National Autism Strategy: An Updated Guide
I’ve created an expanded and updated National Autism Strategy guide to help outline where we’ve been, what’s been happening lately, and where things may be headed in the near future.
I’m going to break it down into 5 sections:
1. What is a National Autism Strategy?
2. What were the federal parties actually planning to do?
3. What has been suggested so far?
4. Additional/miscellaneous info
5. What are the priorities, and how do we get there?
There’s a lot to cover, and along the way I’ll link back to some of the previous pieces I’ve written that went into more detail on certain aspects.
My hope, though, is that this piece can stand alone as a good summary of what a National Autism Strategy (NAS) could be, and how we might get there.
For now, let’s start at the beginning.
1. What is a National Autism Strategy?
There’s a lot of confusion out there surrounding what the phrase “National Autism Strategy” even means, and with good reason.
The truth is, it doesn’t mean anything concrete yet. There have been calls for some kind of a strategy since at least 2007, when the often-referenced senate report, Pay Now or Pay Later: Autism Families in Crisis, outlined the state of crisis faced by families.
When trying to navigate a system of government support it becomes all too clear that the current offerings fall far short of meeting the needs of autistic Canadians, no matter where in the country you live. This becomes even more apparent in under-served communities.
For some history on previous government efforts in the push for a National Autism Strategy, you can look here.
Coles Notes: The focus was often on modifying the Canada Health Act, and that always seemed to be a dead end.
Generally speaking, the disability community lives in a world that is not designed for them, and there is a rising call to try and make the world more accommodating and barrier-free. It’s time for the government to identify the problems, and tackle them in a real way.
It’s also important to consider that autism is a condition that affects someone throughout their entire lifespan. The focus of provincial governments is often on supports for autistic children (access to therapy, school supports, respite, etc). Those children become adults, and their need for support doesn’t end at 18. The scope of their needs also changes, and new challenges emerge, like finding employment, housing, access to healthcare, etc.
There is a role for the federal government to play, and not one siloed in a single ministry. Multiple ministries should be involved to properly reflect the broad range of needs affecting autistics.
I wrote about which ministries are likely to be among those in-play in a previous piece:
What a National Autism Strategy will ultimately look like should be based on consultation with both the autistic community, as well as those who support them (as there are many who may not be able to speak for themselves).
The actually autistic voice is an important one, and must be carefully considered. Those who have first-hand experience on what is, or isn’t, working in government supports should be encouraged to share their insights on where/how they could be better supported. Further to that, I acknowledge that it is almost certainly more difficult for the average autistic person to have their thoughts shared if they don’t have an accessible channel to do so. It must not be taken for granted how much easier is to collect feedback from the neuro-typical community. To reach the autistic community, and truly hear their needs, their feedback should be actively sought out, and from a variety of sources.
There will be adult autistics who can speak for themselves, but equally important are the needs of those who cannot communicate directly to the government (children, non-verbal adults, etc). Their family and caregivers (the people who spend time with them every day and can speak to their perceived needs) are also a crucial part of the conversation. There is no one voice that’s most important.
2. What were the federal parties actually planning to do?
Let’s do a quick review of what the 3 main political parties promised during the election in terms of a NAS.
Essentially, no one had a clear plan set out yet, just a plan to make a plan.
Conservatives
The CPC commitment was announced back in early October by MP Mike Lake, alongside his son Jaden:
He mentions “policy levers” that the federal government has that can be part of an effective strategy, but doesn’t expand on what they are.
Lake also acknowledges the high cost of evidence-based therapies and services for autism, which is a major concern for many families.
If elected, the CPC plan was to earmark $10 million/year to work with stakeholders and develop a NAS, which he called a “first step” towards a world where autistic Canadians can be better supported, and provided with the resources they need to thrive.
Andrew Scheer spoke directly about how he saw things shaping up in the future on a visit to CTV’s Your Morning. If you’ve got a couple minutes, I encourage you to watch this clip:
Mulroney and Mediwake press Scheer on whether the CPC NAS would aim to cover autism therapy under health care. He dances around it a little, focussing more on the provincial responsibilities to provide the actual services, but does say it’s something they would hopefully work towards.
