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Reach the furthest behind first: Persons with disabilities must be prioritized in accessing COVID-19 vaccinations

INTERNATIONAL DISABILITY ALLIANCE (IDA)
December 2020

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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

A country report: impact of COVID-19 and inequity of health on South Korea’s disabled community during a pandemic

LEE, Seungbok
KIM, Jongbae
2020

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The South Korean media boasts of its leading success–during the escalation of the coronavirus outbreak–in flattening of the curve thereby mitigating the grave outcomes of the public health crisis. Much of the success is reportedly attributed to the rapid and advanced development of test kits, essential equipment and implementation of protocols in precautionary measures. However, it has been an arduous task to stay afloat for one particular vulnerable community. The disabled citizens of Korea were confronted by the realities of health inequity during this disastrous period. Pre-existing the pandemic onset, the disabled community have faced stigmatization and under many circumstances de-prioritization by their own society. Through the lense of a visiting physician, my hope is to poignantly and respectfully share personal experiences and thoughts on these realties impacted by the COVID-19 pandemic in South Korea.

Disability Inclusive Development - Nigeria Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Nigeria?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Nigeria. It will be helpful for anyone interested in disability inclusion in Nigeria, especially in relation to stigma, employment, education, health, and humanitarian issues.

Legislative recommendations for public health emergencies and disasters

Partnership for Inclusive Disaster Strategies
2020

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Legislative recommendations to meet the urgent and immediate needs of people with disabilities, including multiply-marginalized people, throughout the COVID-19 Public Health Emergency, Presidential Disaster Declarations, concurrent disasters and in preparation for future disasters and public health emergencies are reported.

Interim Guidance: Scaling-up COVID-19 outbreak readiness and response operations in humanitarian situations. Including camps and camp-like settings Version 1.1

IFRC
IOM
UNHCR
WHO
April 2020

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It is of extreme importance from a protection, human-rights and public health perspectives, that people affected by humanitarian crises are included in all COVID-19 outbreak readiness and response strategies, plan and operations. There is a strong public health rationale to extend all measures to everyone, regardless of status and ensuring inclusiveness. This Interim Guidance addresses specific needs and considerations required in humanitarian situations, including camps and camp-like settings and the surrounding host communities, in scaling-up readiness and response operations for the COVID-19 outbreak through effective multi-sectoral partnership

Advice about leprosy and COVID-19

ILEP TECHNICAL COMMISSION (ITC)
April 2020

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Brief advice is given in relation to COVID-19 concerning general issues, diagnosis and clinical management of leprosy patients, public health aspects of leprosy in the COVID-19 pandemic and services for persons living with disabilities and/or psychosocial consequences of leprosy

COVID19 Resource Key advocacy messages, questions to ask on inclusion and signpost to resources to learn more

Dr. Werner-Freybergstr
March 2020

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The COVID pandemic continues to escalate across the world, this document has been prepared to;

  • Provide some top-line advocacy messages that can be used for advocacy and communications,
  • Give a few questions example that you can ask yourself/or other stakeholders to check how people with disabilities are being included,
  • Provide key resources for further reading. We recognise the importance of safe, evidence-based messages, and stand by the advice of the World Health Organisation on health-related issues, of the Inter-Agency Standing Committee on international coordination, and of the International Disability Alliance on inclusion of people with disabilities in the COVID-19 response. 

Recommendations for Immediate COVID-19 Action

Marcie Roth
March 2020

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This document provides recommendations for rapid response solutions for federal and state governments to close the real and anticipated gaps in the COVID-19 outbreak and public health emergency-related continuity of operation for people with disabilities, older adults, and people with access and functional needs. Our recommendations include contingency plans for disability and aging services, supports, and programs funded directly with federal or state funds or through federal assistance to state, local, tribal and territorial governments and non-government providers.

National call to action: COVID-19

MOYAWID
March 2020

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A coalition of disability rights and emergency management experts from across the USA issued an urgent call to action for immediate strategies and solutions from the federal government and governments at every level, including local, state, tribal and territorial, to address the specific needs of persons with disabilities throughout the COVID-19 outbreak and all public health emergencies.

Activity limitations and participation restrictions in people with multiple sclerosis: a detailed 10-year perspective

CONRADSSON, David
YTTERBERD+G, Charlotte
ENGELKES, Catharina
JOHANSSON, Sverker
GOTTBERG, Kristina
June 2019

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Aim: To conduct a detailed investigation into changes in activity limitations and participation restrictions over 10 years in people with mild, moderate and severe multiple sclerosis.

