The British Academy of Childhood Disability has said emergency care is a vital part of their everyday lives.
The United Kingdom government says it is taking action to address ambulance delays.
Dr Toni Wolff, who chairs the British Academy of Childhood Disability, told the British Broadcasting Corporation that some families with severely disabled children had “what are essentially high-dependency units” of medical equipment at home.
She said, “As part of their healthcare plan, we would normally say, ‘If the child starts to deteriorate, call for an ambulance and it will be there within 10 or 20 minutes.
Despite their child being classed as a priority, parents have told BBC News they face the difficult decision to wait for an ambulance or take them, often in a life-threatening condition, to hospital themselves – a risk because of the huge amounts of equipment needed to keep them alive,
Patients with emergencies such as heart attacks and strokes waited 90 minutes on average for an ambulance in December.
In January, this dropped to 32 minutes – but the target is 18.
