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Innovative data use: can we learn more from what is already available?

DANEMAYER, Jamie
September 2023

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A short talk given at the Disability Innovation Summit: Inclusive Interactions conference organised by GDI hub on 13 Sep 2023.

The use of published datasets on the prevalence of disability is reviewed. The numbers of datasets and their harmonisation is described and the advantages, limitations and opportunities for use are outlined. 

Catalyzing action for millions more people to access assistive technology in LMICs

BIJLEVELD, Pascal
September 2023

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Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023

 

ATscale has a goal of reaching 500 million more people, mostly in low and middle income countries, with AT by 2030.

This short talk focusses on major fundamential issues found in the first 2 years of operations:

  • Awareness - lack of awareness of AT even amongst health professionals
  • Fragmentation - AT is not a sector and is fragmented in types of AT (vision, hearing, mobility etc), in ministries involved (social welfare, health, education etc), in civil society and in the private sector
  • Expertise - implementation is a challenge. AT needs to be built as a discipline

The global birth prevalence of clubfoot: a systematic review and meta-analysis

SMYTHE, Tracey
ROTENBURG, Sarah
LAVY, Chris
August 2023

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Estimates of the birth prevalence of clubfoot in low and middle income settings range from 0.5 to 2 per 1000 births. However, there is currently no estimate of global birth prevalence of clubfoot.

A systematic review of studies was carried out reporting the birth prevalence of clubfoot across all countries and regions worldwide in the last 10 years. Africa Wide Information, EMBASE, CINAHL, Global Health, LILACS and Medline databases were searched for relevant studies from January 1st 2012 to February 9th 2023. Pooled prevalence estimates were calculated using the inverse variance method, and a random effects model was applied to account for heterogeneity between studies.

 

eClinicalMedicine,  Vol 63 September, 2023

DOI:https://doi.org/10.1016/j.eclinm.2023.102178

Assistive technology in Korea: Findings from the 2017 National Disability Survey

DANEMAYER, Jamie
LIN, Myung-Joon
July 2023

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Explicitly monitoring the need, use and satisfaction of assistive product (AP) provision is essential to support population health and healthy longevity in ageing/aged countries, like Korea. We present findings from the 2017 Korea National Disability Survey (NDS) on AP access and compare them to international averages, introducing Korea’s data into the wider coherence of global AP research.

 

Disability and Rehabilitation: Assistive Technology

https://doi.org/10.1080/17483107.2023.2225565 

 

Assistive technology access in longitudinal datasets: a global review

DANEMAYER, Jamie
MITRA, Sophie
HOLLOWAY, Cathy
HUSSEIN, Shereen
March 2023

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Functional limitations become more prevalent as populations age, emphasising an increasingly urgent need for assistive technology (AT). Critical to meeting this need trajectory is understanding AT access in older ages. Yet few publications examine this from a longitudinal perspective.

This review aims to identify and collate what data exist globally, seeking all population-based cohorts and repeated cross-sectional surveys through the Maelstrom Research Catalogue (searched May 10, 2022) and the Disability Data Report (published 2022), respectively. Datasets incorporating functional limitations modules and question(s) dedicated to AT, with a wave of data collection since 2009, were included.

 

International Journal of Population Data Science; 2023

Vol. 8 No. 1 (2023): IJPDS Standard Issue
 https://doi.org/10.23889/ijpds.v8i1.1901

Children with disabilities in the Middle East and North Africa: A statistical overview of their well-being

UNITED NATIONS CHILDREN'S FUND (UNICEF)
October 2022

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An estimated 21 million children with disabilities live in the Middle East and North Africa. Each of them – like every child in the world – has the right to be nurtured and supported through responsive care and education, to receive adequate nutrition and social protection, and to enjoy play and leisure time. Too often, however, such rights are denied. The reasons vary. They include stigma, lack of accessible services, institutionalization and physical barriers, but the consequences are sadly consistent. When marginalized from society, the chances for these children to survive and thrive are diminished, along with their prospects for a bright future.

Monitoring the inclusion of children with disabilities in development efforts has long been held back by the lack of reliable and comprehensive data. Recent years, however, have seen renewed efforts to fill these data gaps. The development of new data collection tools has resulted in a substantial increase in the availability and quality of data on children with disabilities, fostering new analyses and contributing to increased knowledge generation.

