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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

‘Teachers Did Not Let Me Do It.’: Disabled Children’s Experiences of Marginalisation in Regular Primary Schools in China

WANG, Yuchen
2021

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The large-scale mainstreaming of disabled children in education in China was initiated with the launching of a national policy called ‘Learning in Regular Classrooms’ in the late 1980s. More than thirty years on, and little is known about disabled children’s daily experiences in regular schools due to a lack of research that foregrounds their voices. This paper reports the main findings from an ethnographic study conducted in 4 state- funded primary schools in Shanghai involving 11 children labelled as having ‘intellectual disabilities’, 10 class teachers and 3 resource teachers. Data were collected through participant observation, semi-structured interviews, and child-friendly participatory activities, and thematically analysed to identify patterns in practices and beliefs that underpin the processes of inclusion and exclusion. The research found that the child participants were facing marginalisation in many aspects of school life with rather limited participation in decision-making. The exclusionary processes were reinforced by a prevailing special educational thinking and practice, a charitable approach to the disadvantaged in a Confucian society, and an extremely competitive and performative schooling culture. The findings address the need to hear disabled children’s voices to initiate a paradigm shift in understanding and practice to counterbalance deep-rooted barriers. The paper concludes with suggestions for future research.

Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study

HUANG, Mei-Zen
CHEN, Li-Li
HUNG, Shu-Ling
PUTHUSSERY, Shuby
2020

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People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.

Inclusive practices in disaster risk management. Experiences of social actors and government entities in Latin America

HUMANITY & INCLUSION (HI)
December 2020

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Twelve inclusive practices are presented that explore the application of the inclusive approach to disaster risk management. Collecting and sharing inclusive practices is one axis of the project, “Inclusive Disaster Risk Management: An innovative approach towards inclusion of most vulnerable groups”, which aims to disseminate inclusive disaster risk management in Latin American countries in order to increase protection and resilience in high-risk groups. The project accompanies and strengthens regional, national, and local actors from the following countries: Bolivia, Chile, Colombia, Ecuador, Nicaragua, Paraguay, and Peru.

 

This regional initiative for inclusive disaster risk management is led by Humanity & Inclusion (HI), in partnership with Save the Children International Peru (SCI) and Cooperazione Internazionale Paraguay (COOPI). 

Arranging play activities with missing items to increase object-substitution symbolic play in children with autism spectrum disorder

LEE, Gabrielle T
QU, Kezheng
HU, Xiaoyi
JIN, Ning
HUANG, Jingiing
March 2020

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Purpose: Many children with autism spectrum disorder do not have symbolic play skills. The purpose of this study was to evaluate the effects of a training procedure on the acquisition, maintenance, and generalization of object-substitution symbolic play in children with autism spectrum disorder.

 

Methods: A single-case experimental design (multiple-probe across four behaviors) was used. One girl (5 years) and two boys (4–5 years) participated in this study. The training procedure involved withdrawing necessary items in play activities, supplying multiple substitutes, and providing hierarchical assistive prompts. Each child’s symbolic play responses across baseline, intervention, and follow-up conditions were recorded and graphed. Data analysis involved visual inspection of graphs.

 

Results: The results indicated that the procedure effectively increased and maintained object-substitution symbolic play. Generalization to untaught play activities occurred in all children, and symbolic play increased in the free play setting for one child.

 

Conclusions: Arranging play activities with missing items increased opportunities for children to engage in symbolic play. The training procedure can be used in clinical and educational settings as an initial step to establish and improve complex play behavior in children with autism spectrum disorder who lack such skills.

Mainstreaming inclusive education: Sharing good practices

KABANI, Maliha
HEIJNEN-MAATHUIS, Els
LIGNELL, Mats
et al
May 2019

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The primary aim of this documentation is to provide a deeper understanding of how Save the Children projects have applied more inclusive concepts in not only changing the lives of children with disabilities, those living in poverty or children from ethnic minority populations, their families and communities, but in catalysing changes in policies and practices to the education system to benefit all learners. The stories follow a common structure describing the background of the project, a description of an approach that has worked especially well in the project, followed by stakeholder and partner engagement, participation of children, key milestones and significant challenges, scalability and sustainability, recommendations for replication and contact links for project tools and materials. A selection of practical tools and models have been attached as annexes.

