People with intellectual disabilities often struggle to access and understand health information, leading to poorer health, more hospital visits, and higher mortality. Yet they are still frequently excluded from public health messaging across Europe. Milan Šveřepa, Chief Executive of Inclusion Europe, discusses.
Public health messages, prevention campaigns, and information about treatment are often written in a technical language that’s hard to understand and even harder to act on.
For many people with intellectual disabilities - defined as a reduced ability to understand and apply new or complex information, which affects independent funtioning and begins before adulthood - creates a basic barrier to care. It means not being given the means or support to make informed decisions about their own health and treatment.
In some cases, care is provided without consent because of assumptions about capacity. In others, care is not provided at all for the same reason.
These are not abstract policy issues or familiar NGO talking points. They are failures in how healthcare systems operate, with real and sometimes deadly consequences. Adults with a learning disability die on average 19.5 years younger than the general population, finds NHS England’s Learning from lives and deaths – people with a learning disability and autistic people (LeDeR) report. “Nearly 60% of adults with a learning disability who had a LeDeR review died before the age of 65. Although, avoidable deaths have declined since 2021, the rate for adults with a learning disability who died in 2023 is still nearly double the rate compared to the general population.
Access to healthcare is crucial for everyone, but for people with intellectual disabilities, it is negatively shaped by a set of persistent and overlapping barriers.
Inaccessible health information
Public health messages, prevention campaigns, information about treatments, all of it, needs to be understandable and clear, so that people can act on what they receive. That means easy-to-read formats: clear words, short sentences, helpful visuals. But it also means accessible ways of reaching people and to be reached in return. What good is an easy-to-read leaflet if the contact website or phone number are impossible to use, or if staff are unhelpful?
A 2026 scoping review confirmed what people in our network have long experienced - that the main barriers to healthcare for people with intellectual disabilities include:
- inaccessible health information
- low health literacy
- stigma and discrimination from healthcare providers
- a lack of training and organisational support across both health and care systems
As with everything easy-to-read, getting this right would benefit everyone, not just people with intellectual disabilities. Clear, non-technical language in healthcare improves understanding and leads to better health outcomes. As the World Health Organization (WHO) puts it “[health literacy] is critical to transforming health systems to provide quality, people-centred, and equitable care.”
But communication is not only about making information easier to understand. It is also about ensuring that people are heard, believed and taken seriously when they describe their symptoms.
Diagnostic overshadowing
Diagnostic overshadowing happens when health professionals assume a person’s symptoms are simply part of their intellectual disability, instead of recognising them as a separate condition that needs treatment. It’s a dangerous mistake, and it happens because staff often lack the training needed to communicate with, listen to, and properly understand people with intellectual disabilities.
Disregard for a person’s choices and autonomy
The communication problem doesnt just mean printed words, and it isnt limited to leaflets in waiting rooms.
Inside the consultation room, people with intellectual disabilities often face another kind of exclusion, with medical staff speaking to whoever accompanies them rather than directly to them. Its disrespectful, but it can be fixed with proper training.
As bad as that is, at least some communication still happens. In many cases, people with intellectual disabilities are subjected to procedures without any explanation at all. Consent is sought from a legal guardian without ever consulting the person themselves. But having a legal guardian doesnt mean someone cannot or should not be informed about their healthcare. They still deserve a proper explanation of what is happening and why. A guardian’s role is to ensure that person’s wishes and preferences are taken into account when decisions are made.
“She’s lost her other leg now too” isnt something you expect to hear after someone slips in a bathroom. But thats exactly what happened many years ago in one of the institutions I came across. A woman fell, was taken to hospital, and her leg was amputated.
Why bother treating her properly? Why wait for her to say anything at all?
This anecdote may shock you, but sadly, it is not an isolated case. It reflects a societal undertone of dismissal. For decades, people with intellectual disabilities have been spoken about rather than spoken to, with pre-emptive decisions made on their behalf.
In 2026, research continues to show that people with intellectual disabilities still experience worse health outcomes than almost every other group in society.
This gap is not solely clinical; it is also communicative. When healthcare systems fail to adapt, fail to listen, fail to understand, the consequences can be life-changing-or, in some cases, life ending.
Forced sterilisation
In a recent Inclusion Europe report, sexual and reproductive health is especially neglected. Women with intellectual disabilities are often stigmatised and seen as asexual or unfit to become parents. Because of this, they do not get proper education about their rights, relationships, or how to protect themselves from pregnancy or sexually transmitted diseases. In many cases, they are pressured or forced to take contraception, have abortions, or undergo sterilisation – without their consent.
In 2024, only 9 countries in the European Union criminalised sterilisation, while 13 countries still allowed it to be performed on women with disabilities, and in 3 of them also on minors. This is a serious violation of their human rights. Since then, only one country has reformed its legislation.
Systemic neglect
None of this is marginal. It is what happens when an entire group of people are systematically excluded from health education, from informed consent, and from the basic assumption that their bodies belong to them.
As emergencies do, the COVID-19 pandemic brought all of this into sharp focus. It magnified the segregation and discrimination of people with intellectual disabilities – from the near-absence of accessible information (with notable exceptions, mostly produced by organisations of people with disabilities themselves), to outright refusal to treat people with intellectual disabilities, to the reckless practice of releasing ill patients back into residential institutions.
None of this is inevitable. People in most countries report reasonable access to general healthcare. There are initiatives to improve training for healthcare staff, and there are examples of good, accessible information being produced.
There is plenty to build on, but building on it requires acknowledging what is going wrong.
But this neglect also affects the caregivers too.
Neglecting family members’ health
The impact of caregiving responsibilities also extends to parents themselves. Parents and siblings of people with intellectual disabilities face serious health consequences of their own – the result of inadequate support, and of having little time or energy left to attend to their own wellbeing.
Research shows that parents of children with disabilities face physical challenges including fatigue, musculoskeletal pain and disrupted sleep, as well as significant emotional strain: depression, anxiety, and feelings of hopelessness. Social isolation and stigma compound all of this further.
Healthcare cannot function as a reward for those who can navigate complex systems. It needs information, services, and support that make it accessible to everyone.
As Sesili Ghvinjilia, a self-advocate from Georgia, puts it: “We don’t ask for more than others – we only ask for what is ours. The right to health is the right to life.”
In focus
- Make health information clear and usable – use plain language, short sentences, and accessible formats across all channels.
- Speak directly to the person – include people with intellectual disabilities in all communication and decisions about their care.
- Support real consent and autonomy – provide accessible explanations and ensure choices are understood and respected.
- Train staff to avoid diagnostic overshadowing – recognise symptoms properly and challenge stigma in clinical practice.
- Build accessible health systems – embed inclusion into services, not just information, to ensure equal access to care.
More info
Learn more about healthcare experiences of people with intellectual disabilities on Inclusion Europe’s website.
