An Analysis Upon Disabled Peoples In India: Outcomes and Policies

India has more than 20 million persons living with disability (Census 2001). But low literacy, employment rates and widespread social stigma are making disabled people among the most excluded in society. Children with disabilities are less likely to be in school, disabled adults are more likely to be unemployed, and families with a disabled member are often worse off than average. Indian society has a strong religious base and traditional outlook. Family is the key unit in all social interactions. Moral values like equality, tolerance, and acceptance of others are all pervaded in social life and regarded as the highest human possessions. Contrary to this, the condition of disabled people creates a gloomy picture. Traditionally disability is perceived as a result of i) A curse from God, ii) A black magic performed by an enemy or iii) One's own deeds from last births. It affects the family image in society and results in to family turmoil and tension. The level of acceptance of disabled person among family members is very low. In many cases, one could see two extreme situations; either neglecting the person with disability or over protecting. In many cases, family tries to hide the person. They are often pitied for what they have and looked as a burden on family. Day by day however, their condition has been improving due to many factors like active roles of INGO/NGO in influencing government agenda of action, development of new disability policies, more awareness about disability related issues, increasing level of education, role models from disabled community; to name a few. With better education and more access to jobs, people with disabilities can generate higher growth which will benefit the country as a whole. India has four dedicated Acts related to disability besides many constitutional provisions and in 2003 the Ministry of Social Justice & Empowerment (MSJ&E) published the 'National Policy for Persons with Disabilities' (the 'Disability Policy'). Further, India adopted a proactive approach in this area and is a signatory to many international declarations on disability. In October 2007, India has become one of the first few countries to ratify the 'UN Convention on Rights of Persons with Disabilities'; a move that shows its willingness and commitment towards the issue. Despite differing estimates, empirical evidence as of 2007 suggests that between 4 to 8 percent of the population in India is comprised of people with disabilities. This translates into 40-90 million people, a substantial number. People with disabilities in India are subject to multiple deprivations and limited opportunities in several dimensions of their lives. Households with people with disabilities are 25 percent less likely to report having 3 meals per day year around, more likely to have members who are illiterate and children who are not enrolled in school, have much lower employment rates, and have limited awareness of entitlements and services available by law for people with disabilities. Not surprisingly, these The experiences of people with disabilities are in stark contrast to the fact that certain government departments in India such as the education sector have been viewed as progressive in their delivery of options to children with distinctive needs (World Bank 2007). Disability statistics were collected in the Census of India from as early as the late nineteenth century and the country had special schools that catered to the needs of people with disabilities from around the same time period. However, integration of people with disabilities and policy commitment to their participation as equals in society occurred only twenty-five years ago with the passage of four important laws. These included the Mental Health Act of 1987, the Rehabilitation Council of India Act of 1992, the People with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act of 1995 (PWD Act), and the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act of 1999. India also ratified the UN Convention on the Rights of Persons with Disabilities in 2007. The PWD Act of 1995 was the key central legislation that provided certain entitlements in theareas of education, employment and affirmative action, and other privileges in prevention and early detection of disabilities. The PWD Act of 1995 also provided for non-discrimination in access to public modes of transportation such as railways and buses by requiring that these vehicles be modified in ways to make them accessible to people in wheelchairs, and called for the installation of ramps in government buildings and public primary health centers as well as the provision of braille signs and auditory signals at traffic lights and intersections. Under the PWD Act, the establishment of these entitlements to persons with disabilities was conditional on being “within (the government’s) limits of economic capacity and development”. How does one reconcile the vulnerabilities of Indians with disabilities in practice with the relatively advanced set of law (for a developing country) on paper? This is an important question since widespread hardship among people with disabilities persists in India despite the extant legislation. Under the Constitution of India, obligations to people with disabilities fall under the jurisdiction of state governments and the State List under “Relief of people with disabilities and unemployable”.Hence, state governments in India are primarily responsible for implementing laws and distributing social welfare benefits to people with disabilities. States also have considerable leeway in independently deciding priorities among issues related to disability, and in creating legislation suited to the context of their environment’s socio-cultural background (Bagchi 2003, Sinha 2004). By using empirical methods that recognize the role of states, this research documents considerable variation across sub-national entities in a basic measure of economic well-being – average monthly per capita expenditures in households with people with disabilities. The results others in the delivery of their obligations. Evidence of considerable variability at the state-level in providing for people with disabilities is evident when one notes that some states have been pro-active in increasing awareness among people with disabilities about commitments and entitlements (Tamil Nadu, Karnataka, and New Delhi) whereas others have lagged in implementing many of the basic entitlements enshrined in the PWD Act of 1995 (Bihar, Maharashtra, Orissa, Uttar Pradesh). In fact in Uttar Pradesh which is the most populous state in India, 80 percent of households with people with disabilities were unaware of the process of certification as a person with disability. Further, there appears to be little correlation between the institutional capacity of a state and provision of services to persons with impairments. For example Chhattisgarh, a relatively new state, has a well-thought out state-level disability policy that is often touted within India as a “best practice framework” and model for other states. Alternatively Gujarat, a more established state, has demonstrated little commitment in implementing a key requirement of the PWD Act of 1995 (has had only one meeting to facilitate center-state coordination in distribution of benefits as of 2003). Before we address the mainstreaming of disability from sort to self-determination as well as the salience, success and failure of modern disability welfare policies, some thoughts about what disability actually means are at place: How can this most complex phenomenon be defined and measured – and how can people, their needs, hardships and behaviour, their restricted employment opportunities, life chances and their compensation requirements be classified accordingly? What are the problems that these definitions, measurements and classifications involve, and how do these problems impact on disability entitlements? Medical complaints, sickness, illness, chronic disease, impairment, functional limitations, disability, and incapacity to work are ill-defined and complex phenomena. Disability in particular is a slippery and potentially expansive category: it is inherently subjective, ambiguous, fuzzy, elusive and inevitably problematic to define and measure. Disability cannot be observed directly but must be inferred from presumed causes (impairments) with distinct consequences, namely a restriction or incapacity to perform normal work roles. Health impairments causing work disability must be certified medically, though clinical certification of impairment is necessary but not sufficient for work disability or eligibility for disability benefits. Assessing disability requires, in addition, a judgment on the severity, curability or irreversibility / permanence of this health condition as well as its

