Much Ado About Little: Nova Scotia’s Autism “Action Plan” (air quotes mine)

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.

A letter to Darrel Dexter on the budgetary slashing of an already underfunded school system

Dear Premier Dexter,

cc. Stephen McNeil; Jamie Baillie; Ramona Jennex; Kelly Regan; Karen Casey

 

I am writing you to ask you to reconsider the proposed 22% cuts to the NS Education Budget over the next three years. In fact, I would like to see an increase in the education budget instead.

As the advocates for “Today’s Families” in the election that brought your government to power, I find it mystifying that these cuts could even be proposed, never mind actually implemented. Already, Nova Scotia lags behind other jurisdictions in terms of the educations we provide our children. Already, Nova Scotia lags behind other jurisdictions in its attempts to stem the flow of outmigration. Already, Nova Scotia lags behind other jurisdictions in its ability to attract business, immigration, and the professionals necessary to a healthy, educated and progressive society. Already, already, already. Education is the central pillar, and your government would have us lag a further 22%.

As the father of two autistic children whose needs in the classroom already go unmet, I am concerned that these so-called paper cuts are going to have very real consequences in the very real world.

There is a theory that you have never actually planned to implement the 22% cuts, that it is a scare tactic designed to cow the Teacher’s Union into reducing its demands or to cow we parents into accepting a lesser cut of, say, 10-15%. If this is the case, I can assure you we parents will not be cowed, and the shame you bring upon yourself by playing politics with the future prospects of our children will be felt forcefully at the ballot box in the next election. Your chickens will, indeed, come home to roost.

Mr. Dexter, I ask, beg, insist, that you abandon your plans to make up your budgetary shortfalls at the expense of our school system. Today’s families are today’s voters, the kids in these families are tomorrow’s, and we all have long long memories.

Sincerely,

David Croft

Chump change

I’ve been tweeting the hell out of the MLA expense story. I hesitate to call it a scandal, because political scandals tend to get saddled with the suffix “gate” and this has always been a cause of aesthetic concern for me. But make no mistake about it, some of the spending has been scandalous.

My friends are moderately split on the subject. Some of them think this is a tempest in a teapot that diverts our attention from the more important issues of housing, education, health, and the Olympics. These friends make a solid point.  One that  is being endlessly reiterated by Finance Minister Graham Steele, now touring the province on a push-poll “consultation” with Nova Scotians designed to justify an HST increase.  Mr. Steele tells us the MLA money we are talking about amounts to a “drop in the bucket”.  A few tens of thousands of dollars, and our focus on it is terribly distracting from the bigger picture. A few of my friends, and Mr. Steele, are right about that.  This is just chump change.

My other friends think that it was their chump change, and that makes them chumps, and it was their MLAs who made them that way.  They also have a good point.   Most of my friends are fairly politically savvy.  They may not be the compulsive wonks that dwell in my house but they stay in touch and they make informed opinions. They recognize that it isn’t all MLAs who turned them into chumps. They believe that most MLAs are hard working and honest people who want nothing but the best for their constituents. They also believe that Ghandi himself would have gone wild with an unchecked expense account. The opinion of our representatives from the Nova Scotian electorate at large seems considerably less forgiving.

A well known finance minister – then revelling in the glorious and unaccountable outrage that is Opposition – once came and spoke to a political science class I was taking. In politics, he told us, it doesn’t matter what is true, it matters what people think is true. Graham Steele, who is constantly telling us to forget about this, should talk to that guy.   Because the Nova Scotian electorate thinks he, and hs 51 counterparts, are criminals or just shy of it.  Graham Steele knows that’s not true, just like I do.  Unfortunately, the electorate is just not as forgiving as I am and anyway – it doesn’t matter what is true.

MLA expenses are more symbolically than materially important. They represent a selfish mismanagement of public resources by the people who promised to do exactly not that if only we’d vote for them. Naively, we voted for them and expected more. But fewer and fewer of us are falling victim to that patrticular naivte, and so fewer and fewer of us are voting. I have heard and read comments on this story from voters calling for a boycott on voting. Clearly, boycotting voting is the avoidance of, rather than the solution to, the problem, but this does not change that sense of further disefranchisement in voters. Such a boycott may not present a problem for the entrenched MLAs who could benefit from fewer outraged voters venturing to the ballot box, but it is potentially disastrous for our democracy.

The government can take steps to deter this disaster, if Darrell Dexter ever returns to Nova Scotia. These steps should include, but not be limited to: determining a just and open process of MLA compensation, opening the books completely on MLA expenses, changing the rules to make MLAs more accountable, and telling Graham Steele to think twice every time he wants to tell us to stop talking about this.

