Challenges in Accessing Health Care for People with Disability

in the South Asian Context: A Review

Venkata S. Murthy Gudlavalleti
Additional article information

Abstract
South Asia is a unique geopolitical region covering 3.4% of the world’s surface area and
supporting 25% of the world’s population (1.75 billion). Available evidence from South Asia
shows variable estimates of the magnitude of disability. The projected magnitude depends on
whether an impairment focus is highlighted (approximately 1.6–2.1%) or functionality is given
precedence (3.6–15.6%). People with disability (PWD) face significant challenges to accessing
health care in the region. Studies show that adults with disability reported a four times higher
incidence of a serious health problem in a year’s recall period. Evidence shows a significantly
higher rate (17.8%) of hospitalization among PWD compared to others (5%). Chronic conditions
like diabetes were also significantly higher. Women with disability had significantly more
concerns on reproductive health issues. Studies from the South Asia region reveal that not only
did PWD have a higher load of adverse health outcomes but they also faced significantly more
barriers in accessing health services.

Keywords: access, barriers, disability, health care, India, South Asia

1. Introduction
Evidence on the magnitude of disability is crucial for effective planning and implementation of
targeted interventions, and for dismantling barriers to mainstreaming people with disability
(PWD) and improving their quality of life. The World Report on Disability highlights the need
for data for developing strategies for PWD [1]. What is required is not just any data, but data
using standardized definitions, because available data on disability varies widely due to lack of
uniformity in defining disability, the inadequacy in scientific rigor in collecting the information,
and the lack of adequately-powered sample sizes in estimating disability. Available data shows a
wide variation with self-reporting during censuses showing figures of 1–2% while the World
Report on Disability reports a global prevalence of 15% for disability [1].

The medical literature is replete with impairment-focused data. This does not consider an
individual’s functionality that is required for day-to-day living. The visual acuity of two
individuals may be the same, but, for example, the visual needs of an illiterate farmer differ
significantly from a computer analyst. The Report categorically stated that impairment data are
not an adequate proxy for disability and that measures need to be developed to obtain more
comprehensive information on disability [1]. For planning effective programs at the district or
local level, information is needed both on the impairments that need to be medically managed,
and on functionality, integration, and stigma to develop community-specific interventions to
mitigate the negative influences that reduce opportunities and access for PWD.

2. Defining Disability
In the past disability was viewed solely as a ‘medical problem’ that needed to be ‘fixed’
appropriately by medicines, surgery, or rehabilitation. The role of society in creating a disabling
attitudinal or physical environment that hindered people with disabilities to have equal
opportunities was not appreciated [2]. This prompted the search for a valid universally
acceptable definition that had flexibility to allow different uses and recognize the impact of the
environment [3]. The International Classification of Functioning, Disability and Health (ICF)
provided the framework to measure the relationship between the underlying health condition
(disorder/disease) and its impact on body functions/structure, activity limitation, and social
participation that can be influenced by environmental or personal factors (contextual factors) [4].
The World Report on Disability used this definition as the template to generate estimates on
PWD [1]. The United Nations statistical division constituted a working group (called the
Washington Group) to draft a universally acceptable definition of disability and its measurement
[5]. They developed a set of questions called the Washington Group (WG) questionnaire to
quantify the ICF concepts. The WG questionnaire is in use regularly, over the past decade to
generate evidence on magnitude of PWD. This template helped develop other instruments like
Rapid Assessment of Disability (RAD) [6], and the 34-item disability-screening questionnaire
(DSQ-34) recently [7].

This review predominantly used the ICF definition of disability (activity limitation/social
participation) wherever such data was available. Other sources of data are used if ICF targeted
data was not available.

3. Health Concerns of People with Disability

There is ample evidence on the mitigating health circumstances that PWD face. Globally,
irrespective of the economic development of a country, a significant proportion of the billion
PWD have poorer health outcomes than those without disability [1]. Studies from the high as
well as the low- and middle-income settings strongly endorse this observation
[8,9,10,11,12,13,14,15]. The WHO Report also emphasizes that part of the problem with the
poorer health outcomes also rests with the barriers to access to health care services, which
discriminate against PWD [1]. Across all continents from the Americas to Australia, studies have
documented barriers in accessing health care among PWD compared to those without
disabilities, across the life spectrum [8,13,14,16,17,18,19,20,21,22,23,24,25,26]. Though the
socio-economic milieu may be different, PWD have faced significantly more barriers than those
without a disability in all contexts. Women with disability in Canada described multiple factors
impeding access to health care [27]. PWD perceive that health providers and policy makers have
preconceived notions about PWD’s capabilities, intentions, needs, and values. This they believe
results in reduced health care access, as well as quality of health care [28]. Studies also show that
women with disabilities report lower receipt of family planning services [22]. Evidence also
documents that among PWD, the differentials in access is adverse for women, the poor, and
those lacking health insurance cover [21].

