Families with children who have extremely complex or chronic medical conditions are struggling to find adequate support, according to the latest research by the UBC.
Children with chronic medical conditions have lost access to key services like physiotherapy or speech and language therapy, the August study found.
Physicians describe medically complex children as those who are born or become seriously ill soon after birth. They often require feeding tubes and ventilators, and are likely to be non-verbal. These children need care throughout their lives and require multiple specialists.
Research suggests that 30 per cent of the children’s parents avoided taking them to the emergency room in circumstances where they would normally have done so. From March until May, 60 per cent of the surveyed children stopped attending school. Parents were concerned over what their child might be exposed to.
The B.C. Ministry of Children and Family Development typically provides all medical equipment for children with a chronic illness. The ministry also provides co-payments for therapies, extra care to ensure the child’s parent can have a break, and allows support payments for licenced daycares.
Thirty-eight per cent of children’s parents were not able to access ministry supports to offset the impact of COVID-19 restrictions.
“The most surprising detail was from the B.C. ministry – most parents didn’t know about their support networks, or couldn’t access them even though they were advertised as key supports,” said lead researcher Jennifer Baumbusch.
“This had a huge impact on the parents’ physical and mental health.”