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World Report on Hearing
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The World Report on Hearing (WRH) has been developed in response to the World Health Assembly resolution (WHA70.13), adopted in 2017 as a means of providing guidance for Member States to integrate ear and hearing care into their national health plans.
Based on the best available evidence, this report presents epidemiological and financial data on hearing loss; outlines available cost-effective solutions and sets the way forward through ‘Integrated people-centered ear and hearing care’ (IPC-EHC). The report proposes a set of key H.E.A.R.I.N.G. interventions that must be delivered through a strengthened health system to realize the vision of IPC-EHC.
The WRH was developed in collaboration with experts and stakeholders in the field of ear and hearing care who informed the report’s strategic direction and ensured that it reflects a range of cultural contexts and approaches to hearing care. The report is global in its reach while keeping a special focus on low- and middle-income countries, where the number of people with hearing loss is not matched by the availability of services and resources.
Determining Frailty in People With IntellectualDisabilities in the COVID-19 Pandemic
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Background: Across the world, frailty is part of the guidelines that are being developed in the COVID-19 pandemic for triaging in crisis situations. The Clinical Frailty Scale (CFS) evaluates the ability to perform daily tasks to identify frail individuals, potentially excluding those from intensive care (IC) treatment. Individuals with intellectual disabilities (ID) experience varying degrees of dependence, distinct from age-related physical deterioration. Using the CFS for triage in crisis situations could potentially unjustiably exclude individuals with ID from IC treatment. Our objective was to compare the classication of individuals with ID
into different frailty categories based on the CFS and the well-studied ID-frailty index and to determine suitability of CFS for evaluation of frailty in individuals with ID during the COVID-19 pandemic.
Methods: This retrospective analysis of the observational healthy aging and intellectual disabilities (HA-ID) study included 982 individuals with ID of ≥50 years, who were classied according to the CFS and the ID-frailty index.
Results: Of the cohort of 982 older adults with ID, 626 (63.7%) would be classifed as moderately frail (CFS score 6), but 92% of this group is not moderately frail according to the ID-frailty index. Furthermore, 199 (20.3%) would be classied as at least severely frail (CFS score 7–9), but 74.9% of this group is not severely frail according to the ID-frailty index. Overall, 730 out of 982 (74.9%) individuals would be incorrectly classied by the CFS as too frail to have a good probability of survival. The ID-frailty index predicts mortality better than the CFS in individuals with ID.
Conclusions: Our results show the CFS is not suitable to evaluate frailty in individuals with ID, with potential dramatic consequences for triage and decision-making during the COVID-19 pandemic. We strongly recommend using the ID-frailty index when assessing probability of survival for individuals with ID.
What Constitutes Good Quality End-of-Life Care? Perspectives of People With Intellectual Disabilities and Their Families
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Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life-limiting conditions. This has led to an increase in the need for end-of-life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end-of-life care from the perspectives of people with intellectual disabilities and their family members.
Methods: The study reported here aimed to nd out the care needs of people with intellectual disabilities at the end of life in Ireland. A grounded theory approach was employed to explore the perspectives of the participants. After obtaining appropriate ethical approval, 19 semi-structured individual interviews were carried out with 11 people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis.
Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential at the end of life for people with intellectual disabilities.
Conclusion: The fndings from this study have shown that people with intellectual disabilities can engage with those around them and demonstrate how they would like to be cared for, and discuss what would be considered as being good care at the end of life.
Integrated Emotion-Oriented Care for Older People With ID: Defining and Understanding Intervention Components of a Person-Centered Approach
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An increase in descriptive evidence regarding person-centered approaches for older people with intellectual disability (ID) is important, due to increased life expectancy and the present lack of sufficiently underpinned interventions. This is especially true of interventions designed to increase well-being and quality of life. A specific Dutch example is the Integrated Emotion-Oriented Care approach. Despite its status as a good practice, its effectiveness has not yet been proved, nor has descriptive evidence been made available. The primary aims of this qualitative study are to identify the intervention components, to provide demonstrative illustrations and to gain an in-depth understanding of the use of these components in the day-to-day support of older people with ID. A content analysis of five key documents was carried out. Five semi-structured interviews were then conducted with early adopters, followed by a concept mapping study with daily users. The final stage in the data collection process was a series of five focus-group interviews with experts and experienced support staff. The five intervention components of Integrated Emotion-Oriented Care for older people with ID have been systematically identified and described in detail in five narrative summaries drawn up in collaboration with early adopters, experts and experienced support staff. This study provides valuable insights that offer descriptive evidence for Integrated Emotion-Oriented Care in the care for older people with ID. Both implications and possible opportunities for future research are discussed.
