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Action is needed to improve support services for people with neurodevelopmental diagnoses such as autism, ADHD and Tourette’s, according to Caerphilly Senedd Member Hefin David.
Dr David, whose daughter Caitlin is autistic, called a debate in the Senedd on the issue and spoke of his own family’s experience in the long wait to get a formal diagnosis.
Speaking on Wednesday, May 11, he said: “I’m kind of living this pathway that parents in my constituency are living, too, and far from it being selfish for me to raise this debate, what I’m trying to do is raise it on behalf of those parents that I’ve worked with as a result of my work as a constituency Senedd Member, and I think having the insights myself has been very important in giving me that ability to represent them effectively, because I am on the same journey.
“Caitlin had to wait a year for a statement, which she should not have. She was a year in mainstream when she should have been in a resource base, so I’ve had this experience, this frustration that people have at the delays that happen because of the multidisciplinary nature of autism and the requirements of so many people in so many parts of the public sector to agree on what is needed.”
Dr David said he had been contacted by an increasing number of people from across Wales sharing their experiences and the barriers they have faced.
The response from residents was also supported by advice from the Royal College of Psychiatrists, who said that access to services should be based on need, not on whether someone has received a diagnosis.
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Dr David discussed during the debate how schools do not have the training or capacity to support children and are wrongly excluding children from schools. He said he will be pushing Caerphilly County Borough Council for a second special educational needs school in addition to Trinity Fields in Ystrad Mynach.
He said: “We need to manage the needs of children, not the behaviour. I have met with so many families whose children are struggling in education settings and this needs to change. The battle for support is even more difficult for those struggling with conditions such as ADHD and Tourette’s, due to the lack of clear pathways and a shortage of children and young person trained psychiatrists.
“Welsh Government need to ensure that support is offered to families early on, before diagnosis if necessary, and that this is also extended to other neurodevelopment conditions.”
He also raised concerns about the degree of bullying faced by children with neurological conditions.
Deputy Minister for Social Services, Julie Morgan, responded that Welsh Government have a dedicated policy team who work across Health and Social Care and closely with Education departments: “Welsh Government’s National Autism Team is expanding its remit to provide advice across neurodevelopmental conditions.
“We want to make sure that the progress made with autism is expanded to other conditions and that they all work together.”
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