webinar advancing global disability data
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Advancing Global Disability Data and Disability Inclusive Development
Recommendations from a United Nations ReportThilo Kroll
Social Dimensions of Health Institute (SDHI) of the Universities of Dundee and St Andrews, Scotland UK
Report
United Nations Expert Group Meeting onDisability Data and Statistics, Monitoring and Evaluation: The Way Forward- a Disability- Inclusive Agenda Towards
2015 and BeyondUNESCO / UN DESA Paris, France (8-10 July 2014)
http://www.un.org/disabilities/documents/egm2014/EGM_FINAL_08102014.pdf
Setting the scene
• An estimated 1 billion people (15% of the world’s population) are living with disabilities (WHO World Report on Disability, 2011)
• In all regions, people with disabilities disproportionately represented among the poorest
• An estimated 80% of people with disabilities live in developing countries
• Ageing and growing chronic health conditions will increase the number of people with disabilities
Background: Millenium Development Goals and Disability
• “The Millennium Development Goals (MDGs) represent a concerted effort to address global poverty. Yet there is a striking gap in the current MDGs: persons with disabilities, that is, the estimated 1 billion people worldwide who live with one or more physical, sensory (blindness/deaf- ness), intellectual or mental health impairments, are not mentioned in any of the 8 Goals or the attendant 21 Targets or 60 Indicators, nor in the Millennium Declaration” (UN DESA Report 2011).
• “This absence is of particular concern because a growing consensus of disability advocates, experts and researchers find that the most pressing issue faced globally by persons with disabilities is not their specific disability, but rather their lack of equitable access to resources such as education, employment, health care and the social and legal support systems, resulting in persons with disabilities having disproportionately high rates of poverty” (UN DESA Report 2011).
Background: UN CRPD
• UN Convention on the Rights of Persons with Disabilities (UN CRPD, 2006) – 159 State signatories (151 ratifications) – as of 15 Dec 2014
• The purpose is “to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity”.
• Adopts a social model perspective, a shift away from seeing “persons with disabilities as "objects" of charity, medical treatment and social protection towards viewing persons with disabilities as "subjects" with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society” (UN Convention).
Defining and operationalising ‘disability’ according to the UN Convention on the Rights of
Persons with Disabilities
• The Convention does not explicitly define disability• Preamble of Convention states:
– ‘Disability is an evolving concept, and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders full and effective participation in society on an equal basis with others’
• Article 1 of the Convention states: – ‘Persons with disabilities include those who have long-
term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’.
The mandate: UN Convention on the Rights of Persons with Disabilities - Art 31
• States Parties undertake to collect appropriate information, including statistical and
research data, to enable them to formulate and implement policies to give effect to the present Convention. The process of collecting and maintaining this information shall:
• a) Comply with legally established safeguards, including legislation on data protection, to
ensure confidentiality and respect for the privacy of persons with disabilities;
• b) Comply with internationally accepted norms to protect human rights and
fundamental freedoms and ethical principles in the collection and use of
statistics.
• The information collected in accordance with this article shall be disaggregated, as
appropriate, and used to help assess the implementation of States Parties'
obligations under the present Convention and to identify and address the barriers faced by persons with disabilities in exercising their rights.
• 3. States Parties shall assume responsibility for the dissemination of these statistics and
ensure their accessibility to persons with disabilities and others.
Health Condition
(disorder/disease)
activities
Body functions
and
structures
participation
environmental
factors
person
factors
ICF - International Classification of Functioning, Disability and Health (WHO, 2001)
Challenges
• No common definitions, concepts, standards and methodologies within and between UN Member states
• Inconsistencies and incomparability of data over time and between countries
• Counting (categories) vs measuring (degree, relationally weighted against environmental characteristics)
• Need for a clearer picture of what it means to live with a disability – access to all mainstream policies, systems, services (e.g. education, employment, leisure, transportation) - inclusion
Challenges 2
• Resources to support data collection
• Fidelity and quality of data
• Capacity for data collection and training of enumerators
• Geographical reach of data collection (infrastructure)
• Inclusiveness (e.g. institutionalisedpopulation; enabling assisted response; alternative response formats)
International and national efforts: search for indicators
• Regionally: e.g. Academic Network of European Disability Experts (ANED) – since 2007
• Multiple Indicator Cluster Survey (MICS) –focused on children
• WHO/World Bank Model Disability Survey –based on WHO ICF, population survey to address Art 31 (impairments – activity limitations – participation restrictions)
Model Disability Survey: Guiding Principles
• People with disability have a right to participation in society on an equal basis with others.
• Disability is an outcome of the interaction between a person with a health condition and contextual factors. It is not merely an attribute of the person.
• Disability is a continuum, a matter of degree. The experience of disability is diverse.
• Disability measurement should consider societal or environmental barriersthat can have a strong disabling effect, as well as an individual’s impairments and health condition.
• Questions that focus on the respondents’ lived experience and real-life environment will yield a better understanding of how disability affects people’s daily lives, and what can be done to improve their lives.
• Cross-national relevance and standardization of the questionnaire are essential. A modular format allows it to be used as a stand-alone survey or incorporated into other national surveys.
Cieza et al. WHO
Repositoryhttp://disabilitysurvey.checkdesign.de/Cierza et al. WHO
Cierza et al. WHO
Washington Group on Disability Statistics
6 question core set
http://www.cdc.gov/nchs/washington_group/wg_questions.ht
m
WG Short Set
• The recommended short set of questions will identify the majority of the population with difficulties in functioning in basic actions; difficulties that have the potential to limit independent living or social integration if appropriate accommodation is not made.