Depression and Anxiety Symptoms in UK Thalidomide Survivors: A Brief Survey
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Between 1958 and 1961, the drug Thalidomide was prescribed in the UK as a treatment for morning sickness. It caused severe birth defects. Thalidomide survivors are now experiencing a range of secondary health problems, including depression and anxiety. Internationally, it is estimated that 40% to 50% of Thalidomide survivors have recently experienced common mental health problems. The aim of this study was to gather information about the pattern of symptoms of depression and anxiety amongst UK Thalidomide survivors. A cross-sectional postal survey of 182 UK Thalidomide survivors, which used Patient Health Questionnaire (PHQ-9) and General Anxiety Disorder Scale (GAD-7) to measure self-reported depression and anxiety, was conducted. Data were first analysed using descriptive statistics. A point-biserial correlation was used to examine whether being unable to work was associated with higher depression and anxiety scores. Prevalence of all levels of depression and anxiety was higher amongst the Thalidomide survivors than the general UK population but broadly similar to other groups of adults with disabling conditions. Being unable to work was associated with higher depression and anxiety scores. More research is needed to understand the relationship between early acquired physical disability and depression, in particular the implications, over the life course, of secondary health problems and changing social roles.
Enhancing Function, Fun and Participation with Assistive Devices, Adaptive Positioning, and Augmented Mobility for Young Children with Infantile-Onset Spinal Muscular Atrophy: A Scoping Review and Illustrative Case Report
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Recent advances in medical interventions have changed the prognosis for children with infantile-onset spinal muscular atrophy (SMA-1); however, little has been published regarding rehabilitation management. A rapid scoping review was conducted in November 2020 using Medline and CINAHL databases. Evidence supporting use of assistive devices and equipment to enhance participation, mobility, function, and posture in lying, sitting, and standing positions was sought. From 239 articles, only five studies (describing use of augmentative communication, manual and power mobility, supported standing and orthotic devices) met inclusion criteria. Results are presented alongside a case report of a 5-year-old boy (treated with Nusinersen since 7 months-of-age) who uses a variety of devices to enhance his activity and participation in family life. While reclined and tilted sitting positions as well as power mobility were previously considered for children with SMA-1, this child has progressed to supported upright standing, self-propelling a lightweight manual wheelchair indoors, communicating using multiple methods and taking steps in a dynamic mobility device. Power mobility was introduced in a switch-adapted cart at 11 months and he was independently exploring indoors and outside in his power wheelchair before 20 months. Research evidence is limited, but alongside the case report highlights the importance of a comprehensive and proactive approach to enhancing function, fun and participation with family and friends through adaptive equipment for children with significant and life-limiting disabilities.
Insisting on inclusion: Institutionalisation and barriers to education for children with disabilities in Kyrgyzstan
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Since 2012, the Kyrgyz government has pledged to close 17 residential institutions for children, including three for children with disabilities. But 3,000 children with disabilities remain in institutions.
This report is based on in-person visits to six institutions for children with disabilities and 111 interviews with children with disabilities, their parents, institution staff, and experts in four regions of Kyrgyzstan. It describes abuses in state care as well as barriers to education that often lead to a child’s segregation in a residential institution or special school, or their isolation at home.
Global estimates of the need for rehabilitation based on the Global Burden of Disease study 2019: a systematic analysis for the Global Burden of Disease Study 2019
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Background: Rehabilitation has often been seen as a disability-specific service needed by only few of the population. Despite its individual and societal benefits, rehabilitation has not been prioritised in countries and is under-resourced. We present global, regional, and country data for the number of people who would benefit from rehabilitation at least once during the course of their disabling illness or injury.
