The COVID-19 pandemic had an impact on every person in the world. 

The impact on people with disabilities, particularly in the Global South, has been far greater as their needs were not always considered in the response.

This highlighted the need to "build back better" in a way that is fully inclusive of people with disabilities.

The International Disability Alliance (IDA) created the COVID-19 Pooled Fund which could be accessed by organisations to deliver advocacy projects. These projects should contribute to reducing the impact of COVID-19 on people with disabilities in the Global South.

We have been working with 5 of our member organisations to deliver COVID-19 advocacy projects.

Down Syndrome Foundation Albania (DSFA - Albania)

The problem: In Albania, information about the COVID-19 vaccine was not accessible. People with intellectual disabilities were uncertain if taking the vaccine was the right decision for them.

The solution: DSFA worked with an expert in producing easy-read materials to prepare a digital leaflet about the COVID-19 vaccination. This was shared with individuals and families of people with intellectual disabilities via social media and existing disability networks to support informed decisions about the vaccine.

The problem: The Albanian Government offered a financial support package to help with the increase in the cost of living during the crisis. This was not available to many people with disabilities or their families.

The solution: DSFA launched an online petition calling for financial aid for people with disabilities. The petition and official requests to the government were successful in securing funding.

DSFA went on to create an advocacy campaign showing the impact of the COVID-19 pandemic on people with disabilities. They showed how access to education, employment and services were affected for this vulnerable group. Advocacy videos featured people with disabilities alongside public figures, calling for the rights of people with disabilities to be realised. These videos were sent to politicians, members of parliament and the general population and were also shown on National TV.

Asociación Síndrome de Down de la República Argentina (ASDRA - Argentina)

The problem: "Down syndrome has been recognised since at least the 5th Century. However, to this day, the true numbers of this population remain unknown. If the government does not register people with Down syndrome, it excludes them from any public policy, affecting their rights." - ASDRA

The solution: ASDRA fought for a question about Down syndrome to be included on the National Census in order to create an official record of the population. The request was denied. And so, ASDRA launched the 'Numbers Syndrome / Sindrome De Numeros' campaign.

We launched this campaign with the support of organisations from all over Argentina to showcase how people with Down Syndrome are invisible when it comes to State numbers.

They developed a simple survey to collect data about the Down syndrome population in Argentina.

They learned that there are 46,002 people with Down syndrome in Argentina who have a National Disability Certificate. The survey also revealed some other statistics:

  • 48% of people over 12 years of age with Down syndrome had not entered secondary school;
  • 17% of people with Down syndrome between 3 and 17 years of age had never directly entered the educational system;
  • 85% of people with Down syndrome are unemployed.

ASDRA will use these statistics to advocate for the rights of people with Down syndrome to be realised.

Federação Brasileira das Associações de Síndrome de Down (FBASD - Brazil) 

The problem: People with Down syndrome, and other disabilities, were at increased risk during the COVID-19 pandemic. Many were unable to use precautions such as wearing masks or using alcohol gel. They were more likely to be exposed to the virus because of daily health care dependence.

The solution: FBASD advocated for priority health care and vaccination for people with Down syndrome. They produced scientific research to show the increased risk for this vulnerable population. They took their fight to the Superior Federal Court, the highest member of judicial power in Brazil, but they did not succeed. 

In Brazil, local governments had the autonomy to prepare their own vaccination programs. And so, FBASD took their advocacy straight to the source. FBASD used the COVID-19 vaccination advocacy toolkit, produced by DSi to develop their campaign - "I demand a dose of respect".

The campaign was a success! The first state agreed to vaccine prioritisation and created a chain reaction across the country so that in each neighbouring state the demand succeeded. The success of this campaign enabled other disability segments to follow suit and pursue the same health rights. 

Yayasan Peduli Sindroma Down (YAPESDI - Indonesia)

The problem: In Indonesia, information about the COVID-19 vaccine was not accessible. People with intellectual disabilities were unable to make an informed decision about vaccination.

The solution: YAPESDI saw a need to produce accessible information about the COVID-19 vaccine so people with intellectual disabilities, and their families, could take control of their health. The team created a set of posters which were shared on social media. The posters used easy-read language and were approved by a self-advocate with an intellectual disability before they were published.

The YAPESDI team went on to offer classes about the vaccine and its effectiveness. Students were given the chance to ask questions and talk about their concerns.

As a result, every one of the YAPESDI students went on to get vaccinated along with their support persons.

Down Syndrome South Africa (DSSA - South Africa)

The problem: In South Africa, people with intellectual disabilities were not considered in the response to the COVID-19 crisis. Unemployment rates among people with intellectual disabilities increased. Babies and children missed out on essential early intervention and therapies. And people with Down syndrome were not recognised as a priority group for COVID-19 vaccination or provided with accessible information about the virus and the vaccination. This vulnerable group were left at greater risk of poverty, developmental delay, illness and death.

The solution: DSSA hosted an advocacy workshop with their members and families teaching them how to advocate for equitable disability-inclusive responses to emergency situations for people with disabilities. Together they led an advocacy campaign calling for the prioritisation of people with Down syndrome in the National vaccination program. 

The campaign gained a lot of online media coverage, catching the attention of Gauteng's Premier Office and the Department of Health. This sparked discussions and contributed to the government's decision to include people with Down syndrome in priority vaccination.

The team went on to produce easy-read leaflets to inform people with intellectual disabilities and their families about the vaccine, including the process for getting vaccinated. This was produced in 6 languages. The leaflet had a huge impact, providing clarity and preparing individuals for vaccination. 

DSSA went on to advocate for the supported employment of people with Down syndrome. They produced an easy-read document and used it to train self-advocates to seek supported employment.

They also hosted a virtual workshop on early intervention therapy. This was attended by therapists, parents and association members across the country. This will support therapists to provide appropriate therapy and support for parents during situations of risk similar to the pandemic and also natural disasters so that children's developmental milestones and not delayed.

This work has been funded from UK aid from the UK government and Disabled People's Organisations Denmark (DPOD), via the International Disability Alliance's COVID-19 Pooled Fund.