SOCIAL ASSISTANCE AND DISABILITY IN DEVELOPING COUNTRIES

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1 SOCIAL ASSISTANCE AND DISABILITY IN DEVELOPING COUNTRIES Anna Marriott with Kate Gooding July 2007 Supported by DFID and Sightsavers International Disclaimer: The views expressed in this document are the responsibility of the authors, and do not necessarily reflect the views of Sightsavers International. For further information please contact or PALS Sightsavers International Grosvenor Hall Haywards Heath West Sussex RH16 4BX

2 Contents Acronyms... 3 Executive summary... 4 Section 1: Introduction Social assistance in developing countries Disability, poverty and social assistance This study Structure of the report Methodology Section 2: Stakeholder engagement Disability movement The social model of disability Support for social assistance Social assistance as an empowering investment meeting extra costs Social assistance as income support Avoiding dependence Only part of the solution Social assistance as a right and entitlement Engagement by disability organisations Governments International development donors, agencies and consultants SECTION 3: Do disabled people access mainstream social assistance programmes? Unconditional social assistance Conditional social assistance Conditional cash transfers Cash or food for work SECTION 4: Targeted social assistance for disabled people Extent and scope of targeted schemes Coverage and accessibility Assessment of eligibility Cost Section 5: Impact of social assistance Social empowerment Access to services Economic security and empowerment SECTION 6: Linking social assistance for disabled people with other support strategies Linking social assistance with other measures Integrating disability-specific social assistance with other measures Social assistance, employment opportunities or both? Integration within a mainstream scheme: Zambia Challenges and opportunities for integration Fragmentation within social assistance SECTION 7: Discussion and conclusions Summary Recommendations Gaps and questions Type of assistance Scheme design

3 7.3.3 What is the impact of social assistance for the diversity of disabled people? Concluding remarks ANNEX 1: Methodology ANNEX 2: UN Guidance on social assistance and disability Bibliography

4 ACRONYMS ADB: AP: CASE: CCT: CDG: C-SAFE: DFID: DG: DPO: DRC: EC: FNDP: GTZ: IDC ILO IMF: INGO: LEAP: MO: Norad: NREGS: NSPS: OECD: PATH PMO: PWD: SAFCD: Sida: UNCRD: VELUGU: WB: ZAPD: Asian Development Bank Assessment Panel Community Agency for Social Enquiry (South Africa) Conditional Cash Transfers Care Dependency Grant (South Africa) Consortium for Southern Africa Food Emergency Department for International Development (UK) Disability grant (South Africa) Disabled People s Organisation Disability Rights Commission (UK) European Community Fifth National Development Plan (Zambia) Deutsche Gesellschaft für Technische Zusammenarbeit International Disability Caucus International Labour Organization International Monetary Fund International Non-Governmental Organisation Livelihood Empowerment for Alleviation of Poverty (Ghana) Medical Officer Norwegian Agency for Development Co-operation National Rural Employment Guarantee Scheme (India) National Social Protection Strategy (Zambia) Organisation for Economic Co-operation and Development. Program of Advancement though Health and Education (Jamaica) Pension Medical Officer People with disability South African Federal Council on Disability Swedish International Development Cooperation Agency United Nations Convention on the Rights of Persons with Disabilities Rural Poverty Elimination Program, Andhra Pradesh, India World Bank Zambian Agency for People with Disabilities 3

5 EXECUTIVE SUMMARY Social protection is increasingly recognised by government and development agencies as an important component of poverty reduction and development. Social assistance, in the form of cash and in-kind transfers, has received particular attention. Disabled people are often identified as one of a number of groups who could potentially benefit from this form of support. However, very little information is available about the use and impact of social assistance for poor, disabled people and their households in developing countries. This study draws on the existing literature and discussion with a limited number of stakeholders to investigate social assistance for disabled people in developing countries. It explores the perspectives of key stakeholders and, using the information available on both mainstream and targeted social assistance programmes, examines their characteristics and ability to reach and benefit disabled people. The study focuses on developing countries, particularly in Africa, but also draws on information from higher income countries. It is intended as an initial review rather than a definitive analysis. The discussion with disabled people and their organisations for this study was limited and far from representative, but it raised a number of important issues. There is concern within the disability movement that social assistance could promote a return to the medical model and a welfare attitude to disability, but many organisations see a positive role for social assistance. This may be in meeting the extra costs of disability, or as a buffer against poverty. Disability organisations stress that social assistance must aim to empower and support people s capacity for independence. For this, it must be seen as a right, underpinned by legislation, be part of a wider programme of measures to promote rights, and be developed with the participation of disabled people. In general, there has been very limited involvement of disabled people in the recent discussion of social assistance and development of national social protection strategies. However, some organisations have been involved in advocacy, and there have been growing calls for engagement. Efforts by donors and governments to promote social assistance are gaining momentum, yet it seems they are doing little to ensure the appropriate inclusion of disabled people in the process. Challenges facing governments include an absence of information on appropriate approaches and limited data. Donors are paying more attention to the rights of disabled people, but there is little analysis of the links between this work and social assistance. The World Bank and ILO seem to be most active in this area. Several mainstream schemes (aimed at, for example, vulnerable children or poor households) include disability in their targeting criteria. However, given that monitoring and evaluation systems are generally weak or non-existent, there is very little disaggregated data from these schemes to show the actual inclusion of disabled people. The study found little evidence to suggest that more than a handful of mainstream schemes are actively seeking to appropriately include disabled people. There are several barriers to access, including limited public information, physical inaccessibility, and bureaucracy, and means tests may unfairly exclude disabled people who face high costs associated with disability. Conditions attached to transfers, such as school or health clinic attendance, raise additional programmatic needs and 4