Methods: To estimate the need for rehabilitation, data from the Global Burden of Diseases, Injuries, and Risk Factors Study 2019 were used to calculate the prevalence and years of life lived with disability (YLDs) of 25 diseases, impairments, or bespoke aggregations of sequelae that were selected as amenable to rehabilitation. All analyses were done at the country level and then aggregated to seven regions: World Bank high-income countries and the six WHO regions (ie, Africa, the Americas, Southeast Asia, Europe, Eastern Mediterranean, and Western Pacific).
Findings: Globally, in 2019, 2·41 billion (95% uncertainty interval 2·34–2·50) individuals had conditions that would benefit from rehabilitation, contributing to 310 million [235–392] YLDs. This number had increased by 63% from 1990 to 2019. Regionally, the Western Pacific had the highest need of rehabilitation services (610 million people [588–636] and 83 million YLDs [62–106]). The disease area that contributed most to prevalence was musculoskeletal disorders (1·71 billion people [1·68–1·80]), with low back pain being the most prevalent condition in 134 of the 204 countries analysed.
Interpretation: To our knowledge, this is the first study to produce a global estimate of the need for rehabilitation services and to show that at least one in every three people in the world needs rehabilitation at some point in the course of their illness or injury. This number counters the common view of rehabilitation as a service required by only few people. We argue that rehabilitation needs to be brought close to communities as an integral part of primary health care to reach more people in need.
VOLUME 396, ISSUE 10267, P2006-2017, DECEMBER 19, 2020
https://doi.org/10.1016/S0140-6736(20)32340-0
Trends in prevalence of blindness and distance and near vision impairment over 30 years: an analysis for the Global Burden of Disease Study
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To contribute to the WHO initiative, VISION 2020: The Right to Sight, an assessment of global vision impairment in 2020 and temporal change is needed. This paper aims to extensively update estimates of global vision loss burden, presenting estimates for 2020, temporal change over three decades between 1990–2020, and forecasts for 2050.
A systematic review and meta-analysis of population-based surveys of eye disease from January, 1980, to October, 2018 was carried out. Only studies with samples representative of the population and with clearly defined visual acuity testing protocols were included. Hierarchical models were fitted to estimate 2020 prevalence (with 95% uncertainty intervals [UIs]) of mild vision impairment (presenting visual acuity ≥6/18 and <6/12), moderate and severe vision impairment (<6/18 to 3/60), and blindness (<3/60 or less than 10° visual field around central fixation); and vision impairment from uncorrected presbyopia (presenting near vision <N6 or <N8 at 40 cm where best-corrected distance visual acuity is ≥6/12). We forecast estimates of vision loss up to 2050.
https://doi.org/10.1016/ S2214-109X(20)30425-3
Children with disabilities. Ensuring their inclusion in COVID-19 response strategies and evidence generation
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Even before the COVID-19 pandemic struck, children with disabilities were among the most disadvantaged, facing increased exposure to abuse and discrimination and reduced access to services in many parts of the world. Understanding these pre-existing vulnerabilities can help anticipate how the COVID-19 pandemic could sharpen existing inequities and can shed light on where targeted efforts may be required.
The publication below draws on pre-COVID data to highlight how children with disabilities face greater risks in the midst of this pandemic. It documents what has happened to services for children and adults with disabilities across the world and includes examples of what has been done to address disruptions in services. It also discusses the challenges in generating disability-inclusive data during the pandemic.
Disability inclusion annual report 2020
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The number of Palestine refugees registered by UNRWA recently grew to 5.7 million (from 5.5 million in 2019) in all its five field of operations in Jordan, Lebanon, Syria, Gaza and the West Bank. Among them are Palestine refugees with disabilities, who have long-term impairments, which in interactions with attitudinal, institutional, and environmental barriers prevent their full and effective participation on an equal basis with others in society. Persons with disabilities constitute an estimated 15 per cent of the global population1, and may constitute a higher percentage in humanitarian contexts, such as Syria, the West Bank and Gaza, in particular, which are UNRWA fields of operations.
