Autism advocates are welcoming recent provincial funding programs, but lobbying continues for a long-term autism strategy.
“I would love to see them make a commitment as a province for a plan (in which) we weren’t just reactively dumping money into different pots but looking at it holistically,” said Bedford resident Carly Sutherland, who put her fight for more supports for her son Callum in the public spotlight last year.
Sutherland and her husband John made an emotional public plea in January for the province to establish an outpatient crisis program for children with complex needs such as Callum.
The nine-year-old had become unmanageable at home, attacking anyone who came near him.
The Sutherlands said Callum had been confined to an isolated unit at the IWK Health Centre for safety reasons because there was no appropriate therapy available. He was too violent to participate in the unit’s school or recreational therapy, and was not verbal enough to access counselling services.
The family spent more than $5,700 on support people and behavioural intervention for Callum just in December 2017. They received $3,400 in respite funding through an income-based provincial program, and family and friends have also fundraised $14,000.
Since going public in January the Sutherlands,along with officials from Autism Nova Scotia, have met twice with Nova Scotia’s Community Services Department officials about the department’s disability support program, Sutherland said in an interview Wednesday.
“I can’t comment too much about that because there’s some stuff that’s happening there, so I can’t really speak to it,” she said. “I met with them twice and I feel there’s been some. It was promising and we will be meeting again.”
Nova Scotia’s Health Department is spending about $15.7 million on autism services in the province this fiscal year.
The figure includes $300,000 for Autism Nova Scotia to expand resource centres, particularly in rural areas. There is also $500,000 for an early intervention pilot program to help parents before their children go into the early intervention program.
And the province recently committed $1.4 million, to be paid over three years, providing employment supports and services, including coaching, for people with autism spectrum disorder. And there is the $16.2 million in disability funding Sutherland referred to, which may be accessible for autism support.
Autism Nova Scotia executive director Cynthia Carroll welcomed the new programs but agrees that more consistent policies are need to address crisis situations.
“What the Sutherland case really highlighted for us, and we certainly were aware this was a gap in the system, is the need for a wraparound support and services for families who might be experiencing crisis or need a higher level of support,” Carroll said in an interview Wednesday.
Autism Nova Scotia took the unusual step of intervening with help for the Sutherlands, providing a certified behavioural analyst to work with the family in their home.
“We felt it was important to ensure that the family didn’t fall within the gap of the system so we were able to use (our) expertise . . . (to) support the creation and implementation of the discharge plan (from the IWK Health Centre) as well as to continue to support the family in the community as they’ve been moving forward,” Carroll said.
Besides the behavioural analyst, the family is also working with a learning centre teacher from Callum’s school and two educational assistants from the school.
“I’ve been essentially running a group home in my house,” said Sutherland, who has training in special education and crisis intervention, and has taken a sixmonth leave of absence from her job. “I’ve been training staff, co-ordinating behaviour plans and that’s in my skill set, but that is something that’s not offered (through provincial programs) and that seems not acceptable.”
The work has been exhausting and the family has little privacy with so many people in the house, but it’s paying dividends. It’s expected Callum will be able to return to school in April.
“He’s doing way better, almost unrecognizable from six months ago,” Sutherland said.