6 may exclude disabled people if these services are not accessible. Public works schemes are likely to exclude disabled people unless special provisions are made. The debate on what measures work to ensure fair and equal access to the benefits of such programmes is still at the very early stages. Several countries have social assistance schemes specifically targeting disabled people. However, most are small in scale and value. Coverage is often limited and uneven, constrained by inadequate funding, complex administrative requirements, limited awareness, poor physical access and corruption. The majority of schemes target adults of working age who are severely disabled or unable to work. However, assessment of this is complex. Challenges include finding a way to equalise assessment through uniform criteria while considering social contexts, and the appropriate combination of individualised medical examinations and more social approaches. Means testing also faces difficulties, not least in relation to taking into account the extra costs associated with disability. Little reliable evidence exists to estimate the real costs involved in administering and delivering targeted social assistance for disabled people. Evidence on the impact of social assistance for disabled people is extremely limited. Guided by suggestions from disability organisations and disabled people, as well as the limited anecdotal and research evidence that does exist, the study considers social and economic impacts. There are indications that social assistance may have a positive impact on self-esteem by enabling a contribution to the household budget and encouraging mobilisation of disabled people. However, there are also reports that disabled people often lack control over spending of the grant. There is evidence that social assistance can improve access to health services, but the picture on education is more mixed, with access depending on provision of adequate services. Social assistance seems to improve household health and economic status. However, evidence on the economic status of the disabled individual is less clear, particularly regarding employment. This last point leads to the long-standing concern around balancing social assistance with support for employment. Experience in high income countries suggests that support during the transition to work is critical. Disabled people consulted for this study stressed that social assistance must be part of a bigger programme of support. The study looks at draft strategies for Ghana and Zambia as well as literature on South Africa to examine the integration of social assistance with other measures. There are indications that governments do see social assistance as one option within a wider framework of support for education, employment and other rights, but there seems to be little integration between social assistance and these other measures. Instead there is a tendency to divide disabled people into two categories: those in need of social assistance, and those deemed capable of productive activity and handled through disability mainstreaming in training or employment; possible links between the two are not explored. In balancing social assistance with other measures, policy makers need to consider appropriate sequence of measures and the role of social assistance in compensating for the extra costs associated with disability. Possible strategies to improve integration include a more comprehensive assessment for disabled individuals that considers a range of needs, and clearer understanding of social assistance as a means rather than an end. There are indications of fragmentation within social assistance strategies. Grants for disabled people need to be considered within this wider context, as other social protection mechanisms (or their absence) have a significant impact on the effectiveness and manageability of social 5

7 assistance for disabled people. If disability grants are the only assistance available to working age adults, they are likely to be used for purposes other than those originally intended and may lead to perverse incentives to risk health. The limited information available on social assistance and disability leaves many questions unanswered, and these are indicated in the concluding section for further discussion. However, three key principles for effective social assistance are clear from the research: 1. There must be strong legal foundations to make social assistance a right and entitlement. 2. Disabled people must be involved in design, implementation and evaluation of social assistance schemes. 3. Social assistance must be developed as part of a wider system, hand in hand with the development of inclusive services, support for employment, anti-discrimination legislation and the full range of services. Disability issues cannot be dealt with through social assistance alone. In addition, there is a pressing need for more information. Improved data on disability are essential for the effective design, delivery and monitoring of both targeted and mainstream schemes. Dedicated resources are required to redress the current inadequacy of such data. Priority areas for research include: barriers to access the role of conditions assessment of the costs associated with disability participatory research with disabled people to understand the impact of existing social assistance schemes identification and documentation of good practice investigation of how social assistance programmes can effectively interact and reinforce other services and programmes. There are several potentially valuable sources of further information, including analysis and monitoring of the various national social protection strategies currently under development, including in Ghana and Zambia, and evaluation of recently introduced schemes, as in Bangladesh. 6

