Access to health care and employment status of people with disabilities in South India, the SIDE (South India Disability Evidence) study

The World Health Report estimates that 15% of the global population has some degree of disability, defined in terms of functional limitation [1]. However analysis of data from 15 low and middle income countries shows that the prevalence varied significantly from 3.08% in Laos to 16.21% in Bangladesh [2]. The difference in prevalence could be due to differences in prevalence of the underlying conditions causing disability, differences in demographic characteristics like age and contextual factors and cultural interpretation of the meaning of disability [3].

Rates of disability are increasing due to population ageing and increase in chronic health conditions [1]. People with disability constitute one of the most marginalized and socially excluded groups in any society [3]. Studies also show a positive correlation between disability and poverty [3–5]. Data from the World Health Survey (2002–2004) from 54 countries reveals that disability prevalence is much higher in lower and lower-middle income countries compared to high income countries [6]. The exact magnitude of disability in India is not known as different definitions have been used by different groups. The World Bank estimated that 8-10% of the Indian population was living with disability in 2003 [7]. However the Census of India, 2011 reported the prevalence to be 2.21% [8].

The World Report on Disability highlights the fact that many people with disability do not have equal access to health care, education and employment [1]. The Report also emphasizes that people with disabilities have less access to health care services and therefore experience unmet health care needs [1]. Data shows that people with disabilities have greater unmet needs and services than their counterparts without disabilities [9]. Similar findings have been reported in a number of countries [10–12]. People with disabilities have difficulty in accessing quality health care [13]. This also results in people with disability seeking health care from unqualified practitioners in some countries [14].

Studies show that the commonest reason why people with disabilities do not access health care when it is needed is due to the cost of health care [1, 10, 15]. At the same time, studies also show that despite all their needs not being met, people with disabilities use hospital services significantly more compared to people without a disability [11, 16–19]. An extensive analysis shows that people with disabilities consistently had higher total health expenditures, out-of pocket (OOP) spending, and burden compared with their counterparts without disabilities [20]. The World Report on Disability also emphasizes that affordability of health services and transportation are two main reasons why people with disabilities do not access needed health care in low-income countries: 32-33% of non-disabled people are unable to afford health care compared to 51-53% of people with disabilities [1].

Evidence also shows that women with disability are most disadvantaged in most societies [2, 6, 11, 15, 21–27]. Over the past decade research addressing health of women with disabilities and addressing topics such as access to care, health care utilization, and the prevention of secondary conditions has been on the rise [28, 29]. However there is a distinct lack of evidence from population-based studies on the rates of access or unmet need for health services among people with disabilities in India. The present study was therefore undertaken to understand the health needs of people with disabilities, and barriers to accessing health services, as the provision of universal health care should address the needs of the most marginalized sections of the society if it has to be successful.

The present study was conducted over a ten month period in 2012, to identify people with disability and ascertain their employment and health status, and access to health care and health service utilization. Their findings were compared with a group of people without disability identified through a population-based survey and disability records.

Among the people with disability, 88.4% (742) had a physical impairment, 4.8% (40) had severe hearing impairment, 4.5% (38) had severe visual impairment/ blindness and 2.3% (19) had intellectual impairment.

Among the persons with disability, 9.5% (80) had multiple impairments. Half of them were due to hearing impairment and speech/communication difficulties.

There were 63 (7.5%) persons where a proxy respondent from the household was required to provide answers to the questionnaire regarding barriers. Among them, 63.4% (40) were suffering from hearing impairment with or without speech or communication disorders, 30.2% (19) with intellectual impairment and 6.3% (4) were suffering from cerebral palsy (included as physical impairment).

Access to quality and timely health care is critical for all populations. For people with disabilities who may have complex health conditions it is even more important. Understanding the health needs of people with disabilities, and barriers to accessing health services is of seminal importance if governments are to be responsive to needs of people with disabilities.

The study has highlighted challenges faced by people with disability in accessing employment opportunities, accessing health care and suffering from chronic non-communicable diseases. The study is the first effort in India to bring these challenges to attention. Health status and quality of life of people with disability are of immense public health concern. It is abundantly clear that Millennium Development Goals cannot be achieved unless people with disability receive adequate attention [30]. Many countries are now working towards ensuring universal health coverage for their populations. Universal health care is a value-addition if it reduces catastrophic health expenditure and ensures equity and access to all segments of the population. People with disabilities require the same range of health services for the diagnosis and treatment of disease, or the promotion of health as people without disabilities [31]. In the absence of equal access to health care, people with disabilities are at a serious risk of delayed diagnosis and secondary co-morbidities [32].

The observations from the present study have implications on the provision of health services for people with disability. A major finding of the study was that people with disability reported visiting a health care facility significantly more often than people without a disability. Increased use of health care services by people with disabilities has also been reported from some countries earlier [11, 16–19, 24, 33, 34]. If the unmet needs of people with disability have to be met, innovative strategies will need to be devised to reach out to people with disabilities, especially women who despite having an increased need may not be able to access services. Our study points to the lack of understanding of employers regarding health needs of people with disabilities as is evidenced by perceptions of the people with disabilities. People with disabilities also expressed concerns regarding the behaviour of the staff at the health centres and the infrastructure at health facilities. This reveals a huge gap in the expectations of people with disabilities and the actual provision of services. Efforts will need to be made to bridge this gap.

People with disabilities had very high odds of suffering from chronic diseases like diabetes and depression. Very few studies have reported on the link between disability and chronic disease earlier [24, 35]. Health promotion programs and provision of affordable drugs for people with disabilities will need to be tailored to the needs of this population and by using communication channels that are appropriate and acceptable to people with disabilities.

Our study also highlights an interesting dichotomy as people with disability report using more health services, especially in-patient care while also stating that they do not receive care when they need it. Similar findings have been reported in a study from Korea [15]. This emphasizes that people with disabilities have significant unmet need for health services even though their utilization of hospital services may be higher.

We also observed that people with disabilities encountered a range of barriers in accessing health care facilities including lack of information and physical barriers, inadequate personal assistance, affordability, limitations of resources and inaccessible infrastructure and non-friendly environments. Irrespective of sex, if people had a disability, they faced barriers in accessing health services. If universal access to health care is to be ensured and if access to equitable health as enshrined in the United Nations declaration is to be effectively provided, people with disabilities will need to be empowered to unshackle the barriers to accessing health care. Creating an enabling environment for this to happen is a critical input that is needed in India, at this point in time. India ratified the UNCRPD in 2008 and has been providing a legal framework for implementation of services for people with disabilities through the adoption of the Persons with Disability Act, 1995 [36]. Unfortunately the level of awareness regarding the provisions of different services under the Act is low even among health care professionals working with people with disability in India [37]. Therefore concerted action should start with changing the knowledge and perceptions of the health care professionals themselves, if an enabling empowering environment is to be fostered in the near future.

This study provides evidence on the various challenges that people with disability face in accessing health-care and employment opportunities. It also highlights the increased risk of chronic non-communicable diseases that the people with disabilities face, as against people without disability. These findings have major public health implications and health planners and administrators need to keep in mind, people with disabilities, when they devise and implement strategies for better health care services. This holds good for ensuring, minimizing barriers for accessing employment opportunities too. It is also important that in all decisions concerning them, people with disability should be consulted as the essential stake holders before any intervention is finalized.