NDP
Their platform included this statement about a NAS:
Their plan was $25 million/year (more than double the CPC budget), to develop and implement a NAS, with a few named areas of focus:
- Research
- Access to needs-based services
- Employment
- Expanded housing options
You can hear NDP leader Jagmeet Singh speaking about his thoughts on a strategy in the opening of this Power & Politics clip:
The Singh clip is brief, but it’s followed by a great discussion with Cynthia Carroll (past-chair of CASDA, and current Executive Director of Autism Nova Scotia) explaining how a national autism strategy could work. It’s a must-watch. She really covers all the bases, and it’s a great primer for the further discussions that need to happen.
(Note: This clip was filmed before the LPC had committed more formally to a NAS, which is where we go next)
Liberal Party
The LPC commitment prior to the election was a little disappointing, but they came out swinging in December 2019.
PM Trudeau promised to a develop and implement a NAS in a video message played at the Pacific Autism Family Network LAUNCH Holiday Luncheon.
He later backed that up in the official ministry mandate letters, tasking both the Minister of Health (Patty Hajdu) and the Minister of Employment, Workforce Development and Disability Inclusion (Carla Qualtrough) to work towards a strategy.
From the letter to the Minister of Health:
Work collaboratively with provinces, territories, families and stakeholders toward the creation of a national autism strategy.
Then in Qualtrough’s letter:
Support the Minister of Health toward the creation of a national autism strategy
The call for cooperation between the provinces/territories and the federal government will be an important part of the process. The feds can spearhead the development of a NAS, but ultimately the individual provinces and territories will be largely responsible for the implementation part.
3. What has been suggested so far?
There’s been no shortage of ideas through the years on what might be a part of a national strategy.
There are no right or wrong answers here, but it’ll become clear there is some real common-ground to build on.
Let’s look at this chronologically.
2006 – The Senate Report
Pay Now or Pay Later: Autism Families in Crisis
As a resource, this report is still as relevant and important as it was on the day it was written. It’s worth the read if you have the time. Here’s their summary chart of recommendations:
There’s a lot of great suggestions in there, but the committee’s “primary focus was federal funding for autism treatment.” They acknowledged that much of the funding for ASD services (health care, social services, education, etc) are under provincial jurisdiction for deciding how money is spent. Some of that money does come from the federal government by way of the Canada Health Transfer, but if the Canada Health Act (CHA) doesn’t consider autism services like IBI/ABA therapy to be “medically necessary” there’s no guarantee that the provinces have to provide funding for that therapy.
Despite numerous attempts to push for a change to the CHA, it’s never been successful. The senate committee suggested looking for “innovative funding arrangements” to cover therapy costs.
With the recent success of using bilateral funding agreements between the federal and provincial governments on things like the National Housing Strategy, and the National Dementia Strategy (making use of the Shared Health Accords), a path forward is not just a pipe dream anymore.
It was the suggestion of the senate report to have:
The federal government convene a federal/provincial/territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy
It’s time to get the relevant ministers together, and start working towards a bilateral agreement that can include autism therapy funding, and they can do it without having to change the CHA. I highly recommend reading Scott Corbett’s piece on this:
To build on what Scott wrote, I tackled the subject as well:
Bottom line: That “innovative” funding arrangement to cover therapy with federal dollars may be within reach now.
The Canadian Autism Partnership Project
In 2015 there was the launch of the Canadian Autism Partnership Project, from CASDA.
Here’s a video summary of what that was about:
The Canadian Autism Partnership Project, led by a Working Group of experts representing the diverse sectors of the nation’s Autism community, as well as seven dynamic Autistic self-advocates from across Canada, consulted with 5,000 Canadians from coast to coast to coast.
There’s a lot of information about CAP on their website, including the results from their nationwide needs assessment survey, a full business plan, and lots of other resources.
Here’s a quicker summary of their priorities:
A ton of work was done on this project, and the business plan for CAP was presented to then Health Minister Jane Philpott in November 2016, with an ask of $19 million over 4 years.
Funding for CAP, however, was not included in the next federal budget.
When CAP was brought forward as a motion in parliament by Mike Lake in May 2017, it was voted down.
The Liberals didn’t go for it, and it wasn’t entirely clear why.
Autism Canada, which initially was working with CASDA on this, released a statement the next month, withdrawing their membership in CASDA, along with their support of CAP.
“Our reasons for our withdrawal of support are threefold; a lack of financial disclosure, lack of transparency and lack of concrete, measurable deliverables.”
You can read more on the aftermath of the vote here:
Per Mike Lake:
“More and more it seems like the reason they voted against it was because it simply wasn’t their idea. And they don’t have an idea to replace it.”