 

Methods: This study was a 10-year longitudinal study of 264 people with multiple sclerosis living in Stockholm County, Sweden. Ten-year changes in personal and instrumental activities in daily living were assessed using the Katz Activities in Daily Living Index Extended and participation in social/lifestyle activities using the Frenchay Activities Index.

 

Results: While people with moderate multiple sclerosis, compared to baseline, demonstrated significantly higher proportions of dependency in most activities of personal and instrumental activities in daily living at the 10-year follow-up, the mild group primarily increased their dependency in instrumental activities and the severe group in personal activities. Significantly higher proportions of the moderate group showed restricted participation in domestic and outdoor activities whereas the mild group only showed restrictions in a few domains of participation. A majority of people with severe multiple sclerosis showed restricted participation in all social/lifestyle activities at baseline and the 10-year follow-up.

 

Conclusions: Prominent long-term increases in activity limitations and participation restrictions occurred across the spectrum of disease severity but was most pronounced in those more moderately affected.

Perceptions and satisfaction of caregivers regarding rehabilitation services from selected rehabilitation centres in the Western Cape

MLENZANA, Nondwe B.
EIDE, Arne H.
FRANTZ, Jose M.
2018

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Background: Understanding caregivers’ views on rehabilitation services is important as it may assist in informing healthcare services and patient management.

 

Objectives: The aim of this study was to explore caregivers’ perceptions and satisfaction regarding rehabilitation services in the Western Cape, South Africa, and to inform clinical practice and policy in this emerging field.

 

Method: This study used a descriptive, qualitative design using in-depth interviews with conveniently selected participants. Interviews were conducted with 13 caregivers of patients with: amputations (3), cerebrovascular accidents (5) and neuromuscular disorders (5). Thematic content analysis was conducted with the transcripts.

 

Results: Four key themes emerged, which were (1) financial difficulties, (2) caregiver and therapist relationships, (3) facility management and (4) caregiver experience with service delivery.

 

Conclusion: Based on the participants’ feedback, the rehabilitation services seem to be meeting the basic rehabilitation needs of the patients; however, the needs of the caregivers require attention.

Utilisation and Satisfaction with Health Services among Persons with Disabilities in Accra, Ghana

ABRAHAM, Annang Yemoson
AGYEI-BAFFOUR, Peter
YARFI, Cosmos
2018

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Purpose: Healthcare, one of mankind’s basic needs, is generally accessible to persons without disability, but people with disabilities are marginalized and stigmatized in developing countries and as such are unable to utilise the health services they require.  The health-related Sustainable Development Goals (SDGs) talk about good health and well-being, and about reducing inequality in societies. In South Africa and Ghana, constitutional provisions and policies have been made for inclusion and for reducing inequality among persons with disabilities, but implementation is still in its infancy. The aim of this study is to determine the level of utilisation and satisfaction with health services among persons with disabilities, and to recommend strategies to improve the current situation in the country.

 

Method: A non-interventional, descriptive cross-sectional study was employed, with a quantitative data collection method. A structured questionnaire comprising of both open- and closed-ended questions was used for the data collection. A total of 363 respondents were involved in the study – 360 were persons with disabilities, and 3 were key informants.

 

Results: While A total of 66.9% of persons with disabilities reported being warmly received by health professionals, 23.1% reported encountering a cold attitude, and 5.6% reported being scorned at health facilities. Only 20.5% of persons with disabilities reported frequent visits to health facilities, 42.8% did not visit health facilities frequently, and 36.4% rarely visited a health facility. Moreover 76.4% reported that they made hospital visits for all their ailments.

 

Conclusion: Although health facilities were utilised by few persons with disabilities, the majority of respondents reported that they were well-received there and as such would visit health facilities for all their medical needs.

 

Implications: Persons with disabilities should be included in all areas of society by spreading awareness about their abilities. Partnerships between persons with disabilities and the government and other non-governmental  organization’s should be established, to mainstream health services to meet their general and specific needs. It is increasingly important that persons with disabilities play an active role in managing their healthcare needs.