The Effect of Age, Gender and Socioeconomic Status on Self-esteem, Body Image and Quality of Life of Amputees: An Evaluation Seven Years after the 2008 Sichuan Earthquake

LAM, Tin-Wai J
TANG, Long-Ching L
CHAU, WW
LAW, SW
CHAN, KM
2019

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Purpose: Psychological well-being is a growing concern in society. It is starting to play a pivotal role in the treatment and care of clients. This study aimed to evaluate the effect of age, sex and socioeconomic status on the self-esteem, body image and quality of life of the 2008 Sichuan earthquake amputees. Many of them are at a significant stage in their lives, especially those who are making the transition from childhood and adolescence into adulthood.

 

Methods: This cross-sectional study was conducted in October 2015. Forty-five participants were recruited from clinic sessions in Sichuan. The main outcome measures were Rosenberg Self-Esteem Scale (RSE), Chinese Amputee Body Image Scale (CABIS), and WHO Quality of Life-Bref Instrument (WHO-QOL-Bref). Results were analysed using Student’s T-test and Chi-square test where appropriate, and ANOVA for multi-group comparisons.

 

Results: Participants under 18 years of age scored higher in RSE (p=0.05), and lower in CABIS (p<0.005). They also scored higher in various QOL domains (D3: p<0.08, D4: p=0.06) and WHOQOL-Bref question 2 (p=0.06). Participants of different SES did not show any significant differences in the outcome measures. Female subjects scored higher in WHOQOL-Bref Question 1 (p=0.03).

 

Conclusion and Implication: Younger amputees have less body image distortion, higher quality of life and self-esteem compared to older amputees. Female amputees also appear to have a higher quality of life compared to male amputees. Socioeconomic status does not affect rehabilitation outcome and psychological well-being of amputees. However, the main factors affecting psychological well-being appear to be predominantly age and, possibly, gender.

Seeing the invisible: Sexuality-related knowledge, attitudes and behavior of children and youth with disabilities in China

SHANGHAI INSITITUTE OF PLANNED PARENTHOOD RESEARCH (SIPPR)
UNESCO
HUMANITY & INCLUSION (HI)
2019

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Young people with disabilities have the same right to Sexual and Reproductive Health (SRH) as their peers without disabilities, but their needs and rights are often overlooked. This study examines the SRH status of young people with disabilities in China. In particular, the study explored the sexuality-related knowledge, attitudes and behaviour of young people with disabilities as well as their access to sexuality-related information, education and services. The findings of the study are intended to provide evidence to support decision-making by government agencies, educators, development workers and other relevant stakeholders regarding developing and implementing disability-inclusive SRH and sexuality education policies and programmes for young people in China.

The study, using quantitative and qualitative methods, was conducted in 2015 among unmarried young persons aged 12 to 24 living with visual, hearing, physical and intellectual disabilities, in both urban and rural areas. The analysis was based on data collected through 707 completed valid questionnaires, 20 group interviews and 35 individual interviews with young people with disabilities, and individual interviews with 60 parents and teachers, along with one case study.

Asia Disability Toolkit

COMMUNITY BUSINESS
2018

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Community Business works with companies to build disability confidence and remove barriers to inclusion for people with disabilities. Asia Disability Toolkit provides ideas and resources to support companies to plan activities and raise awareness internally. 

Eight ideas are provided:

Engage your disability network; learn about the "this is me" campaign; share an interesting video or TED talk; run a Lunch and Learn session; facilitate a discussion - show a movie or run a book club; host a training workshop; review accessibility; share top tips. Resources and suggestions are provided for each of the activities.

 

Other resources are also given: research, articles and disability organisations in the area.