8 SECTION 1: INTRODUCTION The role of social protection in reducing poverty and promoting development in low-income countries is gaining increasing attention from international organisations, donors and governments. A growing body of evidence suggests that social protection not only helps to reduce poverty but has a wider transformative role in tackling power imbalances, enabling and promoting human capital investments and productivity, and contributing to economic growth. This growing discussion on social protection frequently identifies disabled people as one of a number of vulnerable groups, including women, older people and children, who could potentially benefit from social protection initiatives. However, in contrast to these other groups, little is known about the impact of current approaches on disabled people or their households. This study aims to begin to close this gap. Although recognising the critical importance of a broad social protection agenda, including legislation and action to tackle discrimination, this study focuses on social assistance, and particularly cash transfers, as the component of social protection attracting particular attention from donors and also raising concern among some parts of the disability movement. There appears to be a lack of information, understanding and agreement on the appropriateness and effectiveness of social assistance programmes in tackling the challenges faced by disabled people in developing countries. Before turning to assess the information that is available on current social assistance programmes, this introduction continues with some definitions and brief background information on social assistance, disability and poverty. Definitions Social protection: Support to individuals or households to reduce vulnerability and guarantee an acceptable standard of living. It includes: Social assistance: non-contributory cash and in-kind transfers to the poor (e.g. fee waivers, disability allowance). Social insurance: individuals or households spread risk by paying contributions so that if they experience a shock or negative change in circumstances they receive financial support (e.g. health insurance). Legislative and regulatory frameworks: these address discrimination and establish minimum standards. Disability is an evolving concept, and (as discussed later) definitions are problematic. However, as defined in the UN convention on the rights of persons with disabilities: Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others. (UNCRD Article 1) 7

9 1.1 Social assistance in developing countries Social assistance, as used in this study, refers to regular and predictable transfers provided as cash, in-kind (often food) or as vouchers to vulnerable individuals or households, and that are not based on prior contributions. Such transfers can be conditional usually on the contribution of labour or on attendance at school or health facilities or unconditional. They can also be universal, covering all citizens regardless of their financial status, or targeted, using a means test or other eligibility criteria including age or disability (Barrientos and Lloyd- Sherlock 2002). A growing number of evaluations have assessed the impacts of social assistance, and particularly cash transfers, on recipients and their households. There is considerable evidence from programmes in Latin America, Africa and Asia that such assistance has not only improved income security and nutrition, but has also improved health and access to education for recipients and other household members, especially children (e.g. Barrientos 2004; Samson et al 2004; Skoufias and McClafferty 2001; Devereux et al 2005). Contrary to the argument that social assistance promotes dependency and disincentives to work, a number of studies have found evidence that cash transfers have promoted livelihoods via investments in microenterprises and the maintenance of productive assets (e.g. Barrientos and Lloyd-Sherlock 2002; Lund 2002; University of Lesotho 2006). There is also growing recognition that as opposed to in-kind transfers such as food, which can distort markets and might reinforce dependency (UNICEF 2004), cash transfers inject capital into local markets and give recipients the dignity and empowerment of choice (Farrington and Slater 2006; Devereux et al 2005). A common argument presented by those questioning the relevance of social assistance in developing countries is that it is unaffordable. However, work is being done to demonstrate that modest transfers are affordable in even the poorest countries, particularly when supplemented with resources from international development assistance (DFID 2005). 1.2 Disability, poverty and social assistance Disabled people are not a homogenous group, but have a wide range of needs, interests and circumstances that contribute to their well-being and opportunities in life. Different types of impairments and different social, financial and physical environments create very different situations (Guthrie et al, 2001). This must be recognised in all discussion on the rights and interests of this category of people. Disabled people have an equal right to social protection. This is enshrined in the Universal Declaration of Human Rights, and was reconfirmed in the UN Standard rules on the equalization of opportunities for persons with disabilities (Rule 8) and the new UN Convention on the Rights of Persons with Disabilities (Article 28) (see Annex 2). For many policy makers, a more pressing justification for disability benefits is the close link between disability and poverty. Disability increases vulnerability to poverty, while poverty creates the conditions for increased risk of becoming disabled (Emmett 2006: 209). Widely quoted UN statistics suggest that one in five of the world s poorest people has a disability, and 82% of disabled people in developing countries live below the poverty line (e.g. European Commission 2003). 8