National approaches to promote sports and physical activity in adults with disabilities: examples from the Netherlands and Canada

HOEKSTRA, Femke
ROBERTS, Lynn
VAN LINDERT, Caroline
MARTIN GINIS, Kathleen A
VAN DER WOUDE, Lucas H V
MCCOLL, Mary Ann
January 2018

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Purpose: This study described how the Dutch and Canadian governments promote high performance sports, recreational sports, and physical activity (PA) among adults with disabilities on a national level.

 

Methods: An internet-based study was conducted to identify and select relevant documents and websites containing information about the national approach to promote disability sports and physical activities in the Netherlands and Canada.

 

Results: Both governments promote high performance sports in similar ways, but use different strategies to promote recreational sports and physical activities. The Dutch approach is characterized by using time-limited programs focusing on enhancement of sports infrastructure and inter-sector collaboration in which municipalities have key roles. The Canadian government promotes recreational sports in disabled populations by supporting programs via bilateral agreements with provinces and territories. Furthermore, the level of integration of disability sports into mainstream sports differs between countries.

 

Conclusions: The findings of this study may inspire policy makers from different countries to learn from one another’s policies in order to optimize national approaches to promote disability sports and PA on all levels.

Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.

Health-related quality of life of patients six months poststroke living in the Western Cape, South Africa

RHODA, Anthea, J
2014

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Background: The majority of individuals report a decline in health-related quality of life following a stroke. Quality of life and factors predicting quality of life could differ in individuals from lower income countries. The aim of this study was therefore to determine the quality of life and factors influencing quality of life of community-dwelling stroke patients living in low-income, peri-urban areas in the Western Cape, South Africa.

 

Method: An observational, longitudinal study was used to collect data from a conveniently selected sample of first-ever stroke patients. The Rivermead Motor Assessment Scale and the Barthel Index were used to determine functional outcome and the EQ-5D was used to collect information relating to quality of life at two months and six months poststroke. Descriptive and inferential statistics were used to analyse the data.

 

Results: The total sample of 100 participants consisted of 50% men and 50% women with a mean age of 61 and a standard deviation of 10.55 years. Six-month quality of life datawas analysed for 73 of the 100 participants. Of the 27 who were lost to follow-up, nine participants died, four withdrew from the study after baseline data was collected and eleven could not be followed up as they had either moved or no follow-up telephone numbers were available. A further three participants were excluded from the analysis of the EQ-5D as they were aphasic. Of these, approximately 35% had problems with mobility and self-care, whilst 42% had severe problems with everyday activities and 37.8% expressed having anxiety and depression. Quality of life at two months (p = 0.010) and urinary incontinence (p = 0.002) were significant predictors of quality of life at six months.

 

Conclusion: Health-related quality of life was decreased in the South African stroke sample. Functional ability and urinary incontinence were the factors affecting quality of life in the sample. These factors should be considered in the rehabilitation of stroke patients in these settings.

Inclusion of vulnerable groups in health policies: Regional policies on health priorities in Africa

SCHNEIDER, Margie
EIDE, Arne Henning
AMIN, Mutamad
MACLACHLAN, Malcom
MANNAN, Hasheem
2013

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Background: If access to equitable health care is to be achieved for all, policy documents must mention and address in some detail different needs of groups vulnerable to not accessing such health care. If these needs are not addressed in the policy documents, there is little chance that they will be addressed at the stage of implementation.

 

Objectives: This paper reports on an analysis of 11 African Union (AU) policy documents to ascertain the frequency and the extent of mention of 13 core concepts in relation to 12 vulnerable groups, with a specific focus on people with disabilities.

 

Method: The paper applied the EquiFrame analytical framework to the 11 AU policy documents. The 11 documents were analysed in terms of how many times a core concept was mentioned and the extent of information on how the core concept should be addressed at the implementation level. Each core concept mention was further analysed in terms of the vulnerable group in referred to.

 

Results: The analysis of regional AU policies highlighted the broad nature of the reference made to vulnerable groups, with a lack of detailed specifications of different needs of different groups. This is confirmed in the highest vulnerable group mention being for ‘universal’. The reading of the documents suggests that vulnerable groups are homogeneous in their needs, which is not the case. There is a lack of recognition of different needs of different vulnerable groups in accessing health care.

 

Conclusion: The need for more information and knowledge on the needs of all vulnerable groups is evident. The current lack of mention and of any detail on how to address needs of vulnerable groups will significantly impair the access to equitable health care for all.

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