 

‘Civilising’ Deaf people in Tibet and Inner Mongolia: governing linguistic, ethnic and bodily difference in China

HOFER, Theresia
SAGLI, Gry
2017

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The People’s Republic of China is home to over 20 million d/Deaf and hard-of-hearing people, many among them belonging to ethnic minorities. Drawing on ethnographic fieldwork in two minority regions, the Tibet Autonomous Region and the Inner Mongolian Autonomous Region, this article comparatively discusses findings on sign language use, education and state welfare policies. The situation in these domains is analysed through the framework of the ‘civilising project’, coined by Harrell, and its impacts on the d/Deaf and hard-of-hearing among ethnic minorities are shown. For instance, through the promotion of Chinese and Chinese Sign Language over and above the use of local sign and written languages as well as through education and the medicalisation of disabilities.

The economic burden of dementia in China, 1990–2030: implications for health policy

WORLD HEALTH ORGANIZATION
January 2017

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Objective To quantify and predict the economic burden of dementia in China for the periods 1990–2010 and 2020–2030, respectively, and discuss the potential implications for national public health policy. Methods Using a societal, prevalence-based, gross cost-of-illness approach and data from multiple sources, we estimated or predicted total annual economic costs of dementia in China. We included direct medical costs in outpatient and inpatient settings, direct non-medical costs – e.g. the costs of transportation – and indirect costs due to loss of productivity. We excluded comorbidity-related costs.

Findings The estimated total annual costs of dementia in China increased from 0.9 billion United States dollars (US$) in 1990 to US$47.2 billion in 2010 and were predicted to reach US$ 69.0 billion in 2020 and US$ 114.2 billion in 2030. The costs of informal care accounted for 94.4%, 92.9% and 81.3% of the total estimated costs in 1990, 2000 and 2010, respectively. In China, population ageing and the increasing prevalence of dementia were the main drivers for the increasing predicted costs of dementia between 2010 and 2020, and population ageing was the major factor contributing to the growth of dementia costs between 2020 and 2030.

Conclusion In China, demographic and epidemiological transitions have driven the growth observed in the economic costs of dementia since the 1990s. If the future costs of dementia are to be reduced, China needs a nationwide dementia action plan to develop an integrated health and social care system and to promote primary and secondary prevention.

China’s Mental Health Law: Analysis of Core Concepts of Human Rights and Inclusion of Vulnerable Groups

Hussey, Meghan Marie
Mannan, Hasheem
2016

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Purpose: The aim of this research is to assess China’s first Mental Health Law in terms of Core Concepts of Human Rights and equitable coverage of Vulnerable Groups.

 

Methods: The EquiFrame analytical tool provided the framework for evaluation of the inclusion of Core Concepts of Human Rights as well as Vulnerable Groups in the Law.

 

Results: China’s Mental Health Law scored 83% for Core Concept coverage, with a Core Concept Quality score of 76%. The Law had a 42% score for Vulnerable Groups coverage. This gave the Law an overall score of “Moderate” in terms of Human Rights coverage.

 

Conclusions: China’s Mental Health Law is a landmark document providing the country’s first ever legal framework for mental health. While the Law scores high on level commitment in Core Concepts of Human Rights, the potential for equitable protection would be enhanced by increased inclusion of Vulnerable Groups.

 

Limitations: Further analyses of health and social policies in the People’s Republic of China from a Human Rights perspective would provide a deeper understanding of the Law in context.

Training social facilitators in personalised social support: Trainers’ booklet

LAFRENIERE, Annie
RELANDEAU, Audrey
KIANI, Shirin
December 2015

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This booklet is the gateway for a training kit on personalised social support (PSS). The aim of this training course is to train social facilitators either in the personalised approach only, or in how to carry out a complete PSS process. The aim of this booklet is therefore to impart the methodological and educational components required to use the content of this training course to Handicap International’s (now Humanity and Inclusion) future PSS trainers. It therefore takes another look at the entire content of the PSS training course, explains the educational choices, presents the modules and other teaching tools created, and above all, provides advice/recommendations for future designers and trainers/facilitators on this theme. Throughout this booklet, internet links provide the reader with quick access to the content of training courses and other relevant resources