10 Although there is still limited research that examines the links between poverty and disability, the evidence base is growing. A recent review of the literature confirmed that individuals and households affected by disability are more likely to be below the poverty line, and that being disabled increases the risk of becoming poor. It found that poor people themselves see disability as a key cause of poverty and describe disabled people as among the most excluded, poorest of the poor. Disabled people on average fare worse in relation to employment, material wealth, education, health, access to development assistance and poverty relief, and in social well-being (Gooding 2006). As well as the opportunity costs of exclusion from education and employment, disabled people also face extra direct costs. As noted by Mohapatra (2004), disabled people have to undertake a minimum amount of expenditure for functional independence, mobility and activities of daily living. This constitutes what Amartya Sen terms the conversion handicap : the disadvantage that a disabled person has in translating income to well-being: To do the same things as an able-bodied person, a person with physical disability may need more income... With the same level of income a disabled person may be able to do far fewer things, and may be seriously deprived in terms of the capabilities that he or she has reason to value (Sen, 2004). Social assistance is seen as a way to help meet these extra costs and so enable access to services and employment opportunities. Although data on all aspects of disability are limited, there is some evidence of the considerable extra costs facing disabled people. In India, a national survey of disabled people estimated the average recurring costs associated with being disabled (for example, repair of aids and appliances and medical charges) as Rs421 per month, approximately the official poverty line. In addition, disabled people faced considerable fixed one-off costs, such as a disability certificate, aids and appliances, and additional costs such as special education, modifications to make housing accessible, and paying an attendant (Mohapatra 2004). In Bangladesh, research indicated that 57% of families with disabled children reported that they incurred extra direct costs almost every month for specialised child care, medicine, or health care. The direct cost of treatment and equipment for affected families varied from five days to one year s worth of normal income, with the average being four months worth. A child with severe impairments was found to be three times more expensive to raise than a child without disabilities (Chowdhury 2005). The close links between poverty and disability indicate the need for disabled people to be included in all poverty alleviation initiatives, including social assistance. However, as noted above, there is currently very limited analysis or discussion about the inclusion of disabled people in social assistance programmes. Furthermore, as explored in Section Two, there is uncertainty within the disability movement about the value of social assistance, with concerns that it could detract from efforts to promote recognition of the capacities of disabled people and their productive contribution and reinforce associations of disability with dependence on charity. 9

11 1.3 This study With recognition of these concerns as well as the frequent neglect of disability in the mainstream social protection literature, this study aims to identify and assess available information on social assistance schemes and disability in developing countries. By looking at literature on both mainstream social assistance programmes and those specifically targeting disabled people, the study begins exploring their characteristics and their ability to reach and benefit disabled people and their households. It probes the views of key stakeholders to identify levels of engagement and attitudes towards social assistance for disabled people. Questions guiding the study include whether existing programmes are appropriate and adequate for tackling the poverty often experienced by disabled people, and whether these schemes can contribute to achieving empowerment and equality of opportunity. The study focuses on lessons from Africa and Asia but also on draws on some information from Latin America and industrialised countries. Although recognising that much social assistance provision takes place through NGO services or informally through the community, the study concentrates on government systems. A central concern of the study is that efforts to promote the use of social assistance programmes in developing countries appear to be gaining momentum without a sound knowledge base on how existing schemes include and impact on disabled people, and without the representation and participation of the disability movement. The purpose of the study is to provide initial information, including the identification of key knowledge gaps, to promote and assist further discussion and debate within the disability movement, and through that to contribute to the development of more effective and inclusive social assistance. It is intended as an initial review, not a definitive analysis. It must be stressed that the specific focus on social assistance initiatives in this study is not to suggest that they can or should replace other types of development activities. As noted by many stakeholders, social transfers are not a panacea and there are significant challenges to their successful and effective implementation (e.g. DFID 2005). Further, the effectiveness of social assistance is widely considered to be dependent on the availability of and access to other forms of protection and support (Farrington and Slater 2006), as well as complementary livelihood activities and functioning markets. 1.4 Structure of the report Following this Section 1, the report is structured as follows: Section 2 explores the perspectives of key stakeholders, looking at what governments and agencies developing social assistance schemes think about disability, and what disability organisations think about social assistance. Section 3 addresses questions of whether and how disabled people are included in mainstream social assistance programmes. Section 4 focuses on the characteristics of schemes targeted specifically at disabled people. Section 5 discusses the information available on the impact of social assistance on disabled people. Section 6 looks at whether and how social assistance is being integrated with other programmes and interventions designed to support disabled people s rights, and at integration of social assistance for disabled people within the wider social assistance strategy. 10

12 Section 7 draws together a summary of the findings, identifies some key principles and areas for research, and indicates some important remaining questions for further discussion. 1.5 Methodology This paper is designed as an initial scoping report to examine existing information, not to collect new primary data. In line with this, the study was largely desk-based and focused on secondary sources of information. The main resource was existing literature on social assistance. However, it also draws on discussion with disability organisations and other stakeholders, and on meetings with government and civil society organisations during visits to Ghana and Zambia. In addition, the draft study was discussed at a workshop involving government representatives, development agencies, disability organisations and researchers, and some of the discussion has been incorporated. In most cases the names of those providing information are not given, in order to protect their privacy. The short time available to undertake the study placed considerable limitations on the information obtained. A particular gap is the experience and analysis of disabled people. Although some information was obtained from Disabled People s Organisations and individual activists, contact was limited by the nature of the study methods. Further, experiences of poor disabled people rather than the elites involved in disability organisations were impossible to obtain in the absence of primary level fieldwork. Time constraints also limited opportunities to follow up on all leads identified, and the broad geographic scope of the study also meant that it was not possible to carry out in-depth searches on specific national government policy. These limitations mean that there are further potentially valuable but unexplored sources of research. In particular, there is a wealth of research on disability and social assistance in OECD countries, where schemes have existed for longer and where there is more engagement by the disability movement. Analysis of this literature may have important learning for schemes in developing countries, but was beyond the scope of this report. Suggestions of further information are very welcome. Please contact pals@sightsavers.org. 11

