Is the National Dementia Strategy a model for what to expect from the National Autism Strategy?
Preliminary work on the National Autism Strategy (NAS) may already be underway, and there are some interesting parallels worth looking into with the National Dementia Strategy (released in 2019), as it could give us some insight into what to expect going forward.
I have confirmation that the government body responsible for putting together the NAS is the Public Health Agency of Canada (PHAC).
PHAC is part of the Health Portfolio, which also consists of: Health Canada, Canadian Institutes of Health Research (CIHR), Patented Medicine Prices Review Board (PMPRB), and the Canadian Food Inspection Agency (CFIA).
From an email response I received from the agency:
“The Public Health Agency of Canada is committed to working collaboratively with provinces, territories, families and stakeholders toward the creation of a national autism strategy.”
Important to know is that PHAC was also the government agency behind the National Dementia Strategy (NDS), so let’s take a look at the timeline of how that strategy came to be.
June 2017
Bill C-233, “An Act respecting a national strategy for Alzheimer’s disease and other dementias” (sponsored by former CPC MP Rob Nicholson as a private member’s bill) received its Royal Assent in June 2017. It had its first reading back in February 2016.
Its direction was to develop and implement a National Alzheimer’s/Dementia Strategy. The bill listed some areas of focus, then called for:
“a conference of representatives from provincial and territorial governments responsible for public health, basic and clinical researchers, family caregivers, health care professionals and other care providers, people suffering from dementia as well as representatives from the lay advocacy sector, the Alzheimer Society of Canada, other Alzheimer advocacy groups, and other dementia advocacy groups, for the purpose of developing the national strategy”
as well the formation of an Advisory Board to:
“advise the Minister on any matter related to the health care of persons living with Alzheimer’s disease or other forms of dementia.”
They suggested the board be no more than 15 people, be unpaid, and have representatives from the government, advocacy groups, health care professionals, people living with dementia, as well as caregivers.
November 2017
Prior to announcing the eventual formation of the Advisory Board:
“… a federal Interdepartmental Committee on Dementia was established to inform, engage and gather input from across federal government organizations whose initiatives are relevant to dementia. The Committee ensures that the federal contribution to the strategy takes a whole-of- government approach. The Act [Bill C-233] calls on the Government to address the challenges of dementia in collaboration with provinces and territories. As a result, the Public Health Agency of Canada established the Federal/Provincial/Territorial Coordinating Committee on Dementia in December 2017. The Committee meets monthly and provides a forum to share best practices and discuss issues related to dementia. Broad engagement captured diverse perspectives and, along with evidence-informed analysis and information, helped to shape the strategy.”
December 2017
As per the recommendations of the dementia bill, the Ministry of Health announced they were going to hold a national conference to inform the NDS in spring 2018, as well as name an Advisory Board to help guide the work.
May 2018
The advisory board was named by then Health Minister Ginette Petitpas Taylor at the National Dementia Conference that was held on May 14–15th in Ottawa
“… bringing together a broad range of stakeholder groups and partners from across the country to help inform a national dementia strategy.”
“Careful consideration was given to establishing an Advisory Board with diverse membership that would contribute a wide-range of perspectives and advice on the health needs of people living with dementia. The Board is comprised of individuals living with dementia, caregivers, researchers, advocacy groups, and health care professionals.”
An official Conference Report was put together to summarize the discussions that were had at the meetings.
June 2017-Jan 2019
In addition to the primary conference, four roundtables were held by the Alzheimer’s Society of Canada, taking place in Vancouver, Montreal, Fredericton, and Saint John “focused on the experience of people living with dementia and their caregivers.”
“Two additional roundtables in Toronto were facilitated by the Weston Brain Institute and the Centre for Aging and Brain Health Innovation (CABHI) and were focused on research and innovation. Roundtable participants shared what living well with dementia should look like; what solutions could be implemented to break through existing barriers; priorities for dementia research and innovation; and how innovation can best support living well with dementia.”
Reports with additional recommendations were also sent in from individuals and other organizations, and PHAC actively sought out many indigenous groups to get their input as well.
March 2019
When Budget 2019 came out, it included funding allocated to PHAC for the NDS.