Participation and quality of life outcomes among individuals with earthquake-related physical disability: A systematic review

NUNNERLEY, Joanne
DUNN, Jennifer
McPHERSON, Kathryn
et al
May 2015

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A literature review to evaluate quality of life and participation outcomes of individuals with earthquake-related physical injury. A systematic review was performed searching MEDLINE, Embase, PsychINFO, CINAHL and AMED electronic databases from 1966 to January 2014. Studies that measured quality of life or participation outcomes among individuals who acquired a physical disability as a result of an earthquake injury were included, with no limits on research design. The search yielded 961 potentially relevant articles after removal of duplicates. Of these, only 8 articles met the inclusion criteria. Seven papers were reviewed from the following 5 earthquakes: 2001 Gujarat earthquake, India; 2008 Wenchuan earthquake, China (also known as the Sichuan earthquake); 2005 Kashmir earthquake, Pakistan (27); 2009 Padang earthquake, Indonesia; 2010 Port-au-Prince earthquake.

Journal of Rehabilitation Medicine, vol.47, no.5, 2015, 385-393

10.2340/16501977-1965

Mobile for development : transforming global healthcare through mobile technology

THEVATHASAN, Vanessa
GRADZEWICZ, Agnes
RUETZEL, Sonja
2015

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This paper outlines the need for greater connectivity & accessibility in less developed countries. Following this, the authors present the benefits of various different ‘mHealth’ solutions, presented through case studies. The report concludes by outlining some of the constraints holding back greater ‘mHealth’ innovation, including financing and sustainability issues

Survey of Reproduction Needs and Services: Situation of Persons with Spinal Cord Injuries

JINMING, Z
YUGE, Z
GENLIN, L
YUCHEN, G
SUWEN, C
2014

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Purpose: This article explores the reproductive wants and needs of persons with spinal cord injuries (SCI), along with factors that influence these needs and the services available to them.

 

Method: The study sample comprised persons with SCI from China Rehabilitation Research Centre who matched the research criteria and consented to participate. Data collection took place through questionnaires and in-depth interviews. After the objectives, contents and methods of the survey were explained, 63 respondents answered the questionnaire, and 17 of them (15 men and 2 women) agreed to participate in the in-depth interviews. All the respondents were above 18 years of age, either unmarried or married, and childless.

 

Results: It was found that 85.7% of the respondents wished to have children. The more severe the SCI, the less was the desire for children. Those with higher levels of education were less inclined to have children. While financial situation had little impact on the wish for children, the impact of traditional concepts was significant. The reproductive experiences of other SCI clients had a significant influence on respondents’ desire to have children. More than 50% of the respondents were ignorant that they could have babies after SCI. 96.8% of them believed that a child played an important role in marital stability. Though 54% of the respondents wished to have their sexual and fertility problems addressed in medical and rehabilitation institutions, 93.7% said they had not received any such professional services during the previous year.

 

Conclusions: Although most persons with spinal cord injuries are very keen to have children, their wants and needs are not recognised and little attention is paid to specialized service provision to address their needs. This study suggests that steps such as improving awareness, disseminating knowledge and setting up institutions to provide professional services are necessary to address reproductive needs and to protect the reproductive rights of persons with SCI.

Inclusion of youth with disabilities: The business case

INTERNATIONAL LABOUR ORGANISATION
January 2014

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This is a how-to guide for companies interested in integrating youth with disabilities into their workforce. "This guide is based on initiatives that are currently tried out by ten companies to employ youth with disabilities in eight countries (Brazil, Chile, China, India, Norway, Republic of Serbia, Singapore and the United States). Good practices and useful insights are identified and explained through first-hand accounts. First, the business case for employing youth with disabilities is made. This section will highlight how two companies benefited from initiatives to employ youth with disabilities. Next, four reoccurring good practices that were cited in the featured cases are given particular consideration:

  • partner with an organization that specializes in disability services;
  • provide (when necessary) disability-accessible skills training;
  • offer recruitment and job placement services;
  • embrace a policy of inclusion and non-discrimination"

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