International Development Committee Inquiry on Disability Inclusion Development.

The Leprosy Mission England and Wales (TLMEW) submission

Summary:

The Leprosy Mission England and Wales (TLMEW) is an international development organisation dedicated to eliminating leprosy and transforming the lives of those affected by it. TLMEW works in ten countries across Africa and Asia.

Leprosy is one among the 20 Neglected Tropical Diseases (NTDs), and regrettably, it stands as one of the leading causes of preventable disability among communicable diseases. Leprosy is often called a disease of poverty and affects people at multiple intersections of disadvantage, e.g., gender, education, socio-economic status etc. As a result, TLMEW has adopted a holistic approach, addressing not only the medical aspects of leprosy and disability but also building capacity within health services to diagnose and treat leprosy and its effects; investing in research that can accelerate the elimination of leprosy; improving community-based rehabilitation and mental health support to promote better health and inner wellbeing; challenging cultural misconceptions, stigma and discriminatory laws and practices; and helping people affected to improve their living and working conditions. Our commitment extends to working closely with individuals impacted by disabilities while also championing their rights.

TLMEW welcomes the opportunity to present evidence from those affected by leprosy and people with disabilities to promote a more inclusive society globally. Given the chance, TLMEW would be willing to share more insights in person. We would also welcome the opportunity to arrange for a person with lived experience of leprosy to give evidence to the Committee online or in person.

 

1. The adequacy of FCDO’s new disability and inclusion rights strategy as a framework for approaching disability-inclusive development

1.1 TLMEW welcomes FCDO’s new Disability and Inclusion Rights Strategy (DIRS) and believes it is positive and necessary. TLMEW acknowledges the strategy's commitment to ensuring equal opportunities, free from discrimination and exclusion, for individuals with disabilities. The strategy aligns with the principle of ‘leaving no one behind’ where disability inclusion has been under-prioritised and neglected for a long time. Furthermore, we are glad to see that the 2022-2030 strategy acknowledges discrimination and exclusion faced by people with disabilities. In many countries where TLMEW works, disability is associated with shame, resulting in people with disabilities being hidden away, prevented from engaging in their community. For those affected by leprosy, discrimination is a double burden, and this stigma can negatively affect their mental health and overall wellbeing. In some cases, this can lead to psychosocial disabilities such as anxiety and depression. Therefore, TLMEW stresses the importance of tackling stigma and discrimination at all levels to ensure the rights, dignity, capabilities, and contributions of all people with disabilities are respected.

1.2 TLMEW agrees with FCDO’s person centred and human-rights based approach, which seeks to respect and support human diversity by creating conditions that allow meaningful participation by people with disabilities and adopting measures to change attitudes and behaviours that stigmatize people with disabilities. In particular we believe that promoting the meaningful participation, representation and leadership of people with disabilities at all levels, including in decision-making, policy processes, and in public and political life is fundamental to this change. However, we have concerns over the lack of a clear delivery plan stating how this will be achieved. TLMEW recommends that the FCDO provides clear guidance on how it plans to ensure the inclusion of people with disabilities for example in the design, delivery and evaluation of interventions that directly affect the lives of persons with disabilities. This could be achieved through the development of comprehensive guidelines embedded within a delivery plan, with clear targets and milestones to guarantee the inclusion people with disabilities.

1.3 The strategy commits to increasing global awareness of disability-inclusive development. However, there is still a long way to go and current awareness of disability inclusion is inadequate. TLMEW highlights that the strategy's goals will not be achieved without political will but also the necessary resources, including funding, expertise, and personnel. If this strategy is going to bring about real long-term change towards a more inclusive society for all, it requires adequate funding, appropriate staff to work on implementing the actions within the strategy and expertise to ensure this is completed to a high standard. These personnel and expertise must include, if not led by people with lived experience who understand the context and changing priorities.

2. The adequacy of FCDO’s spending on disability-inclusive programmes and the impact of cuts to ODA programmes on people with disabilities

2.1 FCDO has actively increased efforts to strengthen disability inclusion development globally through investing in numerous large-scale programmes aimed at improving the well-being of people with disability. TLMEW successfully obtained UK Aid Match funding Mozambique from 2022 to 2025 for our Mission Zero initiative. This project aims to prevent leprosy-related disabilities through early detection. To date, the project has identified 219 people with disabilities affected by leprosy and facilitated their treatment. Additionally, 55 people with disabilities are engaged in savings groups, while 96 are part of self-care groups. Clearly, with the backing of FCDO, these initiatives can greatly benefit individuals with disabilities and those affected by leprosy, even within a short period of time. This underscores what can be achieved when specific funding for the inclusion of people with disabilities is made available.

