Linking Country and Global Advocacy in Support of Disability Rights: Indonesia and Togo

The Stakeholder Group of Persons with Disabilities, the International Disability Alliance, and others, including CBM compiled a report on the High-level Political Forum and the participation of organizations of persons with disabilities (DPOs) in the Voluntary National Review process. The document entitled Case Study on the Engagement of Organizations of Persons with Disabilities (DPOs) in Voluntary National Reviews showcases the national-level DPO work carried out in different regions as well as best practices and challenges, and includes background information on persons with disabilities in each country. This case study features the volunteering countries of Argentina, Bangladesh, Denmark, El Salvador, Ethiopia, India, Indonesia, Italy, Kenya, Nigeria, Peru, Sweden, and Togo.

CBM was particularly involved in the work carried out in Indonesia and Togo. The CBM country offices in these countries particularly worked with the respective national DPOs to ensure that reports were inclusive of persons with disabilities. The following information is taken from surveys developed by CBM, the International Disability Alliance, and the Stakeholder Group of Persons with Disabilities, as well as directly shared by CBM colleagues in Indonesia and Togo.

I would like to particularly think Risna Utami, our partner from OHANA in Indonesia and Laure Tay, CBM Country Representative of Togo-Benin for their invaluable input and assistance in this process.

Indonesia

The international support and dissemination of information from the global level at the United Nations in New York encouraged local DPOs to better understand and get involved in the VNR process and to increase awareness of the SDGs at the local level for local DPOs. These provided advocacy opportunities for OHANA, a DPO and CBM partner, and other local DPOs to engage in the disability rights movement from the grassroots level. As a concrete outcome from this, persons with disabilities are mentioned once in the main messages report and twice in the full VNR report. .

In the main messages report for Indonesia, persons with disabilities are included in the section on disaggregation of data. While disability is referenced, it is in the context of the data being unavailable. In the full VNR report, there are two references of persons with disabilities. The first is related to poverty alleviation through the expansion of social protection coverage, fulfillment of basic needs, and encouraging the improvement of people’s welfare. The second reference is related to families with the lowest socio-economic status having access to basic services. Despite the aforementioned references, inputs from the national disability community were not fully included in the VNR. The reason is because persons with disabilities are considered a “vulnerable group” with separate issues, thus not intersectional in the development sector in Indonesia. Consequently, persons with disabilities are still not viewed as a mainstream issue in the implementation of the SDGs.

Recommendations from persons with disabilities to the national government are as follows:

  1. Indonesia ratified the CRPD and has formalized the national law 8/2016 on persons with disabilities, therefore it is critical that persons with disabilities are meaningfully included in national SDG implementation.
  2. Disaggregation of data by persons with disabilities needs to be a priority for the government to implement development programs inclusive of persons with disabilities and to make the rights real for persons with disabilities in line with the SDGs and the CRPD.
  3. The Guideline Budget on the perspective of the rights of persons with disabilities that the National Planning and Development Agency (BAPPENAS) published is the strategic national development tool to articulate the SDGs and disability rights implementation in Indonesia.
  4. A strong political commitment from the Indonesian Government is needed to implement the SDGs in line with the CRPD.
  5. The participation of persons with disabilities and their representative organizations are urgently needed to address disability rights in development and to have equal rights and opportunities.
  6. The government needs to adapt the 2013 policy curriculum for general education for SLB, especially part B to not discriminate or measure the ability of Deaf students and to provide training for Deaf teachers.

Status of persons with disabilities

Regarding the total number of persons with disabilities in Indonesia, currently there are no reliable numbers since many persons with disabilities are not counted as many do not have a civil ID, have no access to participate in surveys, live remotely, and are excluded from censuses. Consequently, there are varying estimations on the number of persons with disabilities in Indonesia. For example, according to LPEM FEB University of Indonesia Research Center there are 31 million persons with disabilities in Indonesia (2016) or an estimated 12.5% of the total population. On the other hand, findings from the Sosial Ekonomi Nasional (Susenas/National survey bureau/BPS) survey in 2012, indicated that the number of persons with disabilities is 6,008,661.

