Family's heart-rending case prompts call for autism strategy
'Everybody holds their breath that for each case that hits the media that it's not a fatal case'
A heart-rending case involving a Halifax-area boy has triggered new calls for a national strategy to help families with children who can become violently aggressive because of severe autism.
The case of nine-year-old Callum Sutherland illustrates what happens when families can't get crisis assistance, according to Autism Canada and the Canadian Autism Spectrum Disorder Alliance.
Carly Sutherland took the rare step last week of holding a news conference to plead for help with her sometimes violent son, who is due to be fully released from a confined hospital unit on Thursday.
Sutherland told reporters her son, and her family, are frightened of how they will cope.
Cynthia Carroll, the chairwoman of the alliance, said families across Canada are reporting more severe cases of aggressive behaviour, and a lack of help.
"As we continue to work in silos across the provinces and territories, the risk increases and everybody holds their breath that for each case that hits the media that it's not a fatal case," Carroll said.
Carroll said the Sutherland case is one among many showing the need for a national strategy, and she asks why the federal Liberal government hasn't adequately responded to the Senate's call last spring for a federal plan.
The upper chamber also issued a report titled Pay Now or Pay Later: Autism Families in Crisis, calling for more assistance a decade ago.
Long wait-lists, shortage of trained therapists
Carroll said the goal is to hold a first ministers' conference, agree on the key needs and get funding.
Both national groups say some health regions within provinces have behavioural therapies that are available to older children, but there are generally long waiting lists and shortages of trained therapists across the country.
"Parents aren't getting the supports they need, and it escalates and gets into crisis situations like the Sutherlands," said Laurie Mawlam, executive director of Autism Canada.
9-year-old to be released from hospital Thursday
Sutherland said she has been inundated with emails and phone calls from people from across the country who are in the identical situation as she and her husband John Sutherland.
"What this has shown me above all else is we are not alone and this is not an isolated incident. This is something that needs to be addressed at a much broader level."
Sutherland said her son slept at home Sunday night as part of the transition process that will see him fully released from the hospital on Thursday. The family has also taken steps to install shatterproof glass in the home, given Callum's violent tendencies.
Family's respite funding has increased
She said the provincial Community Services Department has since increased her family's respite funding through its income-based program known as Direct Family Support for Children. The $7-million program serves 676 families in Nova Scotia, and an average family could receive up to $3,800 per month for exceptional needs, according to the department.
The program's executive director, Joe Rudderham, said the funding can also be used to cover medication and transportation costs. He said a similar program for adults has some flexibility, and the department is looking at doing the same for the children's program.
Sutherland said while she's appreciative of the extra support, what's really required is a "needs-based" service.
"We are still left with the ball in our court in terms of hiring, training and scheduling staff to be in our home to support Callum," said Sutherland. "I can assure you that's no simple task and there is not a lineup of people out the door who want to do this kind of work."
Families across Canada speaking out about challenges
Cases have been popping up in the media across Canada as parents grow desperate.
Sierra Jardine, a single mother of seven children in St. Catharines, Ont., went public with her struggle to handle her 10-year-old son, Remi Ranger, last week.
Like Callum Sutherland, Remi Ranger has autism, is non-verbal and can be prone to violent fits.
Jardine said she needs more respite care, help with diagnosis of her son's problems and more support when her boy is at home.
Researchers say parents left in lurch
The issues underlying the cases include long waiting lists for behavioural therapies, shortages of trained professionals, a lack of adequate home care and supports and parents who run out of funds to pay their portions of the care costs involved.
There have been several high-profile cases of parents taking unusual measures that drew public attention to their struggles.
For example, in May 2013, Amanda Telford said she could no longer care for her 19-year-old son and dropped him off at a government office.
In an opinion piece published last year, Yona Lunsky, a researcher at the Centre for Addiction and Mental Health, and Jonathan Weiss, an associate professor of psychology at York University, note the growing plight of families.
"By not providing help to parents when needed, we simply pay for it later, and at a much higher cost. Families are our greatest asset. Their needs have been well-documented, and we know of solutions to meet their needs better. It is time to pay attention to parents' well-being," they wrote.
Ontario has launched new program
Ontario's Ministry of Children and Youth Services said in an email Monday that earlier this year it introduced major changes to the way it provides services for children and youth with autism.
It says all children under age 18 who have an autism diagnosis are eligible for the new program, and the province has not imposed parameters on the number of hours a child receives or the duration of their intervention.
"The new program is family-centred and services will be flexible, relevant and responsive to the needs of individual children and youth with autism, regardless of age," said an email, adding that each family will have a support worker to help them navigate the new system.