13 SECTION 2: STAKEHOLDER ENGAGEMENT The participation of key disability and development stakeholders is imperative for the design and implementation of effective, appropriate and inclusive social assistance programmes. In addition, there are diverse views on the value of social assistance for disabled people within the disability movement and beyond. To take work forward in this area it was therefore considered important to gain an understanding of the current levels of practical work on social assistance by these stakeholders, and of their thinking on social assistance for disabled people. This section considers the views and work of disabled people s organisations (DPOs), NGOs working on disability issues, governments, donors and international development organisations. The limited time available for the study and dependence largely on communication limited consultation. Hence, what follows is not a representative picture but rather a presentation of views identified through discussion with a limited number of individuals (including around 20 disabled activists or DPO members) and impressions gained from organisational websites and literature. 2.1 Disability movement Summary: There is concern within the disability movement that social assistance could promote a return to the medical model and welfare attitude to disability. However, many disability organisations see a positive role for social assistance. This may be in meeting the extra costs of disability, or as a buffer against poverty. Disability organisations stress that social assistance must aim at empowerment and supporting capacities for independence. To be empowering, social assistance must be: o seen as a right, and underpinned by legislation o part of a wider programme of measures to promote rights o developed with the participation of disabled people. There is some engagement by disability organisations in advocacy around social assistance, but in general participation in policy development is limited. Because of the challenges noted in the methodology, this overview combines information from DPOs (organisations of disabled people), and NGOs working on disability issues (organisations working with or for disabled people), as well as from disabled individuals. The term disability organisation is used either in cases where the type of organisation was unclear from responses or to imply both DPOs and disability NGOs. It is possible that only those members of the disability movement who have engaged with the issue of social assistance at some level were motivated to respond to requests. This section therefore simply aims to represent a range of themes identified by the respondents rather than to be indicative of the overall level of debate and action on social assistance issues. It looks first at the attitudes to social assistance, then at engagement in promoting or designing schemes. 12

14 2.1.1 The social model of disability Since the 1980s there has been a very significant shift in thinking away from the medical model of disability where the focus is purely on the physical or mental impairment, and disability is considered to be the problem or condition of the individual to the social model, which focuses on societal attitudes and an inaccessible environment as limiting disabled people s lives. This shift promotes the equal rights of disabled people and focuses attention on removing the social, economic and political barriers to inclusion. As part of this shift, DPOs have struggled hard to challenge the charity model of disability in which disabled people are to be pitied and helped by welfare approaches (Coleridge 1993). There has been a growing emphasis on activities to promote economic and social empowerment to enable disabled people to contribute economically to their households. Such activities include life and vocational skills training, livelihood and employment programmes, as well as support for DPOs to become campaigners and advocates for disabled people s rights. There has been more attention given to promoting accessibility and countering discrimination in employment, services and other arenas, in line with the social model s emphasis on changes to society as a whole to create an environment that maximises participation. Some within the disability movement feel that social assistance is at odds with the thinking of the social model and their work to promote recognition of the abilities and capacities of disabled people to live independently. Thus, social grants and hand-outs for disabled people are associated with patronising and welfarist attitudes towards disabled people: Rather provide skills and jobs than disability grants, the social model would argue (a view which would be echoed by very many disabled people) (Swartz and Schneider 2006: 237). The extent of such views within the disability movement is not possible to judge from the limited research and discussions used for this study. However, there were clear indications of reservations and mixed feelings. A few statements of clear opposition were identified, and several of those who indicated support for social assistance also expressed concerns, particularly around dependency and segregation rather than inclusion. Concerns were articulated clearly by one prominent player in the disability movement in Southern Africa, who questioned whether social assistance might be another cloth put around the medical model, emphasising what disabled people cannot do. A respondent from Uganda said there was considerable division on the subject both within and between organisations in his country. He said that some welcomed the idea of individual assistance in a context where disabled people experienced significant discrimination and poor access to jobs, but others felt that such assistance promotes perceptions of dependency. In Zambia, one respondent felt that support for a disability allowance is counter to the government s argument that it is looking at social inclusion and empowerment. Rather than an allowance, the need is for programmes such as Community Based Rehabilitation (CBR), income generation and micro-finance. The tension between social assistance and the demand for empowerment was clearly articulated on the blog of Ishaque Miah, a disability activist in Bangladesh, who criticises the disability allowance introduced in The Government of Bangladesh is providing a stipend to the PWDs monthly. But the PWDs never wanted this type of stipend. They are crying for 13

