Improving the lives of people with disability – the role of data

Gloria Cerón knows disability is an important issue all over the world, particularly in her own country of Chile.

But through a WHO-backed initiative, she and her colleagues at Chile’s National Disability Service have developed up-to-date information on disability in her Latin American nation, and are using this to strengthen services for people who need them.

SENADIS, Chile.

The Model Disability Survey, developed by WHO and the World Bank in 2011, addresses the scarcity and often poor quality of information on people with disability in many countries. The survey takes a broader approach to disability, considering not just health conditions, from depression to diabetes, but also the broader context. For example, it looks at whether public buildings are accessible to everyone, such as people who are blind or wheelchair users.

“Conducting the survey, and sharing its feedback with civil society, provided us an opportunity not only to deliver the results, but also to position the disability paradigm and the new way of measuring disability,” says Ms Cerón, who heads the Department of Studies at the Chilean National Disability Service (SENADIS).

Chilean government, civil society join forces to implement Model Disability Survey

In 2015, SENADIS, the Chilean Ministry of Health, and the government’s statistics office implemented the second national disability survey, using the WHO-World Bank model. More than a year’s work went into preparing for the survey, including consultation with people with disability, civil society groups, their families and supporters across all 15 regions of the country.

“We had the opportunity to pilot and carry-out a nationwide household survey that could accurately estimate disability and allow us to update our statistics after more than a decade,” Ms Cerón explains.

WHO provided technical support to adapt the survey to Chile’s needs, on the pilot to ensure it worked well and trained people on how to conduct the survey. After it was completed, WHO helped Chilean authorities analyse the data.

“The training carried out by WHO was essential to achieve consensus on the definitions and measurement model of disability,” adds Ms Cerón. “This generated a change in the thinking of technical personnel in Chilean institutions that understood the disability only from a medical perspective.”

Model Disability Survey helps to improve disability data

Dr Etienne Krug, WHO’s Director for Management of Noncommunicable Diseases, Disability, Violence and Injury Prevention, says collecting data based on the Model Disability Survey provides comprehensive information on the levels of disability in a population.

“It is critical for countries to be able to identify the number of people who experience disability, as well as the unmet needs, barriers and inequalities they face,” Dr Krug says. “By doing so, governments are better placed to provide the services people with disability need.”

Results drive national plans, laws

In Chile, the survey found that one in five people (16.7% adults, 5.8% children) experienced severe difficulties in daily life, either due to health conditions or impairments they have, and are very likely to experience disability if their needs are not met.

Of this, 41.5% of Chileans experience severe disability and 58.5% experience mild to moderate disability.

The Model Disability Survey also identified barriers people with disability experienced, including in health, education and transport.

After reporting the survey results to the country’s civil society groups, SENADIS then ensured the data was put to use to develop key plans and actions.

For example, the survey showed that 59% of Chileans with severe disability have a mental or behavioural disorder. This finding informed the development of the National Mental Health Action Plan, which was launched in 2017, and the National Disability Action Plan currently under development.

More than one-third of Chileans (39.3%) with a severe disability were also not working, a finding that led to the passing of the “Law on Labor Inclusion,” which aims to improve the rates of labour force participation for people with disability.

Data that highlighted barriers many people with disability experience in accessing transport prompted a government-led review to examine use and access to public transport to help determine priority actions.

Due to the importance placed on understanding how many people with disability there are in Chile, and the issues they face, the country’s National Health Survey now includes questions on disability. This will enable the Government to better track progress, understand unmet service needs and ultimately, improve the lives of people with disability.

The survey has also had other benefits, most notably increasing awareness on the fact that people with disability represent a significant proportion of Chile’s population.

A global drive for better disability data

WHO has also supported the successful implementation of the Model Disability Survey in Pakistan, the Philippines and Sri Lanka, and it is currently being conducted in Qatar and Dubai in the United Arab Emirates. Planning is ongoing to undertake the survey in Costa Rica and Panama.

"The MDS provides a comprehensive assessment of people with disability, and has contributed to making better public policy,” says Ms Cerón. “For us, it was also an opportunity to not only deliver results, but also to change how disability is positioned and measured.”