About two weeks ago, I was invited to take part in a parent panel by the clinical director of a proposed new autism center in our area. After two hours of discussions with 8 other parents and representatives from the center, I left feeling completely overwhelmed. The center would be one of the first of its type in Canada and one of only a handful in North America, creating a truly integrative team for autism intervention to include medical doctors, nutritionists, speech and occupational therapists and family supports such as counseling and social groups for siblings. I don’t think I’m overstating it when I say the creation of this center, for my family, would be like winning the lottery.
I love to talk about my opinions and experiences so this was an opportunity to have an impact, however small, on the way this center will be designed and run. The panel discussion required me to wrap my brain around the things we’ve done that have worked, the things that haven’t, and my own beliefs about what constitutes healing and intervention – not to mention the financial implications of autism and how families afford it. Most people see the public face of autism and can understand that yes, it’s demanding to be a parent of a kid (or kids) with autism. What most people don’t see is the devastating financial toll the whole thing can take.
I bring this up because one of the questions asked of the parents at the panel was this – how much do you spend annually on ‘autism-related’ expenditures? We went around the table and the costs varied, with families of preschool-aged kids spending between $10k and $40k per year and the families with older kids between $10k and $20k per year. Per Year.
Lest you think the figure is exaggerated, consider the following: two hallmark treatments of young children diagnosed with autism are speech and occupational therapy. One hour of speech therapy, depending on where you are, can cost between $70-$180. Most kids with severe language deficits need at LEAST 2-3 hours of speech per week to make a real difference. The costs are similar for occupational therapy, up to $200 per hour. Most insurance companies in the US don’t cover these treatments. In Canada, children can get a limited amount through autism funding and supplemental insurance. Our supplemental insurance is $1000 / year so that’s roughly 10 hours with a speech therapist or OT, not even once a month! Some families employ full-time behavioral interventionists for their children, who work 30-40 hours per week and cost between $40-$60k per year.
In my lower moments, I wonder what ‘typical’ families do with the money we ‘autistic’ families spend on interventions – Luxury cars? Robust college funds? Vacations? We’ve managed to do without the luxury cars and elaborate vacations and as for the college funds, we set aside what we can and pray for scholarships. :)
So if I won the lottery, I would open the kind of center being considered right now, but I’d offer services at the lowest possible cost, or free, for those families who needed it. For all the single parents currently raising children with autism (the divorce rate among these families is roughly 80%) I’d create a place where they could go to relax, socialize with other grown-ups and have a cup of coffee while knowing their child was receiving the best intervention available from an enthusiastic and caring staff. I’d create a sensory gym the likes of which has never been seen so that the kids could get all the deep pressure, swinging and climbing they could need. And I’d create a cool game room so that siblings of kids with autism would have a place to go where they not only fit in but also are with other kids who ‘get it’.
The school I would love to build is a subject for another day, as is what I would do to take care of Lola and Jenny. You’ll learn more about them soon, too.
There are ways to ‘afford autism’ and I hope to post many of my ideas and strategies, as well as complete a compilation of strategies that I’ve been working on for a long time.
I suppose if I want to win the lottery, I should actually play it. But isn’t it a little sad that the odds of affordable, comprehensive care for all kids with autism, regardless of their parents’ income, are akin to being struck by lightning?
Peace.
Filed under: autism, autism intervention | Tagged: affording autism, autism, costs, occupational therapy, speech therapy
There are organizations and individuals who do give back to the community by supporting individuals on the autism spectrum and their families and who never ask for anything in return – we just need more of them.
I would like think that in some small way we (Friend 2 Friend Social Learning Society) are actually helping to create a society which is moving away of the autism cottage industry and moving towards an altruistic society which understands that not everyone can afford the supports needed for their children. We need more and more organizations and professionals that provide services at reasonable fees or completely free of charge which is the way we operate at F2FSLS.
So I have a challenge to all professionals/organizations out there in the lower mainland of BC who currently offer “intervention” services to individuals/families on the autism spectrum. If you claim to support families then LOWER YOUR RATES! Offer services completely FREE OF CHARGE! Families look around for organizations and professionals that are in this industry to help and not to make money – they do exist and when you find them you will feel like you have won the “autism lottery”