15 equal rights and opportunities. They want barrier-free access to all institutions, they want barrier-free communication, barrier-free roads and transport, and equal human rights Government are not giving attention to this demand. Who told the government to give such type of allowance? Miah clearly sees the introduction of the allowance as politically motivated: Government is giving this stipend/allowance to the PWDs at the end of their ruling time. The next national election will be held after four months. Giving this money to PWDs means they are showing the other that they are good. 1 The two comments posted in response to the article show the mixed views within the disability movement. One agrees firmly, stating that: The charity can't lasting for benefiting them but empowerment help them to make independent living. (sic), but the other response is more questioning: It is true politicians use methods like this to fish for votes. But can their proposal still be used by the disability movement in some way to promote disability rights? Other concerns raised by disability organisations included fears that in the long term, social assistance could be seen as special treatment and lead to discrimination and segregation in the community (Bangladesh), that the abilities of disabled people may be overlooked, that social assistance makes disabled people receivers not contributors, and that social assistance could slow inclusion in the mainstream (India) Support for social assistance Nevertheless several organisations are advocating for social assistance. For example, in Zambia, DPOs have been campaigning for a disability allowance since the 1970s, and this is now included in the new Fifth National Development Plan (although there is some doubt over whether this will be implemented). According to DPOs, one motivation for demanding the allowance was seeing the impact of an allowance given to staff at the Zambian Agency for People with Disabilities (ZAPD), a government institution designed to promote disabled people s interests. Many of the ZAPD staff were disabled people, and when they left the agency, they lacked income, so many turned to begging. A monthly non-contributory welfare allowance was established to prevent this, apparently successfully. This has now been discontinued, but it has inspired the disability movement to press for a more general allowance along the same lines. A second motivation has been hearing about disability benefit schemes in OECD countries. South Africa has one of the most substantive social security systems in the developing world, including a disability grant. It seems that the disability movement in South Africa is largely in favour of this. One report co-authored by an umbrella body for the disability movement states that: It is accepted that the provision of cash transfers is an essential means to alleviate poverty, to smooth the income cycle, to meet those special needs due to the disability, and to overcome barriers that many persons with disabilities face in maximising their development and potential. For these reasons the Disability Grant and the Care Dependency Grant must be maintained and kept at their current level, if not increased. (Guthrie et al 2001:129-30). Other contacts for this study in South Africa also supported the idea of social assistance as an important and empowering measure, and argued that disability grants were needed because of the generally disadvantaged situation of disabled people, involving high levels of poverty, low levels of education, very high general unemployment and poor disability services support. 1 PWDs situation in Bangladesh. accessed 9 June 2007). 14

16 An interesting observation by one respondent was that within the disability movement, those at the grassroots ask for an allowance, whereas the big NGOs talk about social inclusion (employment, education, health). Further investigation would be needed to know whether this division holds true and to interpret it (does it show a disability elite out of touch with grassroots needs, or a disempowered grassroots unaware of disabled people s rights and potentials?) Social assistance as an empowering investment meeting extra costs An important point to note is that many of those calling for, or supporting, social assistance stress its role in facilitating disabled people s independence, and the importance of an empowering approach. This is perhaps stated most clearly in a report for the South African government that was co-authored by the South African Federal Council on Disability, the national umbrella body for disability organisations: Social security systems should be seen not merely as safety nets and povertyalleviating measures, but also as measures to promote self-sufficiency and independence. The disability sector wish to stress that social grants should not be viewed as creating dependency, but rather as enabling development by overcoming many of the barriers faced by persons with disabilities, and thus equalising opportunities. It should be not seen as social protection but rather as social support, encompassing a wide range of transfers, services, and subsidies. (Guthrie et al 2001:125). The discussion of social assistance as enabling independence is often linked to the extra costs associated with disability, such as the need to pay a guide, or extra transport fares. By meeting these costs, social assistance could enable access to education, employment and other opportunities (see Sections 1 and 5 for further discussion of the costs associated with disability). This approach of empowerment through meeting costs was clear in discussions with disability organisations. In Zambia, disability organisations stressed that social assistance is about independence, not charity and dependence. For example, respondents in Zambia said that an allowance can t be seen as charity. It would be affirmative action to help people become selfsustaining, rather than beggars. They noted that disabled people face numerous obstacles and additional costs, and an allowance could turn around the current situation of poverty, enabling people to do other things, for example, by providing a means to pay for transport and so enabling education or business. Thus, an allowance doesn t make people lazy, it capacitates them. Similarly, a DPO in Pakistan noted that regular cash transfers should be used for empowerment, independent living and livelihood, and disabled people in Ghana also stressed the potential importance of a disability allowance for meeting extra costs. Both in Ghana and in Zambia respondent noted that grants would be far too small to become a disincentive and create dependency. There was also mention of a cultural dislike of dependency and a desire among disabled people to be self-sustaining, and use the allowance to be productive. Internationally, this focus on extra costs was apparent in discussions around the UN Convention on the Rights of Persons with Disabilities. Article 28 of the Convention covers social protection, and states that parties agree in paragraph (c): To ensure access by persons with disabilities and their families living in situations of poverty to assistance from the State with 15