Indonesia ratified the CRPD in November 2011, but has not signed or ratified the optional protocol. Regulation number 8 from 2016 is the most recent law on persons with disabilities. This regulation is an improvement from the previous one: regulation number 4 from 1997. Nevertheless, the law is not fully consistent, but fairly consistent with the CRPD since the law was passed after Indonesia ratified the CRPD.

The National Statistical Office (BPS) started collecting data on persons with disabilities in 2015. They partnered with UNFPA, WHO, UNICEF, Ministries, government institutions, researchers, and organizations of persons with disabilities to develop a research instrument on disability by adopting the Washington Group Short Set of Questions. The research instrument was launched on May 7, 2014, but there has been no update since.

Poverty-eradication policies

Indonesia does not have specific poverty-eradication policies inclusive of persons with disabilities. In Indonesia, the social protection systems and measures do not include persons with disabilities. Only the national cash-transfer program managed by the Ministry of Social Welfare is inclusive of persons with disabilities. There is no inclusive social protection at the national level even for health care, education or disability pensions. In the Yogyakarta Province, there is a provincial healthcare program that covers health care and assistive devices for persons with disabilities, but this is not in place in other provinces. In Jakarta, the former Governor Basuki provides local governmental health insurance that covers persons with disabilities. It is important to note that Indonesia is a decentralized country, thus there is local autonomy in which provinces can manage and create policies and programs at the district level as long as national laws and regulations are followed.

Most persons with disabilities do not control their own money due to stigma. In particular, people with psychosocial disabilities, people with intellectual disabilities, and Blind people continue to have difficulty opening bank accounts or receiving bank loans. Consequently, stigma and discrimination are major barriers among persons with disabilities in this area.

Healthcare services

Persons with disabilities do not enjoy equal access to health services in Indonesia. Most persons with disabilities in Indonesia are poor and lack access to government health insurance. Only in a few cities and districts can persons with disabilities enjoy access to healthcare services. For example, in Jakarta and Yogyakarta, persons with disabilities have access to healthcare services because the government has political will and commitment to implement inclusive policies for persons with disabilities. While there is access, services are not fully accessible and gaps remain.

The coverage status of essential healthcare services for persons with disabilities in the Yogyakarta Province (not general coverage in Indonesia) is as follows:

  • maternal health care – there is “Jampersal,” a local government insurance that covers women with disabilities who give birth;
  • infectious diseases;
  • non-communicable diseases; and
  • therapy and early intervention for children with disabilities.

National health coverage does not have an inclusive and integrated approach for persons with disabilities. The most concerning for Indonesian citizens with disabilities is that in 2019 all local health insurance plans will be nationalized, which means all health coverage at the local level will be integrated in the national health insurance program. And, in fact, the current national health insurance program does not align with CRPD obligations. For example, affordable assistive devices are not yet budgeted in the national health coverage program. It will take a long time for CRPD principles to be implemented into national health coverage in Indonesia.

Women and girls with disabilities

Women and girls with disabilities face many challenges in Indonesia. The patriarchal culture in Indonesia places women and girls with disabilities in more at-risk situations compared to men with disabilities. Moreover, stigma and discrimination cause women and girls with disabilities to encounter many difficulties in accessing education, employment and health care. Consequently, this creates increased rates of poverty among women and girls with disabilities.

Women and girls with disabilities experience a high rate of abuse and violence at approximately 30 percent. Inappropriate health treatment is one of the roots of violence against women and girls with disabilities. Also, many women and girls with disabilities experience violence and abuse carried out by shamans or traditional healers. But, unfortunately, only a few of these cases are reported. Due to the aforementioned, gender and disability is a critical issue in implementing disability-inclusive development in Indonesia.

Accessibility 

Although Indonesia has regulations stating that public buildings and facilities must be accessible, persons with disabilities do not have equal access to the physical environment, transportation, information and communications technologies, systems and other public services. Accessibility has not been an important consideration in Indonesia and only a few cities provide accessibility in public spaces. More recently, there has been a movement to push for accessibility in Indonesia, but the implementation is far from ideal. For example, all the buildings in the District Offices of Boyolali are built with ramps, but then some of them are used for parking instead, thus blocking the accessibility features into the buildings.

