Throughout the COVID-19 pandemic we have been working with our member organisations around the globe to develop self-advocacy in their countries.

We believe that people with Down syndrome should be empowered to speak up for their rights to equal access to information, health care and support during and beyond the COVID-19 pandemic.

Simon has been working with our member organisations in Kenya, Nigeria, Rwanda and Uganda and shares some of the highlights from the self-advocacy taking place in those countries.


The self-advocacy group visited the Nigerian Institute of Medical Research (NIMR) to advocate for free COVID-19 testing for people with intellectual disabilities. This was a success and the institute agreed to offer free testing for people with intellectual disabilities and their caregivers. In addition to this the NIMR delivered training to people with Down syndrome and their families about COVID-19 and the vaccine including the effects and benefits for people with Down syndrome.

Self-advocates visited the local Government Chairman of Ifako-Ijaiye to advocate for free face masks, hand sanitiser and a mechanical hand wash machine as well as free vaccines for people with Down syndrome. The Chairman agreed and is using Down Syndrome Foundation Nigeria to distribute these items.

Self-advocates visited the Kings Seed School in Iju Fagba to speak about inclusion. The self-advocates invited the school to participate in their 'Ring The Bell' campaign to raise awareness of the need to include people with disabilities.


Self-advocates spent time talking about their general wellbeing both at home and in the community. This helped the self-advocates to build their confidence to speak up, to express their views and to get their point across. The self-advocates learnt that their contribution matters and has the power to impact their lives and those around them.


Self-advocates met with staff from Rwanda Biomedical Center (RBC) to experience testing for COVID-19. RBC offered to deliver training to the group about COVID-19 and the vaccine so that they could make informed decisions.


Down Syndrome Society of Kenya worked with self-advocates to produce easy read materials to explain social distancing, hand washing and mask wearing with simple illustrations. These were distributed to people with Down syndrome and their families using WhatsApp.

All of these activities were organised in compliance with local restrictions. 

The self-advocates in all 4 countries have made fantastic progress for people with Down syndrome in their country and have gained valuable confidence and skills to continue with self-advocacy activities in the future.

Learn more about self-advocacy and read our easy-read self-advocacy guide: