Federal elections are pretty much my favorite TV show ever, and I don’t like to be distracted when there’s one on. This year I have managed to become so entrenched that I remain only vaguely aware that something scary and saddening is going on in Japan, and can ponder the situations in Afghanistan and Libya only insofar as they pertain to the foreign policy discussion that should, but frustratingly is not, be going on in this election’s policy discourse. And then today – on debate day of all things – Nova Scotia’s provincial government was completely able to derail my attention with the release of what it called its Autism Spectrum Disorder Action Plan. Catchy.
My first reaction to this ‘action plan’ is that it is sparse. At 592 words (much of it political babble), I’ve made more detailed action plans for my younger son just in the course of mapping out one afternoon to his satisfaction. If I were to devise a whole action plan for autism in the entire province of Nova Scotia, I might need more words than that. Its lack of real substance aside, it throws a decent bone or two to the preschoolers in need of early intervention. But it mostly ignores the significantly larger portion of the population that actually live with autism – adults and older children.
The action plan calls for increasing autism funding by $5.5 million over the next two years. The bulk of this – $4 million – will go toward creating new spaces in the EIBI (Early Intensive Behaviourial Intervention) program. EIBI is widely, though not universally, believed, in the government’s own words: “to improve functional skills including communications, social skills and behaviour, so children with autism can better communicate and interact with their families, classmates and community.” Perhaps. There is significant room for discussion about the long term advantages of this approach, but many experts endorse it, and for now let us acknowledge that we are at least lucky enough to have a government in this province that gives due heed to experts. If the $4 million investment does what the government optimistically says it will, which is that “soon, every pre-school child with autism will have access to the program”, a significant improvement will have been made. Currently, participation in the program is determined by lottery, like in the Shirley Jackson story. Half the eligible kids currently get EIBI, the other half are not so lucky.
But – and this is a big but – that is just of the eligible kids. There are lots of autistic children who are not eligible for EIBI for a variety of reasons. The action plan does almost nothing for those kids, and they continue to fall more or less between the cracks.
On the subject of doing almost nothing, after the $4 million is subtracted, the remaining $1.5 million gets spread around in “supports for school-aged children, supports for adults, training to raise skills and awareness, and partnerships to support programming and services.” That’s a tall order for such a meager investment. But wait, let us see some detail on how these things will be achieved.
First, by “maintaining the provision of autism specialists at the Department of Education and in school boards so children have the support they need in the classroom.” So, one of their “investments” is actually a promise not to spend less. That’s like the time my boss gave me a raise by not cutting my pay. Swell guy, he was. The real slap in the face, of course, is that simply maintaining of the level of support kids currently get in the classroom just won’t cut it. These kids – my kids! – need more support than they get now. And maybe as a society we can’t afford that support or maybe we have even decided it is not society’s job to provide it, but let’s be honest about that and not pretend the kids already get adequate support in the public school factory.
Additionally, the action plan promises to “review and implement revised income guidelines for the Direct Family Support for Children program so more families have more access to things like medication, transportation and respite when a break is needed.” So some chunk of the $1.5 million is going to go into a review of respite funding, that much is explicitly promised. Changing the income guidelines, thereby increasing access to this funding is also explicitly promised. Conspicuously absent from the plan, though, is the promise to expand the funding of the respite program itself in order to accommodate the new demand. I’m not a big city economist, but I bet the tiny piece of that spare $1.5 million that’s left by this time is not going to do it. More likely, current funding will be maintained (we’ve already seen this government’s propensity to call that an investment), but will be required to serve a larger number of families. Thus the families who currently receive support may have that reduced in the future as their slices of the pie shrink.
Despite the already quoted promise of “supports for adults, training to raise skills and awareness, and partnerships to support programming and services,” no detail on how this might be accomplished is provided. Which is really just as well because one ought to seriously question the ability to accomplish all that’s promised on such a slim allowance increase.
The most intriguing part of the action plan for me was the announcement of funding for a tracking system for people with autism (and other disorders). As the father of two highly flight risk children, I welcome the the idea of a wrist worn transmitter. But this, though its announcement accompanied the provincial announcement, is actually a federally funded initiative and does not come from Darrel Dexter’s largesse.
The whole action plan falls short in its terseness, in its optimistic assertion that it can accomplish so much with so little, and in its failure to adequately address the needs of adults and older children with autism in its almost exclusive devotion to preschoolers. The preschoolers need attention, and early intervention is important, I don’t want to diminish from that. But I was talking with a coworker today who attended an autism charity event recently. She found herself surprised to be in a room with a large number of autistic adults because she somehow saw it as a childhood disorder. Intellectually, she knew autism was forever, and so she could have derived the existence of autistic adults, yet she still perceived it as a childhood thing. This is a view that I think is unfortunately quite widespread, and it helps account for the political focus on children with autism rather than on people with autism. Roughly 1 in 123 Nova Scotians have autism, the vast majority of them over six years old.
In short, while I applaud the NDP for making autism services an explicit part of its agenda, because that’s an important step in the right direction, I think this particular “action plan” more political than practical. And that’s not unlike four people who will take to the stage in a nationally televised debate tonight. Back to my regularly scheduled programming.