Alt="Risna Utami and DPO partners at 2017 HLPF"

Risna Utami and DPO partners at 2017 HLPF

Togo

Togo is an interesting case as it is the only country to have volunteered to review three years in a row (2016, 2017, and forthcoming in 2018). The CBM office in Togo was instrumental in supporting the umbrella DPO – Fédération Togolaise des Associations de Personnes Handicapées (FETAPH) – in Togo to participate in the VNR consultation process. Specifically:

 

  • In 2016, the CBM office in Togo organized a meeting with FETAPH’s program department to raise awareness regarding the SDGs, namely over Goals 4, 8, 10, 11, and 17 in which persons with disabilities are included. Documents were provided to FETAPH even though most of them are in English. This meeting and further exchanges related to this topic contributed to equip DPOs and enhance their participation in the SDG implementation process.
  • In 2016, during the first VNR report, FETAPH was not directly involved in the consultation process, instead the participation was through the department of persons with disabilities within the Ministry of Social Affairs. However, the information provided through the VNR questionnaire (facilitated by the International Disability Alliance, CBM, and the Stakeholder Group of Persons with Disabilities) provided a better understanding of the SDG follow-up and review process and the importance for persons with disabilities and their representative organizations to be involved.
  • In 2017, FETAPH’s participation increased during the second VNR consultation process. This was partially due to the fact that the second VNR report was linked to the National Development Plan, 2018-2022 which in turn is linked to SDGs. An example of participation is that CBM and FETAPH collaborated to complete a form distributed by the Ministry in charge of the National Development Plan to stakeholders, financial partners, and other civil society members. The purpose of the form was to provide information on initiatives to be implemented during the period of 2018-2022, and the results will feed into the National Development Plan, which is under validation.

As an outcome of advocacy efforts at the national level, the government of Togo referenced persons with disabilities three times in the 2017 VNR. Specifically, the Ministry of Social Action supported 47 persons with disabilities in Lomé with food and granted micro credits to 53 women with disabilities through a partnership between the National Fund for Inclusive Finance and the Ministry of Social Action for “vulnerable” women. In addition, a grant was given that provided 60 tricycles and 60 wheelchairs to 120 persons with disabilities in 2015 by the Ministry of the Environment in partnership with the Ministry of Social Action to increase the resilience of persons with disabilities during natural disasters.

In addition to the references of persons with disabilities in the 2017 VNR, FETAPH, participated in data collection through the VNR questionnaire. FETAPH also participated in a validation workshop which took place in Lomé from 8 to 9 June, 2017. During the meeting, it was discussed that the SDGs have still not been implemented in Togo, and consequently little has been carried out at this point.

FETAPH presented its advocacy requests and inputs, and was prepared for this largely due to the information provided through the VNR questionnaire. Ultimately, it was difficult to get the advocacy requests included in the report due to various reasons. First, the report needed to be as concise as possible, so written recommendations were not included, but only shared orally. Second, the Goals under review in 2017 (SDGs 1, 2, 3, 5, 9, and 17) were not directly related to persons with disabilities.

Even though FETAPH’s inputs were not concretely addressed in the VNR, FETAPH was involved in the elaboration of the National Development Plan. The following needs of persons with disabilities such as employment, education, health, and accessibility are included in the plan. The plan will be validated in the coming months and its implementation will begin in 2018.

Overall, FETAPH recommends to the government of Togo to (1) adopt the national law related to the protection of persons with disabilities and its enforcement decrees, (2) the establishment of inclusive education in Togo, and (3) the inclusion of persons with disabilities into national statistics.

Status of persons with disabilities

Due to the lack of a national survey on persons with disabilities in Togo, data on persons with disabilities is unreliable. The national statistics institute survey from 2015 indicates that persons with disabilities represent 2.2% of the population (enquête QUIBBE 2015: Questionnaire Unifié des Indicateurs de Base et du Bien Etre), but there is no data on how many women or men with disabilities are in Togo. Due to the unreliable data in Togo, FETAPH bases its work on the WHO and World Bank report (2011) that estimates that 15 percent of the global population comprises persons with disabilities.