Disability as a ‘demographic’: problems and opportunities
Problems Opportunities
Location of ‘disability’ in the individuals capacity for functioning Linking ‘disability’ to a HEALTH problemNot sensitive to situational and temporal variabilityNot related to environmental contextNot indicative of the dynamic interaction between person and environment characteristicsInconsistency in the incorporation of assistive devicesFunctional areas missing (e.g. upper limb)Mental health and intellectual disabilities not reflectedNon household population not represented
Disaggregation of census and national data sources by functional activity variables as a proxy of ‘disability’Cost efficient inclusion in ongoing data collection effortsConsistency over time and between countriesData linkage with other, especially environmentally sensitive data sources, variables and measuresMonitoring of international development programmes (e.g. Sustainable Development Goals)
The need to supplement data collection of the ‘demographic category’ with ‘measures of
disabling factors’ (relational measures)
• Ecological measures of the environment
• Mobility measures
• Temporally and situationally/environmentally sensitive measures
Overall Recommendations for international comparability of disability data, analysis and
reporting• Include Washington Group short question set (6
questions) in censuses and ongoing periodic surveys conducted or financed by national statistical offices, government ministries and United Nations agencies and encourage its inclusion in data collections sponsored by NGO funded agencies – disaggregate and monitor progress
• Improve comparability of data by adopting a common framework and that different types of data collection include the Washington Group short set and that survey modules use the extended set; new methodologies such as the Model Disability Survey (MDS) should complement and extend question set
Member States United Nations
Short-term National office to adopt standardisedmethodologies (Wg 6)Nominate country focal point
Collaboration between UN agencies (ICF model)Mapping of data sources across member states; quality appraisalUN Statistical Commission to encourage UN SD to provide technical assistanceRegional offices to facilitate trainingAnnual data briefs/reportsOpen Expert Group Platform
Medium-term Include short set in census; report disaggregated data using UN standardformatsAccessibility of data reportsNew data tools; assess attitudes, experiences
Establish Disability Data, Method and Evidence Synthesis Working GroupSpecific report by 2020 required in country reportsNew standardised questions on environment and participation (UN Stat Comm)Partnerships with donors funders and data user/producersImmediate involvement of people with disabilities in all processes
Long-term Develop innovative data collection techniquesQualitative informationIntegrated data systems in 5 year cycles
Periodic UN Global Disability Report,produced every 5 yeas by the Secretary-General
Sustainable Development Goals (Post 2015)
Sustainable Development Goals
Goal 1 End poverty in all its forms everywhereGoal 2 End hunger, achieve food security and improved nutrition and promote sustainable agricultureGoal 3 Ensure healthy lives and promote well-being for all at all agesGoal 4 Ensure inclusive and equitable quality education and promote lifelong learning opportunities for allGoal 5 Achieve gender equality and empower all women and girlsGoal 6 Ensure availability and sustainable management of water and sanitation for allGoal 7 Ensure access to affordable, reliable, sustainable and modern energy for allGoal 8 Promote sustained, inclusive and sustainable economic growth, full and productive employment and decent work for allGoal 9 Build resilient infrastructure, promote inclusive and sustainable industrialization and foster innovation
Goal 10 Reduce inequality within and among countriesGoal 11 Make cities and human settlements inclusive, safe, resilient and sustainableGoal 12 Ensure sustainable consumption and production patternsGoal 13 Take urgent action to combat climate change and its impacts*Goal 14 Conserve and sustainably use the oceans, seas and marine resources for sustainable developmentGoal 15 Protect, restore and promote sustainable use of terrestrial ecosystems, sustainably manage forests, combat desertification, and halt and reverse land degradation and halt biodiversity lossGoal 16 Promote peaceful and inclusive societies for sustainable development, provide access to justice for all and build effective, accountable and inclusive institutions at all levelsGoal 17 Strengthen the means of implementation and revitalize the global partnership for sustainable development
Sustainable Development Goals - Continued
Disability and international development post-2015: Sustainable Development Goals – Recommendations
from the Expert Group Meeting
• Better coordination and leadership at the UN level to facilitate global knowledge exchange; establishment of technical mechanisms to support countries in the development, collection, analysis and dissemination of high quality data on disability
• Disaggregation of SDG data (indicators) by disability in surveys and censuses – Washington Group 6 questions
• Development of a broader tool set based on ICF framework• New methodologies (intersectorial attention, e.g. disability
and homelessness)• Address gaps in MDG Framework – ensure regular
monitoring of SDGs in relation to disability
Specific recommendation
• To include ‘disability’ in the preamble of the zero draft of the SDG Outcome document
• “All people, of all ages and abilities, are at the centre of sustainability development. The indicators that track the goals should be disaggregated to ensure no one is left behind, and targets should only be considered ‘achieved’ if they are met for all relevant income and social groups, including disability, gender, age, and any other social group relevant to the national context”.
Infra-structure at the UN and regional level (UN Statistics Division - regional offices)
• Technical assistance
• Training and capacity building
• Quality assurance
• Innovation (data collection, management, statistical analysis)
• Technological infra-structure (knowledge sharing)
• Regionalisation (regional offices)
Conclusions• Opportunities in developing standardised approaches to
disability data at scale; disaggregation of census and national survey data by disability
• Comparable data for the monitoring of both the implementation of the UN CRPD and Sustainable Development Goals
• Need for further methodological innovation and to thoroughly evaluate and disseminate at scale (e.g. measures of the environment and ecological real time measures)
• Need for UN Statistical Division and regional offices to adopt a coordinating role and provide technical assistance – avoid duplication of effort
• Greater Involvement of Disabled People’s Organisations(DPOs) is required