4. Why Is South Asia of Interest?

South Asia is a unique geopolitical region which hosts a quarter of the world’s population and is
home to the second (India), sixth (Pakistan), and the eighth (Bangladesh) most populous
countries in the world and the largest number of poor people globally (500 million). Of a
population of 1.75 billion residing in this region (2015), using the World Health Report estimate
of 15% disability, there would be 270 million PWD though available statistics in the UNESCAP
report shows a magnitude of 46 million, which could be an underestimation due to the data
collection modalities adopted [28]. The region faces one of the world’s worst socio-economic
inequities and there is poor coverage of basic health interventions with a significant difference
between the highest and lowest socio-economic quintiles [29]. In a context where access to
healthcare is affected by place of residence (urban/rural), gender, and socio-economic status for
the general population, people with disability would find it significantly more challenging to
access health care. South Asia harbors a significant proportion of global visual impairment [30],
and hearing impairment [31]. It is interesting to note that a cohort study over a twenty-year
period reported that Indian Asian PWD were significantly more likely to have poorer health
outcomes compared to Europeans in the UK [32].

The review looks at the available evidence on magnitude of disability in the South Asia region
and health outcomes and barriers to accessing health care in the region.

5. Scope of the Review

In conducting the review, the following were included:

1. Literature published since 1998 AD (20 years reference period) from South Asia and
other low- and middle-income countries.
2. Data from population-based studies so that a comparable denominator was available.
3. Studies reporting on all age populations or adult (18+ years) populations.
4. Different types of study instruments were included in the review. This included health
surveys, targeted disability surveys, tools like the Rapid Assessment of Disability (RAD)
tool, Census estimates and Washington Group (WG) criteria.

Studies including specific population segments (only children; those aged 50+ only; specific
occupational categories etc.) or specific impairments were excluded.

6. Magnitude of Disability in South Asia Region

As in the rest of the world, estimates of the prevalence and magnitude of disability in the South
Asia Region are highly variable due to the lack of standardization of definitions of disability.
Estimated prevalence rates of disability in the region range from a low of 1.9% (Census—all
age), [33] to a high of 12.2% (Survey combining clinical examination with Washington Group
(WG) criteria among 18+ years population [11]. Most of the studies in South Asia (Table 1) were
from India. There was at least one estimate from all the countries in the South Asia region.

Table 1
Available Disability Data from South Asia.

Except in one study from India, [38] in all other studies, tools which measured functional status,
(Rapid Assessment of Disability—RAD; Washington Group—WG) reported a higher prevalence
than those which recorded self-reported impairments as a proxy for disability in census (Table
1). However in estimates collated from Sri Lanka, a wide variation was observed using the same
tool (WG) at the same time period (2014–2015) [33,41]. This difference persisted despite the age
cut-off adopted (all age versus 18+ years). Therefore, standardization of tools accompanied by
adequate training to administer the tool and adequate quality assurance checks help generate
valid data. The estimates from South Asia were comparable with reported prevalence rates from
other LMICs (low- and middle-income countries) across the globe [11,28,42,43,44]. The
available evidence therefore points to the situation being similar in most LMICs, but translating
the prevalence rates into numbers results in South Asia harboring the largest pool of PWD in the
world.

7. Health Status of People with Disability

Data on the health status, risk of disease and health outcomes of people with disabilities were
compared with those without a disability (Table 2). Available evidence clearly indicates that the
health needs of PWD were significantly more than those without a reported disability in India
[14,16,36,37,38,45]. Respondents with disability also reported significantly more unmet needs
compared to those without a disability [36,37,38]. In Afghanistan, it was observed that PWD
visited health centers more often than those without a disability and the out-of-pocket expenses
for PWD were higher [46]. A study from Bangladesh observed that PWD were 14 times more
likely than others to seek treatment [47].
Table 2
Health Outcomes in Persons with Disability.

In the South Asia region, studies from India showed that the prevalence of non-communicable
diseases (NCDs) such as diabetes and hypertension were significantly higher among PWD
[14,15]. Similar findings were reported from other parts of Asia (Korea) too [10]. Physical
impairments constitute a high proportion of PWD and with a sedentary lifestyle; risk of NCDs
among these population subgroups will be high. This high risk of NCDs escaped attention earlier
but with an increasing emphasis on these diseases and the flagging of the control of NCDs by the
United Nations as part of the Sustainable Development Goals (SDGs), it is important to target
PWD as a high-risk group for NCDs and SDGs in the future. This realization needs to be
supported with uninterrupted medical supplies to ensure that the health of PWD is promoted.

