Data and persons with disabilities

The first UN World Data Forum took place in Cape Town, South Africa, from 15-18 January 2017, hosted by the Government of South Africa and Statistics South Africa. The Forum brought together key experts from governments, businesses, civil society and the scientific and academic communities to discuss opportunities and challenges and showcase the latest innovations to improve data and statistics for the 2030 Agenda for Sustainable Development.

Why is data important for persons with disabilities?

Data collection can provide the number of persons with disabilities in a location, the barriers, and what policies and programs are needed to eradicate those barriers. Disaggregation of data by disability is a key step in including persons with disabilities who encounter higher rates of poverty and exclusion from society.

To disaggregate by disability status in the SDG indicators, it merely requires the addition of a small set of questions – such as the Washing Group short set – on already existing data instruments. When disability questions are included in the data systems that produce the SDG indicators, disaggregation of data is not only feasible but can easily be accomplished.

The 2030 Agenda for Sustainable Development specifies that data should be disaggregated by “income, gender, age, race, ethnicity, migratory status, disability, geographic location and other characteristics relevant in national context” (17.18). Overlooking these groups undermines the Agenda’s core concept of leave no one behind.

In contrast to the Millennium Development Goals (MDGs), civil society and other stakeholders, including persons with disabilities, have more space to drive and be involved meaningfully in the SDG indicator framework, particularly at the national level. The main reason for this is because the SDGs are country led, use a multi-stakeholder approach, and employ the principle of leave no one behind.

Alt="Elizabeth Lockwood CBM International, Berhanu Tefera from African Disability Forum, and Sarah Meschenmoser from CBM Germany"

Elizabeth Lockwood from CBM International, Berhanu Tefera from African Disability Forum, and Sarah Meschenmoser from CBM Germany

Disability inclusion at the Forum

Persons with disabilities had a strong presence at the Forum. This included an IDA-IDDC disability-focused side event (more below), having various panelists throughout the Forum highlighting disability (e.g., World Bank, DFID, and WHO) and with many DPO representatives and allies as participants and panelists. Moreover, in the opening session, Mr. Wu Hongbo, Under-Secretary-General of DESA, included the need for data on persons with disabilities in his speech. Similarly, at the end of the Forum, disability was again highlighted as a group that needs to be addressed in data. Particularly relevant, is that in the final session on the IAEG-SDGs, two members included disability in their final conclusions on the Forum (Jamaica and Fiji).

Also, there is a disability reference in the Cape Town Global Action Plan for Sustainable Development Data that was launched at the World Data Forum. IDA and IDDC were active in advocating for this reference, so we welcome the inclusion of disability language. Specifically, the Plan states “Support the strengthening and further development of methodology and standards for disability statistics” (Objective 3.5). “Accessible” is also used twice in the document. While this is a good first step, the language can be improved from “strengthening” and “development,” to systematic mainstreaming of disability statistics. But as was stated in the closing session, the GAP is only the first step of what needs to get done and the beginning of a process.

GAP background

The Global Action Plan (GAP) was drafted by the High-Level Group on Partnership, Coordination and Capacity-Building (HLG) as one of the Group’s main objectives (the other was convening the UN World Data Forum). The GAP focuses on monitoring and statistics and calls for a full, active and focused commitment of government, policy leaders and the international community to implement the sustainable development agenda. Furthermore, the GAP calls for policy leaders to achieve a global pact or alliance that recognizes that funding modernization efforts of National Statistical Offices (NSOs) is essential to the achievement of the 2030 Agenda.

The (projected) work plan of the GAP:

  • January 16, 2017 – the GAP was launched at the UN World Data Forum, Cape Town, South Africa
  • March 2017 – Present the GAP to UNSC for endorsement by members
  • May/June 2017 – Endorsement of ECOSOC
  • July 2017 – HLPF: Side event to provide an update on the GAP
  • September 2017 – UNGA: Endorsement of UNGA
  • September 2017 – UNGA: Side event to provide an update on the GAP

Disability data event

The program covered six main themes, one of which was on leaving no one behind. Specifically, this theme looked at innovative approaches for SDG follow-up and review on all groups, data in post-conflict countries, and data and human rights.

