Are We Supporting All of Our Children? The Cost of Dyslexia to Families

Posted in: Education, Evidence and policymaking, Health, Public services

Dr Helen Ross is a Special Educational Needs teacher in Wiltshire and founder and owner of Helen’s Place. She completed her PhD in Social and Policy Sciences at the University of Bath, focusing on provision for young people with dyslexia and specific learning difficulties.

According to the NHS, one person in 10 has dyslexia to some degree. On that basis, we would expect there to be a similar proportion of young people within the school population experiencing dyslexia. However, according to government data detailing different types of ‘Special Educational Need or Disability’ (SEND) within the classroom, the proportion of young people with dyslexia or other specific learning difficulties (SpLD) was 1.82 percent in January 2018. Such a discrepancy between different sets of government data suggests that there is a disjoint somewhere in the processes related to either assessment of dyslexia, or the estimated proportion of individuals who have dyslexia.

Dyslexia is recognised within the 0-25 SEND Code of Practice as a difficulty which affects cognition and learning. While it does represent a large proportion of identified needs within the school population, 12.6 percent of all young people formally identified as having SEND have SpLD documented as part of their needs. In the first instance, the needs of the majority of these learners are expected to be met within the mainstream classroom through high quality teaching and differentiated learning materials. However, anecdotal evidence from the British Dyslexia Association suggests this is not the case.

Through their helpline - run centrally at national level, and through dyslexia associations at local level - parents continue to report significant difficulties in obtaining appropriate support and provision for their children who have dyslexia. Families detail experiences such as; children unable to access the curriculum at school; a decline in their children’s mental health; and having to meet the cost of specialist interventions as they are not provided in schools. Through his online platform, Parenting Dyslexia, John Hicks found that parents reported similar experiences. These findings led to the creation of a mixed-methods survey, ‘The Human Cost of Dyslexia’, purposed with obtaining a snapshot of families’ experiences of dyslexia, interactions with schools, feelings about their children’s dyslexia, and costs (economic and emotional) associated.

What did parents experience?

According to the survey, significant numbers of parents reported feelings of guilt linked to their children’s dyslexia, either worrying as to what other people thought of their children’s difficulties, or wishing they did not have dyslexia at all. Parents reported painful experiences of feeling that they had failed their children because they were placed within a school system that they felt did not meet their needs. These feelings of guilt also linked to parents’ anxieties about their children’s future as, again, they felt that the current system failed to support young people with dyslexia, given its strong emphasis on examination performance.

While parents felt that their children’s schools did support their dyslexia nominally, a large proportion did not overall feel that the schools were supporting their children’s dyslexia well, or that their children were valued or effectively nurtured. Reports of under-resourcing and lack of engagement led parents to feel disempowered when interacting with their children’s school, causing anxiety and anger. Poor and inconsistent information supplied to parents was also problematic; as some schools were reported as actively avoiding supplying parents with guidance, and others were viewed as poorly trained and unreliable in their guidance.

Where parents felt that their schools were not adequately meeting children’s needs, they reported that they found it necessary to procure appropriate support for their children through spending time and money on specialist tuition. Parents also noted that they spent disproportionate amounts of time working with their children with dyslexia on homework, projects, and general well-being, often to the detriment of their other children. Family dynamics suffered greatly where siblings had different needs and where parents, as well as young people, were cognisant of the greater financial and emotional costs linked to a family member’s dyslexia. Sibling relationships were reported as strained, and some parent-child relationships were not as balanced as hoped for by family members.

All of these difficulties experienced by families have led us to conclude that there are serious costs for families whose children have dyslexia. The emotional load on parents and young people is significant, with mental health difficulties reported by many families, as well as financial strain caused by costs of extra tuition.

What happens if we don't do anything about it?

Where the needs of young people with dyslexia are not met, research has found that this has negative consequences for them and their families. For example the difficulties experienced relating to literacy can be internalised by young people, and is often linked to a negative impact on their mental health.

Currently 5.8 percent of 5-15 year olds have identified mental problems versus 3.9 percent in 2004. In a climate where young people increasingly experience poor mental health, the negative effect of poor literacy cannot be ignored. Also linked to poor literacy are externalised behaviours which can be problematic within the school context. These behaviours are often in tension with school behavioural policies and can lead to punitive reactions from schools, which may then be associated with poor academic and social outcomes for young people, impacting on their post-school pathways.

Where learners’ literacy is such that they cannot access the curriculum in schools effectively, there is a risk that young people may disengage from education. The skills needed to access the curriculum are vital and necessary to achieve exam success. Where exam success is limited there is the risk that young people are unable to meaningfully engage in professional life after school. Research has found that the proportion of individuals in offender cohorts is much higher than that of the population overall, suggesting that there is an association between poor literacy, disengagement from civil society and offending behaviour. As such, the cost to society as a whole for not meeting the needs of young people with dyslexia, literacy difficulties, and SpLD, may be significant and thus must be addressed.

What can we do about it?

The survey, the Human Cost of Dyslexia, has been undertaken with the direct aim of bringing the findings to the attention of policymakers. Through working as part of an All Party Parliamentary Group, the project team and British Dyslexia Association are hoping to suggest measures to better support young people with dyslexia in schools, as a means to improve their prospects, and potentially avoid greater cost incurrences in future.

A key way to support young people with dyslexia and other literacy difficulties is to ensure that there is a specialist teacher in each school. Given the levels of funding that are currently given over to tribunal cases, and the fact that estimates suggest as much as £100 million will be spent in such cases in 2019, the cost of training dyslexia specialists to work in schools (currently ca. £3500) would be a prudent investment, potentially reducing tribunal costs. Improvements within Initial Teacher Training (ITT), so that student teachers have better understanding of dyslexia, would mean help to ensure that needs are better met in the classroom. In order to embed good practice in schools, schools and other organisations can work towards quality marks such as the BDA Dyslexia Quality Mark or CReSTeD.

Where dyslexia-friendly practice is embedded within schools, this should also form part of a wider support structure for learners, where their academic, pastoral and other additional needs are well-catered for. Secure pastoral frameworks that allow for appropriately resourced mental health support workers as well as academic specialists will ensure that learners are holistically cared for, helping them to reach their academic potential. Where academic and pastoral needs are well-catered for, we believe that young people will better engage with learning and achieve good social and academic outcomes, leaving productive post-school academic pathways open to them.

Solid pastoral and academic support structures must be underpinned by robust national frameworks and guidelines so that parents and professionals can access reliable, consistent information to support young people. We feel that the current fragmentation of the SEND system undermines this consistency and believe that updated guidelines would reduce confusion for stakeholders and pave a clearer pathway forward, towards helping meet the needs of young people with literacy difficulties.

The data for this survey was gathered by the British Dyslexia Association in collaboration with Parenting and Neurodiversity Coach John Hicks of Spectacles Coaching. This article provides an overview of a research project worked on by Dr Ross, undertaken by the British Dyslexia Association in collaboration with John Hicks, the findings of which, and subsequent recommendations, will be presented to the All Party Parliamentary Group on Dyslexia and Other Specific Learning Difficulties on 24 April 2019. A full report of the findings of the group will follow the meeting. Dr Helen Ross acted in an advisory capacity, providing guidance on the legislative and educational frameworks surrounding dyslexia within current policy and facilitating processing of qualitative survey data.

Posted in: Education, Evidence and policymaking, Health, Public services


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