#CASDASummit2018: Day 1 and Self-Care

First day of the CASDA Summit of 2018 (Wednesday April 18). Woke up earlier than I meant to, which was irritating. Read an article from the Ottawa Citizen written by Senator Jim Munson, and got upset about some of the terminology used. (He saw my tweet, and apologized both on Twitter and in person, I definitely have to respect that.)

Got to the summit place (same place as last year, the Shaw Centre, which is attached to the Rideau Centre, which is kitty-corner from the hotel), grabbed breakfast and chatted to various people, including the other ASNL staff and board member there, and then settled up front at the “autistics'” table. 🙂 (AKA the table that most of us sat at, including all of us who were on the “First Voice Perspective” panel.)

Just a warning note before I get into the day’s panels: I was only able to note down certain comments (as opposed to the whole speech of each panelist – thinking of recording certain panels next year for my own info), so I went for the ones that struck me as particularly important in what each of them were saying.

I’m going to basically skip the description of the summit opening, save to say as was done last year, respect was paid to the Algonquin people, whose land we were on, and Jerry Lanouette, who is a Helper for the Algonquin Elders, welcomed us.

So, the first panel was titled Collaboration in Action, and we had panelists from the Ontario Autism Program there to tell us how they handled engaging stakeholders and what were the drivers of change, and what were the results. Panelists were: Sarah Hardy, Bruce McIntosh, Sherry Fournier, Marg Spoelstra, Debra Kennedy (bios for all panelists can be found on the CASDA Website – at least until prep is started for the 2019 summit).

The first question for the panelists involved what were the drivers of change that had prompted them to create the OAP. Answers included (but were not limited to): long wait lists; limited access to services; availability of different levels/types of services as situations and needs changed (this was a good one, acknowledging that things do change); need to engage differently; re-introduction of age cut-off limits; that there was a strong committment to continually revise the program; the opportunity to engage in a diverse group; and some others. It was also mentioned by Debra Kennedy, who is an Occupational Therapist, that the process involved ministry committment and an iterative process (which is not the norm for government-backed projects). There was a lot of talk about diversity – though strangely enough, adult autistics weren’t mentioned, and there was no autistic contributors to the development of the program, which… well. So much for diversity of opinions. One of the things that we tried to hammer home in our panel is nothing about us without us.

The next question was about key challenges. Marg Spoelstra, when answering this question, did mention that autistics were not at the table, so I give her credit for acknowledging that and the topic under which she talked about it. Other items brought up included: there was a lot of tension to start out with between those involved; the government not being used to the iterative process; having many different perspectives at the table (thus the initial tension); Bruce McIntosh mentioned that it was difficult to represent the range of parent input, and really hard to shuttle the reactions of the parents to the panel and vice versa, in part because of non-disclosure issues; Debra Kennedy mentioned that there was personal dissonance for her, because the program was only looking at evidence-backed services, and as an OT she felt there’s a lot more behavioural supports that can be brought; Sherry Fournier said the first four meetings were especially tense for her, because she represented what people wanted changed, and she had to work hard to build her credibility.

One of the things that was mentioned in answer to this question had our table exchanging looks of irritation and exasperation. Apparently, in order to help guide the process, they created profiles of 5 autistic children, and based how they went on how those children would have reacted to things. Um… part of the issues autistics have with non-autistics is that we think and process differently than they do (and Theory of Mind is garbage, seriously, it’s only valid within your own neurotype), so how can they even believe that they did an adequate job of that? All they know is from the outside! They don’t know how we think and process! There’s no way that their imaginary children’s reactions would be accurate. (See my post on Experience Invalidation: Telepathy and ToM for a critique of that.)

The last question for the panel’s speech (before audience questions) was about key successes. Answers included: CASDA having them up here as partners; talking about hard experiences in a positive manner; process wasn’t a “typical engagement”; they shared an awful lot more than they disagreed about; constantly going back to the “children scenarios” (I would not call this a key component of anything, see the previous paragraph); diversity and representation (again, no, there were no autistics at the table); the iterative process; strong committment for creating the new program; cross-engagement with other ministries.

The first audience question involved how will they know if the OAP works? Measurements included: database and waitlist changes; families getting what they need when they need; strong support system around families; better access to services throughout the province; measuring the outcomes; how else are families being supported (as opposed to just behavioural support).

Second audience question involved have you been speaking to other provinces, providing them with information and have other provinces been speaking with you? The answer was that yes, and they’d also learned from different international and provincial models.

