Advocating for the Rights of Canadians with Down Syndrome
Over 22,000 people with Down syndrome are living in Canada — a thriving community with growing needs, especially in adulthood. We now have this accurate population estimate thanks to a recent study lead by Dr. Brian Skotko which sought to fill a long-standing and critical gap in the data used to guide services and supports for individuals with Down syndrome.
Until now, the only population data available was an outdated and rough approximation put forth over 30 years ago. This new, much-needed research sheds light on our true population size and several other major shifts that will be critical for guiding future advocacy work in Canada.
Canadians Living with Down Syndrome (2020)
Babies Born with Down Syndrome Annually
Average Life Expectancy (Years)
What Have We Learned About the Down Syndrome Community?
- The population is aging with 30% of Canadians with Down syndrome aged 40+. (In 1950, only 1% of the population reached 40 years of age).
- The average life expectancy has risen dramatically, from 4 years in 1950 to 59 years in 2020.
- Down syndrome is no longer just a childhood condition; the focus needs to shift to include full-life cycle support.
- Although the population is growing at a slower rate, that doesn’t make support less urgent.
Real Numbers Lead to Real Action
Real numbers lead to real action in healthcare, housing, aging supports, and disability policy. This new data will be used to improve advocacy efforts at CDSS and across the country by:
- Targeting programs more effectively, especially for adults and seniors.
- Advocating for policy change with up-to-date numbers, including inclusive housing, education, employment supports, and the Canada Disability Benefit.
- Guiding partners and funders to better understand the needs of our community.
- Correcting public assumptions and showing that Down syndrome is not just a pediatrics issue – people are living longer, fuller lives.
We are working towards a Canada that counts every person and every voice. You can help make this possible and show your support with a donation today. Every gift helps us reach another person who deserves access to basic rights.
Community Q&A
2025 Population and Births Study
Where did the original estimate of 45,000 Canadians with Down syndrome come from?
The old “45,000 people with Down syndrome in Canada” figure was never accurate, it was based on rough guesses from outdated birth rates in the 1950s–60s (when there were about 800 births a year) and unrealistic survival assumptions. Birth rates dropped to 400–500 a year by the mid-1970s, and while potential births have risen again in recent decades, selective terminations mean actual births remain around 400–500 annually. New research now provides much more accurate, evidence-based estimates.
How was the population number calculated if there is no national registry?
The researchers used a demographic modeling approach drawing on Canadian birth data, maternal age trends, and known survival rates for people with Down syndrome. It’s a method validated in other countries like the U.S., U.K., and Australia. It gives us the best available estimate in the absence of official tracking.
Does this mean fewer people with Down syndrome are being born?
Yes, partly. Advances in prenatal screening and access to termination have reduced the number of live births. In 2020, Canada had 54% fewer births of babies with Down syndrome than might have occurred without screening. But about 400 babies are still born each year and each deserves full support from birth onward.
Should we be concerned about a shrinking population?
Not shrinking, but changing. The population is still growing, just more slowly. Our focus now needs to shift toward lifelong support because more people with Down syndrome are living into their 50s, 60s, and beyond.
How should this data influence public policy?
It should guide how we plan services especially for adults. We need housing, employment opportunities, healthcare access, and programs like the Canada Disability Benefit that reflect this evolving population.
What should health systems be doing differently in response to this data?
Planning ahead. The system still treats Down syndrome as a pediatric issue but 30% of the population is now over 40. That means we need adult care pathways, dementia supports, inclusive housing strategies, and employment programs tailored to adults with intellectual disabilities.
How does the Canada Disability Benefit tie into this data?
This new data strengthens the case. Knowing how many people need support and their age profiles helps design fairer, more effective policies. The Canada Disability Benefit must reach people with intellectual disabilities, including adults with Down syndrome, who often fall through the cracks.
