International Development CommitteeWritten evidence submitted by The Leprosy Mission England and Wales
The Leprosy Mission supports the submission to the IDC from Bond’s Disability and Development Group (as a steering group member) and the UK Beyond 2015 campaign (as a member). It would also like to emphasis the points below:
1. Summary of Key Points
1.1. Failure to include Neglected Tropical Diseases (NTDs) in the targets and indicators associated with MDG 6, even though the Goal referred to “other diseases”, has meant that they remained neglected, resulting in a negative impact on achieving the other MDGs. NTDs should be a key focus of any new framework.
1.2. Including targets and indicators associated with the MDGs provided a clear, measurable focus. Targets and indicators should form part of a post-2015 framework, but they should be sure to measure the goal as a whole—not mention something such as “other diseases” in MDG 6, that is then not measured. Goals, targets and indicators should be selected recognising that development is not a linear process ie based on the direct results they will achieve, as well as their ability to contribute to the achievement of other goals.
1.3. Efforts to achieve the MDG targets may not have been as effective as possible due to the failure to recognize the close links between disability and poverty, and the importance of addressing disability issues as a core strategy within successful poverty eradication programmes. A new framework should include specific targets for inclusion of disabled people as they are more likely than their non-disabled peers to be “left behind”—still marginalized and trapped in chronic poverty.
1.4. The post-2015 framework needs to be grounded in human rights conventions and focused on equity. A core aspect of this will be to ensure that disability issues are mainstreamed across all aspects of the new framework, with clear obligations for policymakers to consider the disability dimension in all interventions, and to involve disabled people in developing and implementing policies.
2. Lessons learned from the adoption of the International Development Targets and the Millennium Development Goals
2.1 Despite MDG 6 focusing on HIV, Malaria and other diseases, more than 1 billion people are still affected by the chronic disabling infections of Neglected Tropical Diseases (NTDs) particularly those living in remote rural areas, urban slums or conflict zones. “NTDs have a terrible impact on health, impede child growth and development, harm pregnant women, and often cause long-term debilitating illnesses. They cause an extraordinary amount of ill health, disability and disfigurement, and are often deadly. As a result, those who suffer from NTDs are frequently shunned by their families and their communities. In addition, people with these diseases are often unable to work productively, leading to enormous economic losses for them, their families, and for the nations in which they live.” (Skolnik, R & Ahmed, A, 2010, Ending the Neglect of Neglected Tropical Diseases, Population Reference Bureau) For example, although new cases of leprosy have reduced worldwide, with 219,075 reported cases in 2011 (WHO WER August 2012), over three million people still suffer the physical, social and economic consequences of the disease. Disability and stigma mean many people affected by leprosy are socially excluded and fail to benefit from mainstream development programmes (Arulanantham, S, 2010, Leprosy and the MDGs, Leprosy Review).
2.2 Targets and indicators for MDG 6 focused on HIV, Malaria and TB so although “other diseases” were mentioned in the Goal, it was those diseases with targets and indicators that were given priority. This resulted in a welcomed decrease in new cases of HIV, increased access to anti-retrovirals, a 20% reduction in malaria and a reduction in TB-related deaths by one third since 1990 (The Millennium Development Goals Report 2011, UN). However, over a billion people with NTDs continued to be neglected as there was no specific target related to their reduction, and donor funding was predominantly linked to diseases with MDG targets.
2.3 Yet, “working to overcome the impact of NTDs represents a largely untapped development opportunity to alleviate the poverty of many populations and thereby make a direct impact on the achievement of the Millennium Development Goals (MDGs).” (First WHO report on neglected tropical diseases 2010: Working to Overcome the Global Impact of Neglected Tropical Diseases, WHO). By not including targets for NTDs in the MDG framework, achievement of the existing targets has been undermined. For example, people disabled by Leprosy or blinded by Trachoma are more likely to be unable to work and remain in poverty. It should be recognised that development is not a linear process and that although focused targets are important they should be selected based on both their direct impact and their ability to support the achievement of other goals. The UN Outcome document of the MDG Summit in 2010 recognised this and called for renewed efforts to prevent and treat NTDs.
2.4 As mentioned in 2.1, disability is increased by not addressing NTDs. Disabled people make up 15% of the global population, and recent evidence based on comparable data shows that developing countries have a higher disability prevalence than developed countries (WHO and World Bank Report on Disability, 2011). Yet disability is not mentioned in any of the eight MDGs, nor does it appear in the MDG framework’s 21 targets and 60 indicators.
2.5 The MDGs have undoubtedly had a significant impact on development. However, headline achievements mask ongoing systemic marginalisation and inequality. Disabled people are disproportionately represented among those still trapped in extreme and chronic poverty because the links between disability and poverty have not been reflected within the current MDG framework, and the underlying causes of their marginalisation have not been addressed. The recent report of the UN System Task Team on the post-2015 UN development agenda stresses that, “important progress has been made in most countries, particularly towards the goals of eradicating poverty and improving access to primary education. Yet trends have been uneven within and across countries and regions. The poorest and most discriminated against on the basis of gender, age, disability, ethnicity or otherwise have often been the most disadvantaged.”
