'Saddening' gap in autism services in remote, Indigenous communities, advocate says
Jeanelle Mandes's daughter was diagnosed with autism spectrum disorder in 2012
The mother of a 10-year-old girl with autism says families who live in remote communities face challenges when it comes to accessing support and programming for autism.
"It's saddening to see that there is a gap," said Regina's Jeanelle Mandes, speaking in advance of an awareness event at the city's mâmawêyatitân centre on Tuesday — World Autism Awareness Day.
"It's kind of heartbreaking, as well, because I see how a child can be delayed."
She feels fortunate that her daughter, Sharlize, can access supports in Regina.
Mandes knew little about autism when her daughter was diagnosed at the age of three, so she began researching and learning.
She started a blog about her experience to educate others and help people, and herself, navigate raising a child with autism.
Indigenous and rural families began contacting her, she said, "saying, 'I'm from the north' or 'I'm from this remote community — how did you get your services?'"
She said it's hard to point them to services because specialists often aren't available where they live.
Mandes, who is originally from Beardy's and Okemasis' First Nation in northern Saskatchewan, featured these challenges in a documentary called Falling Between the Cracks, which she made as part of her master's degree in journalism in 2017.
She explored differences between services in urban and rural areas, contrasting Sharlize's experience in Regina with the experience of two Indigenous families — one living on George Gordon First Nation and one in Duck Lake.
The documentary explored the challenges of commuting long distances to receive supports, and of living in a town without respite care, an interventionist, an occupational therapist or an educational assistant.
She said the situation hasn't improved.
"Those kind of resources and supports should be accessible in their own community."
Provincial increase not enough: advocate
The 2019-20 Saskatchewan budget promised a $700,000 increase to the Autism Individualized Funding benefit.
Under that program, parents of children with autism are eligible for $6,000 per year for kids under the age of six. The increase stems from a 2016 Sask. Party campaign promise that was delayed in the 2017 budget.
Mandes and other advocates have criticized the program, saying it doesn't help kids over six and doesn't go far enough for those who are.
"My daughter has a huge, long list of support that she needs. That money wouldn't even cover a month's worth of those kind of appointments," she said, pointing to occupational therapy and speech language therapy as examples.
Challenges with education system
Mandes's daughter doesn't use words to communicate.
"She can't speak for herself, so I feel it's my duty and obligation to be her voice."
Lately, Mandes says she's faced challenges with the Ministry of Education, including being asked Monday to transfer her daughter to a different school "because of the challenges that my daughter displays in the classroom."
The Regina Public School Division said in an emailed statement it cannot comment on individual students, but the division has "a team of professionals, including teachers, counsellors, psychologists and elders that work directly with students and their families to develop programs and learning plans that specifically meet each student's needs."
"From time to time, as these needs may evolve or be further identified, the student needs may be better met at a different Regina Public school," the division spokesperson's email said.
Programs are also sometimes moved "to a more appropriate location that has better facilities to meet the needs of the students," the division said.
Conversations underway: education minister
Minister of Education Gord Wyant acknowledged there is more to be done.
"My granddaughter is autistic. She's seven years old. It'd be great if she had some support," he said.
"And there are people in this province who, perhaps, can't provide supports for their kids on their own, who need the support of government."
Wyant said there's continuing discussion about the individualized funding age cap and the gap in services outside Saskatchewan's larger cities, where he acknowledged the majority of specialists are located.
He also said there's an "ongoing conversation with school divisions — who set their own priorities" about support in remote communities.
Wyant said "good conversations" are also underway with Regina's Autism Resource Centre and Autism Services of Saskatoon about creative ways to expand supports.