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Disability Data Review: A collation and analysis of disability data from 40 countries

LEONARD CHESHIRE
2018

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This report was developed to inform dialogue at the 2018 Global Disability Summit. It contains full details on the methods and findings of data analysis from 40 countries and 16 indicators. The report identifies available data and existing gaps to understand how the growing body of available disability data can be disaggregated and to support monitoring and evaluation efforts for the Sustainable Development Goals (SDGs) and the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

Cross-sectional Survey to Assess Prevalence of Disability and Access to Services in Albay Province, The Philippines

HODGE, Marcus
BOLINAS, Amable
JAUCIAN, Erlynn
BONEO, Rebecca
SCHAPIRA, Allan
VILLANUEVA, Mary Mediatrix V
2017

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Aim:  A cluster randomized cross-sectional survey to assess the prevalence of disability and access to support services was conducted in Albay Province, the Philippines in April 2016.

 

Method:  The population-based survey methodologies developed by the Washington Group of the United Nations Statistical Commission and UNICEF were utilized.  A sample of 70 barangays (the 3rd level administrative division in the Philippines) was selected as clusters, with probability proportional to size, and 30 households were selected randomly in each barangay to be surveyed.

 

Results:  The estimated prevalence of disability using the standard criteria of the Washington Group and UNICEF among children (2-17 years old) was 2.0% and for adults (≥18 years old) it was 6.5%.  The estimated prevalence of disability was higher in rural than in urban areas.  Deficiencies in the performance of existing services were identified; access by children with disabilities to support services was lowest in rural highland and rural plain barangays.

 

Conclusions: There was a large unmet demand for support services addressing the needs of persons with disabilities in Albay Province, especially in rural highland areas.  Persons with disabilities were disadvantaged in access to education and employment; many had not been educated in their basic rights.

 

Implications:  To identify, educate and fully support persons with disabilities, community-based rehabilitation (CBR), health and other rehabilitation services must communicate effectively with each other, their current work should be mapped and analysed, their comparative strengths identified, and their future work coordinated.  It is a priority to educate persons with disabilities and their families about their rights, and facilitate their access to support services; this requires increased investment in communication targeting persons with disabilities and the communities, especially rural.  Providers caring for persons with disabilities need to work in partnership to identify unreached persons with disabilities.  Prevalence surveys, with stronger focus on the profiles and performance of CBR and related services, would add to the evidence-base to improve the quality and coverage of services for persons with disabilities.

Access to Services and Barriers faced by People with Disabilities: A Quantitative Survey

GRILLS, Nathan
SINGH, Lawrence
PANT, Hira
VARGHESE, Jubin
MURTHY, GVS
HOQ, Monsurul
MARELLA, Manjula
2017

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Purpose: In low- and middle-income countries, reliable and disaggregated disability data on prevalence, participation and barriers is often not available. This study aimed to estimate disability prevalence, determine associated socio-demographic factors and compare access in the community between people with and without disability in Dehradun district of Uttarakhand, India, using the Rapid Assessment of Disability Survey.

 

Methods: A cross-sectional population-based survey was conducted on a sample of 2431 adults, selected using a two-stage cluster randomised sampling technique. The survey comprised an interviewer-administered household survey and an individual survey measuring disability, wellbeing and participation.  For each person with disability, an age and sex-matched control (without disability) was selected. In addition to prevalence, the difference in participation and barriers faced by people with and without disability were analysed.

 

Results and Conclusions: The prevalence of disability was 6.8% (95% CI 5.8-7.8) with significant associations with age, sex, economic status, education and employment. Psychosocial distress (4.8%) and mobility impairment (2.7%) were the most common disabilities identified. The study showed that people with disabilities had significantly less access to services than those without disability, and the barriers reported most often were lack of information, transport and physical inaccessibility.

