International Development Committee inquiry on Disability Inclusion Development
The Leprosy Mission Trust India (TLMTI)
The Leprosy Mission Trust India (TLMTI) is the largest leprosy-focused non-governmental organisation (NGO) in India. Leprosy (Hansen's Disease) is caused by a bacillus (germ) called Mycobacterium leprae (M. leprae). A cure for leprosy, Multidrug therapy, has been available since 1982. This is a combination of three drugs taken daily for six or 12 months, depending on the severity of the disease. While treatment stops leprosy progressing, it can’t reverse disability. Left untreated, leprosy causes permanent damage to the skin, nerves, limbs, and eyes. The loss of sensation makes everyday activities challenging and causes patients to develop chronic ulcers and permanent disabilities such as loss of limbs, sight and ability to work.
TLMTI works with people affected by leprosy and other neglected tropical diseases (NTDs), people with disabilities, and marginalised communities. We aim to transform society, communities, and people affected by leprosy, so that leprosy, and its associated deep-rooted, age-old fear and stigma are overcome. And because of this, people affected by leprosy and other disabilities are included and live as valued and useful members of society.
1.0 The adequacy of FCDO’s new disability and inclusion rights strategy as a framework for approaching disability-inclusive development
TLMTI is pleased that assistive technology has been identified as a key enabler for change and one that FCDO has committed to expanding. Assistive technology is expensive, and it can be difficult to find qualified professionals to provide support to people with disabilities. Not only does this present a challenge for individuals with disabilities but also institutions that provide assistive technology for those affected by disability. Our 16 Leprosy Mission hospitals across India use their orthotic and prosthetic units to provide customised technology and devices to those with disabilities as well as supply government hospitals with additional orthopaedic support. The FCDO needs to make sure that it is investing enough money in disability-inclusive programming to make a real difference in the lives of people with disabilities in India.
In the disability inclusion strategy, FCDO has committed to working with local partners to ensure that disability-inclusive programmes are implemented effectively. TLMTI suggests that FCDO should have a greater focus on working with local partners rather than large INGOs to build capacity at local level and directly involve those who work with people affected by disabilities and those living with the consequences of having a disability. These local partnerships will help to ensure that every decision FCDO takes is based on accurate data led by local decisions and local impact. FCDO should continue to emphasise the importance of collecting data on the impact of its disability-inclusive programmes to track progress and make necessary adjustments.
In addition to this, FCDO should also improve its efforts to advocate for disability rights at the national and international levels. By taking these steps, the FCDO can help to ensure that people with disabilities in India have the opportunity to participate fully in society. FCDO have a considerable voice which should be used effectively to increase equal and fair rights for those with disability across the globe.
2.0 The adequacy of FCDO’s spending on disability-inclusive programmes and the impact of cuts to ODA programmes on people with disabilities
The FCDO's spending on disability-inclusive programmes in India has increased in recent years, but it is still not clear if it is enough. In 2020, the FCDO spent £70 million on disability-inclusive programmes in India, which represented about 10% of its total aid spending in the country. This is a significant increase from the £20 million that the FCDO spent on disability-inclusive programmes in India in 2015. However, it is still less than the 20% of aid spending that the UN recommends for disability-inclusive programmes.
There are a number of factors that make it difficult to say definitively whether the FCDO's spending on disability-inclusive programmes in India is enough. One factor is the diversity of disabilities that people in India face. There are over 100 million people with disabilities in India, and they have a wide range of needs. Some people with disabilities need access to assistive technology, while others need support to participate in education or employment. The FCDO's disability-inclusive programmes need to be tailored to the specific needs of the people they are serving. The framework and investment into the framework need to stipulate who they are targeting in relation to people with disabilities and focus on the needs of those individuals.
Formally, the UK Department for International Development (DFID) provided £2.5 million in funding to The Leprosy Mission Trust India's (TLMTI) Challenging Anti Leprosy Legislation (CALL) project. The project ran from June 2010 to March 2015 and aimed at reducing social and legal discrimination faced by people affected by leprosy in India and their family members.
TLMTI was pleased with the support for DFID, which included:
The CALL project was a success in reducing social and legal discrimination against people affected by leprosy and disability in India. It helped The Leprosy Mission to repeal the Lepers Act of 1898 while also providing legal aid and awareness to people affected by leprosy, empower them to claim their rights and build community-based organisations in project areas. The project also raised awareness of the issue of discrimination against people affected by leprosy and disability and helped to change societal attitudes towards them.
The CALL project was a valuable contribution to the fight against discrimination against people affected by leprosy and disability in India. Projects like these make a real difference in the lives of many people and have helped to change society's view. These outcomes will have a long-standing impact for those affected those affected by leprosy and people with disabilities. These were only possible with the support of FCDO. Therefore, FCDO must continue to prioritise and fund projects to ensure disability inclusion.
After the project concluded, The Leprosy Mission developed a follow-up project called CREATE (CSOs for Resource mobilisation, Empowerment, Advocacy, Training & Employment) and the European Commission funded advocacy project, which worked with leprosy and disability champions to advocate for change across local, state and national levels.
Evidence suggests that the FCDO could be doing more to support people with disabilities in India. The FCDO should increase its spending on disability-inclusive programmes and make sure that the programmes are tailored to the specific needs of the people they are serving.
The Leprosy Mission Trust India hasn’t personally received any cuts from development programmes, but we know that our partners at The Leprosy Mission have. This includes The Leprosy Mission Bangladesh, which successfully won an £1,013,049 Aid Direct grant to implement the RISE project, aimed at supporting communities affected by leprosy and disability in Bangladesh. Unfortunately, the project funding was cut by FCDO and the project was cancelled. As a result of the cuts, thousands of marginalised women and children living in extreme poverty missed out on health education and income generation opportunities, which they could have used to lift themselves out of poverty. The fund for The Leprosy Mission Nepal’s FOUND project was also cut. This 3-year £1,917,388 project has been planned to secure employment for 2,500 people affected by leprosy and disability in Nepal.
3.0 FCDO’s work to encourage and facilitate the participation of people with disabilities, and relevant advocacy groups, in developing its strategy and approach
Although TLMTI hasn't had any direct group discussions to inform FCDO decision-making, as an organisation, TLMTI has a wide network of people affected by leprosy and disability, in which we consult and partner within our organisation and programmes. Our vision is to see their voices heard and for them to be included in decision-making at local, state, national and international levels.
In India, there are hundreds of Civil Society Organisations which are directly managed and led with people with disabilities. These also include Leprosy Peoples’ Organisations governed and directed by people affected by leprosy. FCDO should utilise these network structures to their advantage to gather feedback from disability-led groups and organisations.