By Peter Imray
This short response paper concentrates specifically on children, young people and adults (CYPA) with complex learning disabilities (CLD), a fairly new ‘category’ of LD marking those who are on the severe end of severe learning disabilities. The ‘label’ itself does not carry any special significance, other than being an indication of the appropriateness of a particular curriculum pathway (the Informal Curriculum) within Equals’ multi-tiered curriculum model. It should be noted that, though distantly related, it is different to CLDD (complex learning difficulties and disabilities) as described by Carpenter et al (2010). The issues described in this paper form a significant part of an evidence-based research project edited by Imray et al (in print) which is due to be published shortly by Routledge.
The relevance of CLD to the Thomas et al paper is that such CYPA are increasingly presenting themselves in special (specialist) school settings across the UK (and I would imagine across all economically wealthy countries), though apart a single non-peer reviewed article (Imray et al, 2017) and Equals publications (Equals, 2020) there has been little research into the issue until now. Such learners are functioning at very early developmental levels when compared to neuro-typical learners, they often have an autism diagnosis, they are usually non-linguistic communicators, ambulant, and crucially, present as unwilling to be part of the educational process. They often express themselves through negative and rejecting challenging behaviours or are overly passive and disinterested in what conventional UK special schools operating a conventional curriculum might have to offer.
In 2015, taking the issues of empowerment, agency and student voice as central components of their school’s pedagogy, St Ann’s School in West London, a secondary (11 to 19) special (specialist) school and now an Ofsted rated ‘outstanding’ school, set out to resolve a major dilemma with regard to the educational lives of 7 of their students. The school was being consistently and incrementally stretched in its ability to work with a number of young men who were not responding to what might be termed classic PBS (Positive Behaviour Support) style interventions. Six of these seven were deemed SLD/ASC and one SLD, all functioning at the severe end of SLD, all displaying consistent and extreme challenging behaviours as multiple daily occurrences. All were assigned dedicated and highly experienced one to one support staff in their classes; two students were assigned two to one. All had personalised behaviour support plans aimed at intervention before the behaviour happened, that is, they were pro-active rather than reactive. Physical interventions from staff to students were kept to an absolute minimum, only used to protect others, maintain dignity, and help the student in crisis to get to a safe space as quickly and as easily as possible, but were still multiple daily occurrences.
The extremes of behaviour were being ‘managed’, but it was clear that there was deep unhappiness from the learners and their peers, growing concern about quality of life issues from staff, parents and others and it was very difficult to clearly ascertain a reason behind any of the underlying issues, other than a profound dis-engagement with the formal educational process. A decision was therefore made to place all seven students in one class (Telstar Class) where the primary objective would be to build positive, nurturing relationships. Furthermore, on the basis that all seven responded consistently aversely to doing anything that they didn’t want to do, all demand was taken away. That is, the learners were free to do anything or nothing, free to come and go as they pleased, free to be on their own, or work, or not work, with any of the 10 highly experienced members of staff assigned to the class. There was no enforced timetable, though constant opportunities to engage in Free Play and engage with others were consistently provided. All order, structure, routine and most importantly, demand, were taken away. This became the basis of Equals Informal Curriculum for learners who were now recognised as having complex learning disabilities.
If we begin with the assumption that all behaviour has a function it follows that it is, in the school context, a professional responsibility on the part of adults to work out what a child’s behaviour is communicating. This is the essential purpose of empathy and is a particular concern when working with children with significant difficulties with speech, language and communication (Crombie et al, 2014, 18).
Prior to the setting up of Telstar and the change to an Informal Curriculum approach, staff instigated a baseline assessment for all 7 students. As an example, one student, pseudonym Pathman, and by no means the most challenging of the group, exhibited a daily average of 62 violent or aggressive behaviours such as pinching, nail digging, biting, spitting, and throwing objects with a low point of 18 and a high point of 122 incidents.
Over the first three terms (around 40 weeks) of the ‘experiment’, behaviours came tumbling down so that violent behaviours, of the type described above, which were both routine and daily occurrences for all 7 students now represented only 0.78% of the weekly occurrences for the whole class. In a seven week, half term period 2048 individual 45 minute sessions were recorded; only 16 of which were deemed to involve crisis behaviours. The curriculum had been narrowed and peace and calm had broken out!
Table 1. Individually assessed 45 minute long sessions taken over one continuous seven week period in Telstar Class with levels of challenging behaviour (CB) explained.
|Colour Code||Definition||Number of sessions||Percentage of total|
|Amber||Some indications of stress leading to an expectation of CB||113||5.52%|
|Red||Individually defined CB displayed||16||0.78%|
As if this wasn’t enough there appeared a remarkable correlation between reduced challenging behaviours, increased self-regulation and increased engagements involving positive, interactive communications, initially just with staff members, but latterly also with peers. Such positive interactions have extended to home, with a number of parents reporting significant positive changes to their children’s abilities to interact, engage and self-manage potential crises. Individual’s communicative abilities significantly increased, especially in the area of signing, with the vast majority of communications now being positive as opposed to the previous negative predominance.
Eight years on and St. Ann’s now has a LA funded, purpose built unit costing £1.6m which 17 students currently on roll. The Equals Informal Curriculum model is established in some 25 specialist schools across the UK, costs only marginally more than average special school placements and is saving LAs many hundreds of thousands of pounds in fees for private day and residential services as described by Thomas et al. St Ann’s is however, hugely concerned with what happens to their charges once they leave school at 19, since there is a clear understanding that the Informal Curriculum is a philosophy and a way of life; it is not a ‘cure’. That is, the pedagogical logic of the approach has to be continued beyond 19 and quite possibly for life; it cannot be suddenly taken away with the expectation that it is no longer needed once young people experiencing complex learning disabilities become adults.
With this in mind, just before lock-down, St Ann’s entered into extended negotiations with the LA in an attempt to resolve long-term funding issues. The logic of significant short-term funding for suitable premises, appropriate resources, skilled staff, administrative support etc. in order to gain considerably greater long-term savings is recognised by both sides. Unfortunately, due to the crisis management that all LAs are currently mired within, it is a dilemma which is proving impossible to resolve.
The now extended experiment represented by Equals Multi-tiered Curriculum Approach, desperately needs long-term funding to continue. The clear, unambiguous and now researched, radical transformation of the life prospects for these very complex learners also needs to be extended in terms of the number of schools using the model, but this cannot happen successfully without considerable staff training and short-term support. This then becomes a multi-institution issue with Education, Health and Care needing to work together.
Peter Imray, 21st September 2023
Crombie R, Sullivan L, Walker K and Warnock R (2014) Unconscious and unnoticed professional practice within an outstanding school for children and young people with complex learning difficulties and disabilities. Support for Learning. 29 (1) 7-23.
Equals (2020) The Equals Informal Curriculum for children, young people and adults with Complex Learning Disabilities (CLD). Newcastle. Equals. Available at www.equals.co.uk
Imray, P., Kossyvaki, L. and Sissons, M. (eds) (in print) A Different View of Curriculum and Assessment: for children, young people and adults with severe, complex and profound and multiple learning disabilities. London. Routledge.
Thomas G, Dobson G and Loxley A (2023) The increasing use of private special schools: A policy gap for inclusive education. British Educational Research Journal. 00, 1-15.