Our Say in Our Health: Global Report on Health Equity for People with Intellectual Disabilities

Discover results from our global consultation about health equity for people with intellectual disabilities, and explore how we can create a fairer world.

A 13-year old Nepalese girl with an intellectual disability and her family

Phirta Badayak, 13, has an intellectual disability and lives in Nepal. Un-inclusive services have affected her wellbeing and relationship with her family. | © Brice Blondel/HI

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.

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.

In partnership with

Areas of Action

Health

Inclusion

Disability rights

Download the report materials

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

Full report (English)

(PDF, 2.55 MB)

Full report (Spanish)

(PDF, 2.66 MB)

Summary (English)

(PDF, 29.2 MB)

Summary (Spanish)

(PDF, 30.2 MB)

Appendices (English)

(PDF, 508.08 KB)

Social media toolkit

(PDF, 1.07 MB)

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.

'Health care providers are not well informed or educated about this condition, so very few are able to communicate well with persons with down syndrome a lot of stereotypes [are] often shown during communication.' – Female support person for a woman aged 25-34 with Down syndrome from Zimbabwe

Jair Alarcón, 2, has cerebral palsy. He and his family live in Calamarca, a small village in the Bolivian Altiplano. Healthcare services remain far away, making it difficult for the family to access.

Jair Alarcón, 1, has cerebral palsy. He and his family live in a small village in the Bolivian Altiplano. Healthcare services remain far away, making it difficult for the family to access.

In Bolivia, HI is helping improve the acceptability of health services. Here, a man with an intellectual disability is supported during a session.

Improving the acceptability of health services involves training healthcare workers. Here, a man with an intellectual disability is supported during a session.

A child with Down syndrome in Sri Lanka receives rehabilitation support.

Focussing on inclusion is vital, particularly in areas with little availability of care. Here a child with Down syndrome in Sri Lanka receives support.

Our vision for an inclusive future

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. This includes:

Rights-based laws and policies aligned with the UNCRPD
Meaningful participation of Organisations of Persons with Disabilities (OPDs) in health system governance
Inclusive training for health workers, delivered in part by self-advocates
Accessible health information and better use of disability data
Affordable care, assistive technologies, and digital health tools

Three priority areas for investment

1. Invest in OPD leadership for systemic change

OPDs, including self-advocates and family networks, must be resourced and supported to engage meaningfully in all aspects of health system governance. This includes long-term investment in their technical and organisational capacity to influence policy, budgeting, service design, and accountability processes.

2. Equip health systems with inclusive tools and guidance

Health systems reqHuire co-developed tools, standards, and training that reflect the needs of people with intellectual disabilities and support inclusive, rights-based care. This includes accessible information, adapted consent processes, inclusive communication, and guidance for institutions to assess and improve practices, ensuring OPDs are supported to monitor progress.

3. Share and scale inclusive practices globally

Promising inclusive health practices remain fragmented and underused. Global efforts must prioritise documenting what works, strengthening the evidence base, and creating platforms for OPDs to lead knowledge exchange and influence policy. Improved data collection and commitment to scaling rights-based, context-appropriate solutions are essential to closing equity gaps.

Advocacy

Discover self-advocates explaining the results of this report at the Global Disability Summit 2025 and supporters sharing lived experiences of health services in focus group discussions around the world.