Togo has Law n° 2004-005 on social protection of persons with disabilities, which was adopted in 2004. The CRPD and its optional protocol were ratified seven years later in 2011.

Poverty-eradication policies

There are specific policies to eradicate poverty, including the social-protection policy, employment policy, and national health policy. Persons with disabilities, through their representative organizations, are involved in the further development of these policies. The issue lies in the actual inclusion at the implementation stage in which technical efforts and financial commitments are required to improve the quality of life of persons with disabilities. Although, one positive example, is that the national fund for inclusive finance provides micro credit to women with disabilities.

Social-protection systems and measures do cover persons with disabilities in Togo. There is a pilot cash-transfer program in two regions, although there is no data on the number of children with disabilities covered. In addition, eye care and physiotherapy are covered by the national health insurance for persons with disabilities working in the public sector.

In Togo, there are no legal barriers preventing persons with disabilities from being in control of their own financial resources. The problem is that many persons with disabilities, especially in rural areas, do not have financial resources because of the lack of livelihood opportunities for them.

Healthcare services

Persons with disabilities can access general healthcare services, which are open to all people, although there is no policy regarding accessibility to healthcare services. The challenges emerge with specific services, such as the lack of accessibility of a childbirth table for some women with disabilities. Also, health and rehabilitation services are not affordable for all persons with disabilities due to poor economic conditions.

There are various barriers for persons with disabilities when trying to access regular healthcare services. These include lack of accessible buildings and written materials, difficult access to reproductive, maternal and child health for persons with disabilities, and the high cost of technical and rehabilitation resources for persons with disabilities (wheelchairs, tricycles, prosthesis, canes, and so forth).

In Togo, there is one national and four regional public centers providing physical rehabilitation support and assistive devices for persons with disabilities. The problem is the poor and unsustainable quality of these materials and that these devices are not affordable since the devices are not subsidized by the government.

Women and girls with disabilities

The main challenges that women and girls with disabilities encounter in Togo include lack of access to healthcare services, including assistive devices (canes, wheelchairs, tricycles, hearing aids, and so forth); lack of access to inclusive education, including professional training; and lack of access to employment (public and private), including financial and resource support.

There are no statistics on if women and girls with disabilities experience high rates of abuse or violence in Togo, but there is a significant number of girls and women with disabilities in “non-comfortable” marital situations, and often, women and girls with disabilities take on more of the responsibility of caring for their children without the assistance of their husbands.

Accessibility  

Togo does not have regulations requiring that public buildings and facilities are accessible for persons with disabilities and consequently persons with disabilities do not have equal access because most buildings (especially the old ones) are inaccessible. From advocacy, the government is making efforts and new buildings (primary schools, markets, courts, and so forth) are accessible with ramps. In terms of transportation, not all infrastructure is accessible. For example, transportation by bus is not accessible for wheelchair users, but the new airport in Lomé provides the minimum standards of accessibility. Information and communication technologies are accessible to some persons with disabilities, but not all. For example, on national television, a sign language interpreter provides access to news to deaf and hard of hearing persons. However, this is only during a brief period during the day (at 1 pm) when most people are not home, and private television does not provide sign language interpretation. In order to continue and strengthen the advocacy in this area, FETAPH is fundraising to organize a national survey on accessibility for all persons with disabilities in Togo.

The institute of statistics in Togo is based in the department of planning and development. The institute was in charge of the national census in 2010. The institute published a survey result in 2015 indicating that in Togo 2.2% of the whole population compromises persons with disabilities. The results obtained are not satisfactory because data collection was not carried out in a cooperative way with DPOs. Thus, the data collected on persons with disabilities is far from the national reality. Currently, FETAPH is advocating and raising funds for specific data collection on persons with disabilities in Togo.

In closing, the linking of global processes and national realities is an area of strength for CBM. The two aforementioned examples of Indonesia and Togo in the 2017 VNR process highlight the importance of disseminating information, creating synergies, and raising awareness between global and national processes to truly leave no one behind.

