At Ambition Institute’s SEND roundtable, hosted in partnership with CST, Simon shared thoughts on how we need civic society to change if we are to support young people with disabilities to have a good life.
The fragility and dysfunctionality of the SEND system is well researched and well known. Whether it be the Lamb Inquiry (2009)[1] stating that, "…we need to respond urgently if parental confidence is going to be increased and children’s life chances improved.”, or the Public Accounts Committee (2019)[2] commenting that, "Many of the 1.3 million school-age children in England who have special educational needs and disabilities (SEND) are not getting the support that they need. This is a failure that damages their education, well-being and future life chances.”.
The poor experiences of too many children and families are not born of a lack of knowledge, but rather of inaction. Broadly, it is not that we do not know what to change, it is that those in a position to improve the system have so far chosen not to address what we do know, or secure the legally compliant implementation of that which has changed already.
The system is failing. Children and families are paying the price in lives less well lived as a result.
We need to focus less on remediating processes without having a clear understanding of the impact we expect to see on quality of life, and spend more time defining what success looks like societally.
It is not just the education system that must change. It is not just the wider statutory services that are required to drastically improve how effectively they discharge their responsibilities regarding children and young people with SEND, in particular those with learning disabilities. We need to reflect on the extent to which society is encouraged and enabled to discharge its collective responsibilities and acknowledge that supporting those with learning disabilities is a civic responsibility as much as it is a governmental one.
In the Institute of Health Equity’s report, A Fair, Supportive Society (2018)[3], the life outcomes of those with learning disabilities are set out in stark relief. Statements such as, "People with learning disabilities die, on average, 15 to 20 years sooner than people in the general population.”, or "Fifty per cent of people with a learning disability experience chronic loneliness, compared with around 15–30% of people in the general population.”, articulate the severity of the situation faced by those with learning disabilities.
So, whilst we are right to raise concerns about education, health and social care services that are structurally inadequate and that systemically fail children and families, we also need to be asking questions about how we address lifelong issues such as ill health and chronic loneliness. We need to interrogate why this data is not in the public eye and why nobody is taking the knee for those with learning disabilities, in the way that grass roots social movements have recently taken up other causes to great effect.
Some of the explanations for this can be found in Simon Jarratt’s book, Those They Called Idiots: The Idea of the Disabled Mind from 1700 to the Present Day[4]. Here, the author charts the social inclusivity of people with learning disabilities and how their support and place within society was initially seen as a civic responsibility. This changed during the nineteenth century in what Jarrett refers to as 'the great incarceration', with the movement of people out of their communities and into asylums. Whilst there has been a shift back towards greater social inclusivity, we still have concerning levels of use of medicalised institutions, and people with learning disabilities still lack sufficient visibility and social value. And yet, there is nothing intrinsic about having a learning disability that impedes a person’s visibility or social value, it is that society chooses to turn its head. We create the loneliness that we have a collective responsibility to resolve by failing to celebrate the inherent humanity of those with learning disabilities and value what they offer our social fabric.
If we accept that we have become progressively less inclusive where those with learning disabilities are concerned, what are some of the things that we in education can do to help to rebuild a greater sense of collective responsibility in wider society, and enable wider society to pick up the baton as statutory services withdraw or are withdrawn?
One of the most important things we can do is increase the visibility of those with learning disabilities within their communities.
As someone who works within the Specialist sector, I am very aware of the segregated nature of our provision. As such, we have developed and sustained relationships with our local schools for more than thirty years, to ensure that every child up until the age of sixteen has half a day a week working in partnership with their peers in mainstream schools. In Post-16, our curriculum is constructed in such a way that off-site education is at the heart of what we do, ensuring that our students are applying their knowledge and skills in real life situations, interacting and engaging with the other members of our local community.
This work is supported by building close links to the private sector, working with employers to ensure that our students get access to work experience and that employers can develop their understanding of how to effectively support people with additional learning needs in the workplace.
An area in need of significant further exploration is how we better understand the impact of education on later life in order to better inform changes to what we do. Currently, there does not appear to be any analysis of what young people with learning disabilities go on to do in their lives, based on the quality of the education they receive. We talk of having an evidence informed education system, but for those with learning disabilities, to what extent do we understand whether an ‘Outstanding’ education increases the chances of going on to having an outstanding quality of life?
We also need to look hard at how we define successful outcomes for those with learning disabilities and how those outcomes are articulated. This is with the intention of supporting those less familiar with the individuals we work with to see the potential that we see and to value the difference that they bring. As a school, we have ceased all commercial accreditation. This was in part because the administrative requirements of certification were constraining our curriculum, but also because we found through discussions with our alumni families, they were either not valued by other settings or in some cases acted as a barrier to future opportunity.
Finding new ways to enable wider society to understand what our students can offer, and working hard to reduce the extent to which this information can be doubted, has been a focus of ours for some time now. This has resulted in the production of digital business cards accessible by QR codes, annotated photo books evidencing the application of knowledge and skills, and CVs highlighting what the young person can do alongside the support required to enable them to maximise their potential beyond the school.
One further barrier that needs careful thought is that the system’s notion of transition, from the support provided by statutory services to wider society, is more of a transaction. With limited ongoing involvement from those in schools and wider services, who are well placed to support, we risk losing the momentum built through education and abandon families to the variabilities of a society that is too often structurally ambivalent towards those with learning disabilities.
But these changes to practice within schools will only have sustained impact if we also stop focusing on the remediation of deficits located in the child, and think more about how we can enable society to better embrace difference and see its value in contributing to a rich and vibrant society. We talk of Preparation for Adulthood, but spend far less attention to supporting society to be able to better embrace those young adults with learning disabilities who leave our schools.
It is time that we stopped compartmentalising complexity and recognised that our responsibilities are not neatly defined by ages, settings and job titles, but instead stretch out beyond systems into communities.
We need to focus less on remediating processes without having a clear understanding of the impact we expect to see on quality of life, and spend more time defining what success looks like societally.
And we need to acknowledge that system reform without cultural change might improve the journey, but that means little if the destination is still lacking a sense of enduring quality and fulfilment.
So, as well as thinking hard about what we do within our schools we also need to take action as a society to rebuild our collective responsibilities for those who need support in order to thrive.
We need to move beyond the singular pursuit of system efficiency, constrained by presumptions of cost and value and embrace a journey in pursuit of a life well lived. That is the destination we should be aiming for, as a profession and as a society, that is where we want to arrive.
1. The Lamb Inquiry: Special Educational Needs and Parental Confidence (Crown Copyright, 2009)
2. House of Commons Committee of Public Accounts: Support for children with special educational needs and disabilities (Parliamentary Copyright House of Commons 2020)
3. A Fair, Supportive Society (Institute of Health Equity, 2018)
4. Those They
Called Idiots: The Idea of the Disabled Mind from 1700 to the Present Day,
Jarrett S, Reaktion Books, 2020
The CST Blog welcomes perspectives from a diverse range of guest contributors. The opinions expressed in blogs are the views of the author(s), and should not be read as CST guidance or CST’s position.
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