A poorer health status of PWD was also observed in other LMICs too [8,23,26]. In South Africa,
people with disability had a higher rate of unmet health needs as compared to non-disabled [19].
In Sierra Leone, persons with disabilities were more likely to use medication found in street
markets (p< 0.011) and to try religious cures/prayers (p < 0.0001) as part of their medical
treatment compared to those without a disability [26].

8. Specific Health Needs of Women with Disabilities

Among people with disabilities, women with disability are a special group as they have
additional sexual and reproductive health needs and prenatal, natal, and post-natal care needs
compared to other segments of the population. A study from India showed that a significantly
lower proportion of women with disability experienced pregnancy (36.8%) compared to women
without a disability (X2 –16.02; p < 0.001) [15]. The study also observed that there were no
statistically significant differences between women with and without a disability with regard to
utilization of antenatal care and pregnancy outcomes [15]. Similar observations have been
reported from high-income countries also.

9. Barriers to Accessing Health Care

Three major domains govern access to health care for PWD:

1. Individual characteristics including socio-economic factors and type and severity of

impairments.
 2. Nonmedical systemic factors including architectural designs, infrastructure, and
affirmative action initiatives.
3. Provider perspectives and appreciation of the needs of PWD among the providers.

9.1. Individual Characteristics

Distance to a health facility, costs of care, transportation facilities, and lack of awareness about
availability of services were flagged as major barriers to accessing health care in South Asia
(Table 3) [14,35,36,37]. Cost of care and distance were the most significant individual level
barriers reported across populations in other LMICs (low- and middle-income countries)
[13,17,19,23].

Table 3
Barriers to accessing healthcare services in South Asia.

9.2. Nonmedical Systemic Factors

There is limited evidence on the non-medical systemic factors from South Asia [14]. The limited
available evidence showed that inadequate equipment/hospital infrastructure were of concern to
PWD in India. In Pakistan, PWD with physical impairments reported significant physical
barriers, due to the built environments, in accessing health services [48]. These included
transportation, and outdoor and indoor environments in which health services are delivered,
including buildings, waiting areas, washrooms, examination tables, beds etc. [48].
Transportation, and attitude of family members and the community were the main environmental
barriers reported in Nepal [49].

PWD have poor access to preventive health services, which are a good measure of equity. In
Pakistan, PWD had poor access to reproductive health care services and insufficient knowledge
of preventive measures for tuberculosis, hepatitis, and HIV/AIDS [48].

9.3. Provider Perspectives of People with Disability

Available literature on the provider perspectives regarding PWD from South Asia has
demonstrated a general lack of appreciation of the needs of PWD by providers and
administrators. Ill-treatment by providers and the negative perceptions of PWD were important
barriers to accessing services in South Asia [14,37]. In Nepal, providers’ attitudes towards
disability were found to be negative with poor knowledge and skills about providing services to
PWD [50].

10. Financial Barriers and Cost of Care

The inequities in access for PWD in many low- and middle-income countries gets camouflaged
by the inadequate attention to health in general for the entire community with low allocations for
health care in these countries. For example, in Afghanistan, the overall rate of health care
utilization is low (25%) and this reduces the inequity differentials among population segments
[51]. In India, catastrophic health expenditures increased over the period 1994–2014 across all
sections of society but the households with an elderly person had a 3.6 times higher risk [52].
Disability is age-related and tends to be concentrated at older ages. Corroborating this point,
another study from India observed that out-of-pocket expenditures were higher among
households with a disabled elderly member [53]. The household income and expenditure survey
data from Sri Lanka observed that multidimensional poverty among the households with disabled
persons was higher than among other households [54]. Marginalized and disadvantaged groups
in many LMICs face difficulties in accessing health services and this affects many sections of the
population including PWD [23].

PWD are mostly dependent on their families for support including health care. In Pakistan 62%
of men with disability and 87% of women with disability were financially dependent on their
families and relatives [48]. In Nepal lack of funds for health expenses and the low socio-
economic status of families of PWD were flagged as major financial barriers [49]. There is
evidence to this effect from Nepal [55].

All countries in the South Asia region are LMICs. Population access to health care in general in
these countries is sub-optimal and those with and without a disability are both disadvantaged. In
such a milieu, all segments of the population have lower health expectations, as was
demonstrated from a study in India [56].