Regardless of what happened, this wasn’t the end of CASDA, as we’ll hear from then again soon.
2016 Liberal Policy Resolution
MEDICARE COVERAGE FOR THE TREATMENT OF AUTISM
A year before the vote happened on CAP, the LPC had strong support from their delegates at the Winnipeg 2016 Biennial Convention for the following resolution, which was passed:
As we know from the earlier discussion, amending the CHA might be a no-go, but ensuring coverage of ABA provincially via bilateral agreements with the federal government is looking to be a viable alternative.
There is a precedent for this kind of arrangement now too, with other national strategies already in place.
Autism Canada sent a letter of support to the LPC, supporting this policy resolution.
“We need to ensure that all provinces and territories receive funding for science based treatment. This can happen with the support of the federal Ministries of Health and Finance. Having evidenced based early intervention more universally accessible to all Canadian families living with autism spectrum disorders will make a demonstrable impact on the quality of life for individuals and their families.”
Despite support for the resolution, the federal government has yet to act on it.
Autism e-Petition (e-2138)
This petition was launched in April 2019, and collected over 5,000 signatures from all across the country.
It was initiated by Ottawa parent Mark Chapeskie, and sponsored by Nepean LPC MP Chandra Arya.
The details:
In addition to coverage for evidence-based therapies, there was a call for improved financial support when it comes to things like the DTC, RDSPs, caregiver allowances, etc.
CASDA Blueprint
Also launching in April 2019 was the CASDA Blueprint for a NAS.
Their website has some useful resources, including this FAQ, which I found very useful. Here’s a particularly important section:
The blueprint was never meant to be a finished product, but rather a strong building block to start the conversation.
CASDA met with many key players during the election campaign to help build momentum for adopting a NAS push.
Judy Sgro was one of the most public supporters of a NAS within the LPC, and helped collect signatures of support from her Liberal colleagues.
Francesco Sorbara has also been a strong autism advocate, and is seen here meeting in the summer with Debbie Irish and Jill Farber, both on the board of CASDA.
Mike Lake made the official announcement that the CPC was including a NAS in their platform on October 6th, just a couple weeks after this tweet from CASDA.
Here’s a quick summary on the building blocks CASDA was suggesting for a NAS:
Here’s another key passage from the FAQ:
CASDA calls their blueprint “the beginning of the discussion, not the end of it,” and strongly encouraged consultation with the ASD community.
A4A Ontario
In September 2019, Austistics for Autistics (A4A), an autistic led-and-run self-advocacy group, released the following statement on their website:
National Autism Policy: Where We Stand
They identified 5 key areas that self-advocacy groups like them focus on:
- Communication Access – For the non-verbal or semi-verbal autistic community there is a long wait for access to AAC (augmentative and alternative communication). Government funding and support could help improve access to this important tool.
- Inclusive Education – Autistic groups are big proponents of inclusion rather than segregation. Though education is a provincial jurisdiction, information sharing through a NAS could help ensure accepted inclusive education models are more readily available across the country.
- Employment and Support – Poverty and unemployment can be major issues for autistics, and strategies must be created to help improve access to meaningful employment, promote inclusion in the workforce, and improve flexibility when coordinating with disability benefits (if working part time, or working off/on, etc).
- Desegregated Housing – Autistics advocate for independent supportive living strategies, rather than segregated models. They seek to promote autonomy and community integration, giving the example of LiveWorkPlay.
- Access to Health Care – They advocate for training health care professionals in AAC to enhance communication capabilities, which would improve accessibility in general to medical offices or hospitals, for the health care they need and deserve.
A4A concluded with this statement:
We are asking the Government to listen to autistic people about our experiences, perspectives and ideas; to study best practices for access, inclusion and human rights; and to craft policy that is informed by the real experts, globally, who are making inclusion and access happen.
Absolutely valid. Involving autistics in the process of developing a strategy about them should be a no-brainer.
For a more in-depth discussion on the self-advocacy group’s position on national disability policies, see their full recommendations report here.
4. Additional/miscellaneous info
I wanted to start this section by sharing a couple of op-eds written in the last few years on a national strategy. Personal touches can really help cement what we’re really doing this for.
There are 2 pieces that I often come back to.
The first one is from Kathleen O’Grady, a writer, editor and political/media strategist from Ottawa.