The main actions undertaken in 2020 discussed in the report are:
- targeted and disability-specific services for persons with disabilities
- disability inclusion through programmes
- inter-agency coordination
- international protection advocacy
Breaking down barriers to travel. Championing disability inclusive and accessible travel
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Inclusivity is a key element to exceptional travel experiences – enabling individuals all over the world to experience diverse countries, cultures and opportunities. Yet often, disability inclusion is not at the forefront of travel products and services.
This report will support travel providers to understand why disability inclusion matters to the industry whilst celebrating and learning from providers already striving to be more inclusive through their innovative practices
To gather stories and examples of best practice from within the travel industry, we developed a “Call for Case Studies” survey which was distributed to both Leonard Cheshire and Expedia Group’s networks. From these submissions, we selected examples which highlighted innovative practice and represented our key themes of the report
Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review protocol
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Purpose
Appropriate wheelchair provision is necessary for addressing participation barriers experienced by individuals with mobility impairments. Health care professionals involved in the wheelchair service provision process require a specific set of skills and knowledge to enable wheelchair use that meets individual posture, mobility and daily living requirements. However, inconsistencies exist in academic programmes globally about providing comprehensive education and training programmes. The planned scoping review aims to review and synthesize the global literature on wheelchair service provision education for healthcare professional students, healthcare personnel and educators offered by universities, organizations and industries.
Methods
This scoping review will be guided by the Joanna Briggs Institute (JBI) methodological framework. Comprehensive literature searches will be conducted on various global electronic databases on health to seek out how wheelchair service provision education is organized, integrated, implemented and evaluated. Two independent reviewers will perform eligibility decisions and key data extractions. Data from selected studies will be extracted and analysed using conventional content analysis. Information related to wheelchair service provision education including curriculum development, content, teaching methods, evaluation and models of integration will be synthesized.
Implications and dissemination
The planned scoping review will be the first to examine all aspects of wheelchair service provision education across professionals, settings and countries. We anticipate that results will inform the content of a Wheelchair Educators’ Package, and if appropriate, a follow-up systematic review. An article reporting the results of the scoping review will be submitted for publication to a scientific journal.
An overview of assistive technology products and services provided in Malawi
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Background
Assistive technology is the products and services used by individuals with functional limitations to enable participation in society and realisation of rights afforded by the United Nations Convention on the Rights of Persons with Disabilities. The Assistive Product List is a comprehensive list of products identified as essential for access through universal health coverage. Key stakeholders, including organisations of persons with disabilities, civil service organisations, academic organisations and government ministries are collaborating to integrate assistive technology into policy and develop a priority assistive products list for Malawi.
Objective
To understand the organisational characteristics of, and assistive products provided by, key stakeholders working in AT in Malawi.
Study Design
Online survey of representatives from key stakeholder organisations.
Methods
We surveyed representatives of key stakeholder organisations to gather information regarding assistive technology product and service provision in Malawi. Responses were analysed using counts for closed-ended questions, and conventional content analysis for open-ended questions.
Results
A total of 36 of the 50 APL products were provided by eight organisations. Related services were provided for 36 of the 50 APL products by twelve organisations. Five organisations reported providing both products and services. Products and services are largely funded by donation and provided free to those who require them.
Conclusion
A range of organisations in Malawi play a role in assistive product delivery and related services. Coordinated AP delivery and service provision is required at a national level which is sustainable and inclusive, and is based on identified needs of the Malawian population.
Philosophy, disability and social change conference (9-11 Dec 2020)
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The Philosophy, Disability and Social Change online conference comprises presentations by disabled philosophers whose cutting-edge research challenges members of the philosophical community to:
- think more critically about the metaphysical and epistemological status of disability;
- closely examine how philosophy of disability is related to the tradition and discipline of philosophy;
- acknowledge the continuing exclusion of disabled philosophers from the profession of philosophy;
- seriously consider how philosophy and philosophers contribute to the pervasive inequality and subordination that disabled people confront throughout society;
- develop mechanisms designed to transform the current professional and institutional position of disabled philosophers in particular and the economic, political and social position of disabled people more generally.
