How to advocate for increased availability and accessibility of disability data

Written by Moses Fordjour, Ghana Federation of Disability Organisations (GFD)

Please describe a real-life problem your organisation has faced on this subject.

In 2010, the Ghana Statistical Service conducted a nationwide population and housing census and recorded 3% proportion of the country as having ‘severe’ disability.

The problem was that the instrument for data collection was weak and allowed for interpretations (in most cases based on observations) to determine who a person with disabilities was. As a result, many more forms of disability were not captured, and so there was underestimation of the population of persons with disabilities in Ghana.

Even though the census was the first time that data was disaggregated for disability, it fell short of our organisation’s expectations and the expectations of stakeholders in the sector. In the health sector specifically, data on clients was not disaggregated at all, which made it difficult to plan as we had no real data about persons with disabilities accessing services.  

How did you work on and try to overcome this problem?

The Ghana Federation of Disability Organisations (GFD) has been working with a data-gathering tool, called the Short Set of Disability Questions – a set of 6 questions that were developed by the Washington Group (WG), a global effort to standardise disability data.

The questions were applied to our own internal data-collection processes, to generate results and challenge data-collection agencies about the need to improve their tools and processes. We engaged a number of agencies, including the Ghana Health Service (GHS), on the need to adopt the Washington Group questions.

We needed approval and engagement from three levels of authority:

1) The GHS Family Life department at the national level

2) The districts with the regional health directorate’s department for family planning and family health in attendance

3) The facility levels

All the three levels of engagements were needed to improve data disaggregation on disability. Firstly we needed the approval from the three levels and then for these stakeholders to adopt the Washington Group questions for their work.

At the facilities level, where health personnel work directly with clients, including (potentially) persons with disabilities, the engagements centered on collecting data to do targeted community outreach. Through workshops and small group meetings, presentations were made to push for the adoption of the Washington Group questions.

What did you achieve and what changes were made?

The Ghana Health Service bought into the need to use the Washington Group questions at all the three levels of decision making.

A significant achievement for our organisation was that all stakeholders agreed that data disaggregation needed to be improved.

Some health facilities that participated in our project began to disaggregate data, having been empowered with the questionnaire tool.

There is also now strong commitment at the national and regional levels of the Ghana Health Service to improve data gathering and disaggregation on disabilities.

What did you learn from this experience?

We learnt that institutions like the Ghana Health Service (GHS) will buy into this initiative if:

• the issue in question would help them achieve their mission and objectives
• we are able to show, using practical data from research, that many more clients with varied forms of disability may have not been recorded. In fact, the WG questions would also help the GHS to achieve their annual assessments, which would boost their own performance

It is better to start the engagement process in small group meetings where presentations are made to make a case for the need of the Washington Group questions. Subsequent follow-up meetings on one-to-one basis work to strengthen your case and make your goals more achievable.

What are your tips for someone facing the same or a similar issue to the one you describe above?

• Getting approvals from authorities like the GHS requires interactive dialogue with the right departments that deal with the specific area where one is trying to advocate change. In the case of the Ghana Federation of Disability Organisations, working with the Family Health department proved to be crucial.
• Once there is approval from the national and regional levels, it is easier to engage the facilities in the districts with the help of the district health directorates.
• Crucially, always obtain ethics approval for any data collection from the Research and Development Department. It is the pass to getting through to the sub-national levels.

The Washington Group Short Set of Disability Questions

Moses Fordjour, Ghana Federation of Disability Organisations (GFD)

Moses Fordjour is the Head of Monitoring, Evaluation and Knowledge Management at the Ghana Federation of Disability Organisations (GFD).

The GFD has been a lead organisation in advocating for disability rights and inclusion in Ghana for over three decades. Our core strategy has been to collect and access data on disability, and use this data to engage private and public sector institutions, agencies and, in some cases, individuals.

We have developed tools to gather data on disability and have made strategic influences on Ghana’s Statistical Service and other data-collection agencies in the country, with the aim to improve quality of data on disability.