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Health and disability rights: gathering citizens’ voices

Posted on 02/07/2020
By Commonwealth Foundation

The Foundation recently convened learning exchanges with civil society leaders working on health and disability rights—particularly the rights of vulnerable populations who have been ‘left behind’. The participants, who hailed from 11 Commonwealth countries and had each received support from our grants programme, shared ways to realise these rights by making governments more accountable. This is the first in a series of blogs profiling the approaches our partners have taken.

Existing research is unambiguous: vulnerable and marginalised groups—including women and girls, the poor, and persons with disabilities (PwDs)—are very far from achieving the promise of Universal Health Coverage (UHC) or the Sustainable Development Goal of ensuring healthy lives and wellbeing for all. Further, the estimated one billion PwDs in the world are denied equitable participation in society due to prevailing material and attitudinal barriers, facing higher rates of multidimensional poverty, lower educational attainment, lower rates of employment, and poorer health outcomes. The COVID-19 pandemic has made these inequalities starker.

If you want to ensure a government remains accountable to a community, gathering data directly from that community is a vital first step. Decision makers rarely seek citizen data automatically and voluntarily, and disadvantaged communities may not readily have the capacity to know when, how, and where to provide it in order to influence decisions. The media, civil society organisations (CSOs), and research groups play a key role in the collection, synthesis, and communication of citizen data. Many Commonwealth Foundation partners fulfil this intermediary role. The key to their success has been to fully involve the communities they are trying to help in the process—ensuring it is both credible and sustainable.

Here are two examples of how this has been done effectively:

Community scorecards, Jadabpur Union Council, Bangladesh

Beneficiaries under the Bangladesh government’s Vulnerable Group Development (VGD) scheme are entitled to 30kgs of rice each month—this is a safety net to provide food security for the poorest and most vulnerable citizens. Government officials believed that the scheme was satisfactorily reaching all those in need, but Access Bangladesh Foundation found that many persons with disabilities (PwDs) living in poverty were not accessing the scheme due to lack of awareness, gender discrimination, and nepotistic and non-transparent beneficiary selection.

‘The scores revealed a gulf between the perceptions of PwDs and government officials.’

In order to hold the government accountable to its promises, Access Bangladesh first needed to find an effective way to demonstrate the gulf between PwD’s and the government’s perceptions of the scheme. For this, they designed a community scorecard for the Jadabpur Union council. Through focus groups and individual meetings with PwDs and government officials, they identified the most relevant performance criteria on VGD schemes including the beneficiary selection process, the attitudes of staff providing the service which affected how PwDs felt, and the quality and quantity of items. The scores revealed a gulf between the perceptions of PwDs and government officials. For instance, government officials scored themselves highly on the quality of information provided to PwDs before beneficiary selection, as well as on beneficiary selection itself—PwDs gave the government low marks for both.

Access Bangladesh then facilitated discussions between the two parties during which the scores were revealed. PwDs explained how the government could improve the scheme’s uptake, while government representatives explained their constraints. Through dialogue, both parties agreed on how to improve access to the support schemes. This exercise produced reliable citizen data, initiated a sustained dialogue among service users and providers, increased the trust PwDs held in government because they were listened to, and led to more-inclusive service delivery. For example, women with disabilities were given priority in future beneficiary selection because their additional vulnerability was recognised. In addition, PwDs became more aware of the scheme and the numbers of users increased. In particular, the vulnerability of women with disabilities was recognised and they were given priority in future beneficiary selection. The success of the project was driven by each party working together before, during, and after the meeting in a manner that ensured equal participation. The exercise also improved the confidence and problem-solving skills of the PwDs involved, who are currently following through on the scorecard exercise to ensure that promises are being delivered on.

Social audits, India

During their work in India, Carers Worldwide (CW) found anecdotal evidence that many PwDs in remote, rural and tribal areas were not counted in government disability data, or were miscategorised as having low-level disability and were not in receipt of adequate support. Upon investigation, the assessment process was found to be deeply flawed: camps were only held once per year at locations in each district shown to have poor accessibility. PwDs who couldn’t attend these camps did not get disability certificates and received no government support as a result.

‘They entered the discussion armed with a powerful combination of clear data, a call to action, and the presence of PwDs and their families’

CW brought this to the attention of government officials and other decision makers with the help of a local organisation called SPREAD. A year passed without progress and so CW, alongside local partners and PwDs, decided a new strategy was required. They conducted a large-scale social audit to ascertain data on disabilities and government support. The audit was implemented by PwDs and carers in two villages as pilots before it was scaled up to 34 villages. The data showed the extent of the problem: hundreds of PwDs in this small area were not registered and not claiming government support. Poor community knowledge on accessing support and an inadequate understanding of what counted as a disability had profound impacts with mental illness, stroke, and accident-acquired disabilities too often going undeclared. Perhaps the most striking finding was that 80% of persons with severe disabilities had been wrongly categorised as having ‘minor disabilities’—leading them to claim far less government support than they were entitled to.

A coalition of CW, local partners, PwDs, and carers presented these results to local government officials during a face-to-face meeting. They entered the discussion armed with a powerful combination of clear data, a call to action, and the presence of PwDs and their families. This combination attracted the attention and empathy of government officials who took swift action. As a result, assessment camps are now held three times a year in several locations and involve increased numbers of staff and attendant PwDs. Additionally, hundreds of PwDs have been registered as disabled or re-categorised to reflect their actual level of disability and are now in receipt of the government support they are entitled to.

Next month in our blog series on health and disability rights accountability, we will share case studies that demonstrate the importance of coalition building and leveraging networks.

Dr Shobha Das is a former Director of Programmes at Minority Rights Group International and Gillian Cooper is the Programme Manager of Knowledge, Learning, and Communications at the Commonwealth Foundation.