Policy paper

LEPRA

Published 23 July 2018

This was published under the 2016 to 2019 May Conservative government

Form for submitting commitments for the Global Disability Summit 2018

IMPORTANT: Please refer to the accompanying guidance note for advice on completing this form and please fill in all four sections in English.

Your organisation:

Type of organisation: Civil Society Organisation

If other: Click or tap here to enter text.

Name of organisation Lepra

Charter for Change

Please read the attached Summit Charter for Change: the principal legacy of the Summit. If your organisation is happy to sign up to the Charter, please confirm by putting a cross in the box below.

My organisation signs up to the Summit Charter for Change ☒

Your organisation’s commitments to achieve the rights of people with disabilities in developing countries

A. Commitments to eliminate Stigma and Discrimination

Please select the category which your commitment most relates to: Representation and empowerment of persons with disabilities

Please enter the exact wording of the commitment/s, including details of others who has supported its development (75 words limit): We will enable people affected by leprosy and lymphatic filariasis, two neglected tropical diseases that are leading causes of disability in the world today to overcome disease, poverty and prejudice.

We will seek to ensure community inclusion of those with whom we work, together with associations of the affected and the disabled, and that discriminatory laws and practises are abolished.

Timeframe and/or implementation plan (75 words limit)

We will advocate on behalf of and with people affected, influencing new practices and policies, challenging bad laws and changing perceptions by confronting stigma at institutional, community and individual levels. By 2020, all Lepra programme work will have an advocacy component. Country policies and laws which have implications for people affected by leprosy and LF will be positively influenced by Lepra.

Lepra will encourage people disabled by leprosy and lymphatic filariasis to play their part in the decision making processes that concern them by facilitating their attendance of key meetings and by building their capacity to advocate for their rights. In international networks and forums Lepra will be a grounded, authoritative and widely recognised advocate.

At local level, we will double our efforts to train health staff and change their perspective positively. We will conduct campaigns in the communities we work in to turn negative attitudes and behaviours towards people affected by leprosy or lymphatic filariasis into positive and inclusive ones.

Please copy and paste this box for additional commitments under this theme.

B. Commitments for Inclusive Education

Please select the category which your commitment most relates to: Additional resources and implementation

Please enter the exact wording of the commitment/s, including details of others who have supported its development (75 words limit): We will enable people affected by leprosy and lymphatic filariasis to access quality education. We will support their return to school or widen their opportunities for higher education. We will intensify our education campaigns to raise the profile of leprosy and lymphatic filariasis and to improve the understanding of these two diseases and of the impact it has on individuals in the world today.

Timeframe and/or implementation plan (75 words limit)

We will develop training and educational programmes for people who stay at Lepra’s centres to undergo reconstructive surgery.

We will renew our efforts to secure more funding and partnerships in order to support children and young people affected by leprosy to access quality higher education.

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C. Commitments for Economic Empowerment

Please select the category which your commitment most relates to: Access to financial services

Please enter the exact wording of the commitment/s, including details of others who have supported its development (75 words limit): We will support people affected by leprosy and lymphatic filariasis in their reintegration into the economic mainstream.

A person centred, holistic, approach will be employed when developing new programme proposals, to better understand the broad yet specific needs of the people we work with. Lepra will have appropriate, relevant contacts with other networks, forums and stakeholders to foster the economic integration of people affected by leprosy or lymphatic filariasis.

Timeframe and/or implementation plan (75 words limit)

Lepra will continue its work to reduce the health-related expenditure for households with people affected by leprosy and lymphatic filariasis.

Lepra will scale up savings and microcredit schemes and other livelihoods opportunities for people affected by leprosy or lymphatic filariasis. This will be implemented by organising people affected in community groups that provide training opportunities and peer support.

Lepra will intensify its efforts to ensure that people affected can access government schemes and entitlements when relevant and will, specifically advocate for the inclusion of LF-induced disabilities in the Indian Disability Act. Lepra will review its employment practices and seek to include more people affected by leprosy and lymphatic filariasis.

