Global Report on Health Equity for People with Intellectual Disabilities

Discover results from our global consultation about health equitites with people with intellectual disabilities, and explore how we can address them.

Summary

People with intellectual disabilities face some of the starkest health inequities in the world today. These inequities are systemic and widespread, resulting in poorer health, reduced life expectancy, and frequent denial of the right to health.

To better understand and address these challenges, in partnership with Down Syndrome International, Humanity & Inclusion conducted a global consultation in 2024 involving over 750 people (including 136 people with Down syndrome and intellectual disabilities, their families and support persons) and 118 organisations (including nearly 50 organisations of persons with disabilities) from more than 100 countries.

The consultation aimed to fill key gaps in the global evidence base, particularly around the real-life experiences of people with Down syndrome and other intellectual disabilities when accessing healthcare. The report analyses barriers and proposes a roadmap for more inclusive health systems.

In partnership with

Areas of Action

Health

Inclusion

Download the report materials

Cover of the Our Say in Our Health Report on Health Equity for People with Intellectual Disabilities

Full report (English)

Full report (Spanish)

Accessible summary (English)

Accessible summary (Spanish)

Appendices (English)

Key Findings

Availability of Health Services

Both general and disability-specific health services are frequently unavailable, especially beyond childhood and in low- and middle-income countries. Services often drop off sharply after age 18, with older people facing significant care gaps.

‘Services for speech therapy [are] almost not existent.’ – Family member of a boy aged 13-17 with Down syndrome from Rwanda

‘We found as soon as she turned 18, there are no services available. It’s disgraceful!’ – Family member of a woman with Down syndrome aged 18-24 from Ireland
Access for All

Access to healthcare remains deeply unequal. Many face financial, physical, and communication barriers, with accessible information still rare. Costs, particularly for specialist services like speech therapy or transport, often prevent people from seeking care.

‘The total estimated cost of [cardiac treatment] with.. travel [to India] is 15,000 USD. For us to get this amount of money is unthinkable.’ – Father of a child with Down syndrome from Ethiopia
Acceptability

Discrimination and disrespect in healthcare settings are common. Many respondents reported being ignored, mistreated, or excluded from decisions. Informed consent and autonomy are often not respected, particularly for younger and older adults.

‘Doctors don’t listen to me or my support person, they just go ahead and try to do things, or they make assumptions that I will not cooperate and then they try to restrain me, or they don’t give pain medication or anaesthetic because they say people who have Down syndrome don’t feel pain.’ – Woman aged 25-34 years old with Down syndrome from Canada
Quality of Care

Only a quarter of respondents were satisfied with the care received. Misdiagnosis, long waiting times, and lack of reasonable accommodations were recurring issues. Many health professionals lack training in inclusive, rights-based care.

Inequities are not inevitable. They result from health systems that exclude people with intellectual disabilities from design, delivery, and decision-making. Core causes include the absence of organisations of persons with disabilities (OPDs) in health governance, the lack of inclusive tools and training, and insufficient data to make gaps in health access and outcomes visible. This report sets out a vision of inclusive healthcare systems where services are accessible, person-centred, and co-designed with people with intellectual disabilities and their representative organisations.

Good health is an essential part of a person's wellbeing and independence. Whether improving access to local health services, working to prevent the causes of disability, or providing psychological support to the survivors of violence and war, all HI's actions serve one purpose: to ensure that everyone, including disabled people, has equal access to information, health services and care.

Projects

Discover our innovative, exciting and impactful projects funded by UK donors.

Inclusive Futures

The Inclusive Futures initiative works to ensure all children and adults with disabilities have the same likelihood as everyone else to access quality education, health and work opportunities. It is addressing the global gap in evidence about what works, and what doesn’t, to deliver transformative change.