Disability inclusion in Zambia’s government COVID-19 policies: a framework analysis | International Journal for Equity in Health

This paper set out to analyse the disability inclusiveness of Zambia’s Government COVID-19 policies using framework analysis. Across the 10 policy documents included, our analysis identified limited disability inclusion within policies and guidance on COVID-19, with 66 scores out of 80 scores showing “not included” and only 14 scores at 1 (disability inclusion mentioned) and above. Within themes, disability inclusion was often mentioned rather than explained with a few actions, especially with respect to access to information (average score of 2.5). Disability inclusion was mentioned, and some actions were provided on five themes, including access to healthcare, access to education, financial support, considerations for people facing multiple exclusions, and inclusion in the decision-making process (average score of 3, reflecting action identified to include disability inclusion). For these five themes, detail was often limited to ensure operationalisation. While some of the themes have actions, albeit with limited information, there were mentions only of disability inclusion without further policy actions provided for one theme, reasonable accommodation, (average score of 1). Finally, there was no mention of disability disaggregated data across the COVID-19 policy documents. These policy attributes have multiple and intersecting ways in which they continued to shape disability inclusion. In the discussion, we focus on three key issues from the policy analysis: policy omissions versus social justice, recognition of rights versus lack of corresponding action the need to move beyond general policy designs.

Policy omissions versus social justice

First, regarding the issue of policy omissions versus social justice, our study findings on paucity of disability inclusive measures in government policy are consistent with several previous policy studies in Zambia conducted before the pandemic. Prior to the pandemic the issue of disability inclusion in Zambia was driven by implementation gaps between policy and practice [24, 37], often arising from a lack of understanding and coordination between those who plan and those who carry it out.

In Sub-Saharan Africa, the pattern of policy omissions is the same: For example, the African Union (AU) developed policies that recognise the rights of persons with disabilities. The expectation was that governments would in turn adopt and adapt these [38]. However, when these policies were adopted, they often lack implementation plans, budgetary allocations and enforcement mechanisms, which are needed to promote the implementation of disability inclusion [39]. This remained consistent across LMICs, where many ratified the UNCRPD and designed disability policies, yet the gap between policy and practice remained significant. In their analysis of the alignment of 14 national policies with the UNCRPD, Shikako et al. (2023) reported disparities across countries [40]. Similar to our study, Zandam et al. (2024) found better disability inclusion in COVID-19 vaccine drives in Zambia than on other domains [41].

Although Zambia has ratified the UNCRPD and put in place a Disability Act number 6 of 2012 [22], our analysis of COVID-19 policy in Zambia also reveals that scores of “not included” were actual omissions, signifying the absence of disability considerations in emergency settings such as pandemics. This suggests that policies were designed primarily for the general population. Measures specific to disability in COVID-19 policies were missing especially in the two Statutory Instruments [28, 42]; the Ministry of Labour policy [31] and the Electoral Commission policy [43]. Within themes related to main life areas during the pandemic, none mentioned intention to monitor disability inclusion. Disability Inclusive policies are important because they facilitate the removal of barriers to equal participation of people with disabilities in civil, political economic, social and cultural spheres while monitoring outcomes improves accountability [44,45,46].

To achieve systemic justice for people with disabilities during the pandemic, policies should have been more disability inclusive [13, 46,47,48], embracing social justice principles of access to resources, equity, participation and non-discrimination [49,50,51]. Studies have shown that without guidance, COVID-19 policy implementers at the grassroots level may have few tools and resources to work with, especially in low-resource settings [20]. Research shows that in addition to not having guidelines on disability inclusion, many health care workers, who are required to disseminate this health information, often lack knowledge on disability inclusion, are already overburdened with multiple tasks and, further, have been impacted directly and indirectly by the pandemic [52, 53].

This study underscores the need to reduce systemic injustice through disability inclusive policies, with limited disability inclusion in policies across sectors an ongoing issue in Zambia [24, 37, 54,55,56]. Recently, the United Nations Committee on the Rights of Persons with Disabilities made several recommendations to the Zambian government on how to improve disability inclusion [25]. They noted the need for improved disability inclusion in policies, the inclusion of people with disabilities in decision-making, and disability-disaggregated data with which to inform programming. The Committee also recognised the need for a better understanding of disability inclusion across all government entities and Ministries [25]. The government should prioritise adhering to the principles in the UNCPRD [57] and promoting the Sustainable Development Goals [58]. Regarding future pandemics, there are many participatory models and frameworks which government and stakeholders may use to co-design interventions that may address health and social disparities experienced by people with disabilities during a pandemic. For example, the PREparedness, REsponse and SySTemic transformation (PRE-RE-SyST) model includes actions to maintain essential services, provide accessible policy and public health information and engage with organisations of people with disabilities. Such models also recognise that governments need to address the structural and systemic causes of inequities experienced by people with disabilities that are exacerbated during a crisis such as COVID-19 [59], in keeping with international guidance [12, 13]. Another example is the Missing Billion Initiative’s System Level Assessment (SLA). The Initiative is working with global stakeholders and national governments to address inequities in health. Using a novel framework of disability-inclusive health systems, the Initiative supports governments to develop disability-inclusive health systems that provide access to people with disabilities on an equal basis to others. This includes action to provide training to health workers and ensure appropriate disability-focused health financing. Recently, the Initiative has partnered with the Ministry of Health in countries such as Chile, Nigeria and Mozambique. In Chile, the work resulted in formulation of a new National Policy on Inclusive Health for People with Disabilities. And in Nigeria, 40,000 health workers have been trained in disability inclusion across 36 states. This is an example of partnership and action that governments can take to strengthen disability inclusion and address inequities of access to services that are amplified during crises [60].

