September 11, 2025
By Yona Lunsky
September is a big month of transitions. It is the start of a new school year and the end of summer vacation. It is time for fall sweaters, as the days grow colder and darker, and the leaves fall from the trees in preparation for winter.
But the change of seasons happens every year, and it is something expected that I can prepare for. Other endings are harder to cope with, especially when they are unjust or unexpected.
Content warning: In this blog, I write about death and people with developmental disabilities, and what we can and must learn from them.
Last week saw the release of the 2023 Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) Report, which investigates deaths in UK adults with a learning disability. Funded by NHS England and NHS Improvement, the LeDeR programme was established in 2017 to improve healthcare for people with a learning disability and autistic people. (Note that in the UK, people prefer the term “learning disability” to the term “intellectual disability,” but it is the same group).
The report is presented in multiple formats. For people interested in knowledge translation, take note:
I encourage anyone interested in this topic, or in ways to share complex information, to review these resources in more detail. Here, I will briefly summarize some key findings.
As in previous years, people with intellectual disabilities died about 20 years younger than other adults. The most common causes of death were lung infections, cancers, and heart problems. As noted by Amanda in the Easy Read Summary, “It is unfair that people with learning disabilities don’t live as long as people who do not have a learning disability. We want to live longer and enjoy our lives.”
On the bright side (is there always a bright side, and why do we say that?), the percentage of avoidable deaths decreased from 46% in 2021 to 39% in 2023. Still, this is almost twice as common as avoidable deaths in the general population. As Andrew commented in the Easy Read Summary, “Lots of people can easily miss symptoms. It could turn a treatable disease into a terminal disease in a blink of an eye.”
This year’s report also found that people from Black, Asian, or mixed backgrounds died even younger, as did people with severe and profound disabilities. There were also analyses for the first time focused on deaths of autistic people without intellectual disabilities—thinking about mental health care for them is clearly important.
These patterns of premature and avoidable deaths are not unique to the UK. Research from the H-CARDD program and studies in other parts of the world show similar disparities.