Overview of the Presentation on the New Disability Data Initiative

Go Back

Text prepared by Sophie Mitra for the United Nations COSP 14 side event Toward an Inclusive and Sustainable World:
Making Data and Statistics Disability-Inclusive.

June 18th 2021

Hello everyone,

I will start with a few acknowledgements.

This initiative is the work of a team at Fordham University including eight students and myself. Students are in economics, disability studies and computer science, at the Bachelor, Master’s and PhD levels. I would like to express my deepest gratitude for their excellent work, dedication and patience over the past 18 months. With the pandemic, it was for all of us a challenging time to work on a new and large project such as this one.

I also would like to thank the steering committee for their invaluable guidance and encouragement in the past year. Later in this panel, you will have the privilege to hear from two members of the steering committee, Margaret Mbogoni and Charlotte McClain-Nhlapo.

The disability data report is coedited by Jacklyn Yap, PhD candidate at Fordham University and myself. Jacklyn will be around during the Q&A.

The disability data initiative is made possible thanks to funding from the Wellspring Philanthropic Fund and from the World Bank’s Trust Fund For Statistical Capacity Building under the Inclusive Statistics and Data project.

So why a disability data initiative?

182 countries have ratified the United Nations Convention on the Rights of Persons with Disabilities since 2006. Many countries have also developed national policies and legislations towards implementing the Convention.

Have the rights of persons with disabilities been realized? Perhaps in some countries only? For countries where rights have been realized, what is it that worked and how?

These questions are difficult to answer. Developing answers requires collecting and analyzing data.

One option is to gather environmental and policy data to identify changes that are required in terms of physical and social barriers. Another option is to have a qualitative and participatory exercise involving several stakeholders, including persons with disabilities and disabled people’s organizations. While these options may go a long way in understanding the situation of persons with disabilities and informing policy and advocacy efforts, they would not provide nationally representative information on individuals and households and may be difficult to compare across countries.

That is where national statistics based on household surveys and censuses can be useful. They can provide estimates for indicators that document whether equal rights have been respected. For this, statistics need to be based on concepts that are in line with a human rights approach to disability, disaggregated by disability status, and reflect various aspects of the lives of persons with disabilities and their diversity. This is particularly important during the pandemic, when disability prevalence may have increased and disability inequalities may have been exacerbated.

The disability data initiative and its report provide the first systematic analysis of what is often used as a source of disability statistics, that is national censuses and household surveys globally. It also takes advantage of the increasing availability of internationally comparable disability questions by analyzing 41 countries’ national census or survey data to produce 30 indicators disaggregated across disability status.

Results are available in a report and in tables on a new website. I included the web address in the chat box and will read it out loud: https://www.disabilitydatainitiative.org/

The report goes over the main findings across countries. Its methods are explained in Method briefs. The main results at the country level are summarized in Country briefs. Detailed results are available in excel tables you can download from the Results Tables page.

What are the key findings?

Let’s start with the review of datasets worldwide.

This report finds that disability questions of any kind are absent for 24% of countries and 65% of household surveys and censuses.

The general question “Do you have a disability?” remains commonly found in censuses and surveys, although it does not produce meaningful and internationally comparable data. It is unclear what such a general question measures as disability may mean different things to different people. Also, disability is often stigmatized and therefore survey respondents may not feel comfortable answering this general disability question.

Disability questions that meet international standards of comparability have been increasingly adopted. What do these international standards of comparability refer to? We consider questions to be internationally comparable if they are consistent with the recommendations of the United Nations Principles and Recommendations for Population and Housing Censuses of 2017. They need to ask about functional difficulties in at least four coredomains: seeing, hearing, walking, cognition. They may also have questions on two other domains: self-care and communication.

We find that only 84 of 180 countries and 16% of the household surveys and censuses under review have internationally comparable functional difficulty questions.

Overall, in many countries’ national household surveys and censuses, persons with disabilities continue to be invisible.
Therefore, many countries’ national household surveys and censuses do not provide the data that is necessary to monitor the Sustainable Development Goals for persons with disabilities.
And much work remains to be done to implement Article 31 of the CRPD which requires that States Parties “collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention”.

Let’s now move to the results of the analysis of survey and census data

This report presents an analysis for 41 countries with functional difficulty questions between 2009 and 2018. It is one of the first international efforts to document functional difficulty prevalence and education, work, health, standard of living and multidimensional poverty indicators for adults with and without functional difficulties.

Earlier efforts used data from the early 2000s, in particular the World Health Survey. Other efforts put together results from datasets using a variety of disability questions and were therefore not strictly comparable across countries.

How were the 41 countries chosen?

These are countries for which we had access to national household survey or census data of the past decade and that are deemed internationally comparable, meaning that they have questions on functional difficulties in four core domains.
For 28 countries, data is also available for the self-care and communication domains, including 21 countries with the internationally tested Washington Group Short Set of questions.
The disability data report provides results on functional difficulty prevalence and on indicators on education, work, health, standard of living and multidimensional poverty for adults with and without functional difficulties using several disaggregation methods.
Because six countries only have yes/no answers to functional difficulty questions, we first compare persons with any difficulty with persons with no difficulty.
For 35 countries with a graded answer scale, we can differentiate by degree of functional difficulty and separate persons with some difficulty from persons with at least a lot of difficulty.
We disaggregate by functional difficulty status and also in turn by sex, rural/urban residence and age groups, in other words, we estimate indicators for women with and without difficulties, men with and without difficulties, and so on. These findings are in the Results Tables on the website.

What do we find?

Some of the results are not going to be a surprise for many people in this space. I will present four main results.

1. First, we find that functional difficulties are not rare (Source: Disability Data Report Part 4: Prevalence of Functional Difficulties). Across countries, the median share of the adult population with any functional difficulty stands at 13%. This finding is close to the 15% global estimate in the World Report on Disability by the WHO and the World Bank.

The median share of households with adults with functional difficulty is at 28%, so more than one in four households have a functional difficulty.

These findings go against the commonly held belief that persons and families with disabilities are a small minority.

2. Second, this report finds significant inequalities associated with functional difficulties in terms of education, work, health and standard of living, by standard of living I mean adequate living conditions such as housing or having electricity. A disability gap, which is a disadvantage for persons with functional difficulties compared to persons with no difficulty, is consistently found across countries in terms of educational attainment, literacy, food insecurity, exposure to shocks, asset ownership and health expenditures.In addition, for a majority of countries, there is a disability gap for the employment population ratio, the youth idle rate, the share of adults in informal work, living conditions and domestic violence.A multidimensional analysis, either by considering the multiple deprivations experienced by an individual or country level results on an indicator-by-indicator basis, shows large and consistent inequalities.
3. An interesting finding is that for many countries and indicators, there is a graded association between functional difficulty and disadvantage. In other words, persons with some difficulties are worse off than persons with no difficulty, but better off than persons with at least a lot of difficulty.The group of persons with some functional difficulties should therefore not be ignored in research and policy, and data on functional difficulties should be collected with a graded answer scale rather than yes/no answers.
4. Finally, we also present indicators by type of functional difficulty. While inequalities are found for all types of functional difficulties, the largest gaps are for adults with self-care and communication difficulties.

Overall, the results show that policy work is needed to curb the inequalities across disability status and realize the CRPD. The stark inequalities shown in this report highlight the urgent need for policies in education, employment, healthcare and social protection.

What’s next?

Another report is planned for next year. It will update the review of national household surveys and censuses and their disability questions to cover 2019 and 2020.

We will analyze datasets for more countries, including some in the global north.

We look forward to feedback from panelists and the audience to inform the work of next year.

Thank you for your attention.