This report is a testament to these efforts. It includes internationally comparable data from four countries in the Middle East and North Africa and covers 18 indicators of child well-being – from nutrition, health and education to protection from violence, exploitation and discrimination. It also presents global and regional estimates of children with disabilities drawn from more than 1,000 data sources, including 95 from countries in the Middle East and North Africa.

The report’s objective is to promote the use of these data to make children with disabilities in the region more visible, bringing about a fuller understanding of their life experiences. It offers evidence crucial to decision-making to fulfill obligations, both moral and legal, to give every child an equal chance in life.

Are persons with disabilities included in the effort to leave no-one behind? Mapping disability data in development in Asia and the Pacific

CBM GLOBAL’S INCLUSION ADVISORY GROUP
February 2022

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In the Asia Pacific region, UNFPA and partners work together to implement the Incheon Strategy to “Make the Right Real” for Persons with Disabilities. The Incheon Strategy is the region’s first set of disability-specific development goals to track progress towards the fulfilment of rights of persons with disabilities.

In the region, it is estimated that there are over 650 million persons with disabilities. However, without accurate, timely and disaggregated data, countries are unable to develop effective policies and programmes, monitor the wellbeing of persons with disabilities and evaluate the equity and impact of development efforts. This endangers country commitments to ‘leave no one behind’ and undermines their obligations to the Convention on the Rights of Persons with Disabilities.

This groundbreaking report demonstrates the importance of ensuring data is inclusive and provides recommendations for immediate action in order to improve the collection, analysis and reporting of disability data

Estimating need and coverage for five priority assistive products: a systematic review of global population-based research

DANEMAYER, Jamie
BOGGS, Dorothy
DELGADO RAMOS, Vinicius
SMITH, Emma M
KULAR, Ariana
BHOT, William
RAMOS-BARAJAS, Felipe
POLACK, Sarah
HOLLOWAY, Catherine
January 2022

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Assistive technology (AT) includes assistive products (APs) and related services that can improve health and well-being, enable increased independence and foster participation for people with functional difficulties, including older adults and people with impairments or chronic health conditions. This paper uses the umbrella term ‘functional difficulty’ (FD) to refer to all of these groups. This systematic review was undertaken to identify studies presenting population-based estimates of need and coverage for five APs (hearing aids, limb prostheses, wheelchairs, glasses and personal digital assistants) grouped by four functional domains (hearing, mobility, vision and cognition).

 

BMJ Glob Health. 2022; 7(1): e007662

doi: 10.1136/bmjgh-2021-007662

Vihiga county disability-inclusive budget tracking

DEVELOPMENT INITIATIVES
June 2021

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This briefing tracks the inclusivity of Vihiga county budgets from financial years (FY) 2016–17 to 2020–21 towards persons with disabilities. It begins with an overview of disability prevalence in the county, then looks at county investments in disability inclusion. It concludes by looking at the critical financial gaps in the disability sector and providing actionable recommendations to be taken up by both the county government and disabled persons organisations (DPOs).

Trans Nzoia county disability-inclusive budget tracking

DEVELOPMENT INITIATIVES
June 2021

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This is part of a series of briefings that track the disability inclusivity of county budgets. In this briefing, we present the inclusivity of Trans Nzoia County budgets towards persons with disabilities between financial years (FY) 2016–17 and 2020–21. It should be noted that this briefing has utilised data from only three FYs, as opposed to five as planned, due to the unavailability of budget data. The three FYs with available budget data are FY2017–18, FY2018–19 and FY2020–21. For the two FYs without budget data, we have used projections from the previous years.

Kakamega county disability-inclusive budget tracking

DEVELOPMENT INITIATIVES
June 2021

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This briefing tracks the inclusivity of Kakamega county budgets towards persons with disabilities from financial year (FY) 2016–17 to 2020–21. It begins with an overview of disability prevalence in the county, and then looks at county investments on disability inclusion. It concludes by looking at the critical financial gaps in the disability sector and providing actionable recommendations to be taken up by both the county government and persons with disabilities.