I was a focal point organizing the session focused on disability data on “collecting disability data toward implementing the sustainable development goals and the Convention on the Rights of Persons with Disabilities.” The key messages and recommendations that jointly emerged from the compelling session are as follows:

  • The inclusion of the Washington Group disability short set of questions in data collections that produce the sustainable development goal (SDG) indicators is a tested and efficient method for disaggregating indicators by disability status for monitoring the SDGs and the overarching objective of leaving no one behind. In addition, a child functioning module has been developed by the Washington Group and UNICEF for monitoring ‎the status of children with disabilities.
  • It is very feasible to disaggregate data by disability status at the primary and secondary levels in a range of health programs and within ministry of health and NGO facilities and outreach. The key is what is next?
  • Collection of disability-related data is greatly improved by involving organizations of persons with disabilities (DPOs) and persons with disabilities in data collection analysis and related programs and policies. NSOs and other organizations responsible for data collection and analysis would benefit by having persons with disabilities on their staff as well.
  • The Washington Group short set endorsed by UN agencies provides a way to leave no person with disabilities behind by disaggregating the SDGs. It is critical to make use of this tool for planning and monitoring, and to go beyond disaggregation to understand how discrimination occurs and how to challenge these, while at the same time engaging with DPOs to hold their governments accountable.

Next steps and upcoming data-related events

  • A plan will be developed for increasing the data coverage of tier II indicators with the joint working group of the IAEG-SDGs and the HLG.
  • The 8th meeting of the HLG will take place on Sunday, 5 March 2017 in New York to discuss the outcomes of the first UN World Data Forum and plans to develop a short summary document on lessons learned.
  • The IAEG-SDGs will hold two meetings, the first in March 2017 and the second in the fall of 2017.
  • The 9th meeting of the HLG will take place in September/October 2017.
  • The next World Data Forum will take place in Dubai in two years.

This was the first of many UN world data gatherings, so let’s keep working together to ensure that no one is left behind and to build a more inclusive society.

Additional information

IDA and IDDC joint blog for the UN World Data Forum

IDA and IDDC joint blog for the UN World Data Forum in International Sign

World Data Forum Article on persons with disabilities

Six SDGs and why they matter for persons with disabilities

Happy New Year! In 2017, we, as advocates for the rights of persons with disabilities in CBM, will continue to engage in the inclusion of persons with disabilities in the implementation of the 2030 Agenda for Sustainable Development and its Sustainable Development Goals (SDGs) nationally, regionally, and globally. Therefore, it is good to revisit why the SDGs are important for an inclusive society to truly leave no one behind. Please continue reading for some brief highlights on six of the Goals (5, 6, 10, 11, 16, and 17) and why they are important for persons with disabilities.

Goal 5. Achieve gender equality and empower all women and girls

Achieving gender equality and empowering all women and girls is imperative due to the multiple barriers and exclusion that women and girls with disabilities experience. Up to 20 per cent of women globally have a disability[1] and women and girls with disabilities encounter triple discrimination: being female, having a disability, and being among the poorest of the poor.[2] Women and girls with disabilities have additional barriers compared to men with disabilities and women without disabilities. This includes exclusion from participating in a sustainable and inclusive economy, an increased risk of violence and abuse, lack of access to justice, minimal participation in political and public life, and prejudice and discriminatory attitudes in sexual health, reproductive rights and in the right to family life.

Goal 6. Ensure availability and sustainable management of water and sanitation for all

Ensuring the availability and sustainable management of water and sanitation for all is important since 884 million people worldwide do not have access to safe drinking water. Assuming this group of people is the poorest of the poor, at least 177 million are likely to be persons with disabilities (20 per cent of poorest)[3], thus affecting a significant population of the world. Unsafe drinking water, poor sanitation, and insufficient hygiene practices, and inadequate disposal of human and animal waste have major health implications including causing Neglected Tropical Diseases amongst others.

Access to safe and affordable water and sanitation facilities greatly benefit persons with disabilities and their families, improving nutrition and preventing death and diseases; reducing poverty and promoting socioeconomic development; labor saving; reducing hazards; and increasing dignity, self-reliance and independence.[4] [5] Sustainable development can only be achieved if it includes measures to prevent discrimination based on disability and ensures equal access to clean water and sanitation facilities, fulfilling the right to an adequate standard of living. Click here for more on this topic.

Goal 10. Reduce inequality within and among countries

An inclusive and equal society is more likely to be sustainable. Having better access to quality education and health services, housing and clean water, land, financing and judicial recourse means that persons with disabilities can become better equipped to contribute to economic growth, and participate on an equal basis in society.

Disability-inclusive development involves the meaningful participation and inclusion of all community members (including persons with disabilities, women, Indigenous Peoples, older persons, children and youth, and ethnic minorities in rural and urban areas). To ensure inclusive development, donors and agencies must prioritise planning and reporting systems that explicitly capture the participation of, and outcomes for, traditionally marginalized groups. Disability-inclusive development is both a goal and a process, which occurs when the entire community, including persons with disabilities, benefit equally from development processes.

