What should better disability data look like?

CANBERRA — The three-stage review of Development for All 2015-2020, Australia's strategy for strengthening disability-inclusive development in its aid program, is nearing the end, with the final review expected from the Office of Development Effectiveness in June.

Phase one assessed the extent of the mainstreaming of disability inclusion in the program. Phase two focused on the effectiveness and impact of Australian advocacy. And phase three, to be released later this year, will look at overarching lessons to be utilized by the Australian Department of Foreign Affairs and Trade to ensure people with disabilities are included in aid investments.

Thus far, the review has highlighted the importance of data to monitor disability-inclusive development within the Sustainable Development Goals — and suggested barriers in the form of the United Nations Statistics Division of the U.N. Department of Economic and Social Affairs.

The goals of DFAT and its collaborating partners — including NGOs such as CBM Australia — require thorough data. And despite roadblocks, ODE believes disability data is progressing and will continue to grow if there is consistency in data collection processes.

ODE findings so far

The phase two report from ODE, released in December 2017, found that DFAT “improved collection of data on disability across a broad range of areas, including in humanitarian response, disaggregation of SDG targets, education and country level collection.”

According to ODE, DFAT lobbied for the collection of disability disaggregated data within the Global Facility for Disaster Reduction and Recovery; promoted disability inclusion in data collection and monitoring within the SDGs; and supported capacity building within developing countries to facilitate the building of disability data.

DFAT also supported the Washington Group in disseminating existing tools to collect disability data and provided technical assistance to support their uptake, costing $2.8 million Australian dollars ($2.10 million) between 2015 and 2018.

But the report saw a major barrier in the form of UN DESA, recommending that “DFAT should act decisively and end funding to the Statistics Division of United Nations Department of Economic and Social Affairs for work on disability statistics.”

According to the review, work under UN DESA had not progressed as expected, stalling overall progress to collect disability data with the Washington Group Questions. Rated as underperforming in DFAT’s performance management system, UN DESA has been placed under enhanced monitoring.

Australian perspectives on disability data

Globally, the available data on disability has improved significantly over the past few years.

As more and more countries collect data on disability, DFAT noted a wide variation of estimates —  both within and across countries over time — but as some countries begin to collect disability data for the first time in the upcoming rounds of censuses, there are hopes for improvement.

DFAT continues to support the institutional capacity of the Washington Group in its ability to disseminate existing tools to collect disability data and provide technical assistance to support their uptake and consistent use, including in the Indo-Pacific.

The department is also supporting partners, such as the Pacific Disability Forum, to lobby for the use of the Washington Group questions by national statistic offices in the Pacific region. Lobbying that contributed to six Pacific Island countries — Fiji, Kiribati, Palau, Niue, Samoa, and Tonga — using the Washington Group questions in their national censuses.

While there is no agreement on a single consistent methodology, DFAT believes there is growing consensus that the Washington Group data tools are most appropriate to disaggregate data by disability.

The need is urgent, says the department, as this data provides the key to monitoring the implementation of both the U.N. Convention on the Rights of Persons with Disabilities and SDGs.

UN DESA perspectives on disability data

The global focal point of disability within the U.N. system is UN DESA, explained Maria Martinho, from the Secretariat for the CRPD. The department has a long history promoting the participation of persons with disabilities in society and development. Within this framework, UNSD has supported disability statistics since the 1980s.

The work of UNSD “is anchored on a long-term strategy to assist countries to build the capacity of their national statistical systems, to enable them to generate robust and fit-for-purpose statistics on disability — fully integrated in national statistical processes — for national planning and monitoring,” Martinho told Devex.

And there have already been major advancements in the available data on disability, Martinho continued.

“There are more countries collecting data on disability than ever before.

“This increase may be the result of international continued attention ... with the objective of streamlining disability into national development agendas.”

As an example, Martinho points to information on census monitoring maintained by UNSD. This data, she says, shows that the number of countries that collected data on disability through their censuses has progressively increased: From 19 countries during the 1970 census round, to at least 120 countries by 2010.

But despite the increase in available data, among countries, there is still wide variation in how data is obtained, how disability is measured, and estimates of disability prevalence.

UNSD is currently in the process of updating the Guidelines and Principles for the Development of Disability Statistics, first published in 2001. The new guidelines will highlight the “importance of instituting a well-coordinated national policy framework to ensure effective demand for data, and establishing a national statistical program that responds to the policy data needs.”