Les bureaux de CBM a Bruxelles et en Haïti collaborent pour la 34 Assemblée Parlementaire Paritaire (APP) à Port au Prince/CBM offices in Brussels and Haiti collaborate together for the 34th Joint Parliamentary Assembly (JPA) in Port-au-Prince

Haiti 2
Dans le cadre de l’ accord de Cotonou, la 34eme session de l’assemblée parlementaire paritaire APP s’est déroulée a Port au Prince en Haïti, ou les parlementaires européens ont rencontre les parlementaires africains, des caraïbes et des pacifiques pour échanger sur des thématiques telles que les ressources naturelles, la croissance démographique ou encore la lutte contre les maladies infectieuses. La tenue de l’APP en Haïti a permis de renforcer la collaboration entre les bureaux CBM de Bruxelles et de Port-au-Prince, par la tenue conjointe d’un stand où nous avons combiné un plaidoyer européen et national, présenté certaines de nos publications mais également organiser une visite de terrain au centre pour inclusion développé en collaboration avec le bureau du secrétaire d’État pour l’inclusion des personnes handicapées et finance par l’Union Européenne. La présence de CBM à l’APP est fondamentale car elle permet tout d’abord de renforcer la visibilité de notre organisation mais également de pouvoir échanger dans un cadre beaucoup plus informel avec les parlementaires et diplomates des différents continents permettant par la suite de pouvoir faire un lien concret avec nos bureaux pays et régionaux.Le plaidoyer fait au niveau européen avec la collaboration potentielle des bureaux pays et régional est un levier important pour favoriser les engagements politiques en matière d’inclusion et cela à tous les niveaux, local, national, régional et international. Il ne s’agit pas seulement de développer des relations étroites mais il s’agit également de faire valoir notre organisation et notre travail dans le monde tout en essayant de convaincre les non convaincus. Notre visibilité lors de l’APP permet aussi tout simplement de rappeler l’importance qu’il faut accorder à la thématique du handicap, tout en permettant d’introduire et d’expliquer des concepts clés tels que l’inclusion, l’approche twin-track ou encore l’approche droite humaine. Ces quelques jours à l’APP font déjà montre des résultats concrets suite à l’intervention de Mause-Darline François du bureau de CBM Haïti lors du Forum jeunesse de l’APP qui à par la suite par été contactée par le ministère de la jeunesse et des sports afin que trois entrepreneurs handicapés puissent participer à une émotion de TV qui sera prochainement créée. La chambre des députés d’Haïti a également contacté CBM pour participer à leur prochaine réunion jeunesse et enfin le groupe des socialistes et démocrates à demande à Eugenie Pierre, chanteuse et stagiaire au bureau CBM en Haïti d’ouvrir leur réunion par le chant de l’hymne d’Haïti. Ces résultats positifs sont nous l’espérons les prémices de résultats sur le plus long terme.
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Haiti
Under the framework of the Cotonou Partnership agreement, the 34th session of the Joint Parliamentary Assembly took place in Port-au-Prince Haiti, where members of the european parliament met with parliamentarians from Africa, the Carribean and the Pacific to talk about issues such as natural ressources, harnessing the demographic dividend and infectueuse diseases.Having the JPA in Haiti gave the opportunity to reinforce the collaboration between CBM offices in Brussels and in Port-au-Prince by holding a stand where we presented CBM’s publications and where we combined national and european advocacy while also organising a field visit to the center for inclusion, a CBM project developped in collaboration with the bureau of the Secretary of the State for inclusion of persons with disabilities and funded by the European Union. The presence of CBM at the JPA is fundamental because it allows more visibility of the work being done by the organisation but it also allows echanges in a more informal setting with the parliamentarians and diplomats of the different continents giving me the opportunity to make a direct link with our regional and country offices. Advocacy at European level with the potential collaboration of country and regional offices is an important level for promoting political commitments on inclusion at all levels, local, national, regional and international. It’s not just about developing close relationships, it’s also about promoting our organisation an the work we are doing around the world while trying also to convince the unconvinced. Our visibility at the JPA allows us also to simply recall the importance that must be attached to the topic of disability , while introducing and explaining key concepts such as inclusion, the twin-track approach or the human rights based approach. These few days at the APP have already shown concrete results after the intervention of Mause Darline Francois from CBM Haiti office at the Youth Forum of the JPA which was subsequently contacted by the Ministry of Youth and sports to invite three young entrepreneurs to participate in a TV show that will be created soon. The Chamber of Deputies of Haiti also contacted CBM to attend their next meeting of the youth and finally the group of Socialists and Democrats asked Eugenie Pierre, singer and trainee at the CBM office in Haiti to open their meeting by singing the hymn of Haiti. These positive results are we hope the premices of results on the longer term. 