2.6 Since 1999 there has been a growing body of evidence to demonstrate that you are more likely to be poor if you are disabled, and more likely to become disabled if you are poor. A recent World Bank comparative study of 15 developing countries (Mitra et al, Disability and Poverty in Developing Countries, 2011) found that persons with disabilities were significantly worse off, were more likely to experience multiple deprivations, and had lower educational attainment and employment rates than non-disabled people. Households with disabled members tend to have fewer assets and spend more on health care than those without. Data from Myanmar suggest that households with a leprosy-affected member have double the rates of household poverty than households with a member who is disabled from any other cause (Griffiths M, Soe SKZ. Leprosy, Poverty and Disability: analysis of disaggregated data from field studies. Social Policy and Poverty Research Bulletin, 2012; 1: 4).
2.7 The clear links between disability and poverty mean that all MDGs are relevant to disabled people, and it is theoretically possible to address the issues faced by disabled people within each of the eight current goals. However, the lack of a disability focus means that disabled people have not been systematically included in the development policies and programmes which have resulted from the MDG framework, despite this being a requirement of Article 32 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD). This has often led to their effective, even if unintended, exclusion. For example, in the drive to raise the number of children in primary school, many countries have found it easier to bring non-disabled children into schools, thereby leaving out a disproportionately high number of disabled children. UNESCO estimates that 30% of all primary aged children not in school are now children with disabilities (Children with Disabilities, UNESCO). This might not have been the case had disability been highlighted among the targets and indicators, even if absent from the goals. A comparison can be made with gender which has been specifically highlighted at all levels of the MDG framework and which development actors are therefore obliged to consider within all aspects of their programming.
2.8 It is possible that the lack of disability focus within the MDGs stemmed from the prevailing view of disability among policymakers when the initial MDGs were drafted. In 1999 disability was generally seen as a minority sectoral issue, understood primarily in terms of medical need. However, since 1999 we have seen a shift in understanding of disability among policymakers, backed by a growing body of research to show that the most pressing problem faced by disabled people is not their disability but the poverty they experience as a result of exclusion and marginalisation, which is often caused by stigma and prejudice about disability. Consequently, disability is increasingly regarded as a core development issue among policymakers and scholars (eg Social Analysis and Disability—A Guidance Note, World Bank 2007; Including the Rights of Disabled People in UN Programming at Country Level, UNDG 2010; Development for All, AusAID 2009–14), although inclusion of disability issues in development processes is not consistent between countries nor donors. Even where good guidelines exist, there are no formal mechanisms to ensure that they are implemented and they are consequently not well known or applied. DFID has invested in producing some excellent guidelines on disability inclusion, such as the 2007 “How To” Note on Working on Disability in Country Programmes, and the Guidance Note to Country Offices “Education for children with disabilities—improving access and quality”, but there are no mechanisms to ensure implementation, evaluation or reporting back, so these tools have a limited use or impact. This may in part be due to the lack of a specific policy on disability within the UK development agenda, which in turn may be related to the invisibility of disability within the MDG framework.
2.9 UN human rights conventions were not integral to the MDG framework. Its focus on sectoral targets and on volumes of aid, rather than the systemic changes needed to ensure people’s development rights, has meant that the underlying causes of exclusion and disadvantage were not addressed within the framework. If a post-2015 framework is to be taken seriously it needs to have legal accountability. Therefore, it should be rooted in the various human rights conventions (including the UNCRPD) and embedded in national legislation so that the poor can use their country’s legal system to hold their government to account.
3 The process: are the right voices being heard? What are the opportunities for and constraints to global consensus?
3.1 The exclusion of disability issues from the current MDGs can be linked to the absence of disabled people’s participation in the process of developing the MDG framework. The increasing profile of disability issues in recent years has led to a call for a more participatory process in developing a post-2015 framework. We applaud efforts to address this crucial issue, such as the UN Guidelines for Consultation which specify that DPOs and other representatives of the disability sector should be consulted.
3.2 However, additional effort is needed to ensure the effective participation of people living in poverty and marginalised groups—those who have the most to gain or lose from these goals. Although UN consultations have been proposed in 50 countries, it is unlikely that the voice of the most marginalised will be heard during these consultations as they will be based in major cities and not reach the most vulnerable. The UN consultation process should encourage NGOs working at the grassroots to listen to the voices of those hard to reach, to analyse and document community priorities, and provide a forum for NGOs to share this information with those at the UN deciding on the content of the framework. The Leprosy Mission has already undertaken focus group discussions with people affected by leprosy in nine countries and is in the process of compiling data to inform its positioning paper on the content of the post-MGD framework. The UN consultation process needs to ensure there is a platform to share this information and there should be an openness to learn from marginalised groups.