Recognition of rights versus lack of corresponding action

A second key issue was the recognition of rights without corresponding action: Our policy analysis revealed that in some instances, the national COVID-19 policy at least mentioned disability. This is an indication of the Zambian government having recognised that people with disabilities needed considerations in the planning, response, and recovery plans, as directed by the WHO [13]. This finding agrees with a scoping review on COVID-19 policies in 18 countries in Africa, including Zambia. In their study, Kapiriri et al. found that people with disabilities were mentioned among the priority groups in COVID-19 policy in Zambia, but equity considerations were missing. This limitation was particularly evident in other LMICs [61]. The recognition of rights is a crucial step, but without corresponding action, these rights remain rhetorical. These shortcomings of the Zambian government to disability inclusion during COVID-19 through a lack of corresponding actions, like equitable resource allocations or delivery mechanisms, are consistent with other policy studies of four South American countries; studies in Australia; South Africa, and Chile [11, 19, 20, 62].

The lack of actionable measures in policies, in turn, impacts the ability of the system to be responsive to the actual needs of people with disabilities during the pandemic. For example, one of the issues identified was a lack of actionable policy measures on accessible communication for all impairment categories, to include people with cognitive, intellectual, developmental and/or communication impairments. This is contrary to article 9 of the UNCRPD on accessibility [51]. This means that people with intellectual impairments and autism were not catered for by government’s COVID-19 policy. The recognition of rights without major shifts in resources and mechanisms for delivery may partly explain lack of accessible information and negative effects experienced by many people with disabilities globally [46, 50, 63,64,65]. In Zambia, public health information was often disseminated and received in formats largely inaccessible to people with visual, hearing, and intellectual impairments [27]. While reasonable accommodation theme is implied in the labour policy [31], it lacked specificity and policies generally failed to incorporate disability inclusive safeguards. Another example is the Public Health (Infected Areas) (Coronavirus Disease 2019) Regulations under Statutory Instrument 22 prescribed penalties for non-compliance without recognising the barriers faced [42]. This is an example of an area where disability inclusion could have been provided for but clearly missed. This omission mirrors global critiques of pandemic responses that adopted coercion measures with potential negative consequences for people with disabilities [66]. According to the biopsychosocial model of disability embedded in the ICF, this lack of policy considerations is an environmental barrier to disability inclusion [67], contrary to the principle of non-discrimination [57]. In future, government and stakeholders should ensure that both targeted and mainstreamed actions [45] are co-designed with broader OPDs and family representatives of people with disabilities.

The need to move beyond general designs

Lastly, the policy emphasis on general design over universal design further constrains access. Our findings are an indication of the need for government policies to move beyond general designs to embrace universal designs, by ensuring that public policies highlight non-discrimination and improve access for people with disabilities. One of the possible explanations for the policy visualisation having more scores for “not included” is that the COVID-19 policies in Zambia lacked the specificity and operational detail necessary for high level disability inclusion (level 4, intention to monitor disability inclusion expressed) [19]. Universal design has emerged as a gold standard for inclusion. This may include accessible physical infrastructure, accessible communication mechanisms, universal health coverage, inclusive eligibility criteria, in contrast to the general design [68,69,70,71,72,73]. These policies, if well implemented, could facilitate sustainable and disability inclusive access to and equal participation in most social economic spheres [74].