2.2 Around 1.7bn people are affected by Neglected Tropical Diseases (NTDs) and almost all of these NTDs can cause disabilities such as blindness, delayed physical development, and serious physical impairments such as clawed hands, drop foot, and more. NTDs, including leprosy, is one of the significant causes of disability in low- and middle-income countries, and this undeniable link is all too often missed. We emphasise the need to invest in NTDs programmes as funds for interventions that actively conduct case management for NTDs that are not susceptible to mass drug administration are inadequate. Equally, there is insufficient attention to programmes that seek to address the stigma and discrimination faced by people with disabilities and people affected by leprosy and other NTDs. Stigma is acknowledged as a crucial aspect of the disability inclusion efforts and the strategy committed to ensuring that people with disabilities has the same opportunity to thrive as anyone else – free from stigma, discrimination and exclusion. The current approach predominantly seeks to alleviate the symptoms of stigma rather than tackling the fundamental source of the stigma. In many cultures, disability has been associated with curses, disease, dependence, and helplessness. In the case of leprosy, the stigma comes from a deep-rooted fear of the disease based on a lack of information or understanding about the disease and how it spreads. The stigma surrounding disabilities or NTDs coupled with acute illness is the cause of depression and anxiety in many cases, constituting psychosocial disabilities. TLMEW would like to see a greater focus on initiatives that address the cause of stigma related to disability.

2.3 It is also necessary that FCDO continually reconsider the eligibility of countries that can receive funding or support for disability inclusion programmes. For example, Sri Lanka was previously classed as a country that did not need additional support from DFID/FCDO. In recent years Sri Lanka has been reclassified as a lower-middle income country. Many areas of Sri Lanka are marked by conflict and high poverty rates persist, contributing to a substantial number of people with disabilities. We hope that in the future there will be FCDO support for disability-inclusive programmes in Sri Lanka.

2.4 Impact of aid cuts:

The recent equalities impact assessment on spending plans for 2023/24, published in July 2023, provides evidence that the ODA cutbacks will disproportionately affect people with disabilities. The assessment highlights that disability-specific programmes and mainstream programmes will likely be negatively impacted. TLMEW have experienced the devastation of the aid cuts to projects that were intended to provide specific support to people with disabilities in impoverished contexts. TLMEW successfully secured FCDO funding for the RISE (Recognised, Identified, Seen, Empowered) Project in February 2020. In May 2021, FCDO cut the funding of this project and the project was terminated. As a result, 9,940 primary beneficiaries and 168,185 indirect beneficiaries were deprived of essential health and livelihood interventions.

Similarly in Nepal, TLMEW secured funding for the FOUND (Fuelling Opportunities to end Unemployment of Nepalese with Disability) project aimed at enhancing the lives of individuals with disabilities through employment opportunities. Unfortunately, the project funding was cut by the FCDO. Given that the funds allocated for enhancing the economic independence of persons with disabilities are already considerably low, the decision to withdraw the funds allocated for disability inclusive employment has led to a decrease in trust of the community of persons with disability towards FCDO. FCDO need to provide consistent and reliable ODA that invest in long-term disability inclusive programmes. This contribute to restoring the trust that has been damaged among people living in poverty and people with disabilities in low-income nations.

3 FCDO’s work to encourage and facilitate the participation of people with disabilities, and relevant advocacy groups, in developing its strategy and approach

3.1 TLMEW welcomes FCDO’s commitment to ensure people with disabilities are meaningfully engaged, empowered and able to exercise and enjoy their full rights and freedoms on an equal basis with others, without discrimination and across the life-course.” While FCDO’s efforts and initiatives have bolstered political will and awareness regarding the participation of people with disabilities, there has been inadequate contact and consultations with Organisations of Persons with Disabilities (OPDs). As a result, there is a long way go before the FCDO can truly say OPDs are actively present in FDCO’s planning and strategy.