Conceptions of disability – and adequate responses to it and their affordability – change over time, and clinical judgements on which eligibility is based are (apart from highly different individual tastes and social values of the examiners) notoriously unreliable. “Deborah Stone (1985) shows how unreliable clinical judgements are. She cites comprehensive research on the accuracy and consistency of disability determinations in the United States: In one study clinical teams and agency teams independently came to opposite conclusions on more than one-third of a sample of 1,500 cases. In another study comparing different state agencies using the same criteria there was complete agreement on disposition in only 22% of the cases. The limits of diagnostic procedures combined with the biases of doctors, administrators, courts, public opinion, and the uneven political pressures of applicants themselves assure very limited reliability and equity of decisions regarding disability benefits.” The official estimates of disabled persons in India, obtained through the latest Population Census and National Sample Survey Organisation‟s comprehensive surveys on disability, put the figure as about 21 million (roughly around 2 percent of the population) at the beginning of the new millennium. However, estimates vary across sources and a new World Bank Report1 on disabled persons in India, has observed that „there is growing evidence that people with disabilities comprise between 5 and 8 per cent of the Indian population (around 55 – 90 million individuals). There is a common concern that disabled persons are among the most excluded ones in the development process of the country. For an effective and efficient policy intervention to improve the lots of the disabled persons, it is of utmost importance to get a clear idea of the dimension of disability in India. Although government and the public sector would have to play a key role in this endeavour, it may be neither feasible, nor desirable for them to do it all. Further, there is wide heterogeneity in the situation and the policy requirements of different groups of disabled persons in India. There are major differences in social attitudes to different types of disability, coupled with variations due to gender, class, place of residence (rural / urban) etc. Population Census and NSS surveys are the major two sources of official statistics in India. But the two differ substantially in respect of overall estimates of persons with various types of disability and their composition, mainly due to differences in the concepts and definitions as also the data collection methodologies. Therefore in this section dimension of

