Caring for persons with disabilities

The paucity of data on people with disabilities should be dealt with on a priority basis

To understand Pakistan’s status in terms of the provision of a dignified and decent basic health and financial care for people with disabilities (PWDs) in accordance with its commitment at various international forums, one needs to analyse the availability of data and the prevalent laws and practices and their implementation.

Besides explaining the paucity of data, this exercise should explore the amount of effort made towards improving their lives. Such an exercise will help us understand the nature of the social protection system (SPS) in the country.

To begin with, why is it necessary to stake hug amounts on targetted policy actions backed by a legal framework? To answer this question, one needs to consider the huge impact of such actions evident in the form of reduction in poverty, income inequality and access to social protection. All of these in turn create opportunities for the vulnerable segment of society to promptly tackle the expected uncertainty, such as disability (permanent or temporary), jobless-ness and, sickness, etc.

On a similar note, one might also ask; why should a poor country with around 50 million people living below the poverty line pay heed to the forever neglected and highly vulnerable segments of the society? In this regard, Covid-19 has been a blessing in disguise for the SPS not just in Pakistan but worldwide, making it the talk of the town everywhere. In Pakistan, while Covid has wreaked havoc on the public health system, the attention has been rightfully diverted towards the most vulnerable segments of the society such as PWDs and transgenders, etc.

According to the WHO’s International Classification of Functioning (ICF), the term ‘disability’ refers to a combination of factors such as physical damage, functional impairment, and social limitations. Such a definition describes a person’s state of health, disability and social impairment.

Recent literature shows that the major reason behind inconsistent collection of data on disability/social protection by the government is a lack of agreement on a standard definition of disability. Another reason is the cultural factor which results in non-cooperation by respondents as they want to hide the disabilities of their children on account of social stigmas associated with those.

The data gap is a big challenge to overcome given the weak institutional structure and poor command while following a standard course of action in fulfilling a task. The institutional weakness points to the role of enforcement of existing laws in terms of delivery of services.

For instance, Pakistan does have a free medical care service for disabled individuals in all government hospitals. However, there is poor service delivery and the quality of the services is abysmal.

Legal provisions for care for disabled people were first made in 1981 with the promulgation of Disabled Persons (Employment and Rehabilitation) Ordinance. The ordinance was followed by Pakistan’s first National Policy on the Issue of Disability announced in 2002. Under the policy, disability was referred to as a condition in which due to some inherited or acquired health condition the person of concern is handicapped in or prevented from engaging in a gainful profession. Such disability necessitates special arrangements to protect PWDs against the inequalities.

In the recent past, there have been several laws on PWDs that were never enforced. One of those, The Sindh Differently-Able Persons Act (2014), was passed in 2015 and amended in 2017. It provided for fee waivers and social security grants.

The disability prevalence in Pakistan seems to be stalled, which indicates how grave the issue is. It also shows how uninterested we are as a nation to work on the subject that has a human face to it.

It is reasonable to assume that all human beings will experience some form of disability at some point in life. The World Report on Disability, produced by the WHO and the WB, therefore describes disability as a human rights issue. Those having some form of disability may be deprived of access to health facilities, employment and education etc.

Governments in developing countries allocate inadequate resources for the facilitation of the PWDs. In Pakistan, two major fault lines are readily visible:

First, there exists a huge lag in policy implementation. Thus, analysing the underlying problems that hinder the implementation of the policies would help in highlighting the grey areas. There is a great need besides to pinpoint the gaps in laws.

Second, the data gap hinders any meaningful review of policies for the care for PWDs. Globally, disability prevalence seems to be rising. According to a recent WHO report, around 15 percent of the world population lives with some form of disability. Out of this 2–4 percent are categorised as those facing significant difficulties in functioning. The increase in disability is attributed mainly to an aging population, i.e., chronic diseases coupled with advancement in technologies that measure disability.

In Pakistan’s case, however, disability prevalence seems to be stalled. This indicates a grave issue. It shows how uninterested we are as a nation to work on the subject which has a human face. The subject appears to be neglected both in the academic sector and the policy sector.

In Pakistan, according to the Pakistan Demographic and Health Survey (PDHS-2018), 81 percent of the population has not reported disability of any kind. The survey indicates that 13 percent have some temporary/partial disability while 6 percent have a severe/permanent disability.

According to the 1998 census data, the PWDs constituted 2.49 percent of the overall population. The small number raises concerns of a poor data collection mechanism.

Recent literature also suggests that the survey mechanism adopted by various government institutes was not designed specifically to collect information about PDWs. One such example is the questionnaires developed for the 2017 census. The proportion of disabled people was thus reported as only 0.48 percent. One of the recommendations for filling the data gap therefore is to design an exclusive survey specifically for the collection of information on the prevalence of disability.

An important aspect of the social protection debate is thinking of out of the box to facilitate PWDs. Usually, social security models prevalent in developed countries are pursued. However, they do not always work well.

Social protection models designed for the developing countries generally lack support on account of not having been tested in the developed world. Thus, considering the developed world social protection system as a learning experience for the developing countries might not work. It is recommended that the SPS for the developing countries should be customized according to their specific circumstances and be responsive to natural or man-made catastrophes like famine, pandemics and wars, among others.

It is evident that for any system to be established or updated, availability of reliable data is a pre-requisite. Thus, the paucity of data should be dealt with promptly. At the same time, the implementation aspect of the current policies needs attention. The provision of minimum social protection encompassing basic health/financial care for PWDs might seem a distant dream but should prove doable if proper attention is paid to it by the government.

The writer is a coordinator at Pakistan Alliance for Social Protection (PASP) and a researcher at Sustainable Development Policy Institute (SDPI)

Caring for persons with disabilities