Childhood disability population-based surveillance: Assessment of the Ages and Stages Questionnaire Third Edition and Washington Group on Disability Statistics/UNICEF module on child functioning in a rural setting in South Africa

VISSER, Marieta
NEL, Mariette
BRONKHORST, Caretha
BROWN, Lara
EZENDAM, Zaskia
MACKENZIE, Kira
VAN DER MERWE, Deidré
VENTER, Marné
2016

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Background: Epidemiological information on childhood disability provides the basis for a country to plan, implement and manage the provision of health, educational and social services for these vulnerable children. There is, however, currently no population-based surveillance instrument that is compatible with the International Classification of Functioning, Disability and Health (ICF), internationally comparable, methodologically sound and comprehensively researched, to identify children under 5 years of age who are living with disability in South Africa and internationally. We conducted a descriptive pilot study to investigate the sensitivity and specificity of translated versions of the Ages and Stages Questionnaire Third Edition (ASQ-III) and the Washington Group on Disability Statistics/UNICEF module on child functioning (WG/UNICEF module) as parent-reported measures. The aim of our study was to identify early childhood disabilities in children aged 24–48 months in a rural area of South Africa, to determine the appropriateness of these instruments for population-based surveillance in similar contexts internationally.

 

Methods: This study was conducted in the Xhariep District of the Free State Province in central South Africa, with 50 carers whose children were registered on the South African Social Security Agency (SASSA) database as recipients of a grant for one of the following: Care Dependency, Child Support or Foster Care. The researchers, assisted by community healthcare workers and SASSA staff members, conducted structured interviews using forward–backward translated versions of the ASQ-III and the WG/UNICEF module.


Results: Both measurement instruments had a clinically meaningful sensitivity of 60.0%, high specificity of 95.6% for the ASQ-III and 84.4% for the WG/UNICEF module, and the two instruments agreed moderately (Kappa = 0.6).

 

Conclusion: Since the WG/UNICEF module is quicker to administer, easier to understand and based on the ICF, it can be considered as an appropriate parent-reported measure for large-scale, population-based as well as smaller, community-specific contexts. It is, however, recommended that future research and development continues with the WG/UNICEF module to enhance its conceptual equivalence for larger-scale, population-based studies in South Africa and internationally.

Prevalence of Physical Disability among Urban Community-dwelling Adults in Sri Lanka

Weerasinghe, Inoka E
Fonseka, P
Dharmaratne, S D
Jayatilake, J A M S
2015

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Purpose: Assessment of physical disability at the community level is essential for rehabilitation and supply of services. This study aimed to assess the prevalence of physical disability among adults in an urban community in Sri Lanka.

 

Methods: A descriptive cross-sectional study was conducted among 2460 adults (18 -59 years of age) who were selected using cluster sampling. Physical disability was measured using a Physical Impairment Examination Tool (PIET) and World Health Organisation Disability Assessment Schedule II (WHODAS II).

 

Results: Prevalence of physical disability was 4.2% (95% CI= 3.5-5.1). Physical disability was higher among people in the age group of 40-59 years (6.5%, n=64) than among those in the age group of 18-39 years (2.6%, n=39) (P<0.05). Physical disability was more prevalent among females (4.4%, 95% CI= 4.2-4.6) than males (2.6%, 95% CI: 2.4-2.8), and among Tamils (7.8%, 95% CI=5.1%- 10.5%) than Sinhalese (3.3%, 95% CI=2.4%- 4.1%). It was higher among those who were divorced/widowed (58.3%, 95% CI=30.4- 86.2) than among married people (3.6%, 95% CI=2.8- 4.4). The prevalence of physical disability was 7.1% (95% CI=4.6- 9.5) among people with primary education, 4.5% (95% CI=3.4- 5.6) among those with secondary education, and 1.8% (95% CI=0.8- 2.8) among those with tertiary education. It was higher among the unemployed (7.2%, 95% CI=5.7-8.7) than the employed (1.8%, 95% CI=1.1-2.5). Age, gender, ethnicity, marital status, education levels and employment status were significantly associated with physical disability. 

 

Conclusions: Though the prevalence of physical disability appears to be higher among Sri Lankan adults than among people in developed countries, it is less than among people in other South-East Asian countries. Associations with socio-demographic variables were consistent with other studies.

The prevalence of self-reported vision difficulty in economically disadvantaged regions of South Africa

NAIDOO, Kovin S
JAGGERNATH, Jyoti
RAMSON, Prasidh
CHINANAYI, Farai
ZHUWAU, Tom
ØVERLAND, Lene
2015

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Background: Vision impairment, resulting in vision difficulties, is a leading cause of disability, and hence one of the key barriers for people to access education and employment, which may force them into poverty.