INDIA

Although past work has noted the important but incomplete role played by the state in delivery of services and entitlements, there is little rigorous work in economics on state-level variations in indicators of well-being among people with disabilities in India. Not surprisingly, disability research in developing countries in general has tended to focus on the link between disability and poverty. This is particularly true for India. Thomas (2005) argues that poverty is one of the biggest causes and consequences of disability in India. People with disabilities in India are among the poorest, often live in rural areas, often are disabled at birth or before school age, are mostly uneducated and widely unemployed. Using 2006 data from Vietnam, Mont and Cuong (2011) show the strong inter-linkage betweendisability and poverty when the additional cost of living with a disability is taken into account. This is particularly true in households with children with disabilities. Filmer (2008) argues that among school-age children (6-17 years) across 13 developing countries, disability-based school participation deficits are often larger than those associated with characteristics such as gender, residence in rural areas or the household’s economic standing. Furthermore, Cuong and Mont (2011) notes that in families where a parent is disabled, non-disabled children tend to have lower primary and secondary school participation rates. Part of this is attributed to the fact that in such households, child’s time substitutes for parental time in income generation and household production. Among children with disabilities in India, girls receive less care than boys and are more likely to die as a consequence. Among children with disabilities, girls also tend to receive less education than boys. In an attempt to improve the educational outcomes of children with disabilities, the government of India has emphasized the development of “special schools” and alternative systems such as informal education centers. However, education experts have criticized the widespread development of such schools and systems as the quality of education offered at these institutions is sub-par, and because attendance at these facilities perpetuates inequalities. Moreover, the gender gap in schooling measures remains evident in these institutions as they make little attempt to encourage the schooling of girls with disabilities. The particular susceptibility of girls with disabilities resonates with other findings for women with disabilities in India. Mehrotra (2004) argues that women with disabilities in India face double to hide physicalimpairments if their spouse is still alive (older married women are less likely to report disabilities), and because of cultural differences, older women in northern India appear to be more disadvantaged as compared to their counterparts in the south. Furthermore, there is evidence that rural women with disabilities are most likely to be disregarded by survey enumerators. A reason for the inter-linkage between disability and poverty is that people with disabilities have significantly lower employment rates on average, even though the large majority of this population is capable of working. Using a cross-sectional data set from the state of Tamil Nadu, Mitra and Sambamoorthi (2008) shows that gaps in employment between disabled and non-disabled males cannot be explained by differences in education, health or productivity. The study arrives at this conclusion as a selectivity-corrected wage equation indicates that wages are not statistically different between disabled and non-disabled males. Alternatively, the lower employment probability of people with disabilities is attributed to differential returns to characteristics and from discrimination in employment opportunities. Other studies that have focused on the employment outcomes of people with disabilities in India include Thompkins (2010). In a study of the Indira Kranthi Program which facilitates micro-lending through self-help groups to people with disabilities in rural Andhra Pradesh, it was found that although the program resulted in increased borrowing, education and asset ownership, there was negative to zero effects on the labor market participation of the beneficiaries. The presence of members with disabilities in a household also has important implications for the labor supply of other household members. Estimates from Uttar Pradesh and Tamil Nadu show that about 45 percent of households with people with special needs report another adult being absent from work to care for the person with disability. Complicating the assessment of the security of people with disabilities in India is the relative dearth of nationally representative surveys with detailed data on this population. As of the last decade, there are only two such surveys – the National Sample Survey (NSS) of 2002 and the Census of India from 2001. Both sources have different definitions for the major types of impairments; the NSS is judged to be better than the Census in terms of hearing, speech, and locomotive impairments. In terms of visual impairments, the NSS 2002 survey disregarded people wearing spectacles and contact lenses but the Census did not. Relying on the relative strengths of the NSS versus the Census, we use the nationally representative information in the former to contribute to research on disability in India in two ways. First, we offer one route special needs in every-day life by focusing on state-level heterogeneity in the distribution of commitments to the disabled. This is accomplished by allowing for state-level differences in the behavior analyzed, and to the best of our knowledge, is the first study to explicitly model state-level variation in outcomes for people with disabilities in India. Second, within this state-specific structural framework, we consider differences in results by gender and age of the person with disabilities. Although it is qualitatively recognized that in the population of people with disabilities, households with female members and children with disabilities may be most vulnerable, this study breaks new ground by quantitatively assessing how large the differentials actually are for such households in comparison to those without persons with disabilities.

