Report says children with special educational needs are being badly let down
Healthwatch have been collecting stories of neurodivergent families in York
Families in York have been telling us about the "exhausting battle" to get the right support for children with additional needs.
They've shared their stories in a new report looking at the experiences of neurodivergent families across the City.
‘Listening to Neurodivergent Families in York’ brings together the experiences of the families of neurodivergent children and young people trying to access services and support.
The report calls for research into neurodivergent-friendly school behaviour charters, better administration and communication, training to improve understanding and awareness of neurodivergence and specifically Pathological Demand Avoidance, a clear sleep support pathway for York and clear guidance around shared care agreements.
It was produced in partnership with the Land, York Disability Rights Forum (YDRF), York Carers Centre and Parent Carer Forum York and is published as City of York Council starts work on a neurodiversity strategy
Siân Balsom, the Manager of Healthwatch York said, “This is a challenging report to read due to the extremely difficult experiences people have faced. We thank everyone who shared their stories with us. Current services and support are not working for too many people in York and we are delighted to see that City of York Council is developing a strategy. This is desperately needed, and we hope that our report and the experiences of everyone we heard from will help to shape something that will transform the lives of the city’s neurodivergent children, young people and their families.”
Hilary Conroy of YDRF added “This report shows the reality of the ND parent experience in York in all its painful truth.”
Sarah Coltman-Lovell, York NHS Place Director, York Health and Care Partnership in responding to the report expressed a desire to work with Healthwatch York, voluntary sector organisations and children, young people and families to develop the Health and Care Partnership’s response further. She added: “Moving forward the Integrated Care Board is committed to building sustainable and equitable services, balancing diagnostic capacity with appropriate support and ensuring that the right interventions are in place across the system.
“This demands careful planning, collaboration and a long-term strategy. We are working with both regional and national teams to address the demand for autism and ADHD services, while our Mental Health, Autism and Learning Disability Collaborative drives pathway improvements.”