Campaigning for inclusive education for children with Down’s syndrome

with Chris Barnes, Down's Syndrome International

Diversity and inclusion. Two words we champion daily, the holy grail for those in the disability community. But what do they mean? And how do we achieve them? 

We live in Cornwall, and as you will know, you are mostly restricted to what schools are close enough to home. I eventually chose specialist provision for my daughter Natty, who has Down's syndrome, as it proved the only way for her to be fully included in all aspects of school life. It wasn't an easy decision and I'm interested in finding out about the educational experiences of other young people with SEND in a range of settings.

Chris Barnes is the Inclusive Education Officer at Down Syndrome International. He is a former primary school teacher, DSP, and SENCO of more than 12 years with experience working in a wide range of schools. He has a wealth of experience in successfully & effectively including children with special educational needs & disabilities in mainstream classes. DSi is a UK-based international disabled people's organisation, including individuals and organisations from all over the world, committed to improving quality of life for people with Down syndrome. It promotes their right to be included on a full and equal basis with others.

Chris took a closer look at those key questions and gives us an insight into what goes on behind the scenes at this global charity as he sums up the worldwide events of World Down Syndrome Day 2022. The day brought us all together to celebrate, showcase, educate, inspire and share resources as well as wearing our funky socks and fundraising for their vital work.

The DSi Inclusive Education Campaign by Chris Barnes

At DSi, we have spent time researching and gaining a deeper understanding of what the term ‘inclusive education’ means for learners with special educational needs & disabilities (SEND), and for those within, and working for, education systems. It's a concept – and a buzz-word – that has become synonymous with SEND. Through interviews, discussions (and debates!), with a whole host of stakeholders, we have started, and are continuing to develop, a campaign based on sharing key messages around the definition, and the implementation of, inclusive education.

Internationally, the notion of inclusive education has been around for several decades, and the majority of countries in the world have agreed, in principle, to apply its fundamental values. A small number of countries, the UK included, have placed reservations on these requirements. This has led to misconceptions about its intended definition.

It’s very easy to search for inclusive education political mandates and legal agreements before pointing out that no country has yet fully achieved these goals! However, as part of the United Nation’s Sustainable Development Goal #4 (‘Inclusive Education’), many countries and advocacy organisations, are aiming for more success by 2030. But what would that look like?

What does inclusive education look like?

We began by first identifying stakeholders within education systems and recording their views and opinions. Example questions included: ‘What is an inclusive education? * What does it feel like? What are the barriers to an inclusive education? Who does an inclusive education system benefit? What does ‘mainstream’ mean? How can all learners be educated together? How can a dual system of mainstream & specialised work together better? How can teachers of the future be better prepared? How can inclusive education work for all children?’

*Note – Some advocates don’t believe this question needs to be asked as ‘…The answer is written in black & white and available online (UNCRPD, general comment 4 – Inclusive Education) …’ This is perfectly true, but we believe that there is a monumental lack of understanding, and general lack of knowledge about inclusive education by all stakeholders, including educators and policymakers. Answers to the question confirmed this. 

The school climate for SEND learners

Through listening to the responses of self-advocates, peers, parents, teaching staff, school leaders, student teachers, education professionals, lecturers, and SEND experts from the UK and internationally, we can begin to describe the school climate for learners with special educational needs and disabilities. We have gone on to listen to the questions, concerns, and suggestions from stakeholders and these have helped form the basis of this campaign. 

This campaign aims to get to the heart of reality. We have visited schools, worked in schools, watched lessons, read extensive guidance and publications on inclusive education, listened to teachers and leaders on the front line, and heard the pleas of parents (from various contexts and with differing viewpoints).

It is our belief, in alignment with international guidance, that an ongoing transformation of education systems and cultural attitudes is required to realise a 21st Century education for all children, with or without SEND. In other words, education systems, and education practices, that serve children with SEND will serve all children more effectively. 

What can we expect today?

Back to reality… Advocacy for the future is crucial, of course. But so is what’s happening today, in (or sometimes, out of) classes in schools and other education settings. This campaign hopes to begin scratching the surface to discern:

  • What can realistically be expected in schools today, within the current system?
  • How can teachers and school leaders include all learners?
  • What mindset must be adopted by school staff, leaders, and policymakers?
  • What culture must schools cultivate to become ‘inclusive’?
  • How can inclusive education benefit all children?
  • What is the cost of inclusive education?’    

Inevitably, these questions and dozens more like them, lead to more questions. Herein lies a great comparison to the process of including a learner with an intellectual/learning disability, within their local, ‘mainstream’ setting, alongside their neurotypical peers.

There is no quick, easy solution that can be achieved by a few; it must be undertaken and endorsed by the whole school community through a course of continual problem-solving and adaptation. It is only when a culture of inclusion is created among all staff and children when appropriate time and resources have been allocated, and the individual is truly consulted and considered, that they will feel included.

Working at local and systemic levels

This philosophy can be applied to education at the system level. While the success of schools continues to be graded primarily on standardised, academic merit, rather than on providing for, and welcoming, a cohort representative of society, school systems will struggle to evolve from the current mainstream/specialised setup. 

One of the UK Project’s aims is to engage with the next generation of teachers. This past World Down Syndrome Day we hosted a free webinar for trainee, and newly qualified, teachers across the UK, and abroad. Experts representing schools and universities, alongside SEND professionals, discussed some of the key points of this campaign in plain, open-minded talk, aligning with DSi’s Education Guidelines; the basis being ‘Inclusion for children and young people with SEND’. Our discussions hope to move beyond the standard rhetoric of ‘What is expected?’ to ‘How can the individual be considered?’

We hope that engagement with teachers, and leaders, of the future, alongside their lecturers, will promote an ongoing discussion about an inclusive mindset that can remain central to their daily practice.   

The campaign's future   

As our campaign evolves and develops over the coming months we will be speaking with larger and more powerful voices for SEND, education, and disability advocacy. On the other hand, we will continue to connect and build relationships with the people we aim to serve: children and young people with disabilities, and their families. Phase two of this campaign will focus on questioning / challenging entrenched vocabulary and language in education & inclusion, while also amplifying the voices of parents and young people. 

Looking to the future. While system-level changes are essential, we believe that, as with climate change, young people hold the key. The voices and opinions of, and education for, children with and without disabilities is a crucial area of focus, to ensure a more inclusive society of tomorrow.      

Upcoming DSi Inclusive Education for Parents webinar:

Register: Inclusive Education webinar for parents

The webinar will explain what you can advocate for and provide advocacy tools to help you achieve this. It'll also answer your questions about inclusive education empowering you on your journey.

Date: 23 May 2022

Time: 10:00 am (UK time)

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Hayley Newman
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