Parents raising children with special needs in England endure endless paperwork, but help is out there, and it is worth fighting for.
Blaine was diagnosed with dyspraxia at the age of six. Then, he was in his final year in primary school in the West Midlands when his teacher suggested that he might be going through a lot. According to Joanne Terry, the mother of Blaine, anything that disrupted his routine was an absolute nightmare. He was behind; his colleagues were two or three years ahead. His teachers would see that he was losing concentration, and his parents decided to get an autism assessment.
This was the beginning of a Kafkaesque saga that will be familiar to hundreds of thousands of English families dealing with neurodiversity and the world of Special Educational Needs and Disabilities.
There was a two-year waiting list for the initial evaluation process, which determined whether Blaine should be evaluated. If he is to be put through the next stage, there might be another long wait for the autism diagnosis. Blaine’s mother, Joanne, added that she knew he needed help, but she did not have the help he wanted. It was about time he moved to secondary.
Blaine was offered an independent diagnosis by Caudwell Children, a Midlands-based charity group that sped things. But extra support was needed at school: one-to-one help with some lessons, physiotherapy, specially tailored chairs, and writing aids. It required them to apply to the local council for an Education, Health, and Care Plan (EHCP), which outlines what would be delivered as a legal entitlement. Joanne applied to start the process, but her application was denied, even though some experts from the council appear to support Joanne’s position strongly.
Blaine started his new school without any dedicated help. He was pulling out his eyebrows one by one and picking out the skin on his fingers; he was kind of self-harming. Joanne was also trying to push her way through the endless layers of bureaucracy and paperwork. It is horrible, she added. Blaine’s school was very supportive, but there was no professional legal help. Joanne added that she has to give up her job and devote herself to assisting her child full-time.
Eventually, the national Send tribunal went in their favor. Blaine is now doing absolutely well with the right support in place. On the other hand, Joanne heads Blaine’s school’s parents’ group and advises parents going through similar situations. According to Joanne, most parents accept the no and don’t realize that they can fight it. Parents are not given any information from the local council apart from jargon in the letter, and their children end up suffering.
According to official records, more than 40% of EHCP applications are tuned down. The report also says 98% of applications sent to the Send tribunal are successful. Those to whom the system declines requests have cases that cannot be resolved.
Recent reports show that there has been about 72% in the number of young people and children having EHCPs during the past five years. The Children and Family Act of 2014 has extended to include the classification of special educational needs of preschoolers and young people up to 25. However, there are other factors at work: there is a shortage of teaching assistants, making hoc support often impossible to get, and children’s problems sometimes worsen to a point where EHCP becomes the only option.
At the same time, it appeared that neurodivergent children are being excluded from mainstream environments entirely due to the English educational system’s adoption of educational paradigms that place emphasis on attainment, conformity, and old-fashioned discipline. The number of children with Send in English mainstream schools is more than a quarter between 2012 and 2019, and this has been going on for a long time. At the same time, about a third of them are attending special schools. The records indicated that about 40% of Send pupils in secondary school are regularly absent.
Meanwhile, the need for extra help, which is rebranded as “demand,” only increases. The fact that we are much more aware of autism means that more people are asking for diagnoses and school support. The growth is also driven by improved understanding of physical and learning difficulties.
It appears that thousands of families will continue the struggle, fighting and waiting for a change in the near future.