This section explores the policy and institutional framework for promoting full participation of PWD in society. Overall, India has one of the more developed national policy frameworks for disability of developing countries, though there remains scope for improvement, in particular at the sub-national level. However, as in many areas of social policy, challenges of institutional capacity and coordination have contributed to implementation that frequently leaves much to be desired. The intersection of policy and institutions is therefore critical to understanding the factors that drive current outcomes for PWD and might contribute to improving them. India has a long experience of policy and practice with respect to disability, including collection of census information on disability from as early as 1872, and special schools and institutions operating since the 19thcentury. Like many countries, it also had specific provision for people with mental illness and retardation under the Indian Lunacy Act of 1912. The Constitution of India acknowledged also general state obligations to PWD in Article 41, and the State List under “Relief of the disabled and unemployable”. Subsequently, specific measures such as employment concessions were introduced from the 1960s. However, it was not until the 1980s that policy commitment to full participation of PWD in Indian society evolved. The outcomes of this policy shift were realized in several key pieces of legislation: (i) the Mental Health Act, 1987; (ii) the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 (PWD Act); (iii) the Rehabilitation Council of India Act, 1992 and amended in 2000 (RCI Act); and (iv) the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 (National Trust Act).

many aspects of PWD lives are addressed, including societal attitudes. At the same time, the direct linkage in the Act between definitions of disability and entitlements necessitates a definition of disability which derives from threshold levels of physical and mental impairment which are defined in a largely medical sense. While the philosophy of the Act therefore represents a major step forward in disability policy in India, its underlying philosophy can be considered a hybrid between medical and social models of disability. Broadly, the entitlements and commitments towards PWD under the Act can be divided into two main groups: (i) entitlements which are absolute and thus in nature of legal rights. Some of these existed as rights prior to the Act but were reiterated or strengthened in the Act itself (and have in some cases been refined subsequently); and (ii) commitments that are given either in rather general terms or with the explicit proviso “within the limits of [governments’] economic capacity and development”. These can be described as “contingent entitlements” under the Act and are not unqualified rights. The division is not entirely clearcut, as subsequent jurisprudence has in some cases strengthened general commitments. In a number of cases, follow-up action is also anticipated by states or other relevant authorities. Despite the PWD Act being a ground-breaking piece of legislation, there remain a number of policy shortcomings in its design that are worth highlighting. These include both general issues which apply to several areas of the Act, and others which relate to specific sectoral heads. A number of them were raised by GoI’s own Amendment Committee in 1999, but have not subsequently found their way onto GoI’s agenda. the Act covers only designated groups of PWD, which is by no means completely inclusive of categories of disability. This is in part driven by the linkage in the Act between the relevant legal definition of disability and the entitlements under the Act that flow from that. There is a natural reluctance on the part of policymakers to commit to entitlements for a wide group in the face of limited financial and other resources. Nonetheless, there is no reason in principle why the definitional and entitlement aspects of the Act need be completely synchronized. Providing for a more inclusive definition of disability while retaining more restrictive entitlements by disability type has been proposed by the Amendment Committee for the PWD Act. The Committee proposed expansion of the Act’s definition of disabilities to include multiple disability, autism, thalassemia, haemophilia, filiariasis, cerebral palsy and moderate/severe speech impairment. It also provided a more precise definition sensible. On the latter point, amendments to the Act proposed by the Ministry in 2006 also represent a step forward in trying to have a more workable definition of mental illness. a second overarching policy issue with the Act relates to commitments which are subject to the “limits of economic capacity and development” of the relevant authorities. The formulation represents an attempt to balance policy commitments and fiscal and institutional realities. While the approach is reasonable, the Act fails to outline any process for determining broadly what are the appropriate levels of policies and interventions which might be expected at different levels of economic development within India. This could not, of course, be a very precise process, but without some indication of what are reasonable expectations of states at different levels of economic development, it is difficult to know what constitutes reasonable compliance effort on the part of the authorities. As a result, what are justiciable rights in sections where this proviso is used remains quite uncertain. The uncertainty is significant, as this approach is used in important sections such as identification of PWD, prevention and treatment of disability, and access rights of PWD. In the absence of a process for benchmarking reasonable performance by states on the contingent entitlements of the Act, the courts have become the main point of reference for PWD to enforce performance by governments. In this respect, the courts have sought to promote the rights of PWD in a variety of areas. The courts have tried to balance PWD entitlements with fiscal concerns. However, the resources and time needed to access the courts effectively are significant, and are likely to exclude many PWD.