The cost of health care is also a major concern for people with disability. A recent study from
Bangladesh, analyzing data from the Bangladesh Household Income and Expenditure Survey,
observed that out-of-pocket payments were significantly higher among individuals who reported
a disability [57]. This data emphasizes the need for targeted financial protection for persons with
disability, especially for the poorer populations. Similar observations were reported from
Afghanistan where out-of-pocket expenditures were significantly higher for PWD [46].

11. Discussion
The review documents that people with disabilities in South Asia have a high risk of suffering
health problems, especially NCDs like diabetes, hypertension and ‘feeling low’ (as a proxy
indicator for depression) etc. People with disabilities in South Asia have the same general health
needs as others and they too need the same care for disease conditions like diarrhea, respiratory
infections, viral fevers, malaria etc. However, unlike those without a disability, people with
disability have additional health care needs. They need assistive devices/management for their
underlying impairments, like polio, cleft palate, intellectual impairments, learning disabilities
etc. They have a heightened risk of co-morbid conditions, especially non-communicable diseases
and have more need of a counselling interface compared to those without a disability. Studies
from South Asia and other LMICs show that the burden of poor health is accompanied by longer
hospital stay [10,18] repeated hospitalization [9,13,14], and need for medication [14]. In
Bangladesh, 85% PWD with physical impairments reported suffering from a general illness in a
six-month recall period [58].

The travesty is that though people with disability have a higher risk of adverse health outcomes,
their access to health services is hindered due to reasons beyond their control. This plays out at
all levels of health care from the primary to the tertiary level.

The Convention on Rights for Persons with Disability (CRPD) obligated states to provide equal
access to health care for people with disabilities [59]. Article 25 of the declaration is devoted to
health and states that health is a right for equal access to the highest attainable standard of health
for people with disabilities and that governments should provide health services adapted to the
needs of people with disability [58]. Sustainable Development Goals (SDG) also recognize that
the inclusion of people with disabilities is critical for sustainable development [60]. The SDGs
stress the need for improving access to healthcare services for all through Universal Health
Coverage (UHC) [61]. This includes all the population sub segments including people with
disability. As has been stated by some experts, if people with disabilities are not reached by
health care initiatives it reflects on the fact that these efforts are ineffective [62]. Interestingly a
comparison of findings from two representative household surveys in Afghanistan in 2005 and
2013 revealed that the perceived availability of health care and positive experience with
coverage of healthcare needs worsened significantly over the period for people with disabilities
[63]. This was despite the availability of a basic package of health services for all.

If the health needs of people with disability are to be prioritized, inclusive health is crucial.
Inclusive health encompasses the entire gamut of health care from policies to service delivery
[64]. Inclusive health enshrines the principles of efficacy, equity and affordability [64]. The
ethos of inclusive health is not just the provision of health services (which may or may not be
accessible to people with disability) but affirmative action to ensure that people with disability
along with others who are disadvantaged, and discriminated by society receive the due health
services so that they can contribute to the overall development of a community. The focus of
public health is to respond to the emerging needs of populations including people with disability.
Therefore, public health should engage with all stakeholders including people with disability to
reduce ill-health, promote optimal health and ensure improved quality of life so that people with
disabilities are mainstreamed and not left behind due to their health status.

12. Conclusions
South Asia has a significant number of the global people with disability. People with disability in
the region report adverse health outcomes and major challenges in accessing health services.
These relate both to the health provider prejudices and attitudes, and the inadequacies in skills
and infrastructure in caring for people with disabilities. There is an urgent need to find locally-
affordable, contextually-specific interventions to improve the quality of health of people with
disabilities in the South Asia region.

Funding
This work received no external funding.

Conflicts of Interest
The author declares no conflict of interest.

Article information
Int J Environ Res Public Health. 2018 Nov; 15(11): 2366.
Published online 2018 Oct 26. doi: 10.3390/ijerph15112366
PMCID: PMC6265903
PMID: 30373102
Venkata S. Murthy Gudlavalleti1,2,3
1
Indian Institute of Public Health & South Asia Centre for Disability Inclusive Development & Research,
Hyderabad 500033, India; gro.hhpii@svg.yhtrum; Tel.: +91-40-49006001
2
Public Health Eye Care & Disability, London School of Hygiene & Tropical Medicine, London WC1E7HT, UK
3
Indian Institute of Public Health, ANV Arcade, 1 Amar Cooperative Society, Kavuri Hills, Madhapur, Hyderabad
500033, India
Received 2018 Sep 7; Accepted 2018 Oct 16.
Copyright © 2018 by the author.
Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and
conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
Articles from International Journal of Environmental Research and Public Health are provided here courtesy
of Multidisciplinary Digital Publishing Institute (MDPI)

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