The third question was likely from our table: “How did you include who was on the committee, and what about autistics?” The answer involved: Government requirements; “designed to be broad”; they wanted discipline representation; apparently there was some general engagement with “youth with ASD” (though none of them was directly involved); now there’s youth autistic engagement in the process of measurement. They didn’t answer about why they didn’t have adult autistics involved, especially given that at least some of them (those not late diagnosed) would likely have gone through the system before the OAP! A frustrating answer for us.

The last audience question they had time for was about lessons learned. The answers included: Be open and vulnerable; engage openly and respectfully; “just because you think you have the solution doesn’t mean you do”; seize the day; you’re not going to accomplish everything that needs to be done in a committee like this, but it gets a toehold in the door; agreed statements every time they left to keep constituents involved without breaking non-disclosure.

The next talk was on the National ASD Surveillance System, entitled National Autism Spectrum Disorder Surveillance Data: Using Data to Inform Our Work. This talk wasn’t done by a panel, but by one speaker, Dr. Marianna Ofner from the Public Health Agency of Canada. The first report, covering 2015 with data from ages 5-17 from 7 provinces and territories (including Newfoundland and Labrador) was released last month, and gave us a Canadian statistic, so we can finally stop using the US statistics. That overall number was 1 in 66. (Interesting note: One of the authors of the study, who happened to be sitting at our table, was recently diagnosed as autistic.)

The talk involved details about the process that was taken and the data sources used, and how they were used; basically, the PHAC took a multi-source and multi-sectoral data collection process. (In case you’re curious, details are available in the report itself – available along with a few other resources concerning it on the Government of Canada website; a direct link to the page is here.)

I was in the process of writing a question about why there is no data on adults (which would undoubtedly change the sex ratio numbers, given a large number of female autistics are diagnosed late), when it was answered in the talk (thank you to Dr. Ofner for that, BTW – it was appreciated that you mentioned it without prompting!). It seems that the data sources they have for adults are vaguer and less verifiable, and they want to have only data that’s verifiable, so that’s why the report is only on children aged 5 to 17.

There were two or three audience questions asked after the talk. The first involved the question about how they decided what provinces and territories to approach, because they had the data only from Newfoundland and Labrador, Prince Edward Island, Quebec, British Columbia, Nova Scotia, New Brunswick, and the Yukon. The answer was that all provinces and territories were approached, but the data was only used from those who had a verifiable source of data from 2015. There’s hope to expand it to all provinces and territories. (In contrast, the U.S. numbers involve 8 year olds from competitively selected locations in 11 states. Despite that, the numbers are similar. In comparison, the prevalence of autism among 8 year olds in the NASS report was 1:63, where as for the US it’s listed as 1:68 from 2012.) Also, they definitely want to expand the age range they have stats for.

The second question asked what kind of health data they were tracking. The answer was (aside from the statistics in the report) co-occuring conditions and age of diagnosis.

The last bit (can’t remember whether it was a question or not) was that the PHAC is still exploring the best way to track/get information from the indigenous population.

The third session was about Accessibility Legislation, and the speaker for this talk was James VanRaalte, who is the Director General of the Accessibility Secretariat. The first thing he did was apologize for the Minister, who couldn’t make it for that talk. Then went on to discuss the accessibility legislation that is currently being worked on.

(Side note: Throughout this, I am using the term “persons with disabilities”, because this topic is about more than autistics, the Blind, and the Deaf. The majority of persons with disabilities – aka those who are not in the above categories, or even those who are but are also dealing with co-occuring conditions – prefer person-first language. Just as I promote the use of the term “autistic” because the vast majority of us prefer identity-first language when dealing with autism, I recognize that those with other disabilities prefer person-first language, and I need to respect that.)

Points raised by the talk include the following: They are working on shifting the way we talk about and to persons with disabilities. For enforcing the legislation, they have to find a balance between the carrot and the stick. He explained that it will need teeth so that it can be enforced, but at the same time, it still needs room to allow for innovation – new methods of providing accessibility that may work, but are not thought of in the original legislation.

He also spoke about the different kinds of accessibility. He explained that “built environment” (ramps, elevators, etc.) and “transportation” accessibility are easy for people to comprehend; they’re what the majority of people usually think of when accessibility is mentioned. The most difficult parts involve “service” and “employment” accessibility.

For service, he pointed out that the metrics of delivery of service involve timeliness. How fast does someone help you. That’s a problem for any persons with disabilities who have issues with needing time to deal with things. Processing difficulties (which is one of the issues for autistics), reading difficulties (aka dyslexia, for example)… just two examples with which I’m familiar, I’m sure there are many others. This is a difficult situation to get an idea of accessibility for. (Though I suspect that one item on the list is getting business to redefine their metrics for success – which involves the difficult matter of culture change.)