Bungoma county disability-inclusive budget tracking

DEVELOPMENT INITIATIVES
June 2021

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This briefing presents research that was undertaken as part of Development Initiatives’ work on data to support disability inclusion. It is part of a series of publications that track disability inclusion in county budgets in Kenya. This briefing looks at the inclusivity of Bungoma county budgets towards persons with disabilities between the financial years (FY) 2016–17 and 2020–21. It begins with an overview of the disability prevalence rate in the county, then looks at county investments towards disability inclusion. It concludes by outlining the critical financial gaps in the disability sector and provides actionable recommendations for both the county government and disabled persons organisations (DPOs).

Busia county disability-inclusive budget tracking

DEVELOPMENT INITIATIVES
June 2021

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This briefing tracks the inclusivity of Busia county budgets from financial years (FY) 2016–17 to 2020–21 towards persons with disabilities. It begins with an overview of disability prevalence in the county, and then looks at county investments in disability inclusion. It concludes by looking at the critical financial gaps in the disability sector and providing actionable recommendations to be taken up by both the county government and disabled persons organisations (DPOs).

Musculoskeletal impairment among Syrian refugees living in Sultanbeyli, Turkey: prevalence, cause, diagnosis and need for related services and assistive products

BOGGS, Dorothy
ATIJOSAN-AYODELE, Oluwarantim
YONSO, Hisem
et al
April 2021

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Epidemiological data on musculoskeletal impairment (MSI) and related service and assistive product (AP) needs for displaced populations are lacking. This study aimed to estimate the prevalence, aetiology, and specific MSI diagnosis and the need for related services and APs among Syrian refugees living in Sultanbeyli, a district in Istanbul, Turkey.

A population-based survey used probability proportionate to size and compact segment sampling to select 80 clusters (‘street’) of 50 individuals (aged 2+), for total sample size of approximately 4000 participants. An updated version of the Rapid Assessment of MSI tool (RAM) was used to screen all participants using six questions. Any participant who screened positive underwent a standardised examination by a physiotherapist to assess the presence, aetiology, severity and specific diagnosis of MSI and an assessment of need for related services and APs.

 

Conflict and Health volume 15, Article number: 29 (2021)

https://doi.org/10.1186/s13031-021-00362-9

Towards zero leprosy. Global leprosy (‎Hansen’s Disease)‎ strategy 2021–2030

WORLD HEALTH ORGANISATION (WHO), REGIONAL OFFICE FOR SOUTH-EAST ASIA
April 2021

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The Global Leprosy Strategy 2021–2030 “Towards zero leprosy” was developed through a broad consultative process with all major stakeholders during 2019 and 2020. Valuable inputs were provided by national leprosy programme managers, technical agencies, public health and leprosy experts, funding agencies and persons or members of communities directly affected by leprosy.

The Strategy aims to contribute to achieving the Sustainable Development Goals. It is structured along four pillars:

(‎i)‎ implement integrated, country-owned zero leprosy road maps in all endemic countries;
(‎ii)‎ scale up leprosy prevention alongside integrated active case detection;
(‎iii)‎ manage leprosy and its complications and prevent new disability; and
(‎iv)‎ combat stigma and ensure human rights are respected. Interruption of transmission and elimination of disease are at the core of the Strategy

How targeting mechanisms can identify people with disabilities for inclusion in social protection programmes

SAMMON, Elayn
CARRARO, Ludovico
COTE, Alexandre
ZEVENBERGEN, Stacey
HOLMES, Rebecca
March 2021

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Developed by Social Protection Approaches to COVID-19: Expert Advice (SPACE) in collaboration with the UNPRPD joint program on inclusive Social Protection, the UNPRPD global initiative on COVID 19 inclusive response and recovery, and Humanity & Inclusion.

The COVID-19 pandemic has demonstrated that countries which have disability identification mechanisms and registries already in place have been in a better position to provide fast relief and expand shock responsive support to persons with disabilities and their families. 

This guidance note includes:

  • Brief introduction to the definitions and terminology surrounding disability and the concept of inclusive social protection
  • Summary of the rationale for the inclusion of persons with disability in social protection programming
  • Examples for overcoming the challenges for outreach, identification, and registration, and needs assessment
  • Some country examples
  • Overall implications for future programming.