17 disability-related expenses, including adequate training, counselling, financial assistance and respite care. The International Disability Caucus (IDC) represented around 70 non-governmental disability organisations and DPOs in the drafting of the Convention. Although Article 28 was not of primary concern for the IDC (limited legal resources focused attention on more controversial areas such as education), there were some debates (Cote, pers. comm.). The IDC emphasised the need for state support with disability-related costs, and argued for a clear distinction between support schemes designed to cover the extra cost related to being disabled and social assistance which is related to poverty, stressing that both are needed. The IDC unsuccessfully argued that the link between support for extra costs and support to alleviate poverty is not relevant, as the support should not been means tested (Adams, pers. comm.). Of particular interest, an earlier version of the paragraph ended which should not become a disincentive to develop themselves. The IDC supported the deletion of this on the grounds that special measures are not a disincentive to personal development, but rather a precondition to it (Young, pers. comm.). This is in line with the comments from Ghana and Zambia that an allowance enables rather than discourages independence. Participants at the workshop held to discuss the draft report echoed the UN call for support with extra costs. Participants recommended that governments should provide social assistance for disabled people to compensate for the extra cost of being disabled and to help equalise opportunity. A key message from the workshop was that asserting disabled peoples equal right to social assistance does not signal a return to welfarism. It is not instead of action to claim rights, but supports and underpins it Social assistance as income support While one rationale for social assistance for disabled people is support with extra costs associated with being disabled, another is the frequent exclusion of disabled people from employment, with social assistance provided as a form of income replacement. This is alluded to in the UN Convention, which indicates the responsibility for states: To ensure access by persons with disabilities, in particular women and girls with disabilities and older persons with disabilities, to social protection programmes and poverty reduction programmes. Interestingly, the IDC argued for this paragraph to explicitly mention adequate income-maintenance schemes, as this might not be covered under social protection. However, this was not included in the final article. The earlier UN Equal Rules give a much more explicit statement on the role of social assistance as income maintenance, placing the element of extra costs within this. The Equal Rules state that: States should ensure the provision of adequate income support to persons with disabilities who, owing to disability or disability-related factors, have temporarily lost or received a reduction in their income or have been denied employment opportunities. States should ensure that the provision of support takes into account the costs frequently incurred by persons with disabilities and their families as a result of the disability. (Rule 8 -Income maintenance and social security). 16

18 Further analysis and information would be needed to know whether this apparent difference in emphasis between the UN statements is significant. At this stage it is enough to note that international agreements relating to disability have specified a role for social assistance in helping with the extra costs of being disabled and providing support against loss of income. Several organisations indicated a role for social assistance in income maintenance or relief from poverty rather than just support with extra costs. This was sometimes suggested in relation to those deemed eligible for assistance, with the focus on those living in poverty rather than on disability per se. For example, in Zambia DPOs noted that even if an allowance does create dependence, this has to be balanced against the current situation: Everything has pros and cons. The prevailing conditions now are abject poverty and this has social consequences. It is not just the individual who suffers, for example; children lose out on education because they need to assist disabled parents. Other respondents also noted the simple poverty-based justification for social assistance. For example: People living under poverty need social assistance. It is the responsibility of the governments to give social security to the marginalised persons in society, like persons with disability. (India) Avoiding dependence While respondents identified a potential role for social assistance in promoting independence and several stressed that it would not create dependence, there seemed to be some concern that this is not the approach currently being taken, or at least that it cannot be taken for granted. For example, a DPO from Southern Africa stressed the need for DPO engagement and advocacy to assert that social protection programmes should not only protect people from hunger but enable them to become independent, i.e. food for work and cash transfers should empower rather than disempower beneficiaries. Concerns were expressed that social assistance could encourage dependency and would need to be promoted in such a way as to avoid this. A respondent from the Philippines warned that if not provided with adequate orientation, beneficiaries may internalise the dependent attitude that the world owes them all the support they need. However, considering that social assistance is merely a subsidy or augmentation, PWDs and their families are still required to do their part and share in supporting the beneficiaries. In Zambia, some disabled people felt that an allowance should be promoted as seed money, with recipients encouraged to use it for income generation so that after a time it would no longer be needed. Likewise, a disabled person in Ghana stressed that recipients need to know they should work themselves out of it; it should build capacity. However, Ghanaian DPOs also recognise that some people will need permanent assistance and that continuous support should be provided for these individuals (Oforiwa Fefoame, pers. comm.). Similarly, participants at the workshop to discuss this paper stressed that income replacement benefits should aim to support rather than discourage work for disabled men and women and should be within a framework that promotes equal employment opportunities. This emphasis is indicated in Rule 8 of the Equal Rules, which continues: Social security systems should include incentives to restore the income-earning capacity of persons with disabilities. Such systems should provide or contribute to the organization, development and financing of vocational training. They should also assist with placement services. 17

