'Saddening' gap in autism services in remote, Indigenous communities, advocate says

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 programmingfor autism.

"It's saddening to see that there is a gap," said Regina'sJeanelleMandes, speaking in advance of an awareness eventat the city's mmawyatitncentre on TuesdayWorld Autism Awareness Day.

"It's kind of heartbreaking, as well,because I see how a child can be delayed."

Shefeels fortunatethat her daughter, Sharlize, can access supports in Regina.

Mandesknew little about autism when her daughter was diagnosed at the age of three, so she began researching and learning.

Shestarted a blog about her experience to educate others andhelp 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 communityhow did you get your services?'"

She said it's hard to point them to servicesbecause specialists often aren't available where they live.

Mandes, who is originally fromBeardy's and Okemasis' First Nation innorthern Saskatchewan,featured these challenges in a documentary called Falling Between the Cracks,whichshe made as part ofher master's degree in journalismin 2017.

She explored differences between services in urban and rural areas, contrastingSharlize's experience in Regina with the experience of two Indigenous familiesone 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."

Provincialincrease not enough: advocate

The 2019-20 Saskatchewan budget promised a $700,000 increase to the Autism Individualized Funding benefit.

Under that program, parentsof 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 promisethat was delayed in the2017 budget.

Mandes andother advocateshave criticized the program, saying it doesn'thelp kids over six and doesn't gofar 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 tooccupational 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 askedMonday to transfer her daughter to a different school "because of the challenges that my daughter displays in the classroom."

Conversationsunderway: 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 supportin remote communities.

Wyant said"good conversations" are also underway with Regina's Autism Resource Centreand Autism Services of Saskatoon about creative ways to expand supports.