No Good Bastards

By now, Gerald Keddy’s apparent dismissal of the Halifax homeless and unemployed as “no good bastards” has been oft repeated around the province.  The responses I have heard have largely been, as the kids say, WTF?  Keddy has since issued an apology for having said the words, for not meaning the words, and for hurting those he hurt by having said, without meaning to, the words he didn’t mean.

But where the criticism rang genuine, the apology does not.  Keddy’s original comments were in defense of the hiring of migrant workers, which Mr. Keddy himself doesn’t do for his own Christmas tree operation, but which is nonetheless both a common and – to Keddy – defensible practice in the Nova Scotia agriculture industry.  My objective here is neither to celebrate nor denigrate the practice, but to take issue with Gerald Keddy’s sweeping and – to me – heartfelt dismissal of the unemployment and homeless issues in Nova Scotia.   That is, in the HRM part of Nova Scotia.  Never a party to miss a slot into which they can drive a wedge, Keddy pointedly talked about the no good bastards on the sidewalks of Halifax.  The unemployed of Bridgewater and of Lunenburg, and of rural constituencies in general, get a pass.  It’s the urban bums that make us bring in Mexicans.

As told in the Chronicle-Herald:

“Nova Scotians won’t do it — all those no-good bastards sitting on the sidewalk in Halifax that can’t get work,” Mr. Keddy said Monday.

He said if you want to “shut down the Annapolis Valley, and every market garden operation and all the apple industry, then don’t bring in immigrant labour. We’ve got 20 Christmas tree growers using immigrant labour this year.”

Enter Nova Scotian outrage.

Enter Gerald Keddy tersely apologizing for having ever opened his mouth:

“These comments were insensitive, and for that I am truly sorry…In no way did I mean to offend those who have lost their job due to the global recession, nor did I mean to suggest that anyone who is unemployed is not actively looking for employment.”

What is it then that Mr. Keddy meant to suggest when he cited the need to bring in Mexicans (“It’s not slave labour here“) to do jobs the unemployed no-good bastards from Halifax wouldn’t do?

Some years ago another Conservative MP took a swipe at the people of Nova Scotia, cited our “culture of defeat” as if our collective indolence were responsible for the socio-economic realities of the region.  That, of course, was Stephen Harper – Gerald Keddy’s master in Ottawa.  Harper said such things because he understood well the benefits of wedge issues in politics and understood further that the basis of all meaningful wedge issues in  Canadian politics are geographic.  We may have different takes on abortion and capital punishment and gay marriage, but culturally we all more or less accept that these issues are resolved and that it behooves us to accept things as they are and perhaps never mention them again.

Not so with geography.  During Harper’s federal rise, he played to his regional base.  And if that meant taking shots at Nova Scotians as welfare bums, he wasn’t above it.  Gerald Keddy did the same thing with his crack at the poor of Nova Scotia’s largest city – the regional wedge issue in Nova Scotia is, as always, urban vs. rural.  If you want to destroy the Annapolis Valley, Keddy asserted, force them to rely on the no good bastards from the city.  That would be good wedge politics if the people of Nova Scotia – rural and urban alike – hadn’t collectively raised their eyebrows and said “WTF?”

Keddy was compelled to trot out the standard issue apology.  It was insensitive, I didn’t mean to offend, etcetera, etcetera.  Left unrecorded, of course, if Mr. Keddy is sincere in his apology, are the reasons why he should have spoken so derisively of the urban poor in the first place.

Here’s to hoping Mr. Keddy joins the ranks of Nova Scotia’s unemployed the next time we go to the ballot box.

Neurodiversity rides the bus

My last blog was called Neurodiversity don’t ride this bus.  It told the story – as it was relayed to me – of how my eight year old autistic son was put off a Metro Transit bus for screaming.  The blog ended abruptly, because the world moves at the speed of Twitter now, and the CBC had phoned – wanting to come talk to us right away.  I had to stop writing, not to prepare for the interview, but to madly clean the house lest some cameraman should catch a wide-angle view of the chaos in which we live.  I intended to revisit the subject in my blog after the CBC interview was done, but the opportunity never presented itself.  I was surprised at their interest, and assumed it was the beginning and the end of media involvement.  Then some others picked it up, and the interview schedule got crazy for thirty hours.  There were cameramen and reporters in our house and on the phone for the better part of the next days.  There were live radio shows and an appearance on Canada AM.  It was an unexpected and demanding and extremely emotional two days.   We left the city for the night when it subsided, and tried to stop thinking about it for a little while.  It wasn’t over yet, though, because we still hadn’t spoken with Metro Transit.

I titled this blog – optimistically – a few days ago, and I left it at that.  That was when Erin Flaim, the Manager of service delivery at Metro Transit, called.  She wanted to talk with Charlene and I – to open a “dialogue”, in her word – about the recent incident with our son.   And she wanted to do so, understandably, away from the cameras and microphones and somewhat misrepresentative editorial practices of the mainstream press.  Charlene and I were accordingly invited to her office, and it was an invitation we readily accepted.  That meeting with Ms. Flaim (and Public Affairs Coordinator Lisette Cormier) was today, and I came away from it feeling optimistic not just about the seriousness with which Metro Transit took this issue, but about its willingness to cooperatively and constructively work on means to avoid such distresses in the future.  I kept the hopeful title.