Inclusive information systems for social protection: Intentionally integrating gender and disability

BARCA, Valentina
HEBBAR, Madhumitha
COTE, Alexandre
SCHOEMAKER, Emrys
ENFIELD, Susan
HOLMES, Rebecca
WYLDE, Emily
March 2021

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Digital information systems serving the social protection sector, and especially social assistance, are increasingly prominent and will continue to be, as is the case within all other sectors. “Why? Because the ability of a country to care for its people and respond to their lifecycle needs depends on its ability to identify those who are in need, enroll them, provide tailored benefits and services, and follow up to cater to evolving circumstances”. Governments also need to be able to monitor programme implementation and impact, feeding into longer-term decisions on design and resource allocation. “All of these actions require accessible, dynamic and real-time data and information exchange if the goal of universal coverage is to be achieved” (Chirchir and Barca, 2019).

The coverage (% of the population included in the information system), relevance (amount/type of data they store), and accessibility (e.g. level of interoperability/data sharing across the government data ecosystem) of these administrative data systems has also been increasing in many countries – posing important opportunities and challenges to policy-makers. The question is how to develop these systems in a way that is inclusive and right-based, leveraging technology “to ensure a higher standard of living for the vulnerable and disadvantaged” (Alston, 2019) rather than becoming a further barrier to inclusion. To illustrate the point this paper specifically focuses on gender and disability inclusion, while acknowledging similar considerations apply to all other forms of (intersectional) exclusion.

Disability & inclusion survey, Malakal Protection of Civilians site

International Organization for Migration’s Displacement Tracking Matrix (IOM DTM)
February 2021

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The International Organization for Migration’s Displacement Tracking Matrix (IOM DTM), Protection and Mental Health and Psycho-Social Support teams joined efforts with Humanity & Inclusion (HI) to undertake an assessment of the level of access to services and the barriers faced by persons with disabilities within Malakal Protection of Civilian site (PoC site). The United Nations High Commissioner for Refugees (UNHCR) and the Danish Refugee Council (DRC) contributed to the qualitative component of the study as the main Protection and Camp Coordination and Camp Management (CCCM) actors operating within the PoC site. The study, based on data collected between March 2020 and June 2020, aims to improve the knowledge base available to the humanitarian community about access to services by persons with disabilities living in the site. It provides a quantitative estimate of the prevalence of disabilities among the IDP population and an assessment of the barriers faced by persons with disability in accessing humanitarian services across sectors. It also seeks to empower persons with disabilities living within the PoC site, giving them the opportunity to express their concerns and preferences with regards to possible solutions and targeted interventions. It is hoped that the resulting data will help camp management and other service providers operating within Malakal PoC site, including IOM, UNHCR and DRC, to better account for the concerns and needs of persons with disability in humanitarian programming and service delivery. This study builds onto and expands previous studies in Naivasha IDP Camp (formerly Wau PoC AA Site) and Bentiu PoC Site.

The definition of disability and disability related data collection and analyses - Applying the IASC Guidelines in the northwest Syria humanitarian response

UNHCR INCLUSION TECHNICAL WORKING GROUP, SYRIA PROTECTION CLUSTER (TURKEY)
February 2021

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Action by humanitarian partners to strengthen inclusion of persons with disabilities in the humanitarian response in an evidencebased manner remains highly needed – this note aims to support that effort by providing background and explanation on the definition of disability as well as on how to interpret and use data related to disability.

 

The note also provides elaboration on the Syria Protection Cluster (Turkey) recommended disability-related data collection methodology for humanitarian organizations and entities in northwest Syria. Thereby the note aims to stimulate and assist the broader humanitarian community in northwest Syria in adopting the Washington Group Short Set of Questions on Functioning, especially in relation to disability focused data collection and in understanding and utilizing assessment findings, specifically prevalence-rates of disability in northwest Syria.

 

For more elaborated description of the situation of persons with disability in northwest Syria and practical suggestions for humanitarians on enhancing inclusion of persons with disabilities in programming, this note is to be read in conjunction with the ITWG “Self-reported barriers to activities of daily living of persons with disabilities living in IDP sites in northwest Syria” brief report and recommendations.

 

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