The Constitution of India applies uniformly to every legal citizen of India, whether they are healthy or disabled. Under the Constitution the disabled have been guaranteed the following fundamental rights: 1. The Constitution secures to the citizens including the disabled, a right of justice, liberty of thought, expression, belief, faith and worship, equality of status and of opportunity and for the promotion of fraternity. 2. Article 15(1) enjoins on the Government not to discriminate against any citizen of India (including disabled) on the ground of religion, race, caste, sex or place of birth. any of the above grounds in the matter of their access to shops, public restaurants, hotels and places of public entertainment or in the use of wells, tanks, bathing ghats, roads and places of public resort maintained wholly or partly out of government funds or dedicated to the use of the general public. Women and children and those belonging to any socially and educationally backward classes or the Scheduled Castes and Tribes can be given the benefit of special laws or special provisions made by the State. There shall be equality of opportunity for all citizens (including the disabled) in matters relating to employment or appointment to any office under the State. 4. No person including the disabled irrespective of his belonging can be treated as an untouchable. It would be an offence punishable in accordance with law as provided by Article 17 of the Constitution. 5. Every person including the disabled has his life and liberty guaranteed under Article 21 of the Constitution. 6. There can be no traffic in human beings (including the disabled), and beggar and other forms of forced labour is prohibited and the same is made punishable in accordance with law (Article 23). 7. Article 24 prohibits employment of children (including the disabled) below the age of 14 years to work in any factory or mine or to be engaged in any other hazardous employment. Even a private contractor acting for the Government cannot engage children below 14 years of age in such employment. 8. Article 25 guarantees to every citizen (including the disabled) the right to freedom of religion. Every disabled person (like the non-disabled) has the freedom of conscience to practice and propagate his religion subject to proper order, morality and health. 9. No disabled person can be compelled to pay any taxes for the promotion and maintenance of any particular religion or religious group. 10. No disabled person will be deprived of the right to the language, script or culture which he has or to which he belongs. 11. Every disabled person can move the Supreme Court of India to enforce his fundamental rights and the rights to move the Supreme Court is itself guaranteed by Article 32. property is not a fundamental right. Any unauthorized deprivation of property can be challenged by suit and for relief by way of damages. 13. Every disabled person (like the non-disabled) on attainment of 18 years of age becomes eligible for inclusion of his name in the general electoral roll for the territorial constituency to which he belongs.