Advocacy in Action
Canada Disability Benefit FAQs | September 2025
The Canada Disability Benefit (CDB) is a federal benefit for working-age people with disabilities living on a low income. The benefit aims to address the disproportionate level of poverty experienced by people with disabilities. The maximum benefit amount is $2,400 a year, or $200 a month, and applications opened on June 20, 2025. We’ve compiled some of the most common questions about the Canada Disability Benefit that may be useful for you and your family.
Mind The Gap: Closing the Care Divide for Canadians with Dementia | August 2025
Stop Alberta’s AISH Clawback: A Message from Paul Sawka| July 2025
Applications for the Canada Disability Benefit Now Open | June 2025
If you or someone you love wants to apply for the Canada Disability Benefit, here’s what you need to know:
- Make sure that you meet the eligibility criteria listed online.
- You will need your Social Insurance Number for the application.
- If you have been approved for the Disability Tax Credit and meet most of the eligibility criteria, you will receive a letter with a unique application code and instructions on how to apply.
- If you do not receive a letter, you can still apply. You will need your mailing address and information from your 2024 tax assessment.
Starting on June 20, applications will be accepted through an online portal, over the phone, and in person at a Service Canada Centre.
Ontario Says No to Canada Disability Benefit Clawbacks | May 2025
The province has confirmed it intends to exempt the Canada Disability Benefit as income so that recipients of provincial benefits such as ODSP, Ontario Works, and ACSD will be eligible to receive the new benefit without seeing reductions in their existing provincial supports. This is how the Canada Disability Benefit was meant to work -adding to financial security, not replacing what’s already there. Let’s continue to speak up together for the financial stability of Canadians with disabilities.
Alberta is Clawing Back $49 Million From People with Disabilities | March 2025
The Alberta government has confirmed that it will claw back the Canada Disability Benefit dollar-for-dollar from AISH recipients. That’s $2,400 per person per year—taken away.
This benefit was meant to be an add-on, to improve financial security for people with disabilities, not replace existing supports. Alberta is using the CDB to justify cutting $49 million from provincial disability benefits—moving backward instead of strengthening the systems people rely on.
New Report on Inclusive Education in Ontario | April 2025
It Was Never Okay
Key Advocacy Issues in Canada
Unfair barriers, inadequate funding, and exclusionary practices limit access to education, healthcare, employment, housing, and recreation. Now in 2025, government decisions threaten to undo the progress our community has worked tirelessly to achieve.
But we refuse to go backward.
This past World Down Syndrome Day, we asked all Canadians to join our call to ImproveOurSupports and sign our petition demanding the government prioritize the rights of Canadians with Down syndrome. Over 3,200 people signed in solidarity with our community.
This petition for the federal government called for the following key advocacy issues in Canada to be addressed immediately:
Decreased support in the classroom leads to exclusion and missed learning experiences for students with Down syndrome.
Call on the government to co-design a new funding model for provinces to increase classroom support for students with Down syndrome.
A lack of specialized research and training for healthcare professionals in Canada limits the quality of care that people with Down syndrome receive.
Call on the government to launch a national initiative to expand specialized training and research for healthcare professionals working with individuals with Down syndrome.
Outdated perceptions and restrictive government benefit policies create barriers to sustainable and paid employment for people with Down syndrome.
Call on the government to implement a national strategy to protect people with Down syndrome from losing disability benefits when they seek work.
Outdated perceptions about independent living and financial challenges limit housing choices for people with Down syndrome.
Call on the government to establish a national housing benefit to allow individuals with Down syndrome to access living arrangements that support their independence.
Significant barriers prevent Canadians with Down syndrome of all ages from participating in everyday recreational activities.
Call on the government to create a Self-Advocate advisory council to increase participation for people with Down syndrome in sports, recreation, and the arts.
This petition was just the first step. CDSS is working with organizations, government officials, and individuals across Canada to improve support programs and impact policies that have the power to shape the future of the Down syndrome community.
It’s time for action, not excuses.
Donate today if you believe people with Down syndrome deserve access to the same rights as everyone else.
Together, we can create a future where everyone belongs and thrives.