In rural areas of B.C. families face challenges accessing services for their autistic children, something a few families in Hope are now working to change by connecting with each other and with resources for their children.
Megan Beck has experienced these challenges first hand. As a mother of a five-year-old son with autism, who she prefers not to name in this story, she spends a lot of her time advocating for and working on getting him the resources he needs.
Beck said she began seeing signs of autism early on — trouble transitioning from one space to another, waking up five times per night — and she pushed to have her son assessed to see if he was autistic.
As of July 2017 there are 13,773 children diagnosed under age 18 in B.C. “Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by impaired social interaction, difficulty with verbal and non-verbal communication and restricted or repetitive behaviours,” according to Autism BC.
Each child diagnosed with autism under the age of six can access $20,000 per year from the province for autism intervention services and therapies, at age six families receive $6,000 per year as they also access resources in school.
Autism is a very diverse diagnosis and the resources provided vary for each child and their situation. They include working with behavioural consultants, occupational therapists and speech and language pathologists. The money can cover supports for a child with autism, however, how far the money goes depends on how affected by autism a child is.
“If you have a child that’s profoundly affected by autism and you’re running an evidence-based, applied behaviour analysis program, you might be paying upwards of $30 to $40,000,” said Andrew Pinfold, director of operations at Autism BC.
Parents either pay the rest out of pocket or ration the therapy.
CHALLENGES IN RURAL AREAS
A 2017 article in the Frontiers in Psychology journal stated rural communities face both a lack of available “diagnostic-, treatment- and support services,” and a low utilization of these services.
“A variety of factors, including geographic distance between families and service providers, low reliance on health care professionals, and cultural characteristics, contribute to the diminished availability and utilization of services,” the study, Rural Trends in Diagnosis and Services for Autism Spectrum Disorder stated. “Together, these factors lead to risks for delayed ASD screening and diagnosis, yielding lower educational and functional outcomes.”
“The same gaps for different types of health care needs that exist in rural and remote communities, exist for autism,” said Pinfold. “While there is funding for folks in rural and remote communities to access those resources, they actually, because they can’t access them easily they can’t spend those funding dollars.”
Beck said she has heard from a special needs social worker for the Hope area, that seventeen families didn’t use any of the $20,000 of their funding two years ago.
There are ways therapists and consultants can work remotely with families, or in the case of Hope they can travel here from the Fraser Valley to see clients. The care providers that do travel to Hope charge their clients for transportation, which ends up eating up funding dollars.
“I pay her just about as much to come here, as I do for her to work. So it eats up a lot of funding” Beck said. The charge per hour for the consultant is $26 per hour and the travel charge is $26 plus 40 cents per kilometre. Beck added it is worth it to pay a good quality therapist to come to Hope, even if this cuts down on the money she has left for her son.
Pinfold said B.C. has one of the best funding models for kids with autism in the country, but there is always room for improvement. Autism BC has asked for the Ministry of Children and Family Development, which manages the system of care for autistic children, to revisit the money given to families as amounts have not changed since 2010.
Pinfold said the ministry is also aware of the problem of money getting diluted by being used for transportation of professionals to clients rather than on the therapies themselves.
“(The ministry is) trying to put some measures in place to address it, in particular targeting those rural and remote communities,” he said.
The ministry stated they could not accommodate a request for an interview, but did provide a list of supports available to rural families, including a phone-based information service (Autism Information Services British Columbia), the Provincial Outreach Program for Children with Autism and monetary support for training behavioural interventionists in rural and remote communities through Douglas College.
COLLABORATION STARTING AMONGST HOPE FAMILIES
Sheryl Kuo moved to Hope a year ago from Richmond, her five-year-old son is also autistic.
After seeing a post on Facebook from a local family looking for a behavioural interventionist, Kuo decided to start the Hope BC autism support group. She envisioned starting with a Facebook group to gather families with autism together to find out what their needs are. The group now has 25 members.
After dealing with a family member’s diagnosis of cancer, she was temporarily unable to continue this work and passed the torch to Beck.
The idea, Beck said, would be to get a bunch of parents together, a parent support group, to discuss the challenges their children face. This could be autism-related, or it could be other special needs or challenges like severe food allergies.
“The autism society and the CDC offered to send speakers,” she said. “The support is there, we just need to ask for it.”
As children with autism often struggle with social interaction and making friends, Kuo said she would like to see families with autistic children getting together in person.
“If we could find some play dates or other families who would like to increase their children’s social skills, that would be a good improvement for my son,” she said.
“We would just really like to start a community of support here, because it just feels like everybody is kind of on their own,” Beck said, adding when she reached out to other families what she heard back was frustration, and that many had given up.
“My end game for having the support group is to see, if there’s enough interest, that we could even open a centre that’s specialized.”
Kuo agrees a space where her child and others can come to receive interventions is needed in Hope.
Deanna Becker, a registered clinical counsellor who has been working in child and youth mental health, knows of six families she will be working with at her home-based Rivershore Counselling Services. She said a centralized location could cater to children with different disabilities.
“That would definitely be a bonus, to be able to have a little children’s therapy centre where it’s not just for children with autism but also for some of those kids that aren’t being serviced by the places in town,” she said.
Both Kuo and Beck say they have not had much of a response from families. There is a whole host of reasons why, Pinfold said, families are not accessing resources or collaborating.
“There’s that stigma, maybe people don’t want to disclose. The second is, it’s a spectrum disorder and certain clinicians are experts in certain behaviours and issues with autism and not every family in Hope, their children face the same challenges,” he said. There is also a very long list of different approaches and philosophies behavioural consultants adhere to.
So pooling your resources and bringing them in for the day might not work because of that. It can work, but parents have to be on the same page, and just because the parents are not on the same page it doesn’t mean someone is wrong.”
The need for resources will only grow as the amount of children being diagnosed somewhere along the spectrum of autism grows. Pinfold said this growth is partly a result of increased awareness of early signs and partly as the umbrella of what autism covers has expanded. For example, Asperger’s is now part of the spectrum.
Despite all the challenges accessing services in a small town, the upside Beck said, is feeling her son is in safe hands.
“I feel safer here,” she said, adding if her son were to escape on her, which he has the potential to do, he’d likely be recognized by neighbours and taken care of.
This is the third story in a series on children and youth with autism in Hope.
Young Hope man with autism wants understanding, end to taunts
Filmmaker brings life with his autistic son to the small screen