Disability policy has two goals which are at times in conflict. Income security – the simpler goal – can be provided with cash and in-kind benefits. Adequate food, housing, and health care can assure disabled persons a decent life free from fear and want. Beyond income security is the goal of complete integration into social and economic life, allowing persons with disabilities a full range of opportunities to participate in the economy and society at large. Removing barriers to participation that plague disabled persons not only improves their lives but society as a whole by increasing productivity, lowering unemployment, and reducing reliance on government transfers. An inherent tension exists between the goals of integration and income security. Policies aimed at generating full participation of people with disabilities often downgrade the safety net, creating more risks. People who are not successful at achieving a certain level of integration can suffer. Yet, programs that guarantee benefits can serve as a disincentive to participate in the labor market. The challenge is to provide supports and incentives that facilitate full participation, while ensuring the means to live a decent life regardless of any disability. Indeed, the focus of disability policy throughout most of the OECD countries has recently shifted away from guaranteed income security and towards economic integration. For this shift to be successful increased responsibilities for disabled persons must be accompanied by the guarantee of adequate supports. These supports consist of adequate cash benefits, services, incentives for workers and employers, antidiscrimination laws, and societal attitudes that promote full participation in the labor market. The movement towards integration, championed by disabled people, has been spurred on from an increased appreciation for the nature of disability. Disability has come to be seen as arising not simply from a medical condition, but rather from the interaction between impairments and the physical, social, and policy environments. In an environment and culture that accommodates the special needs of

Complicating disability policy is the heterogeneous population it serves. Disabling conditions are quite varied, ranging from mild to significant and consisting of physical disabilities, sensory disabilities, mental disabilities that are cognitive or developmental in nature, and mental health conditions. Each of these has its own particular challenges. Furthermore, some are congenital while others are the results of injuries or illnesses. They can affect the old or the very young, meaning that policies must address people entering the workforce, those wishing remain or re-enter it, and those nearing the end of their working lives. According to the UN, about 10 percent of the world’s population is disabled at any one time. However, this 10 percent underestimates the impact of disability. When disabled persons are not fully integrated into society and the economy, they pose added costs on their families, for example more demands on their time which may preclude time spent in other productive pursuits. A study in Uganda suggests that households with a disabled member are not only significantly more likely to be poor, but also have lower school attendance rates among their children. In addition, many people have temporary disabilities. Finally, even those without disabilities are at risk of becoming disabled. Therefore, by incorporating the concerns of disabled people, programs and policies are improved for everyone. Complicating the process of integrating disabled people into the economy is the stigma and discrimination associated with being disabled. Disabled people and their families, are often taught to be ashamed of their condition, or to consider themselves as not full human beings. In some countries, disabled people are actually hidden from view or denied basic rights by their own families. Discrimination in labor markets – and in the provision of social programs such as health and education – often provide significant barriers.

CONCLUSION

Outcomes for people with disabilities in India are not consistent with the aims of its disability legislation or its ratification of the UN Convention on the Rights of Persons with Disabilities. By using empirical methods that are cognizant of state-level variations, this research provides evidence of state-wise disparities in the economic well-being of people with disabilities. Under the Constitution of India, primary responsibility for delivery of services and commitments to people with impairments rests at the state level. Hence a focus on sub-national entities enables a clear understanding of where implementation is weak. Using an instrumental variables Wald estimator with state- significantly worse as compared to households without people with impairments. In particular, households with individuals with disabilities have up to 14 percent lower average monthly per person spending as compared to families with able members. Similar trends hold when the analysis is disaggregated by gender of the individual with disabilities, however, in comparison to families with male adults with impairments, those with female adults with disabilities appear to experience no statistically discernible penalty. The burden for families with children with disabilities is higher than that experienced in households with adult male members with impairments (15 percent deficit versus 13 percent deficit, respectively). Chi-squared and F-tests for parameter constancy across states are almost uniformly rejected, thus indicating the presence of substantial state-level heterogeneity across all models estimated. Disability policy reforms are needed in several areas: First, there should be serious consideration given to broadening the categories of disabled people included in the PWD Act, which may in any event be necessary in light of the new UN Convention to which India is a signatory. This may also require a de-linking of definitional inclusion of different groups with specific entitlements under the Act. While fiscal and other capacity issues suggest that not all disabled people may be supported through public interventions, this does not seem a good reason to exclude them from inclusion as PWD under the Act. Legislation and policy should ensure that clear obligations for involvement of persons with disabilities themselves at all stages of policy development, implementation and monitoring. Second, MSJE and central and state Commissioners’ offices should develop programs in collaboration with DPOs and NGOs for awareness raising of officials, service providers, PRI representatives and communities on programs for people with disabilities.

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