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D. Commitments for Technology and Innovation

Please select the category which your commitment most relates to: New programmes or services

Please enter the exact wording of the commitment/s, including details of others who have supported its development (75 words limit): We will scale up and share with other key stakeholders our existing innovations to encourage their replication and we will strive to develop new and outstanding interventions to meet the needs of people affected and disabled by leprosy or lymphatic filariasis.

We will translate the learning we gain into other areas of our work to accelerate the development of powerful interventions.

Timeframe and/or implementation plan (75 words limit)

We will scale up our work on the development of new assistive devices and protective footwear for people affected by leprosy and lymphatic filariasis.

We will build upon our pilot project in Bihar that aims to facilitate hydrocele surgeries for men affected by lymphatic filariasis and scale it up to men affected in India and beyond.

We will integrate mental health interventions in all of our programmes to respond to these specific needs that concern 1 in 2 people affected by leprosy and lymphatic filariasis.

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E. Commitments for Data Disaggregation

Please select the category which your commitment most relates to: Commit to use the Washington Group questions

Please enter the exact wording of the commitment/s, including details of others who have supported its development (75 words limit):

We will put the individual and their needs at the heart of our Monitoring Systems and will be able to track and understand our impact on all new people to Lepra as individuals. We will focus on their journey and track their experience by using unique identifying codes.

We will use the Washington Group Questions, including the extended set for mental health, in our Core Beneficiary Survey across all our programmes to obtain data disaggregated by gender and disability, including mental health disabilities.

Timeframe and/or implementation plan (75 words limit)

We will measure, analyse and document the impact of all our activities and the lessons learned. All programme interventions, regardless of the source of funding, will have clearly stated, SMART objectives and a defined implementation cycle, with monitoring and evaluation mechanisms and interventions identified at the outset. Baselines surveys will be conducted for all new interventions. Clear mechanisms, tools and protocols will be in place for capturing, sharing and storing learning and best practice.

We will develop and utilise innovative technologies to collect and analyse live data. When relevant, we will document and publish our work through appropriate internal channels and in relevant external publications and forums.

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F. Commitments for Women and Girls with Disabilities

Please enter the exact wording of the commitment/s, including details of others who have supported its development (75 words limit): We will maximise programme impact by addressing key cross-cutting themes including gender. We will focus on closing gaps – supporting individual gender needs and issues that disproportionally disadvantage women girls.

Gender will be differentiated in our programme work, as a base for tailored interventions, and recognised in our internal policies and systems.

Timeframe and/or implementation plan (75 words limit)

We will increase the number and participation of women amongst our staff members, amongst the community champions and health volunteers we partner with; by engaging with community Accredited Social Health Activists and community midwifes in particular. We will also aim to train more women amongst government health staff and practitioners.

We will aim to secure more funding to develop programmes for girls and young women affected by leprosy who are at higher risk of being married young. We will also scale up our innovative active case finding activities that were recently successful in finding hidden cases of leprosy amongst women and girls.

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G. Commitments for people with disabilities in Humanitarian Contexts

Please enter the exact wording of the commitment/s, including details of others who has supported its development (75 words limit): Even though not an organisation working in Humanitarian contexts, we will ensure that our target group receives the same, if not greater, support than others in humanitarian crisis, this both in acute and rehabilitation phases as well as in disaster preparedness.

Timeframe and/or implementation plan (75 words limit)

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H. Other Commitments

Please enter the exact wording of any other commitment/s that do not fall under the themes above, including details of others who have supported its development (75 words limit): Lepra was founded in 1924 as the world’s first anti-leprosy agency focused on inclusion. This means helping people affected by leprosy stay in their own community and not confined to “colonies,” hospitals and sanatoria. From the outset we have therefore fought against the prejudice and exclusion experienced by people disabled as a consequence of leprosy. One hundred sixty four countries have ratified the UNCRPD. Many governments have passed laws and claim to be tackling disability inclusion. Yet the reality does not match the claims, legislation or the UNCRPD. New commitments, new pledges, new regulations and new speeches while laudable may become tomorrow’s hollow words.

An example of this is the word inclusion. Inclusion is not equality; inclusion requires extra, specific positive steps over and above equality to ensure disabled people are included and integrated into all parts of everyday life. Rather than add to the pile of unfulfilled promises, we therefore commit to advocating for meaningful implementation of what has already been claimed and so making it a reality.

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