By Adebukola Adebayo,
The Article 4.3 of the UN Convention on Rights of Persons with Disabilities (UNCRPD) (UN, 2006) acknowledges the vital roles of organizations of persons with disabilities (OPDs) as a critical vehicle for facilitating representation and participation of persons with disabilities (PWDs) in all sectors of life. Sequel to this, global stakeholders and promoters of social protection have recognized the critical roles of OPDs in the design, planning, implementation and monitoring of social protection programs.
This position is further reiterated by the Joint Statement of International Partners Working on Social Protection which emphasizes that, consultations with, and involving OPDs, in the entire process of managing social protection programs would “…contribute to more effectively designed programmes and schemes with stronger ownership, greater awareness and better governance” (ILO et al, 2019, p. 10).
Evidently so, over the decades, and across several developed and developing countries, OPDs have also demonstrated the capacity to serve as an effective vehicle through which PWDs can be mobilized and reached with programs, projects and services emanating from both governmental and non-governmental sources. This is why it is advocated globally that OPDs should be involved in all stages of program design, planning, implementation and monitoring of social protection programs and management systems (HelpAge International, 2021) to help to ensure that programs meet the actual needs of PWDs and that interventions reach targeted PWD beneficiaries with very minimal hindrances.
However, with the rising of the COVID-19 pandemic, the UN-lead global campaign to ensure the reaching of the furthest behind first (UN, 2020a) and upon the global consensus that in our COVID-ravaged world PWDs are among the hardest hit in this crisis in terms of fatalities and are more disproportionately impacted both directly and indirectly, we are compelled to examine how OPDs are performing the moral and ethical task of helping to prioritize the reach of the most vulnerable PWDs. A significant percentage of them are children, adolescents, women, elderly, as well as people with severe and multiple disabilities, in institutions (such as schools, rehabilitation centers, homes, etc.), with no means of livelihood, and residing in inaccessible areas, who are largely unidentified, undocumented and unreached by programs and activities of OPDs especially in the reality of the COVID-19 pandemic.
Notwithstanding the global visibility of OPDs in championing disability rights and inclusion in social protection programs to reduce COVID-19 induced socio-economic shocks and vulnerabilities, there isn’t adequate evidence to show how effectively OPDs have played their role in helping to fulfil the desire of the UN’s Policy Position on Disability-Inclusive COVID-19 Response (UN, 2020b) of prioritizing the reach of the most vulnerable PWDs to benefit from social protection programs especially in view of the COVID-19 pandemic.
The rationale for this concerns is hinged on the observable organizational and leadership weaknesses of OPDs especially in low- and middle-income countries (LMICs) such as Nigeria, where OPDs are still largely week in their internal organizational structures to identify, document, mobilize and support more vulnerable PWDs. The OPDs are still falling short in their capacity to participate effectively in the strategic process of design, planning, implementation and monitoring of social protection programs managed by both governmental and non-governmental organizations.
In light of that context, in this blog post, I share my nearly 2 decades experience and observations as a leader and prominent participant in the affairs of OPDs in Nigeria with regards to how OPDs in the country have performed in prioritizing, mobilizing and supporting more vulnerable PWDs to benefit from COVID-19 social protection programs.
JONAPWD: delivering COVID-19 relief packages to PWDs
Using the 2011 World Health Organization (WHO) and World Bank disability prevalence rate of 15%, Nigeria is estimated to be home to about 30 million PWDs (WHO & WB, 2011). Nigeria operates a very broad OPD structure. There is a National Federation of OPDs known as the Joint National Association of Persons with Disabilities (JONAPWD) which is comprised of associations of/for specific disabilities including those of the Blind, Deaf, Physical Disabilities, Spinal Cord Injured, Leprosy Survivors, Intellectual and Developmental Disabilities, Albinism, Dwarves, and Spina bifida and hydrocephalus. The JONAPWD and practically all its member associations operate at both national and subnational levels respectively with reasonable degree of recognition by and engagement of governments and other stakeholders.