“Budget 2019 proposes to provide the Public Health Agency of Canada with $50 million over five years, starting in 2019 – 20, to support the implementation of Canada’s first National Dementia Strategy.”
April 2019
Prior to the release of the official NDS, PHAC put out the following report:
‘What We Heard Report: Informing a Dementia Strategy for Canada’
Autism and dementia may be very different conditions, but many of the needed supports, and the conversations surrounding them, are strikingly similar.
“Conference and roundtable participants called for a Canadian dementia strategy that puts people living with dementia and their family and friend caregivers at its core. They told us that it is possible to live well and achieve quality of life at all stages of dementia through compassionate diagnosis, connection to support systems, increased awareness of dementia among all Canadians and reduced financial hardship for those living with dementia and their caregivers.”
Sounds pretty applicable to autism, doesn’t it?
“We heard that equitable access to diagnosis, treatment, support and care across the country is not always available. Those in rural and remote communities as well as Indigenous peoples were highlighted as being most often impacted by differences in the level of care available.”
Seriously, PHAC could almost just change the word dementia to autism in this document and have a pretty good starting point for the NAS.
“Canadians want a dementia strategy that puts the quality of life of people with dementia and their family/friend caregivers at the forefront; where person-centred, compassionate, integrated care is provided with equity across the country, and the rights of people living with dementia are respected.”
June 2019
The official National Dementia Strategy was released a couple months after the summary report came out.
For a quick summary, here are the 5 pillars, and 5 principles of the NDS:
Overall, it appeared to be well-received as a good first step, but the common complaint was that the NDS was underfunded if it was going to actually accomplish what it set out to do.
“The Alzheimer Society of Canada has requested an investment of $30 million – annually – over a period of five years to implement the national dementia strategy. This recommendation was supported by HEAL, a coalition of over 40 health professional organizations and charities, as well as the Senate Committee on Social Affairs, Science and Technology in a November 2016 report on dementia-friendly communities.”
From Alzheimer Society of Canada CEO Pauline Tardif:
“It will be important for us to keep our pedal to the metal and ensure that this government and future governments understand that, to really have an impact, it needs to be fully funded and a successful implementation plan needs to accompany it.”
So what does this all mean for a National Autism Strategy?
Knowing that the NAS is in the hands of PHAC should help set some minds at ease.
This agency literally just finished putting together a national strategy for a neurological condition. They just need to do it again.
PHAC will know what worked well with the NDS development, and what didn’t. Creating the NAS shouldn’t come with too steep a learning curve for them.
A big difference between the two strategies is the starting point.
The NDS began as private member’s bill. Fortunately, it passed, and the resulting Act gave some guiding principles, as well as an early plan of action (hold a conference, name an advisory board, etc). It took 2 years from the passing of the bill to the release of the official strategy document.
The instruction to develop and implement a NAS was instead put directly into the official mandate letter of the Minister of Health by the PM. This gave it a big kickstart, but much less detail on how to proceed. How quickly they can move from start to finish is TBD.
I think it’s pretty likely that PHAC will follow a similar formula to what they used for the NDS:
- Secure funding for PHAC in the federal budget to start working on the NAS (hopefully as soon as possible)
- Assemble an Advisory Board to guide the process
- Arrange for broad consultation with the autism community (conferences, roundtables, encourage submissions from organizations/individuals, etc)
- Summarize the findings
- Build the Strategy
- Create an Action Plan to ensure ongoing progress on implementation
If PHAC is smart, they’ll take full advantage of the CASDA Autism Leadership Summit coming up in April 2020:
This summit would be a great way for PHAC to kickstart the NAS development, and make use of this gathering of autism experts to hit the ground running.
From my correspondence with PHAC:
“When the timelines for the consultation process are determined, we will establish multiple avenues for parents and caregivers of children with ASD to have their views and opinions heard.”
Canada won’t have a fully realized National Autism Strategy tomorrow, but we can absolutely start making strides in the right direction. We have unprecedented guidance on the likely process.
Looking to the recent past, and the development process of the National Dementia Strategy, it seems we have a reasonable idea of what to expect.