 

Objectives: The objective of this study was to determine the prevalence of self-reported vision difficulties as an indicator of vision impairment in economically disadvantaged regions in South Africa, and to examine the relationship between self-reported vision difficulties and socio-economic markers of poverty, namely, income, education and health service needs.

 

Methods: A cross-sectional study was conducted in economically disadvantaged districts to collect data from households on poverty and health, including vision difficulty. As visual acuity measurements were not conducted, the researchers used the term vision difficulty as an indicator of vision impairment. Data were collected from 27 districts (74 901 respondents). Logistic regression analysis and chi-square tests were used to determine bivariate relationships between variables and self-reported vision difficulty. Kernel density estimators were used for age, categorised by self-reported and not reported vision difficulty.

 

Results: Prevalence of self-reported vision difficulty was 11.2% (95% CI, 8.7% – 13.7%). More women (12.7%) compared to men (9.5%) self-reported vision difficulty (p < 0.01). Self-reported vision difficulty was higher (14.2%) for respondents that do not spend any money. A statistically significant relationship was found between the highest level of education and self-reporting of vision difficulty; as completed highest level of education increased, self-reporting of vision difficulty became lower (p < 0.01). A significantly higher prevalence of self-reported vision difficulty was found in respondents who are employed (p < 0.01), 17% (95% CI: 12.8% – 21.1%).

 

Conclusion: The evidence from this study suggests associations between socio-economic factors and vision difficulties that have a two-fold relationship (some factors such as education, and access to eye health services are associated with vision difficulty whilst vision difficulty may trap people in their current poverty or deepen their poverty status). The results are thus indicative of the need for further research in South Africa.

ESCAP Guide on Disability Indicators for the Incheon Strategy

UNITED NATIONS ECONOMIC AND SOCIAL COMMISSION FOR ASIA AND THE PACIFIC (ESCAP) SOCIAL DEVELOPMENT DIVISION
December 2014

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The Incheon Strategy to “Make the Right Real” for Persons with Disabilities in Asia and the Pacific provides the Asian and Pacific region, and the world, with the first set of regionally agreed disability-inclusive development goals. The Incheon Strategy goals cover a range of development areas from poverty reduction and employment to political participation, accessibility, social protection, education, gender equality, disaster risk reduction, data collection, CRPD ratification and international cooperation.

To ensure that the 10 goals are successfully met, the Strategy identifies 27 targets as well as 62 related indicators for monitoring and evaluating the implementation of the 10 goals. These targets and indicators are essential for developing practical implementation strategies, ensuring success and identifying areas where significant challenges remain. Goal 8 of the Incheon Strategy accords particular priority to data collection, calling for improvement of the reliability and comparability of disability data across countries in the region. Member States, in target 8B, have specifically committed to establishing a baseline with reliable statistics by the midpoint of the Asian and Pacific Decade of Persons with Disabilities in 2017, as a source of tracking progress towards the achievement of the Incheon Goals.

The ESCAP Guide on Disability Indicators for the Incheon Strategy aims to guide data collection and generation by ESCAP member States through providing them with relevant methodologies and tools to construct and use the 62 indicators of the Incheon Strategy, in order to monitor the achievement of the 10 disability-inclusive development goals.

A Population-based Study on the Prevalence of Impairment and Disability Among Young Cambodian Children

EVANS, P
SHAH, S
HUEBNER, A
SIVASUBRAMANIAM, S
VUTHY, C
SAMBATH, K
HAURISA, L
BORUN, Y
2014

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Purpose: This population-based study aimed to estimate the prevalence of impairment and disability and associated risk factors among children between 2 – 9 years of age in Cambodia.

 

Method: A two-phase method was employed. In phase 1, children were screened using the Ten Question Screening Instrument (TQSI) developed for the World Health Organisation (WHO). Those identified positive, were then referred tophase 2 for a detailed multi-professional assessment. A further 10% of children pre-selected at random were also referred to phase 2. Treatment needs for children with disability and risk factors for their disability were also determined.