International Day of People with Disabilities: Include Us

This post has been written by Elle Spring is an Advocacy and Communications Officer at CBM Australia. Her passion is storytelling for change and she has recently returned from collecting stories of the lived experiences of people with disabilities in Vanuatu.

Globally, one billion people have a disability, and 80 per cent live in developing countries. In developing countries, women comprise three quarters of people with disabilities. Women and girls with disabilities are disproportionately represented and are often the furthest left behind.

To mark International Day of People with Disabilities (IDPD) on 3 December 2017, CBM has created a video to highlight their unique experience, the contributions they have to make, and the importance of including women and girls with disabilities in all development efforts.

 

Meet Nelly from Vanuatu; a leader, an advocate and the National Coordinator of Vanuatu Disability Promotion and Advocacy Association (VDPA) – the national Disabled People’s Organisation.

Nelly, the National Coordinator of Vanuatu Disability Promotion and Advocacy Association (VDPA)

Nelly, the National Coordinator of Vanuatu Disability Promotion and Advocacy Association (VDPA) ©Erin Johnson/CBM Australia

“I’m happy that I am a woman with disabilities and I am a leader…I’m not only advocating for me, but for my members as well.

However, this is not common. “In Vanuatu, you hardly see women with disabilities leading different organisations. It’s really hard because of the barriers they face.”

Women and girls with disabilities face multiple layers of discrimination; creating barriers which stop them from achieving their full potential.

“Women with disabilities face double, and most times triple discrimination, because they are a woman, and they have a disability, and the abuses they face or the discrimination they face in society.”

“When you come out from your house and someone is staring at you, its discrimination already and you feel like you’re not part of the community – that’s what our women and girls with disabilities are facing in the community.”

Women and girls with disabilities are often hidden away by families, excluded from decision-making – even about their own bodies – and are less likely to attend school than girls without disabilities. In developing countries just 32.9 per cent of girls with disabilities complete primary school.

“Most of our women and girls [with disabilities] have not had education, they are left at home.”

Without education, it makes securing formal employment far more difficult, especially when many women and girls with disabilities are unaware of their rights.

“Most women with disabilities, they are volunteers – they do work without any pay and we always advocate for their rights. If this lady did the same work as a woman without disability, you need to pay her the same amount.”

“Women and girls with disabilities should know their rights. They need to know they have the same rights as anyone else. They have to be empowered and live as anyone else.”

The United Nations (UN) theme for International Day of People with Disabilities this year is: Transformation towards sustainable and resilient society for all. It draws attention to the changes that must be made to ensure the 2030 Agenda – which aims to leave no one behind – can be realised. As former Secretary General of the UN, Ban Ki-moon stated:

To be truly transformative, the post-2015 development agenda must prioritise gender equality and women’s empowerment. The world will never realise 100 per cent of its goals if 50 per cent of its people cannot realise their full potential.

Without including women and girls with disabilities in all development efforts, the inclusive world envisioned by the 2030 Agenda cannot be achieved, and women and girls with disabilities will continue to be furthest left behind.

“We need to work towards a society that is inclusive, barrier-free and rights-based for all. Women with disabilities need to become leaders for tomorrow. We are agents of change.”

“If more women with disabilities are taking leadership positions and advocating for the rights of women and girls with disabilities, and all people with disabilities, I believe that we will not leave anyone behind. Include us!”