Ms. Flaim and Ms. Cormier had different versions of the actual incident than we did.  They had a film of the incident, after all, which privacy policy unfortunately prevented us from actually seeing.  They assert, for example, that the driver did not actually say that Izaak had to get off the bus.  The bus was stopped and the driver said he couldn’t continue to drive safely if Izaak continued to scream.  The camp director then made the decision, voluntarily, to remove Izaak from the bus.  Personally, and I said so at the meeting, I thought this was a semantic point because the driver had created a situation where there was little choice – due to authoritative and social pressure – but to remove Izaak from the bus.  So the driver hadn’t explicitly used the words “off the bus” – there are a thousand and one ways to say a thing without actually having to say it.  The video says he didn’t say it, and Metro Transit has us at an advantage on that one, because we didn’t actually have a video camera on the bus and we can’t watch the tape they made.  But like I said, it’s a semantic point, anyway.  Explicitly or implicitly,  it was a driver’s words that caused Izaak to be removed from the bus.  We tended to agree to disagree with the transit representatives on this point, but we moved on.

I asked Metro Transit to issue a public clarification on one other point, because it sparked some heated comments on some of the stories.   There was a lot of hate from a lot of commenters.  That kind of stuff can get to you when they’re talking about your son.  Lisette Cormier made the helpful suggestion to ignore it, and Charlene has largely been able to – but I’ve perhaps been less successful.  Readers of my original blog will recall that the rest of the Autism Summer Camp staff and campers got off the bus one or two stops later because they couldn’t get back into the camp home base without the director, who had the keys and who had got off with Izaak.  When the group disembarked the bus and asked the driver for a transfer, they were refused one.  Comments to the media by transit spokeswoman Lori Patterson conveyed the impression that the transfers were refused because the group was riding the bus for free.  This was simply not true – a fact readily acknowledged by Ms. Flaim and Ms. Cormier – and Lori Patterson’s apparent assertion of it was actually a result of editing for TV news in order to make the story more adversarial.  It was a reasonable enough explanation that I let the matter drop. Besides, we all got misrepresented to one degree or another in the stories and the comments.

I offered to issue a public clarification of my own, too, because I accidentally misrepresented our case in a couple of interviews.  Because of a misunderstanding when the story was first relayed to me, I thought the camp counselors had asked the driver for a five stop grace in which to settle Izaak down and were refused it.  In fact, no such thing happened.  That was a result of my own misunderstanding, and I accordingly apologize for it.  The rest I stand by.

But since Metro Transit has no intention of publicly commenting on this story again in any way whatsoever, let this set the official record straight.  The Autism Summer Camp was not riding the bus for free and all the hate-filled commenters on the various stories who jumped on this notion to justify and spew their hate can just….well, you know what they can just go do.

Although it was a sometimes emotional meeting – Charlene cried once or twice and my voice raised as I had a renewed (but brief) fury at the notion that Izaak had been on the bus for just 3.5-5 minutes total before the driver could take no more – it was also a highly productive meeting.  Despite the points of disagreement, Ms. Flaim will send a letter of apology to Izaak and one to the Camp Director,  a remarkable man who acted in Izaak’s interests and called due attention to a perceived injustice.  My gratitude is with him 100%.

Once the meeting today moved past the actual specifics of the incident and focused on the future, there was significantly more common ground to be found.

Metro Transit doesn’t want to be accused of intolerance and discrimination any more than they actually want to be practicing them.  And they sincerely seem to be open to ways of avoiding these situations in the future.  They already have a relationship with the Mental Health Association and will be working with Autism Society Nova Scotia and with Artists for Autism going into the future to help generate awareness not just within Metro Transit itself, but in the public at large.  They are developing a diversity training program for its operators that incorporates cultural and neuro diversity and are open to suggestions that would enhance that programming.  Ms. Cormier eagerly welcomed my suggestion that we place Autism Awareness advertisements on the buses, and are interested in a “tip sheet” for parents of kids with autism and transit drivers alike that Charlene and I offered to develop.

Furthermore, it turns out that the boys are eligible for Access-a-Bus service.  It had been a couple of years since we inquired about it, so the rules have either changed or were misrepresented to us at that time.   I suggested that Metro Transit make well known to the various autism advocacy groups in the city that their members and constituents may qualify for this service.  Left unaddressed was the problem of lack of institutional access to Access-a-Bus.  If special needs groups could use this service, the whole incident might have been avoided in the first place.

