OPD health equity advocacy training
About this project.
We are working with Humanity & inclusion to develop a training programme to help Organisations of Persons with Disabilities (OPDs) advocate for health equity for people with intellectual disabilities.
This project runs from 2025–2026 and is funded by the Ministry for Foreign Affairs of Finland, as part of the International Disability Alliance’s “Upholding diversity and inclusion of all” programme.
Why we are doing this project
People with intellectual disabilities often get worse healthcare than other people.
People with Down syndrome live 20 years less, on average, than other people.
During COVID-19, people with intellectual disabilities were much more likely to die.
DSi and Humanity & Inclusion’s Our Say in Our Health report found that many people cannot get healthcare information they understand, and many cannot afford the healthcare they need. Often, people with intellectual disabilities are left out of decisions about their own healthcare.
A big reason for this is that people with intellectual disabilities, and their organisations, are not included when health systems are planned and run. We believe OPDs need the skills and confidence to change this.
This project contributes to our work on the issue of health equity.
What we are doing
We are making an accessible training curriculum on health equity advocacy, that can work online and in-person. The training will help OPDs understand how health systems work, build partnerships, and use evidence to push for change. We will train our member organisations but also publish the curriculum so other organisations can use it.
We tested the training in 2025 with five of our member organisations in Africa, from Kenya, Nigeria, South Africa, Tanzania and Uganda. In 2026, we are supporting these OPDs to use their new skills to do health advocacy in their countries.
We will then use their experiences and feedback to revise and improve the training, ready to be published at the end of 2026.
Six months on
In December, five Organisations of Persons with Disabilities from Kenya, Nigeria, South Africa, Tanzania and Uganda completed our health equity advocacy training.
We caught up with them all in June to hear what’s happened since.
Kenya: shaping national policy
The Down Syndrome Society of Kenya is engaging directly with government as the country works to operationalise its National Disability Act 2025 – pushing for disability-inclusive health data and more research into conditions affecting people with Down syndrome.
Nigeria: working with health authorities on free healthcare
The Down Syndrome Foundation Nigeria has been in dialogue with the Ministry of Health in Lagos to encourage free and subsidised healthcare, using press conferences and social media to put self-advocates’ voices front and centre.
South Africa: reaching health professionals directly
For World Down Syndrome Day in March, Down Syndrome South Africa ran a health symposium with a day dedicated to health professionals – bringing the priorities of people with Down syndrome straight into clinical spaces.
Tanzania: a signed agreement with government
Down Syndrome Tanzania signed a renewed Memorandum of Understanding with the Ministry of Health in May – securing government support to advocate for people with Down syndrome to be included in universal health insurance.
Uganda: connecting communities to health services
Inclusion Uganda has built health into all its work, including training Village Health Teams so they know how to better support people with intellectual disabilities, and helping self-advocates understand their patient rights.
What's next
Over the rest of 2026, these five organisations will continue their advocacy work. We’ll revise and test the training further, gather their feedback on how useful it’s been for their advocacy, and make final revisions ready to publish the training by the end of the year.