The presentations will highlight the diversity and range of approaches to critical philosophical work on disability and showcase the heterogeneity with respect to race, gender, nationality, sexuality, gender identity, culture, age and class of the community of disabled philosophers.
This conference is organised as part of the Alfred Landecker Programme at the Blavatnik School of Government.
Session titles:
- Unmaking disability: Philosophy and social change
- African communitarian philosophy and disability in African contexts
- Dis/ableist inheritance
- Ageism, ableism and the power of the double bind
- Philosophy, the apparatus of disability, and the nursing-home industrial complex
- Neurodiversity and the pathology paradigm
- A neurodiversity paradigm for moral responsibility
- Cheap talk: Stuttering, trolls and talking heads
- Vulnerability to COVID-19 and the moral perniciousness of congregate care
- Captivity, carceral logics, and disposability
- Chronic fatigue as adversity under capitalism
- Phenomenologies of debilitation and questions of volition
- 'He's not worth it': The deleterious character of the disabled Black male
- COVID-19 as crisis
- Risking ourselves: The politics and persons of risk
SDG-CRPD Resource Package
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OHCHR developed a package of resources to support realizing the Sustainable Development Goals for persons with disabilities. These include resources on policymaking (Policy Guidelines for Inclusive SDGs; Training Materials and Videos) and resources on monitoring (Human Rights Indicators on the Convention on the Rights of Persons with Disabilities and a Data Sources Guidance).
SDGs:
The Policy Guidelines on inclusive Sustainable Development Goals set out the main actions that should be used to develop policies to achieve the goals for persons with disabilities. Training Materials complementing the guidelines include tools to develop in-person and online trainings. The videos mirror the guidelines and can be used for training and awareness-raising activities.
There are Policy Guidelines, Training Materials and Videos for SDG goals 10, 16, 17, 1, 3, 4, 5, 8 and 11. There are thematic briefs for SDG goals 2, 6, 13, 8, 11, 9 and 17.
CRPD:
Presented article by article, the indicators are key to facilitating understanding and implementation of the Convention’s provisions. They provide guidance on actions to measure implementation of the CRPD and to track progress over time. Data sources guidance mirrors the human rights indicators and provides examples of different sources of data to inform the outcome indicators.
There are indicators and data sources guidance for articles: 1-4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15 and 17, 16, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33.
2020 Harkin International Disability Employment Summit. Realising the value of inclusion
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The 2020 Harkin Summit will explore the value of disability inclusion, particularly for businesses and employers. The challenges and opportunities before us today are clear. We must immediately build back the jobs that were lost or put at risk during the COVID-19 pandemic. As we look to the future, we must permanently fix the system so that disability inclusion moves from an aspirational goal to one that is an accepted and valued component of the business strategy.
This year, The Harkin Institute is proud to partner in offering this Summit with Caroline Casey and her organization, The Valuable 500, a business-to-business initiative catalyzing the influence of large private sector corporations in national and international markets.
The mobile disability gap report 2020
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As we move towards a more digital society, it is critical that digital technologies are inclusive of everyone, including persons with disabilities. However, research conducted by the GSMA Assistive Tech programme suggests that a disability gap exists in mobile access and use.
Driving greater inclusion of persons with disabilities requires data and evidence to inform actions from multiple stakeholders. This report looks to understand the digital divide experienced by persons with disabilities, identify existing barriers to digital inclusion and define strategies and actions to close the mobile disability.
This report uses data from the GSMA Intelligence Consumer Survey 2019 to explore the digital inclusion of persons with disabilities in eight LMICs: Bangladesh, Brazil, India, Kenya, Mexico, Nigeria, Pakistan and Uganda. This report looks at key stages and milestones in the journey to mobile internet use that can pose barriers to regular and diverse mobile use
Reach the furthest behind first: Persons with disabilities must be prioritized in accessing COVID-19 vaccinations
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International Disability Alliance call on all policy-makers and health-care planners in every region and in every country to include persons with disabilities and support networks of their choice in priority groups to receive vaccinations, and to make sure that all persons with disabilities can access vaccinations on the basis of accessible and understandable information, through informed consent
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E-bulletin
Source e-bulletin on Disability and Inclusion