O’Grady has an autistic son, and with that comes the firsthand experience of the roadblocks associated with an inadequate system of government supports.
I remember coming across her op-ed very early on into my advocacy life, and have appreciated her insights ever since.
The second is from Senator Jim Munson, who has been the heart and soul of the National Autism Strategy movement since the beginning. Such a wonderful man, and someone who truly speaks from the heart. He wrote this in April 2018:
His commitment to the autism community has been inspiring, and has helped many advocates like myself stay motivated.
Briefly, I wanted to at least mention what happened in the US recently:
The Autism CARES Act ensures support for research, services, prevalence tracking, and other government activities. The new legislation increases the annual budget on autism efforts to $369.7 million through 2024. New provisions expand the focus of government activities to include the entire lifespan of people on the autism spectrum and require a report on health and well-being.
US health care / insurance is so different from ours, and there’s certainly no plan to to model any support programs after our neighbours to the south, but they certainly are committing BIG dollars to research down there, and it’s important that Canada pays attention to any relevant information that is discovered to help better support autistics and their families.
For an important perspective, listen to this radio clip featuring Leslie Peters (Executive Director of Autism Yukon, and board member of CASDA) speaking on a NAS:
She highlights the inequities in available supports across Canada, where services can vary depending on where you live.
Autism Yukon will get calls from parents in other parts of the country asking about available autism services up north, trying to find out if their child might be better supported if they picked up their lives and moved. Many may be willing to do this if they know their children will get the best possible care, but it shouldn’t have to be that way.
She also outlines the need to have best-practices made clearly available and known, to ensure people are receiving evidence-based therapy and support.
A standard of care must be set, and followed.
All autistic Canadians deserve equal access to the right kind of supports.
The financial burden placed on families can’t be ignored either, nor can the uncertainty that comes with changes in government.
Under the new Conservative government Ontario saw massive changes to the provincial autism program in 2019, and it has created a storm of advocates all standing up and fighting for their loved ones to get the support they need.
The Ottawa Citizen wrote a nice piece here sharing some of these stories:
Hundreds of advocates came together this year in Ottawa, marching 22kms in a symbolic journey called Canada’s Next Step, demanding leadership from the federal government on autism supports.
Provincial governments come and go, but that shouldn’t need to be the case for the support that autistics receive. Stability is so important, and a NAS should help create the necessary framework to ensure that those with autism will continue to receive the type of supports they need, regardless of who forms government.
5. What are the priorities, and how do we get there?
Ultimately, I think the spirit of a National Autism Strategy should have 3 main goals:
- Ensure autistics have the support they need across their lifespan.
- Ensure that same level of support is universally available across the country, meeting an agreed-upon standard of care.
- Strive towards a more inclusive and accessible society for autistics.
Based on the the various submissions through the years, the three most common elements seem to include:
- Employment
- Housing
- Therapy Funding
Some of the other financial elements like RDSP considerations, DTC eligibility, etc, could easily be folded into a NAS.
I also agree that some form of a knowledge exchange system should be included to ensure best-practices are shared and easier to be followed country-wide. This includes continued research to develop those standards of care and further enhance the quality of support given.
What I’ve listed here is by no means the final say. The NAS is what we as a community choose to make it.
At the heart of all pieces of a strategy, accessibility and inclusion should be a constant focus.
Not every autistic person will need every piece of the strategy, but if done right, every autistic person will benefit from the strides made.
With a government mandate to create a National Autism Strategy officially in the books, along with strong support from multiple political parties, it’s time to be hopeful about the possibilities.
Although there are solid suggestions for what could be included, and a great deal of common ground, there is still work to do.
Ministers Hajdu and Qualtrough have been tasked with making this happen. By looking at the suggestions out there so far, these ministers can start to gather an inter-ministerial team of the necessary players, then move to a consultation phase as soon as possible.
It’s time for:
- Collaboration between ministries
- Collaboration between parties
- Collaboration with the autistic community
The path to a National Autism Strategy has been long, but it’s finally moving into the home stretch.
Thank you to everyone that has helped advance this movement.
Thank you to everyone who have given their time, passion, expertise, and drive to the cause.
The autistic community, like all Canadians, deserve equal opportunity to be part of the fabric of our collective society, no matter where they live in this beautiful country.
They deserve inclusion, accessibility, and support.
Let’s come together and create a plan to make that happen.