Fighting Neglected Tropical Diseases: The case for participation and human rights based approaches

This is an excerpt from a blog written by CBM Senior Advisor for Neglected Tropical Diseases (NTDs) – KH Martin Kollmann for the International Coalition for Trachoma Control.

Neglected tropical diseases (NTDs) are causes and consequences of poverty, disability and marginalization. They disproportionately affect the world’s poorest communities and can have profound physical, mental, social and socioeconomic effects on those who lack the resources for prevention, treatment and care. Thus NTD programs can be viewed as an investment in the poorest and most marginalized communities and a critical step towards reaching the 2030 Sustainable Development Goals (SDGs).

Have a look at CBM’s Neglected Tropical Diseases Report 2017.

In order to achieve the SDGs we must ask ourselves how to best minimize the adverse effects of NTDs. What measures do we need to put in place to ensure those affected are not sentenced to poverty, marginalization, discrimination or exclusion?

Hint: Key answers lie in participation and human rights based approaches.

The involvement of communities and people affected is not a new concept in primary health care and disease programs. Many international human rights treaties explicitly state that all people have the right and duty to participate individually and collectively in the planning and implementation of their health care. However, the active participation of people affected by NTDs is not always a reality. Human rights based approaches to NTDs emphasize that any interventions should be based on the principles of participation, non-discrimination and accountability.

Treaties and conventions like the Convention on the Rights of Persons with Disabilities recognize and codify the rights of persons who are disabled, women, children, indigenous peoples and other marginalized groups. People with NTDs often fall into several of these mutually overlapping categories, which is why participatory and human rights based approaches are particularly relevant in the design and implementation of our programs and our advocacy work.

NTDs can cause chronic disability and are highly stigmatizing, which often leads to discrimination, marginalization and exclusion. In many countries, two thirds of persons with disabilities are unemployed and those who have jobs often only work part time. This is particularly true for people who experience advanced trachoma, the world’s leading infectious cause of visual impairment and blindness.

Trachoma, like other disabling NTDs, reduces economic productivity and increases social exclusion, which can cause family breakdowns and abandonment. As a result, many women, who are disproportionately affected by the disease, downplay or conceal visual impairment and pain for fear of exclusion or stigmatization. Similarly, other disabling NTDs can lead to severe stigma, associated mental health problems and social exclusion. These social consequences are often described by the affected as the greater disability.

76 year old Musamba (centre), who is blind from Onchocerciasis (River Blindness), receives Mectizan tablets from our project workers in DRC.

76 year old Musamba (centre), who is blind from Onchocerciasis (River Blindness), receives Mectizan tablets from our project workers in DRC.

Participatory and human rights based approaches, such as Disease Management Disability and Inclusion (DMDI), address these often-neglected aspects of NTD work as a crosscutting theme. They are guided by the principal that people and communities affected by NTDs are essential to the success of programs. Having experienced the disease, disability and associated discrimination, people affected by NTDs have a unique voice and perspective, they bring passion to the work and take the programs closer to the communities they are designed to benefit.

Placing persons affected by NTDs at the center of our program work requires a major paradigm shift, which has profound implications on how services are planned, delivered and evaluated. However, examples from the field have shown that when affected people and communities are given ownership to actively plan, implement and evaluate activities, it leads to better outcomes, improves cost-efficiency and enhances sustainability.

Participation and human rights based approaches are particularly relevant for the last mile of NTD elimination. By enhancing the recognition, systematic inclusion and valued participation of affected people and communities, these approaches assist in creating sustainable, comprehensive and inclusive NTD programs that are fully integrated into national health systems.

In 2015, the international community explicitly recognized the importance of NTDs, calling for their end in SDG 3.3. Moreover, through SDG 3.8 the international community reiterated its commitment to the equality and human rights of all people by including universal health coverage as a key goal – a principal that lies at the core of our NTD work. With over one billion of the world’s people affected by NTDs, it is clear that upholding these human rights will have to happen in a sustained and participatory approach if we are to achieve our goals with no one left behind. The NTD community should be at the forefront of making this a reality.