About employment accessibility – he gave an example. There are a number of employees in government service who are unable to do their jobs with the “required” software, because that software is inaccessible. There are quotas on hiring minorities, including persons with disabilities, but that doesn’t help if they can’t do the job they’re hired for because the tools needed are inaccessible in some way. Yes, there is the matter of accomodations, but it would be much easier on everyone if accomodations (like different software that has to then “translate” for the right software to use its data) weren’t necessary because it was already accessible. Plus, of course, there are differing disabilities, and so differing solutions are needed.

The last remark he made before the floor was opened for questions was that he was actually heading back to the office now to go to a meeting where they would be working on finalizing the text of the accessibility legislation so that it could be raised to the House of Commons before the end of the spring session.

There was one question, focusing around the matter of accessibility for those with sensory processing issues. Director VanRaalte explained that the legislation is what is called “enabling” legislation – essentially, it sets up the rules for how we will develop rules around accessibility. It’s trying to look at all functional limitations, but there will need to be people at the table to discuss that. The government will need to work on alliances (with organizations and with individuals with disabilities) in order to help make the legislation real.

The last note that I have on that session is “Good talk, got the meat of the matter across”.

Now, one thing you have to know for the afternoon is that I was wiped. (Still.) I got four hours of sleep Tuesday night (when Patricia and I get together, especially if there are other autistics with us, we can talk for hours and, of course, lose track of the time. It didn’t help that I woke up about 20 minutes before my alarm was due to go off, which was set for 6:30 so that I could doze for half an hour and then still have time to get dressed and over to the summit in time for the 7:30 registration and breakfast). And since I wasn’t going to Autism on the Hill – it was a bit of a nightmare last year, between my feet being badly swollen and the kid giving a speech having a meltdown because his mother wouldn’t listen to him after he lost his place in his speech – I decided to head back to the hotel after I got lunch to have a nap. Besides, I figured I could easily skip the CASDA AGM and the Ready, Willing, and Able session, not to mention the sponsor remarks. (I did stay for the start of Spectrum Productions‘s announcement about Introducing Spectrum LIVE, but was leaving at the time. All I remember about it is that it’s something involving films by autistics….) I did want to be back for the session on mental health – Ally Garber (friend from CAPP) and Daniel Share-Strom (an autistic workshop facilitator who was also on our panel First Voices Perspective) were both participating.

So I got back to the hotel room, and discovered that there must be some kind of curse about Ottawa… because guess what? My feet were swollen. Ended up calling my mom and chatting with her for a bit before I crashed for a nap… and woke up at about 3:15/3:30. (Mental Health Supports Across the Lifespan – Formal and informal mental health supports was taking place from 2:30 to 4.) So I didn’t get to go to that. Luckily, I’d texted Ally and Daniel beforehand to let them know that I might not make it because of my need for a nap, so they didn’t feel hurt that I wasn’t in the audience. (The “autistics’ table” was right at the front of the room.)

I was also skipping the summit reception (again, was an overwhelming – in a sensory meaning – session and made my poor feet swell even worse last year), in part because of that and in part because of dinner with my cousins. 🙂 The youngest cousin in Ottawa and my cousin-in-law who is the partner of the cousin who is next youngest in age down from me (I’m second oldest of us) met me in the hotel lobby, and then the cousin-in-law whose house we were going to for dinner picked us up.

It was a lovely dinner, had a great time there. And I discovered something rather interesting. First of all, you have to know that my cousin and her husband (whose house we were at) live in Gatineau, so “across the bridge” that divides Ottawa, ON, and Hull, QC. Specifically, they live in Elmer. There had been wine at dinner, so we took a cab back. (The cabs can cross the bridge, but Ottawa cabs can’t pick up fares in QC, and Hull/Gatineau cabs can’t pick up fares in ON.) So, the cab from Ottawa airport – the fare increased in $0.16 increments. The cab from Elmer? Increased in $0.05 increments! A cab ride of half an hour to forty minutes cost us $30.25. I was stunned. (For comparison: In St. John’s, the fares increase in $0.25 increments.)

That night I actually took the hotel room that Bruno Hache was going to take, because it was available, paid for, and neither Patricia nor I had finished our speech for our panel on Thursday, so it was easier if we had some alone time to do that.

So, that was Tuesday. Tomorrow (Sunday), I will be posting the events of Thursday, save for our panel, the details of which will be posted on Monday. If you want to deal with my Twitter feed, you can always look at my tweets and re-tweets from the 18th and 19th for some of the details!

‘Later, all!
🙂 tagÂûght

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