Over the years, JONAPWD and its member associations have played key roles in helping to mobilize PWDs to participate in, and benefit from social and economic empowerment programs and interventions by governments at all levels and by various non-government bodies including charity organizations, the private sector, etc. In view of the COVID-19 pandemic, JONAPWD and its member associations have also played major roles in advocating and helping to ensure that PWDs across Nigeria benefit from COVID relief materials provided by the Federal, State and local governments, charity organizations, the private sector and international donor organizations.
As the leader of a subnational chapter of JONAPWD in Lagos State, which is the commercial capital of Nigeria located in the Southwest region of the country, and populated by about 2 million PWDs (Vanguard, 2021), I’ve received several correspondences from governmental and non-governmental sources requesting the Association to identify and mobilize PWDs as beneficiaries for several social and economic empowerment programs. Since the beginning of the pandemic in February of 2020, the Lagos State Branch of JONAPWD worked with member associations (BO News, 2020a) to coordinate delivery of several COVID-19 relief interventions from both sources.
My direct participation in the delivery of various relief packages to PWDs across Lagos State raised my consciousness, understanding and learning about the poor sensitivity of OPDs to the plight of the most vulnerable PWDs.
The Lagos State Chapter of JONAPWD and its member Associations coordinated the mobilization of PWDs to receive the various COVID-19 relief materials and cash. While JONAPWD served as the primary interface with governmental and other non-governmental sources of relief packages, the member associations provided the names and contacts of the direct beneficiaries. JONAPWD compiled the names and details of beneficiaries and presented them to the government and other providers. The actual delivery of the packages to beneficiaries was done in 3 ways (JONAPWD Lagos, 2020):
I). Direct delivery of the relief materials and/or cash by government and other donors to beneficiaries using the data provided by JONAPWD and its member Associations;
II). JONAPWD received the relief materials and/or cash and distributed same to beneficiaries through the member Associations based on agreed quota per association;
III). JONAPWD receives and directly distributed the relief materials and/or cash to actual beneficiaries based on the data provided by the member Associations (BO News, 2020b).
Beneficiaries of COVID-19 Relief Packages in Lagos State
Between April 2020 and as at the time of this blog post (September 2021), the Lagos State branch of JONAPWD and its member associations have coordinated the reach of up to 15,000 PWDs – representing 0.75% of the 2 million PWD population in the State – with COVID-19 Food Relief Packages and cash provided by the Federal and Lagos State Governments, charity organizations, philanthropists, and other non-governmental sources (JONAPWD Lagos, 2020).
While it is impossible to share the raw data of beneficiaries due to data protection and confidentiality reasons, some useful statistics coming from these data and which speaks to the concerns of this blog’s discussion is presented below. It is also important to note that the accuracy of the data is not fully reliable, as the process of providing details of beneficiaries by OPDs was somewhat poor. They didn’t collect crucial information on the type of disability, age and sex of some of the beneficiaries, regardless, it is useful than not having any data (JONAPWD Lagos, 2020).
The data shows that:
I). At least 9,000 beneficiaries reached were adult males, representing 60% of the 15,000 total beneficiaries;
II). Up to 4,000 beneficiaries reached were adult females, representing about 27% of the total beneficiaries;
III). Only about 1,000 beneficiaries were children with disabilities, representing about 7% of the total beneficiaries;
IV). 300 beneficiaries were elderly persons, representing about 2% of the total beneficiaries;
V). The demography of about 700 beneficiaries (5% of the total beneficiaries) could not be clarified due to inaccurate data that was provided;
VI). Based on records of residential contacts provided by beneficiaries, up to 98% reside in urban and suburban main cities;
VII). Based on personal observations during the distribution and knowledge of many of the beneficiaries, up to 85% of them were either self-employed, employed by government or private sector employers;
VIII). It is also important to note that the names of up to 11,000 beneficiaries (73% of the total) re-occurred in the list of beneficiaries submitted by most of the member associations for more than 2 separate COVID-19 relief interventions. Also, more than half of these recurring names were males. The recurring names mean that the identified beneficiaries were truly in need and their names reflected in the harmonized list of beneficiaries. They did not get relief package more than once;
IX). Based on personal observations and knowledge of many of the beneficiaries, it was discovered that names of many leaders of the Associations appeared in practically all the list of beneficiaries submitted for almost all the COVID relief interventions.
