will be sharing what I am doing and learning plus musing on some issues as they come to mind during my work such as what really constitutes evidence?? I am also happy to receive questions and will answer if I can. My aim is to both share my expertise and opinions and to draw in all the expertise you all have out there as we go along – to use social media to accelerate accumulating and sharing all our knowledge and expertise for the benefit of individuals with Down syndrome and their families.
This blog represents my personal views and not necessarily those of any organisation I work for or with! You can send questions to my blog or my e mail at sue@suebuckley.org . I am also trying twitter @SueBtalk