3.2 DFID’s Disability Inclusion Rights Strategy 2018-2023 clearly stated that the UK Government will “routinely undertake regular consultation with people with disabilities and their representative organisations, in the design, implementation and evaluation of programmes and policy and strategy”. However, the 2022 DIRS fails to include? an explicit commitment statement to regular consultation with people with disabilities, rather the strategy provides guidance of participation and inclusion. We are concerned that the strategy lacks an accountability mechanism to monitor the level of engagement from people with disabilities and their representative organisations. TLMEW is aware that a reference group was created to ensure accountability to the FCDO, but we are unsure how much they have been consulted in the processes. Although FCDO consulted selected OPDs during the development of the DIRS strategy in 2022, the commitment to ongoing consultation needs improvement. As was made clear in the strategy it is vital to ensure that FCDO is responding to changing priorities in the years leading up 2030 and people with disabilities and OPD are best placed to advise on these changes through continuous consultation with FCDO. TLMEW, through its partners in Asia and Africa, have not witnessed such consultations with people with disabilities. It is essential to consult the very people FCDO funding targets, and this is not happening. TLMEW would like to see a more intentional and public invitation to facilitate the participation of people with disabilities and OPDs over the next few years. FCDO could gain insights from global and supranational entities such as the UN, which have effectively harnessed the participation of individuals with lived experience. TLMEW's partners in Myanmar have experienced meaningful engagement through UN consultations, demonstrating a pathway for FCDO to follow. Once again, we would welcome the opportunity to arrange our partners to give evidence to the Committee online or in person.

3.3 TLMEW's contributions to the development of the disability inclusion strategy were channelled through the valuable feedback shared with the BOND Disability and Development Group (DDG). As part of the larger BOND DDG, TLMEW found its engagement meaningful and constructive.

4.0 The extent to which other ODA-spending departments are ensuring that their ODA expenditure is inclusive of people with disabilities

4.1 In 2022, FCDO spent £7,636 million of ODA, showing a decrease of £539 million from the previous year. This reduced FCDO's share of total ODA to 59.8%, down from 71.6% in 2021. Consequently, other Government departments accounted for 40.2% of the ODA budget, amounting to £5,138 million, a significant increase from 28.4% in 2020. Evidently, there is a large sum of the budget that is spent through other Uk Government departments rather than directly through FCDO.

4.2 TLMEW understands that pressure to support refugee costs within the country has influenced aid spending, leading to a substantial rise in in-donor refugee costs (IDRC). In 2022, £3.7 billion of ODA funding was allocated to IDRC, marking a £2.6 billion increase compared to the previous year, representing the largest annual increase in IDRC spending to date.

4.3 TLMEW are concerned about such allocations, as they divert resources meant for contributing to the development and welfare of partners in the majority world, including that of people with disabilities. TLMEW does not agree with using the ODA budget for domestic purposes. Moreover, it is unclear how the spending on IDRC benefits people with disabilities, as far as disability inclusion efforts are concerned.

5.0 The role of the UK in disability inclusion within the global humanitarian and development community

5.1 The UK hosted the first Global Disability Summit (GDS) in 2018, aiming to lead the way for disability inclusion. TLMEW appreciates the continued ambition to be the global leader in this area, ensuring that people with disabilities are meaningfully engaged, empowered, and able to exercise their full rights on an equal basis with others. However, we are concerned that since the cutbacks in aid to 0.5% and the merger between DFID and FCDO, the UK’s ambition to be a global leader may be in question. The UK Government can seek to alleviate these concerns by actively recommitting to the commitments made at the GDS 2022, showing it is still dedicated to disability inclusion.

5.2 TLMEW also recommends that the UK Government commission an evaluation of the progress made so far. This would bring about a greater understanding of what is working and specific areas that need improvement. Another way to strengthen the UK's leadership is by increasing ODA spent on disability-inclusive programmes. Without enough funding, it's hard to make real progress. TLMEW points out that increasing this funding will show that the UK is serious about being a global leader. Lastly, TLMEW recommends that the UK creates a delivery plan with clear actions and tangible targets to achieve the strategy by 2030. This way, it will be clear what the UK is working towards and how they're going to do it. By sticking to their promises, checking progress, investing more in programs, and having a clear plan, the UK can show that they are still at the forefront of supporting people with disabilities globally.

