Strong Voices

Northland families with disabled children are withdrawing from contact with other people because of the sheer stress of trying to manage the children with little support.

IHC Family Liaison in Whangārei Jim Callaghan says families are barely coping because of the shortage, particularly of respite care that would give parents and carers a break.

The problem can be made worse by a child being excluded from school or from the few respite facilities available in Whangārei, leaving nothing on offer.

If a child lives in Kaitāia rather than Whangārei there is no respite at all unless their parents want to do a four-hour round trip to deliver and collect the child.

Jim says families might be offered respite hours, but there is nothing to spend them on. “We can’t get support workers up here. They’re like hens’ teeth. I have worked with families who haven’t had respite for two years,” he says.

“These families become quite isolated because there’s no respite available.”

Jim says the situation is even worse for children with disability-related behaviour, or as children get older and stronger and the grandparents who used to help no longer can.

“I have families with 28 respite days and they can’t use them. Mum and Dad don’t get to go out together. They don’t get to spend time with their other kids – it affects the whole family.”

Jim says families stay home because it’s easier and they don’t have to face people’s disapproval or misperceptions about disability-related behaviour, especially if a child has ASD or a disability that isn’t immediately apparent.

“If they have a meltdown in the middle of the mall, it goes to bad parenting because the disability is invisible.”

IHC advocates attended a hui in Whangārei in May to talk about the difficulty of accessing education for children who need extra support. While education was the hot topic, it was only one of the major challenges that the families spoke of.

“Families just get on with it,” Jim says. “What do you do? You just get up and put one foot in front of the other.” Jim says there needs to be more respite facilities, particularly for those under six and young people over the age of 17, and more support staff.

Photo credit: Benjamin Manley – Unsplash