Parents say despite being approved for hours, respite support is hard to access in the North

Parents raising autistic children in the Northwest Territories say accessing respite support can be difficult, even after they have been approved for help.

Respite is non-medical daytime support provided in the home or community for parents and caregivers of people with disabilities. The territory funds Inclusion NWT in Yellowknife, and the NWT Disability Council in other communities to provide that support.

But parents say a shortage of respite workers leaves families without reliable support or with the burden of finding it themselves.

Yellowknife father Alex Davidson’s seven-year-old son Nash is autistic. Davidson said Nash is non-verbal, uses a communication device, and requires constant supervision because he can bolt unexpectedly.

“He is an eloper, so he does like to get on the loose on his own,” he said. “He does still need constant supervision to make sure he doesn't get himself into trouble or get himself hurt.”

Davidson said his family was initially approved by the territorial government through Inclusion NWT for about 59 hours of respite per quarter and had a positive experience, but that changed when their respite worker went back to school.

“Having these hours that were approved for us, and not being able to use them because there was nobody [available],” he said. “Time goes on, and we're without respite for at least a year and a half.”

Davidson said his family eventually began sourcing workers themselves, often people who already knew his son, and connecting them through the organization’s hiring process. He said not all families have the time, confidence, or capacity to do that.

“If I weren't as resourceful as I am, then we probably wouldn't have [respite],” he said. “And how many people are going to have this type of situation? So that was my bigger concern.”

Davidson said when respite is available, the difference for his family is immediate. He said even an hour can help his son maintain his routine and give parents time to rest or run errands, and losing that support takes a toll. He said the respite worker they have now, a daughter of a friend, will be leaving this month to return to school.

“Having not known that it was available to having it, to losing it, to getting it back again, to knowing that you're gonna lose it again is a wide range of emotions," he said.

Davidson said many parents are already mentally and physically exhausted by the time they adjust to their child’s needs. That respite time can make the difference between coping and burning out.

Katie Johnson is a Yellowknife mother of an eight-year-old autistic boy.

Johnson said her family first looked into respite care a couple of years ago while seeking one-on-one support so their son could participate in a forest school program. She said they contacted Inclusion NWT to ask whether respite could be used for that purpose.