CW: Death
Getting older was never something that people with intellectual and developmental disabilities could take for granted. Instead, their lives were often cut short by the fact that the world around them didn’t really work for them, either because it didn’t understand them, or because it simply didn’t provide the most basic kinds of support. However, things are changing. Many are now living into their 60s and 70s. Their experiences show that while things are getting better, there’s still a huge gap between how things could be and how they actually are.
You can see this gap in stories like Mickey Wesley’s. He moved into the boys’ dormitory on the Hammer campus in Wayzata at age 11 in 1978. He was a kid who loved church, bowling, and fishing, and he grew up with a close group of caregivers who helped him discover the world.
Now at 58, Mickey’s needs have changed. He needs assistance with bathing, toileting, dressing, and other daily tasks. He relies on people who understand him well, can anticipate his needs, and can notice subtle changes in his health.
You see the other reality in the stark stats from the UK, where over 50% of adults with learning disabilities die before they’re 65. Yet these two things coexist: people living long lives and others who don’t make it past 65. Both of these realities are a wake-up call. It’s clear: disabled people are living longer, and the world is not equipped to meet their needs.
In England, The Learning Disabilities Mortality Review uncovered findings that cannot be ignored. More than 50% of the adults with learning disabilities died before the age of 65. This is three times higher than those without disabilities. Furthermore, people with learning disabilities die 20 years earlier on average than those who do not have learning disabilities.
Advocates have warned for years that disabled people are dying early because the systems meant to help them were never built with them in mind. These deaths are largely preventable.
Another part of the story is happening at the same time, one shaped by decades of advocacy and the everyday work of people who believe disabled people deserve not just care, but the chance to be part of a community. In the United States, people with IDD are living longer than ever before. In 1950, the average life expectancy for someone with IDD was about 66 years. By 2007, it had risen to around 78, thanks to advances in healthcare, public health, and social inclusion.
With this increase, families and providers are navigating new realities: chronic illness, mobility challenges, dementia, and the need for long‑term support that acknowledges the realities of both disability and aging.
The systems designed decades ago to provide lifelong support for individuals with disabilities are now required to change. They have no choice. As much as we have advanced, research shows that people with intellectual developmental disorders (IDD) still tend to live 16–20 years less compared to their non-disabled peers in the United States, Australia, Canada, and all countries that are members of the Organisation for Economic Co-operation and Development.
This requires more than awareness. It requires investments, accountability, and willingness to redesign systems and policies that did not initially include disabled adults. We need to listen to parents, direct support professionals, and adults living with such disabilities. They are well aware of what works and what does not work from their own experience. It is time to stop thinking about the early mortality of people with disabilities as something inevitable and accept it for what it is – a tragic inequality.
People with intellectual and developmental disabilities are getting older. They prove what can be achieved when people receive consistent care, and are able to be part of a community. The only question is whether our systems will be able to change in order to support a better quality of life for people instead of simply prolonging their lives.
Sources:
Landes, Scott D., et al. “Evidence of Continued Reduction in the Age-at-Death Disparity between Adults with and without Intellectual and/or Developmental Disabilities.” Journal of Applied Research in Intellectual Disabilities, vol. 34, no. 3, May 2021, pp. 916–20. https://doi.org/10.1111/jar.12840.
Landes, Scott D., et al. “Trends in Mortality of People with Intellectual and Developmental Disabilities in the United States.” Journal of Applied Research in Intellectual Disabilities, vol. 33, no. 3, 2020, pp. 345–55. https://doi.org/10.1111/jar.12682.
Reed, Jim. “Adults with Learning Disabilities Die 20 Years Early, Says Report.” BBC News, 2 Sept. 2025, http://www.bbc.com/news/articles/c939311dpn1o.
Reppermund, Simone, et al. “Factors Associated with Death in People with Intellectual Disability.” Journal of Applied Research in Intellectual Disabilities, vol. 33, no. 3, May 2020, pp. 420–29. https://doi.org/10.1111/jar.12684.
Walsh, James. “As People with Disabilities Live Longer, Twin Cities Facilities Rework Services.” Star Tribune, 28 Dec. 2025, https://www.startribune.com/as-people-with-disabilities-live-longer-twin-cities-facilities-face-more-demand-for-services/601543798.
Witherington, Erica, and Beth Rose. “Over Half of Adults with Learning Disabilities Do Not Live Past 65, Report Says.” BBC News, 13 July 2026, https://www.bbc.com/news/articles/cnv949z75jmo.
Worthington, Elise. “People with Intellectual Disabilities Twice as Likely to Suffer Preventable Death, Study Finds.” ABC News Australia, 8 Feb. 2017, http://www.abc.net.au/news/2017-02-08/study-finds-intellectually-disabled-two-times-preventable-death/8248772.