4 Targets: was the MDG “target-based” approach a success? Should it be retained? How should progress be measured?
4.1 The target-based approach of the MDGs made it possible, to some extent, to hold both national governments and donors accountable for progress against specific development commitments, although it had no legal basis. The goals created a sense of urgency and provided a useful tool for advocates and civil society, enabling them to move on from making the case for action, to a shared focus on how to achieve change.
4.2 However, the prevailing focus on percentage reduction targets (eg reducing $1.25/day poverty of by 50%) have meant that countries have achieved progress towards targets by focusing on those groups which are easiest to reach, rather than tackling the root causes of marginalisation and inequality. As a result, disabled people are disproportionately represented among the 1 billion people who will remain in chronic poverty even if the MDGs are achieved, because they will continue to experience discrimination, exclusion, and difficulties accessing services and development opportunities. These systemic problems will only begin to be effectively addressed if future targets are universal from the outset (such as the current education goal), aiming at poverty elimination, rather than reduction.
4.3 Despite the development gains made within the framework of the MDGs, inequality is deepening. 72% of the world’s poorest now live in Middle Income Countries, a fact that demonstrates how inequality mediates poverty and well-being more than economic growth alone. In order to tackle the systemic problems of inequality and marginalisation, specific development targets should be set within a framework that is grounded in human rights, including the UNCRPD. Post-2015 Goals should both draw on and reinforce the commitments made by governments under the international rights obligations.
4.4 Targets, by their nature, focus on numbers and this does not always give a true reflection of the quality of impact or show which groups have benefited from the change (unless data is disaggregated). As described above (3.7), an increase in the number of children in school does not tell us which children remain out of school, which have dropped out before completion, and why. Despite the goal of universal completion of basic education, attention has tended to focus on enrolment rates, with less scrutiny given to attainment, drop-out rates, quality of teacher training.
6. The content of future goals: what would be a good set of global goals? What continuity should there be with the MDGs, and how should the unfulfilled MDGs be taken forward?
6.1 There should be a clear focus on equality, equity and discrimination in the post-2015 framework. This would mean adopting a stand-alone goal on equality and discrimination, as well as the integration of non-discrimination principles and obligations in all sectors. The UNICEF/WHO Joint Monitoring Programme’s Equity and Non-Discrimination Working Group has put forward several practical recommendations for addressing equality across all goals, including a five point “Equality Checklist” which was developed for monitoring Water, Sanitation and Hygiene programmes, but which could be applied to any sector. The fifth point asks: “Do goals, targets, and indicators attend to the impacts of individual-related inequalities that are relevant in every country of the globe, such as those based on sex/gender, age, disability, and health conditions imposing access constraints—as they are experienced both inside and beyond the household?”
6.2 Disability should be mainstreamed across all post-2015 development goals. In practice this would mean: specific targets relating to the needs of disabled people within each of the goals; disability-specific indicators across all areas; a requirement to collect and monitor disaggregated data showing the impact of efforts for each goal on disabled people and other marginalised groups; holding governments and donors to account when progress is insufficient. Policymakers should ask themselves: “Could a programme being delivered under this framework be judged successful, if it did not include disabled people?”
6.3 The post-2015 development agenda should be rooted within international rights frameworks, drawing on the same fundamental values and supporting national governments to meet their obligations within those instruments, including the UN Convention on the Rights of Persons with Disabilities.
6.4 There should be flexibility within the post-2015 framework so that while the accountability in goals and targets is maintained, individual countries are able to identify meaningful, achievable but ambitious targets. At the same time, it will be important to ensure that there is room for funding and support for issues not specifically highlighted within the post-2015 development goals, in order to support the wider development process.
6.5 The post-2015 development framework should be supported by improved disability data gathering and analysis: The invisibility of disabled people in policymaking hitherto has been aggravated by the lack of basic data on disability at country level. Much work has been done over the past decade on establishing standard definitions and methodologies for identifying and analysing disability, principally by the Washington Group on Disability Statistics. It will be important to integrate these approaches into the post-2015 indicators and guidelines for monitoring and evaluation. Many countries are now in the process of including disability questions into their national census, and disabled people and their organisations are being involved in this process, such as in Cote d’Ivoire where disabled people are currently being trained as “census officers”. We recommend the replication of similar approaches across all countries.
6.6 Inclusion of disabled people is vitally important, however the post-2015 framework should also recognise that disability can, in many cases, be prevented eg through addressing NTDs. The new framework should include targets that focus on interventions that can prevent disability. This is cheaper than cure, providing greater value for money, but more importantly will relieve human suffering and prevent people from falling into poverty.
October 2012