The island’s Children’s Champion has highlighted the challenges faced by families with children with complex health needs and disabilities.
Kerry Sharpe’s annual report documents the challenges faced not only by the young people, but their families in getting the support they need.
Emphasising the particular difficulties for non-verbal children, Mrs Sharpe said: “They can’t tell us what’s happening in their world and for that reason alone, this makes them some of the most vulnerable people in our society.”
She added: “Parents battle on a daily basis to give their child the best life they can. This is not easy as the outside world, and often their own homes, are not designed for people with disabilities in general, let alone children with complex needs.”
Rewarding but Draining
Mrs Sharpe said parents she had spoken to said it was “rewarding but at the same time emotionally and financially draining and stressful” for families, who often feel isolated.
She said: “Entire families are marooned at home for the six weeks [of school holidays] due to lack of public changing place toilets, lack of transport and lack of accessible leisure activities.”
This extends to issues with families being unable to access places, such as a beach or plantation, that many others would take for granted.
Mrs Sharpe said the lack of accessible pathways, transport and public changing places all contribute to this issues.
Calling for urgent action to support these families, Mrs Shapre stated in her report that “there is a lack of a clear, coherent vision and strategy across the island as to how services for vulnerable children are to be prioritised and delivered”.
She also looked at ways that families and their children could benefit from Special Educational Needs hubs in schools being opened during school holidays to provide some daytime respite.
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