"It’s almost as if they don’t exist”: Education policy failing to account for learners with PMLD

The research, which is published in a book launched on Tuesday 9 November, found that the key piece of statutory guidance underpinning education for PMLD learners – the Special Needs and Disabilities (SEND) Code of Practice (2015)– indicates that teachers should prepare them for a future that involves independent living, possible further education and employment.

Researchers argue that these are highly unlikely to represent realistic goals for most children with PMLD. Broadly, PMLD describes people with a combination of very severe learning difficulties, sensory impairments, physical disabilities, complex medical conditions, and challenging behaviours. Most require very high levels of care and support throughout their lives, including with tasks such as washing and eating.

The study also analysed other key health and social care policy documents on which support for children with PMLD is meant to be based. It found that these often make similarly unrealistic assumptions: “because judgements are based on the experiences and values of the policy-makers, because all types and levels of disability are seen as effectively the same, and because people with PMLD tend to be viewed as non-contributors to society”.

For example, Valuing People Now, a Government policy document published in 2009, states that people with learning difficulties – apparently including those with PMLD – “should be supported to pay taxes, vote [and] do jury duty”.

The book, Enhancing Wellbeing and Independence for Young People with Profound and Multiple Learning Difficulties, combines this policy analysis with the findings from staff surveys at more than 110 special schools in 20 countries, including 52 of around 300 schools that teach PMLD pupils in the UK.

It was co-authored by Andrew Colley, a former special education teacher and lecturer, who did the research as part of a Masters Degree at the Faculty of Education, University of Cambridge; and Julie Tilbury, Lead Teacher for children with PMLD at Chailey Heritage School, East Sussex.

Their findings highlight the outstanding practice of professionals working with pupils with PMLD pupils, but also suggest that teachers rarely refer to the existing policy guidance except when completing official documents. Asked if they felt that the SEND Code of Practice took account of learners with PMLD, teachers commented: “it doesn’t”, “not at all” and “it’s almost as if they don’t exist”.

“The way wellbeing and independence are defined in policy doesn’t appear to support these learners and ends up excluding them because of the complexity of their disability,” Colley said.

“Most of the guidance that exists assumes their education can be rooted in neurotypical expectations about employment or making an economic contribution when the reality is they will probably never be able to work. The policy covers children with PMLD, but doesn’t cater for them. We need a completely different kind of social contract for these young people.”

There are around 11,000 learners with PMLD in English schools, and an estimated 75,000 people of all ages with PMLD in the UK. Previous research has attempted to identify what ‘wellbeing’ and ‘independence’ should mean for these individuals. In general, it recommends that schools should focus on helping them to live with dignity, form social and emotional relationships, stay healthy and active, and communicate – which for people with PMLD often involves unconventional styles of communication such as blinking and physical gestures.

Contrastingly, the SEND Code of Practice, which makes just one reference to pupils with PMLD in 287 pages, states: “With high aspirations and the right support the vast majority of children and young people can go on to achieve successful long-term outcomes in adult life,” before referring to “higher education and/or employment” and “independent living” as examples.

Many practitioners working with PMLD learners treat the Code as an irrelevance, the researchers found. As much as possible, teachers create learning programmes which respond to the needs of each individual. In line with the recommendations of specialists, this often means that lessons prioritise the enhancement of wellbeing and health, communication, and the development of basic skills such as washing, eating, and independent movement. “There is fantastic work going on in schools, but it is completely separate from what policy dictates,” Colley said.

Despite the efforts of education professionals, the study also highlights the limited opportunities learners with PMLD have to engage with their wider communities. 80% of UK teachers mostly or completely agreed with the statement: “the social life of someone with PMLD is largely focused on their family or school”. Almost 50% felt that families with a member who has PMLD “live isolated and unfulfilled lives”.

The research calls for a different type of policy framework for learners with PMLD which focuses on helping them to become happy, fulfilled and empowered adults, with a sense of belonging rooted in warm and trusting relationships.

Colley added: “To demand that their education should lead to independence in a conventional sense stigmatises their condition, as well as their families. Just because pupils with PMLD are unlikely to work or own a house doesn’t make them any less worthy of our attention as human beings.”

“Addressing this also gives us an opportunity to think differently about what education for all young people really means, beyond the perspective of employment or academic attainment. A really inclusive education system that takes PMLD learners into account demands that we look for something more for everyone.”

Enhancing Wellbeing and Independence for Young People with Profound and Multiple Learning Difficulties is published by Routledge.