I suppose all sorts of things were left unaddressed – you can’t fix everything in an hour and a half.  But you can take your first baby steps, and this is what we did today.  I am enormously grateful to the media (even the few who did some questionable editing) for bringing this story into the public and making people talk about autism for a couple of days.  I am even more enormously grateful to Erin Flaim and Lisette Cormier, who recognized the significance of the issue and who wanted to give it more sincere and detailed attention than a soundbite ever could.

Neurodiversity don’t ride this bus

My son, Izaak, was kicked off the bus today.  A little background:  Izaak is eight years old and is autistic.   He has been attending the Autism Summer Camp and was with that group today when the incident with Metro Transit happened.  He was screaming.  A little more background: Izaak’s screams can be an unsettling, almost supernatural experience.  They are also loud – they are so, so loud.  The driver of the bus, understandably, seemed to get a little rattled.  Less understandable was the driver’s reaction, which was to stop the bus and order that kid off it.

The child has autism, it was explained to the driver, lest the sea of bright red shirts with the clear white lettering reading AUTISM SUMMER CAMP in CAPS on both the front and back was insufficient, let us have a moment to calm him down.

Get him off my bus, it was explained to the camp counsellors.  I wasn’t there, so I am avoiding direct quotes and relaying the gist as it was relayed to me.  The upshot was that Izaak was removed from the bus – his amazing and dedicated counsellor and the (if possible) even more amazing camp director at his sides.  Almost as soon as the bus began moving – the rest of the kids and their (what must have been bewidered) counsellors still on it – one of the counsellors realized that with the director off the bus, keys with him, when they actually got back to the camp location nobody would be able to get in.  They had to get off the bus, too, and – even after explaining this to the driver, he refused to give them the necessary transfers so that the thirty or so of them could catch the next bus for free.

This is neurodiversity and tolerance – Metro Transit style.  Kids with autism aren’t ‘disabled’ enough to use the access-a-bus, but they are too ‘disabled’ to be tolerated by drivers of the standard buses.  The blind can ride the bus for free, but some kids with autism not at all?   For the record, I have no problem with blind people riding the bus for free (I think everybody should be able to do so), but I can’t accept a special rule, driver-imposed,  targeting my son directly and others like him.

In the end, the next bus driver let the whole camp on and didn’t demand the transfers.  He knew the camp, the kids, the counsellors.  He liked them, besides.  the issue was rightly brought to Metro Transit’s attention by the camp director, a file number assigned and an investigation pending.

New details to come, but I have just discovered that CBC  is on its way over for interviews so I have to clean up.  I’ll keep you posted.

“A recognized party under review”

“A recognized party under review” – that’s the official view of the Green Party of Nova Scotia from the only organization whose official view really matters – Elections Nova Scotia.  Party leader Ryan Watson and Official Agent Kathryn Herbert met today with the province’s Chief Electoral Officer Christine McCulloch regarding the potential deregistration of the party.  You may recall that the party failed in its obligation to meet certain deadlines for the submission of important financial information to Elections Nova Scotia.  The Green Party of Nova Scotia was given thirty days in which to comply with the law before a decision was made regarding the official status of the party.  I was under the impression that the party had complied with the law, that the meeting today was a mere formality – the wagging of a finger by the CEO at the Green Party, with a minor scolding to ensure the party never acted in such a way again.

Christine McCulloch was obviously of a different impression, as she came away from the meeting – according to ENS spokesman Dana Philip Doiron – believing the Greens “didn’t demonstrate that they had taken all of the steps to become an organized party yet.”  And so the party’s status remains in limbo, “a recognized party under review”, a new deadline for individual candidate expense forms to be submitted.   These must be delivered to ENS by the 18th of this month.  That’s just 13 days from now – tick tock tick tock.

Will the party get the job done?  The Province’s Chief Electoral Officer “didn’t get that sense of confidence.”

The Green Party of Nova Scotia has dealt itself one successive blow after another – from a botched election to a botched executive.  From its failure to comply with its own constitution to its failure to comply with the province’s laws – if there has been a way to screw it up, the Green Party of Nova Scotia has found a way to do it at every conceivable turn.

And yet, here I sit.  A paid up member who believes in it still.  I am even a brand new member of the executive (interim, pending the result of a postponed constitutional debate) because I believe in the ability of  the party to break out of its chronic pattern of self abuse and public humiliation.

And then GPNS can grow to its full potential, where it is the voice for sustainability and self-sufficiency in Nova Scotia.  Where it is the advocate for major political reform in Nova Scotia.  Where the disenfranchised (and the newly disenfranchised – the coming large demographic of alienated Dippers) turn to GPNS to express and have expressed their own political voices.

GPNS can make an enormous impact in the future, but only by first gaining the confidence of both the Chief Electoral Officer, and the taxpayers of the province of Nova Scotia.