19 Social security programmes should also provide incentives for persons with disabilities to seek employment in order to establish or re-establish their income-earning capacity Only part of the solution Importantly, and linked with the focus on social assistance as one enabler, many of those who support the idea of social assistance stress that it is only a part of the solution. In general, advocacy efforts are concentrated on more obviously empowering factors such as education, employment and political representation. There is concern that attention to social assistance should not be at expense of these broader issues. Thus, a key agreement at the workshop was that disability cannot be looked at in isolation through the lens of social assistance. We have to challenge the assumptions that disability can only be dealt with through social assistance and social welfare alone. There are concerns that governments may think providing an allowance abdicates them from any other responsibility. One disability organisation in Bangladesh expressed concern that governments may say don t come to us now you have your allowance, and also that it might reduce disabled people s advocacy in other areas: disabled people may feel that with the allowance, they do not have rights to ask for more and should just stay at home and accept your disability pension Social assistance as a right and entitlement Although many respondents did see social assistance as a potential way to help them claim entitlements such as education and employment, very few explicitly described and advocated for social assistance as a right (although this may reflect the questions asked, rather than respondents actual thinking). The most explicit reference came from an organisation in the Philippines that advocated for an institutionalised disability pension rather than the current tendency for assistance to be provided only during election periods: The effort is continuing until we reach the point when we have persuaded our government to look at the needs not only during election periods but to consider it a right of the indigents, whether PWDs or not. More specific attention to rights was indicated among participants at the workshop held to discuss the draft study. One participant from Bangladesh spoke of the right to improved living standards, adequate food and other basic needs, and the duty of the state to uphold these rights. They argued that severely disabled people may need support, and this should be provided by the state. This view was reiterated by disability NGOs and DPOs at a recent discussion in Bangladesh entitled Social security is the right of challenged citizens, at which speakers argued that social security is a right of disabled people, and suggested the need for action in line with Article 28 (Social protection) of the newly adopted UN Disability Convention (Daily Star 2007). The association of social assistance as a right with ongoing government commitment was reflected in other comments on the importance of sound legislation and standards underlying social assistance. Disability organisations noted that social assistance is generally used to win votes, not seen as an entitlement, and stressed the need for a guarantee of regular and predictable transfer delivery. There was clear feeling that social assistance will not promote empowerment unless there are clear policies and disabled people can claim support through legislation. 18

20 The role of legislation may be one reason for an apparently greater discussion about social assistance as a right in South Africa. The report to the government social security commission noted above looks in detail at the legal rights framework for the disability grant, and states that the South African Constitution and the International Instruments underline the right of persons to social security and social assistance, in particular of vulnerable groups, such as adults and children with disabilities. It is therefore an obligation of the State to make provision, if only through progressive realisation, for these rights. (Guthrie et al 2001:123). One South African contact endorsed the right to have access to social assistance, as enshrined in the Constitution, and another spoke of the clear link between poverty, empowerment and the right to social protection. The firm legal backing for social assistance within a very progressive national constitution makes the disability grant a legal entitlement rather than political tokenism. Perhaps linked with this rights framework and social contract, the same report from South Africa suggests that it is for society to contribute resources to this provisioning, for purposes of solidarity and for ultimate societal stability and economic well-being (p.123). This social contract and sense of social solidarity was also noted by one of the respondents. A DPO in the Philippines stated that: The sense of belonging to a society who provides what they could not afford to provide for themselves is one of the positive impacts. The sense of responsibility and duty to a society is developed when the society demonstrates that its resources, revenues, income etc are allocated firstly to those who need. Many respondents identified further qualifications for their support for social assistance. For many, this was around the terms of access to assistance. There was no definite agreement on the best approach. Thus, some felt that social assistance should only be for those with the most severe impairments, others felt it should be dependent on income not severity of impairment, and others felt that all disabled people should have support to meet extra costs. Other concerns included the need for safeguards to ensure the transfer was used for the benefit of the recipient, for an approach to assessment and delivery that supports the dignity of the beneficiary, and critically, for firm standards regarding participation of disabled people Engagement by disability organisations Although these views indicate significant support for social assistance, advocacy efforts by the disability movement tend to concentrate on other areas, such as education and employment, and very few disability organisations seem to have looked at social assistance. This is to some extent reflected in the outputs from the DFID Disability Knowledge and Research Programme (KaR) ( ), which aimed to generate and support research on disability and consulted members of the disability movement from Europe, Africa and Asia on the agenda for research. Social assistance did not come up as a major issue in these consultations or in the commissioned research projects themselves, and the International Committee of the UK Council of Disabled People, which was closely involved in the KaR programme, confirmed that they have not done work on social assistance in developing countries. The lack of discussion was also noted by some disability organisations contacted for this study. For example, one correspondent stated that thinking on social assistance within the disability movement is either not there or trapped in a welfare idea, and suggested that very few leaders in the disability movement had really unpacked social assistance, and that there was a general lack of information. He felt that it was important to demonstrate the link between social 19