 

Results: Prevalence of impairment was estimated at 15.59% (95% CI: 15.05, 16.14), disability at 10.06% (95% CI: 9.16, 10.1) and moderate/severe/profound at 3.22% (95% CI: 2.96, 3.49). Cognition (5.48%. 95% CI: 5.15, 5.83), speech (motor) (2.05%. 95% CI: 1.85, 2.27), speech (language) (1.80%. 95% CI: 1.61, 2.01) and hearing (2.51%. 95% CI: 2.29, 2.76) were the most common disabilities. History of difficult delivery, child’s age, major injury, gender and large family size were significant predictors of disability. Analysis of ‘false negatives’ in the validation group suggested that many parents and caretakers were unaware of their child’s disability. Treatment needs were found to be very high, approaching 100% for children with moderate or worse disabilities. 

 

Conclusions: Prevalence estimates based on this study are more than 10 times higher than those reported in Cambodia’s 2008 National Census. The identified risk factors imply the need for substantial expansion of obstetric services. Education and awareness of disabilities in the population and strategies to prevent injuries require more government attention.

 

The Rapid Assessment of Disability – Informing the Development of an Instrument to Measure the Effectiveness of Disability Inclusive Development Through a Qualitative Study in Bangladesh

HUQ, N L
EDMONDS, T J
BAKER, S
BUSJIA, L
DEVINE, A
FOTIS, K
MARELLA, M
GOUJON, N
KEEFFE, J
2013

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Purpose: The Rapid Assessment of Disability (RAD) questionnaire was developed to provide governments and development agencies with an appropriate instrument to determine the prevalence of people with disability within theirtarget populations, and to design and evaluate the effectiveness of disability inclusive activities in addressing their priorities and needs.

 

Method: The RAD questionnaire was developed using two conceptual frameworks: the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), and the International Classification of Functioning, Disability and Health (ICF). Existing instruments were reviewed to inform the structure and content of the RAD questionnaire. The RAD questionnaire that was developed for field testing in Bangladesh comprised both a household questionnaire and a questionnaire for individuals within each household, with 5 sections: 1) Demographic information, 2) Assessment of functioning, 3) Awareness of rights of people with disability, 4) Well-being and quality of life, 5) Participation in the community. Prior to field-testing the RAD questionnaire in Bangladesh, a qualitative study was conducted to ensure the relevance of the questionnaire in the context of a developing country. In-depth interviews with 9 people with disability and a focus group of 8 parents of children with disability were conducted in Dhaka, Bangladesh. 

 

Results:Qualitative findings highlighted factors relevant to the lives of people with disability in Bangladesh, including discrepancies between the awareness and attainment of rights for people with disability, the wellbeing of people withdisability and their families, as well as numerous barriers to full participation in their community. While the findings confirmed that the design and content of the questionnaire reflected all these aspects, some changes were made to the items in the questionnaire to ensure that it reflected the views of people with disability from the context of a developing country.

 

Conclusion and Implications: This qualitative study was an important step in the development of the RAD questionnaire as it helped to achieve its aim - namely, to establish the prevalence of disability and to assist in the design and evaluation of disability inclusive interventions in the setting of a developing country.

The Face of Disability in Nigeria: A Disability Survey in Kogi and Niger States

SMITH, N
2011

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The Leprosy Mission Nigeria conducted a disability survey in Kogi and Niger States of Nigeria in 2005, investigating the demographic characteristics of people with disabilities, including gender, age, religion, marital, educational, occupational, employment and economic status, understanding of disability and health-seeking behaviour.

 

Information was gathered from a convenience sample of participants, across 30 randomly selected towns and villages in the two states. Twelve trained bilingual research assistants were used, to translate the English language questionnaire verbally into the local language of each participant.

 

From the 1093 respondents studied, the most common disabilities involved vision (37%), mobility (32%) or hearing (15%). A third of these were less than 21 years of age and had no occupation, and 72% were Muslim. Over half of them had no education, 20% had primary, 8% secondary, 2% tertiary and 18% had Islamic education. Common occupations were begging (16%), studying (14%), farming (11%) and trading (8%). The majority were unemployed (61%) due to their disability. Over 70% were not able to access disability specific health services and 37% had an assistive device. Services accessed included health - mainstream (90%), traditional (61%) and counselling (58%); and other - rehabilitation (30%), assistive device provision (24%), welfare (22%), special education (15%), vocational training (10%) and economic empowerment (4%).

 

These results are comparable with findings in other studies. Disability affects a person’s ability to participate in education, work, family life and religion, influences health-seeking behaviour and contributes to poverty.

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