5.3 It is fundamental that person with disabilities are actively involved in the design, implementation and evaluation of policies and interventions. TLMEW believe that the UK has a responsibility to champion this and to lead by example, ensuring there is active participation from people with disabilities in all aspects of disability-inclusive interventions and policy formulation. The core of the DIRS itself focusses on dismantling the barriers that hinder full participation of people with disabilities in public life. Therefore, it is imperative for the UK actively consult people with disabilities.

5.4 TLMEW would like to highlight that the FCDO funding application process requires specific high-level technical skills which may exclude our overseas partners due to potential lack of technical, and industry-specific skills, expertise or capacity. Our partners in the majority world all too often lack these resources. As a result, the FCDO’s application processes may create barriers for active participation from people with disabilities. TLMEW recommends a simplified application process that avoids jargon and industry-specific language, which would significantly enhance inclusivity of the currently inaccessible application process. The process should also offer accommodations for partners in the majority world where necessary and appropriate. This would empower local NGOs and OPDs for access to FCDO funding, by both making funding application processes accessible, and at the same time committing funds to building the capacity of these organisations.

6.0 Safeguarding issues within disability inclusion that should be prioritised in FCDO’s work tackling sexual exploitation and abuse in the aid sector

6.1 TLMEW acknowledges the need for a strong safeguarding approach and identifies the vulnerabilities people affected by leprosy face. People affected by leprosy are more likely to face stigma and discrimination, poverty, disability and poor mental health and due to their need for extra support they are in positions of greater risk of sexual exploitation and abuse. To combat this risk TLMEW ensures that safeguarding runs through the lifecycle of all its projects and ensure that our overseas partners and downstream partners are well supported to implement a high standard of safeguarding.

6.2 Reviewing FCDO’s Disability Inclusion and Rights Strategy 2022-2030 there is a clear consideration towards safeguarding throughout, but little is aimed at safeguarding people with disabilities. The strategy also cites UK strategy: safeguarding against sexual exploitation and abuse and sexual harassment within the aid sector from 2020 which does speak more to the need for protection of people with disabilities. However, whilst it identifies that people with disabilities are at greater risk of harm, it does not address the need for safeguarding practices to be more accessible to people with disabilities. One of the key practices of safeguarding is having reporting mechanisms in place which allow people to report concerns of harm, however often the mechanisms are not accessible to people with disabilities. For example, if someone has a hearing impairment then methods such as phone lines and focal points who do not use sign language or are not trained to use other communication methods will not be acceptable. For people affected by leprosy often their hands are impacted by their disability which could then make mechanisms which require writing or typing inaccessible. Therefore, TLMEW recommends that FCDO pay greater focus is paid to making safeguarding practices more accessible to all, with the hope that the work FCDO are completing with Able Child Africa will lead to this.

8.0 FCDO’s progress in implementing the Committee’s previous recommendations, and the commitments made at the Global Disability Summit

8.1 The UK Government actively participated in the Global Disability Summits in 2018 and 2022, where they made substantial commitments aimed at enhancing disability inclusion. There has been progress made in implementing the promises they made, for example, progress on the Government’s commitment to mainstreaming disability inclusion into the portfolio of programmes. Despite this progress, there appears to be a lack of drive or urgency in fulfilling all the commitments made. It remains unclear how the Government plan to achieve these commitments, highlighting the need for a clear delivery plan that is broken down into indicators for each GDS commitment. This delivery plan should also include funding allocations and time scales.

8.2 Another commitment made at the GDS22 was that by 2025 the UK will establish meaningful engagement with people with disabilities, including through their representative organisations. We are not aware of any progress in this commitment and would welcome further information to be made public by the Government.

8.3 A significant theme and commitment that emerged from GDS18 focussed on reducing stigma and discrimination. The Summit has resulted in 170 commitments from across the world to take action on stigma and discrimination against people with disabilities. TLMEW acknowledges the enduring importance of this theme and emphasizes the need for heightened efforts to enhance the promises made in 2018. The prevalence of stigma and discrimination associated with disability continues to contribute to mental health challenges, particularly in low-income countries. Consequently, a more robust approach should be adopted to address the underlying causes of this stigma and the barriers that hinder the inclusion of people with disabilities.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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