Aiming to help countries better measure and monitor progress toward the inclusion of persons with disabilities in development programs, in line with the CRPD and SDGs.

In March 2018, the U.N. Statistical Commission noted the different data needs of each country in responding to national policy requirements and called upon each country to select appropriate measurement tools.

“Recommendations on international methodology for official statistics are made by the United Nations Statistical Commission and not by UN DESA,” Martinho noted.

“Also, the 2030 Agenda for Sustainable Development recognizes ‘that there are different approaches, visions, models, and tools available to each country, in accordance with its national circumstances and priorities, to achieve sustainable development.’” 

But according to DFAT and partners surveyed by ODE, a supported method will provide developing countries with a single goal to aim for.

Why is a consistent method so important?

Briana Wilson, disability inclusion adviser at CBM Australia, explained that without a consistent approach to data collection, there is concern that countries may not collect data — or collect data inaccurately.

Currently, there are a range of different definitions and tools used, which make data between countries incomparable.

“For example, some countries still use impairment based, medically focused questions that are outdated, and less effective for disability measurement,” Wilson said.

While some countries use the Washington Group questions in national data collections and other surveys, others either do not use them in the recommended format or do not analyze the data on disability.

For ongoing progress on the SDGs, Wilson calls on the U.N. to endorse the Washington Group questions as the tool for SDG disaggregation.

“This would create an internationally comparable and measurable tool that can be used. There are a number of countries [that] are already using the Washington Group questions, and this is only increasing,” she said.

But there is still more to be done in the question and survey process, Wilson continued, and the questions should only be seen as part of the overall data collection approach to support people living with disability in the developing world, as well as how disability is monitored within the SDGs.

“The questions are a tool for disaggregating disability data,” she said.

“They do not alone give an indication of participation or inclusion. Consideration of how disability data will be linked to specific indicators to provide quality data on SDGs is needed.”

So far, there has not been adequate cognitive testing of questions and inadequate training for survey takers to ask questions relevant to social norms within countries, Wilson added.

Programming the disaggregating of data by disability is only one piece of the puzzle.

“There are plenty of other opportunities to monitor and evaluate the barriers and enablers to participation in programs ... including collecting qualitative data, and monitoring and evaluating inclusive processes,” Wilson said.

“Whilst good data disaggregation at the national level and in SDG reporting is critical. When talking about programs, it’s important to take a holistic view of monitoring, evaluating, and learning about disability inclusion.”

What now?

Under the guidance of the U.N. Statistical Commission, U.N. member states are currently preparing for and conducting censuses as part of the 2020 World Population and Housing Census Programme.

But in the absence of an agreement on disability data methodologies, countries such as Australia feel there is a risk that countries will defer decisions on disability data collection and delay timely establishment of a baseline for monitoring implementation of the SDGs.

In response, DFAT, the Australian Bureau of Statistics, and other partners including CBM are continuing to advocate for the use of Washington Group tools to disaggregate data by disability.

According to Martinho, UNSD will continue to work with DFAT to define the next steps of their partnership and to ensure the continuity of ongoing work. This includes finalizing methodological guidelines on disability statistics, taking into account existing instruments at the international level — including the Washington Group set of questions — as well as good national practices and experiences. In addition to discussion on how to widely disseminate existing national disability statistics to inform disability policy processes, and to make the case for disability-inclusive development more visible.

UN DESA is currently producing the first U.N. Global Flagship Report on Disability and Development, Martinho said. The report will be produced in collaboration with member states, the U.N. system, international financial institutions, academic institutions, and civil society, with particular focus on organizations of persons with disabilities.

“The report, which will be issued later this year, will focus on the realization of the SDGs by, for, and with persons with disabilities,” Martinho said.

“It also presents a compilation and analyses of national policies, programs, best practices, and available statistics concerning the status of persons with disabilities in development.”

A decision on DFAT’s funding partnership with UNSD will be made in May 2018 — after the next DFAT performance and quality cycle is completed and due process regarding performance of investments is followed.

Meanwhile, DFAT will continue to work across the U.N. system to promote the Washington Group questions and to support improved global capacity for disability data collection. And the ABS will continue — through the U.N. Statistical Commission — with the aim of producing data that shines a spotlight on people living with disability globally.