Goal 11. Make cities and human settlements inclusive, safe, resilient and sustainable

Making cities and human settlements inclusive, safe, resilient, and sustainable is quite important as this significantly affects persons with disabilities. According to the World Health Organization and the World Bank, 15 per cent of the world’s population has a disability and by 2050, 6.25 billion people will live in urban centers. If these estimates remain, it means that by 2050 nearly one billion urban dwellers will be persons with disabilities.

With the development and enforcement of accessibility standards, new transportation systems, pedestrian pathways, and information systems, persons with disabilities could have access to urban areas without assistance at unprecedented levels.  Furthermore, non-discrimination policies protecting the rights of persons with disabilities are needed to ensure right to housing and to stop exclusionary housing policies. For more information on this topic, read the World Enabled and CBM publication “The Inclusion Imperative: Towards Disability-inclusive and Accessible Urban Development.”

Goal 16. Promote peaceful and inclusive societies for sustainable development, provide access to justice for all and build effective, accountable and inclusive institutions at all levels

Given that one in five people in developing countries has a disability[6], it is vital that inclusive governance practices are promoted, which actively encourage the participation of persons with disabilities at all levels of the democratic process. Both the UN Convention on the Rights of Persons with Disabilities (CRPD) and the International Covenant on Civil and Political Rights require this, and governance systems that do not represent the views of 15 per cent of their population with disabilities are falling short of their international obligations and not adhering to the principles of good governance. The CRPD has several Articles related to governance and political participation, including: Article 13, access to justice; Article 21, the right to freedom of expression and access to information; and Article 29, the right of persons with disabilities to participate in political and public life. Persons with disabilities must have equal opportunities to participate and be represented in political, social and economic processes for a truly inclusive society.

Goal 17. Strengthen the means of implementation and revitalize the Global Partnership for Sustainable Development

Goal 17 and the 2030 Agenda transform the traditional vision of partnerships and highlight the significant role of stakeholders and multi-stakeholder partnerships – including persons with disabilities – to share information, expertise, and resources in order to achieve the SDGs. This notion is in line with CRPD Articles 4.3 and 32 and the core theme of the disability movement “Nothing about us, without us.” Partnerships provide the space for persons with disabilities and their representative organizations to have meaningful representation as well as to ensure that the challenges faced by persons with disabilities are accounted for and met in the implementation of the SDGs.

References

[1] Heinicke-Motsch, K. & Sygall, S. (2004). Building an Inclusive Disability Community: A manual on including people with a disability in international development projects. Mobility International USA.

[2] United Nations Population Fund. (2005). Promoting Gender Equality. Retrieved from http://www.unfpa.org/gender/

[3] http://www.un.org/millenniumgoals/pdf/MDG_FS_7_EN.pdf (see World Health Organization and World Bank (2011) World Report on Disability.  Geneva: WHO Press).

[4] Jones, H. (2013). Mainstreaming disability and ageing in water, sanitation and hygiene programmes. WaterAid UK.

[5] Jones, H. & Reed, B. (2005). Water and sanitation for disabled people and other vulnerable groups: Designing services to improve accessibility. WEDC. Loughorough: UK. (book). https://wedc-knowledge.lboro.ac.uk/details.html?id=16357

[6] World Bank.  Disability and Poverty: A Survey of World Bank and Poverty Assessments and Implications’.  Jeanine Bratihwaite and Daniel Mont, SP discussion paper No. 0805, World Bank, February 2008.

India to get new act for persons with disabilities

In a promising win for millions of persons with disabilities in India, a bill that had been pending for two years in Parliament was passed on the very last day of business for the Winter Session in the Lok Sabha on 16th December.

The bill paves the way for a new act for the rights of persons with disabilities and will replace the two-decade-old the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995.

The news brought relief and ushered a wave of enthusiasm among disability organisations and activists who had been holding peaceful vigils over the past month or so to remind the parliamentarians that the bill should not get delayed for the next session. The Winter Session had witnessed stormy scenes resulting from divided opinions over the much discussed demonetisation move by the government.

A rare unity

It was heartening to see that members, cutting across party lines, decided to unite ensure that the much awaited bill is passed. The concensus also highlights the positive changes that have taken place since the Disability Act 2015 came into force with both the policymakers and political leadership in the country showing stronger concern for rights and participation of persons with disabilities.

In fact, the Lok Sabha, the lower house of Parliament, passed the bill within two hours after a short debate. Prime Minister Narendra Modi was also present in the house during this period. Earlier on Wednesday, the Rajya Sabha too had witnessed similar bonhomie for passage of The Rights of Persons with Disabilities Bill, 2014.

A new phase of empowerment

The bill ushers in a more progressive policy and legal framework for the government, organisations and persons with disabilities to achieve inclusion and equal rights for persons with disabilities.

