Peter’s story: reconceptualising the UK SEN system

‘The dots just don’t join up’: Understanding the support needs of families of children on the autism spectrum

“…Interviewed parents also reported that their encounters with formal support services were overly bureaucratic, that they needed constantly to ‘fight’ to obtain the services to which they were entitled, and ultimately felt isolated from, and misunderstood by, services they perceived should be supporting them. This discourse of struggle with bureaucracy and the sense of an adversarial relationship with formal support services for parents of autistic children are not new (Fleischmann, 2005; McNerney et al, 2015; Makin et al, 2016; Marshall and Long, 2009; Paradice and Adewusi, 2002; Preece, 2014; Tissot, 2011; Truss, 2008; Woodgate et al, 2008). Nevertheless, the Children and Families Act promised to cut the bureaucratic ‘red tape’ that too-often besets families’ interactions with government departments and engage with key stakeholders (including parents) to collaborate in the planning and subsequent commissioning of joint services to provide a ‘local offer’ of services available in each local education authority (UK Department for Education, 2014).…”

‘You have to find the right words to be honest’: nurturing relationships between teachers and parents of children with Special Educational Needs

“…While a number of articles highlight the lack of parent voice where educational partnerships with the parents of children with Special Educational Needs (SEN) are concerned and endeavour to redress this imbalance (Hess et al ., 2006; Hartas, 2008; Truss, 2008; Sedibe and Fourie, 2018), it is far more difficult to find research which specifically considers the specialist SEN practitioner’s perspective. The field of SEN literature appears to be largely dominated by academics vying for the rights of the parent.…”

“…Speaking from her own experience, Orphan (2004) adds that this can make social interactions, in particular, difficult; because what you actually want to do is to hide away at the same time as having to deal with a wide raft of professionals. Truss (2008) recorded dealing with 57 different professionals and 10 charitable organisations during the period of her own son’s diagnosis. It is because of these challenges that Hartas (2008, p. 149) highlights the need for professionals to be active in ‘valuing the strengths that families bring and removing blame’ for productive partnerships to be developed.…”

“…(2006, p. 148) recognise and expand on this, explaining that it is grieving the loss of the child who had every chance of success within school, employment and the wider community. Truss (2008, p. 375) highlights the lack of support that exists for parents while their ‘emotional burden verges on the intolerable’.…”

“…The outcome of the shame and sadness mentioned above can often be stress and anger. A ‘discourse of fighting’ (Truss, 2008, p. 372) can arise from feeling helpless. Truss (ibid) goes on to explain how inherent in the SEN assessment system is a need for ‘children to fail over an extended period of time before any help can be secured’ and how painful an experience this can be.…”