LeDeR: children’s health and care cannot wait for reform
2 mins read
Tuesday 21 July 2026
People with learning disabilities are far more likely to die prematurely from preventable illnesses such as respiratory and heart disease, according to the latest LeDeR findings.
On average, people with a learning disability die at 62.8 years, compared with 81.8 years in the general population. That’s a 19‑year gap. People with Down syndrome had an average lifespan of 59.8 years and high rates of dementia.
The King’s College Learning from Lives and Deaths study reported that around half of all deaths in people with learning disabilities were from treatable conditions, including respiratory infections, epilepsy and heart disease.
Suicide, misadventure and accidents were the most common causes of premature death for autistic people without a learning disability. However, this data is less reliable due to under‑reporting. Avoidable deaths fell slightly in the last three years from 46% to 39%. But the rates are almost twice those seen in the general population.
A reminder that timely, accessible healthcare is vital
Contact’s health lead Amanda Elliot said the annual LeDeR report was always a deeply distressing read, but also a reminder that timely, accessible healthcare is vital to ensure people with learning disabilities and autistic people live long and healthy lives:
“Families shouldn’t have to fight for basic healthcare. Yet too many disabled children grow up in a system that fails to spot problems early enough, fails to listen to parents, and rarely makes the reasonable adjustments they’re legally entitled to. The life‑expectancy gap is unacceptable, and it starts with the care children receive today.”
Our FOI inquiry into children’s continuing care found very medically complex children faced a post code lottery of care. More than half were rejected for vital NHS-funded support to enable them to live safely at home.
Contact’s recent research in the North West found that disabled and neurodivergent children and their families faced significant barriers trying to access healthcare.
Our campaigns
Contact is campaigning for:
- Better continuing care support for children with complex medical needs.
- Urgent reform of disabled children’s social care law.
- Stronger accountability in health, so every child gets the support and interventions they need to live a long, healthy life.
The Government plans to replace LeDeR with a new national dataset covering autism, ADHD, learning disability and Down syndrome.
Contact will monitor this to ensure children’s needs are properly captured and accountability for tackling health inequalities is not lost.