One notable area of policy inclusion in Zambia was the emergency social cash transfer programme, which expanded both coverage and support levels for vulnerable populations, including people with disabilities [75]. In financial support, and considerations for people facing multiple exclusions, cash benefits with top-ups (vertical expansion) and increased coverage of people with disabilities (horizontal expansion) were implemented [75]. However, coverage was uneven. People with disabilities who did not have a disability card, who did not reside in targeted areas, who were considered not poor, or who lost income due to pandemic related disruptions were often excluded [76]. This aligns with broader evidence indicating that persons with disabilities in LMICs were more susceptible to economic shocks during the pandemic but less likely to be protected by social insurance schemes. Neither were they always assessed for non-contributory social welfare support [77] and reported differential experiences [17, 18, 26, 27, 78,79,80]. The government should increase coverage of social protection interventions, as per Social Protection Floors Recommendation, 2012 [81,82,83], to cover many people with disabilities. This should be mainstreamed in national policy, with basic social security guarantees [83]. These improvements may echo Amartya Sen’s capability approach, which emphasises the expansion of real freedoms that individuals require to lead lives they value [84].

Zambia’s experience reflects a broader pattern in LMICs where universal design principles are implemented incrementally and inconsistently because of resource constraints [85], exacerbated by the COVID-19 pandemic [86]. The absence of universal designs and operational detail in crises responses undermines both first generation rights – participation, non-discrimination and second-generation rights – health, education with negative consequences like not considering special education supports when switching to remote schooling [77].

Another key contributing factor to this largely “exclusion within inclusion measures “in COVID-19 policy may have been the persistent poor availability of disability disaggregated data, which restricts evidence-based planning [17, 87]. Studies show that many policies in LMICs aggregate disability with other vulnerable groups such as women, children and older adults, and the general population, without recognising the unique challenges faced by people with disabilities. When disability indicators were included, the data were often outdated and insufficient to guide real time planning, for instance data from 2015 [21]. Moreover, the contributions of OPDs were often not acknowledged in many policy documents despite the UNCRPDs call for their participation. Many policies in LMICS are designed without the active participation of people with disabilities, which might lead to a disconnect between policy intentions, and the actual needs of the disability community. Sufficient engagement and involvement of expert OPDs during the policy phases have the potential to improve disability inclusive frameworks and in line with the mantra of “nothing about us without us” [51, 58, 87].

Zambia, like many LMICs, missed a policy window that could have enabled more transformative inclusion. According to Kingdon’s multiple streams theory, effective policy changes occurs when problem, policy and political streams converge [88]. Between 2020 and 2022, there was a policy window, during which policy makers were receptive to new ideas and policy changes during the pandemic. The problem stream involved growing awareness of the disproportionate impact of the COVID-19 on people with disabilities [13, 18, 26, 47, 79]. The policy stream (policy action) encompassed the development of disability-inclusive solutions, such as accessible vaccination packages and inclusive social protection programmes. Some actions were provided, example in access to health, access to education, and social protection. However, details were missing to ensure effective operationalisation, and this finding is in keeping with other policy analyses and scoping reviews [89]. Content was missing on policy initiatives and strategies to maintain disability inclusive access to healthcare, community and support networks, and training and education of healthcare professionals to better understand the needs of people with disabilities during the pandemic. On access to education, digital solutions to either initiate or maintain access to remote learning for people with disabilities were not covered, nor was intention to monitor actions on actual remote learning for people with disabilities. Before the pandemic, interventions on disability inclusive learning were already problematic; pandemic restrictions further pushed some learners with disabilities out of the school system through inadequate access to resources to participate and the inability to return to school because of falling behind in schoolwork.

In the future, multisectoral action is key because studies have shown that during pandemics, no one key actor is expected to shoulder all the policy burdens [2, 12, 13]. For example, the Disaster Management and Mitigation Unit, the Zambia National Public Health Institute, and the Zambia Agency for persons with disabilities must work together when planning response and recovery measures, so that interventions are synchronised to achieve equitable outcomes of pandemic interventions.

Strengths and limitations

This is the first analysis of multisector government COVID-19 policies in Zambia using a disability inclusion lens. The study utilises a structured framework based on international guidance and used in other settings.

Regarding limitations, firstly, we did not measure the frequency of actions in a document. Whether a policy document provided 100 detailed actions or one action with limited information, it was scored 3. As noted in the results, policies often provided limited information to operationalise actions when scoring 3, and we encourage cautious interpretation on the strength of these policies towards actionable disability inclusion. Secondly, in real contexts, policy contents may overlap, especially when policymakers reference an earlier document as key to the interpretation and implementation of the new policy. For example, Statutory Instruments referenced consistency with previous provisions of the Public Health Act (1930), however, the Public Health Act was not analysed as COVID-19 policy in this paper because it was formulated in 1930. Thus, disability-inclusive provisions in this Act and as noted to be applicable to certain COVID-19 policies, were not assessed, which may underestimate the level of disability inclusion intended and interpreted by policy actors in Zambia. We did not analyse the policies of NGOs and faith-based organisations, as they operate hospitals, boarding schools and orphanages where people with disabilities may have been receiving services. Comparing these contexts could have shed light on how Government COVID-19 policies were translated into practice.