“The New Act will bring our law in line with the United National Convention on the Rights of Persons with Disabilities (UNCRPD), to which India is a signatory. This will fulfill the obligations on the part of India in terms of UNCRD. Further, the new law will not only enhance the Rights and Entitlements of Divyangjan but also provide an effective mechanism for ensuring their empowerment and true inclusion into the Society in a satisfactory manner.” says a text from the Prime Minister’s official website.

Among the salient features of the bill is disability being defined as an evolving and dynamic concept and the types of disabilities being increased from seven to 21. It is important to underline that while some of the specific reservations and affirmative actions have been earmarked for persons with disabilities based on degree of disability defined in the law, the bill takes a much wider view of disability and the dynamic social group that it constitutes.

Though the 2011 national census identified 2.6 percent of India population constituting of people with disabilities, there has been a persistent demand for making a higher allocation of resources and reservation in jobs/education for persons with disabilities. Though the bill provides for reservation in vacancies in government establishments from the existing 3% to 4%, this is short of 5% that disabled peoples’ organisations were demanding.

Accessibility has emerged as a key policy and public campaign agenda for the government of India with its flagship Sugamya Bharat Abhiyan or Accessible India Campaign. The bill calls for strengthening the campaign and institutionalises this through a focus on accessibility in public buildings (both Government and private) in a prescribed time frame.

A provision that has generated mixed reactions is related to penal action mandated for offenses committed against persons with disabilities. The disabled peoples’ organisations feel that the wording of the statement related to it leaves a lot to subjective interpretation as it says ‘discrimination against a disabled person (would not be punishable) if it is a proportionate means of achieving a legitimate aim’.

The bill specifically mentions women and girls with disabilities and acknowledges that ‘special measures’ should be undertaken to protect the rights of women and children with disabilities.

The women’s rights groups, however, feel disappointed with the lack of specifics, as they had been asking for the incorporation of a separate subsection that would address the needs of women with disabilities following the guidelines set out by the UN Convention on the Rights of Persons with Disabilities.

Read a summary of key provisions of The Rights of Persons with Disabilities Bill, 2014, on Prime Minister Modi’s web portal.

Alternative interventions for improved mental health – reforming policies and practice

Participants from 40 countries came together for an international three-day conference on mental health and support in the community, different approaches and services, broader systems and the role of stakeholders in scaling up and developing or reforming policies.  The conference was convened by the International Network Toward Alternatives and Recovery (INTAR) 2016, in Pune, India.

small candles burning surrounded by flowers

small candles burning surrounded by flowers

A few days ago the conference organisers sent an email asking for feedback on our key learnings and our messages for the world.

During the conference I asked my CBM colleagues two questions. What will you take back to CBM? And what will you do differently?

Samina Jahan from CBM’s Bangladesh Country Office said “Currently we are implementing a community-based mental health project through a partner organisation and we are using a twin track approach.  The person is at the centre.  On the one hand they engage with their families, community, organisation of persons with disabilities, and on the other hand people receive medical interventions. The way forward is to look at alternatives to medical interventions such as theatre, art, yoga and may how these may contribute in the next project.” 

Technical Advisor Sammy Schubert realised “there are key opportunities for CBM Australia to promote the rights of people with psychosocial disabilities are both policy and community level.  At the policy level, we need to advocate for the repeal of mental health laws and policies that for violate the Convention on the Rights of Persons with Disabilities (UNCRPD) and the development of laws and policies that are UNCRPD compliant. At the community level our programs need to support The development of inclusive communities that embrace diversity where people with psychosocial disabilities can live independently and with dignity.” 

Finally, Madhavan S.A, Senior Programme Office from CBM’s South Asia Regional Office iterated that “the current focus of our mental health work is predominantly on by a medical interventions and links to livelihood and income generation activities. This workshop help me to understand the importance of intentional peer support systems and also to look at other alternative therapies.  The workshop also reinforced CBM’s core belief of supporting community-based mental health.”

sweeping patterns of white on coloured background

Indian folk art that symbolizes tradition, creativity and religion.

So my feedback?

I heard about the concept of ‘scaling out’ or ‘scaling across’ rather than just scaling up – think of the ripple effect of throwing a stone into water and the concentric circles, which challenges the idea of vertical scaling up.  It is something that will shape my ideas of implementing disability rights at a programme level.

I also learned about the role of people at the community in identifying and supporting people with psychosocial disabilities, specifically homeless people.  I now understand how the Chai seller plays a pivotal role in providing information and knowledge about the daily mental health of their customers.  My take away message – think local, think cultural, think context!