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. 

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.”