Filed under: Education and the new government | Tags: Asperger's Syndrome, Autism diagnosis, case co-ordinator, children, Coalition, diagnosis, disability, early intervention, education, families, Guerrilla Mum, learning curve, National Institute for Clinical Excellence, NHS, NICE, schools, services, single point of contact, social care organisations, Special Educational Needs, statement of special educational needs, The Guardian, voluntary sector organisations
The NHS has been told by the National Institute for Clinical Excellence (NICE) that autism diagnosis in children must improve. You can see the Guardian’s article on the matter here: http://www.guardian.co.uk/society/2011/jan/27/autism-diagnosis-children-nhs-guidance
According to The Guardian, the NICE guidance ‘calls for every child with an autism spectrum disorder to be assigned a case co-ordinator to act as a single point of contact, and to have an individual profile created that sets out their needs.’
Surely they are missing a point? The new guidelines only call for children already diagnosed with an autism spectrum disorder (ASD) to have a case co-ordinator. Don’t get me wrong! I welcome the introduction of case co-ordinators to work with children with ASDs but what about all the other children with equally difficult special needs? I do not think access to a case co-ordinator should be dependent on the child being formally diagnosed, or on any specific diagnosis.
Furthermore the article says that NICE has decreed ‘NHS staff need to liaise more and to engage better with schools, social care providers and voluntary sector organisations.’ They do, but surely they also need to liaise more with parents and families who know their children the best?
A case co-ordinator could be of so much help to families right from the time that concerns are first raised about a child’s condition when they first engage with NHS services. This would result in a diagnosis being made more quickly and in needs being met more effectively. Most parents of children with special needs have to go through a huge learning curve before they can be effective advocates for their children and this process can take years. A case co-ordinator who has experience of how the system works could be such a help to parents and children if they are brought in at a much earlier stage as soon as concerns are raised about a child’s development or condition. This is the time when families most need this help and when they are the most vulnerable. A case co-ordinator could pave the way for a child to access early intervention services. Early intervention is the key to children overcoming special needs at school and in life.
So I say to the new NICE guidelines on autism diagnosis, ‘Yes Please!’, but please don’t discriminate against those children with special needs who do not happen to have an autism spectrum condition, and please bring in case co-ordinators much earlier in the process of the identification and meeting of special needs. It is a fact that most children who have their special needs effectively met have motivated parents who learn to navigate the system for identifying and meeting SEN. Case co-ordinators for all children with special needs who access NHS or special education services would have the effect of levelling the playing field and – (I’m going to use a coalition buzz word here) would also make things much fairer.
If we had been presented with a case co-ordinator when Peter was nine years old, had received his diagnosis and also his statement (that came along straight after the diagnosis), we would have had no use for them. However, the early involvement of a case co-ordinator in Peter’s case would have been invaluable to us and would have saved Peter so much time, distress, sadness and despair and many wasted years at primary school.