Nine-hundred twenty-seven. That's the number of days Chris and Christine Long waited to get their non-verbal autistic son Finn the intensive speech therapy he needs.
From their first referral, the Surrey family waited two-and-a-half years for their son's first speech therapy session. Finn, 4, is now behind in his development, like many autistic children who go through this lengthy and tedious system.
"I got so mad," recalled Christine. "We feel like we really tried everything. When I thought of the reality of 927 (days) of us living like that, that was almost worse than finding out he had autism."
Now Christine is asking the provincial government - which has a no-wait-list policy when it comes to providing funding for autism treatment - to speed up the rest of the process.
Shortly after Finn turned one in early 2010, the Longs' family doctor noted concerns about their son hitting some developmental milestones and referred him to speech therapy.
"As he got older, it became more and more clear that he wasn't doing all these things he should be doing," said Christine, noting that Finn was missing communication skills like speech, eye contact and pointing.
Between the summers of 2010 and 2011, the Longs met with a speech pathologist, a pediatrician and several neurologists - all of whom echoed concerns of a severe delay in expressive and receptive language - before Finn was referred to Sunny Hill Health Centre for Children in Vancouver, the leading autism diagnosis centre in the Lower Mainland.
After growing tired of waiting to hear from Sunny Hill, Chris and Christine had Finn privately tested for autism, which had a three-month wait list. After three private sessions in the fall of 2011, doctors confirmed delays in language and diagnosed Finn with autism spectrum disorder (ASD).
"We never thought he'd have autism," said Christine, believing Finn's development was behind due to some other reason.
The Longs received $22,000 from the provincial government - the annual funding supplied for families of children diagnosed with autism - and hired a behavioural consultant to design a program to treat Finn's autism based on Applied Behaviour Analysis (ABA), a common behaviour modification treatment.
Finn currently receives 20 hours of ABA per week, the minimum recommended for many children with autism. Chris and Christine would like to up it to 30 hours per week, but they currently can't afford that much, even with additional funds from out of pocket.
"My behavioural consultant's $120 an hour plus travel, my program manager's $50 an hour and my three BIs are between $16 and $18 an hour," said Christine, noting that to pay for 30 hours of therapy per week with just the $22,000 from the government, Finn's therapist would have to make only $14 per hour.
"The scary thing is, the number-one place people find behavioural interventionists - the frontline people (who) work with your kid everyday - is Craigslist," said Christine, who has heard of scammers taking advantage of families with autistic children.
"I'd barely buy a couch on Craigslist."
And while the ABA helps, it still isn't the intensive speech therapy the Longs need. It wasn't until last December that Finn had his first speech therapy session at the Centre for Child Development, and soon after, Chris and Christine realized the public medical system may not be able to provide the intensive speech therapy Finn needs.
"We figured we just were missing something because there had to be some system where he would get it," said Christine.
Furthermore, once an autistic child reaches the age of six and enters the school system, government funding drops to just $6,000 per year because the school system provides more than $18,000 per year to go toward special education for that child. However, even with that $18,000, Christine is concerned Finn won't get the attention he needs at school.
Earlier this month, the Longs met with Surrey-Panorama MLA Stephanie Cadieux, who is also the Minister of Children and Family Development, and shared their experience with the system.
"We know how important it is for kids under the age of six to get early intervention treatment," said Cadieux. "There's a challenge for them to find those appropriate services for their child and make sure they can access it in a timely way."
Cadieux said the province is always looking at ways to improve the system, and that it's come a long way from the state it was in even 12 years ago. The province's autism budget for 2012-13 is $44.5 million, more than 10 times what it was in 2001. In that time, the number of children served per year has jumped from 600 to 8,400.
But many children are still waiting for the help they need, and the one-size-fits-all $22,000 in funding isn't enough for many children at the extremes of the autism spectrum.
"Even though $22,000 sounds like a lot of money, it's really not when you start moving in with this whole process of having consultants and junior consultants," said Kimberly Isbister, a friend of Christine's who has an autistic daughter, Emily, the same age as Finn.
Melissa Piva, a mother whose non-verbal autistic son Ryley is four and a half, also brought up safety concerns, referencing a time when Ryley got lost on a ferry and was unable to speak with attendants.
"It was literally to put a water bottle in the stroller and that was it and he was gone," she said. "We did find him in about five minutes, but it felt like it was forever.
"There's a lot of safety issues that are becoming very overwhelming."
Looking at creative ways to address Finn's needs, Christine said she's willing to go back to school to become a speech pathologist. At this point, she feels they've exhausted every option.
"It's a really hard situation because I don't blame the Centre, they have limited resources. I don't blame my social worker, she's done everything she can do for me," said Christine. "Everyone has done the best they can in a really broken system."
She added, "It's not a Surrey problem, it's not a B.C. problem, it's a Canada-wide problem."
© Copyright 2013