Indications from the above statistics is that, not only less than 1% of the 2 million PWDs in Lagos State were reached, but also that most of the beneficiaries, just like the leaders of the local OPDs, live in urban and suburban cities. The OPD leaders were unable to reach the most vulnerable PWDs, especially children, adolescents, women, the elderly, as well as those with multiple and severe disabilities, people in institutions, residing in inaccessible areas and those without any means of livelihood, as intended by JONAPWD (JONAPWD Lagos, 2020).
Despite the UN’s campaign mentioned earlier and instructions from most donors that the most vulnerable citizens be prioritized in the distribution of COVID-19 relief interventions, a significant percentage of those people were still unable to access the relief packages because they were largely excluded by the local OPDs in Lagos.
In that sense, it’s imperative to discuss some of the contributing factors to the poor access of most vulnerable PWDs to COVID-19 Relief Interventions were:
I). Absence of credible disability disaggregated data in Agencies of government in charge of disability matters at national and subnational levels;
II). Lack of capacity by OPDs to collect and maintain credible databases of PWDs especially those residing in rural and other hard to reach areas;
III). Low sensitivity of OPDs to concerns of more vulnerable PWDs including children, adolescents, the elderly, those in institutions, those inaccessible areas, etc.;
IV). Weak collaborative mechanism between OPDs and government with regards to the development and maintenance of disability databases;
V). Poor leadership ethics and weak governance structures within OPDs;
VI). Inadequate resources for OPDs’ logistics to transport COVID-19 relief materials to remote and rural communities;
VII). OPDs in Lagos State had no COVID-19 Response and Support Strategies or guidelines to ensure prioritization of most vulnerable PWDs;
Making OPDs more responsive to vulnerable PWDs
There is a need to strengthen the understanding of OPDs in Lagos State on issues of social protection in general and within the context of the COVID-19 pandemic. This might help improve their capacity to ensure that specific needs of various disability groups including the most vulnerable PWDs are mainstreamed and that delivery methodologies and strategies of such programs prioritize them.
Local OPDs will need to improve on their data collection methods to capture the more vulnerable PWDs, especially those residing in institutions and those in rural and other hard to reach areas. For instance, there are several riverine communities in Lagos State where PWDs reside but who are neither reached by activities of OPDs nor any social protection programs of government and other donors.
OPDs should review their social inclusion orientation and approaches to acknowledge, accommodate and prioritize the most vulnerable PWDs, especially children, adolescents, women and the elderly. This would help to reduce the prevalence of male dominance and give some room for participation of such excluded groups of PWDs in conducting the affairs of OPDs.
Currently, none of the OPDs in Lagos State implement policies on child protection and gender equality. It is necessary that appreciable attention is given to such programs and activities of OPDs give special and adequate priority to the protection of children and women with disabilities.
Finally, OPDs in Lagos State need to strengthen their partnership with relevant government agencies. These partnerships will help to strengthen the visibility and participation of OPDs in policy and decision-making processes especially in such areas as development and management of disability databases and the design, implementation and monitoring of social protection policies and programs.
While the efforts of OPDs in Lagos State towards facilitating inclusion and access of PWDs to COVID-19 social protection interventions are worth commending, the inability of the OPDs to ensure proper data collection and processing, inclusion and access for most vulnerable PWDs especially children, adolescents, the elderly and other typically excluded groups of PWDs calls for great concern.
Although factors which contribute to these challenges are largely – but not exclusively – hinged on the poor sensitivity of the OPDs to the plight of the most vulnerable PWDs, especially from the perspective of social protection within the context of a COVID-19 induced emergency, the situation is worsened by the weak organizational and leadership structures of OPDs and the absence of credible disability database.
Despite the limitation of this discussion to my experience as the leader of JONAPWD in Lagos State, observations of OPDs activities across Nigeria indicate a similar trend of exclusion of most vulnerable PWDs in the delivery of COVID-19 social protection interventions. However, this blog post could serve as a hypothetical pointer towards the need for more extensive study to validate these observations.