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A global agenda for inclusive recovery: Ensuring people with intellectual disabilities and families are Included in a post-COVID world

INCLUSION INTERNATIONAL
May 2021

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This report documents the experiences of people with intellectual disabilities and their families during COVID-19 and proposes a global agenda for inclusive COVID recovery developed by Inclusion International’s membership. The global agenda is a set of imperatives for policy and programming to ensure that “building back better” creates a more inclusive world.

Equal access without discrimination - The Right to Disability-Inclusive Health

LIGHT FOR THE WORLD
May 2021

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The right to the highest attainable standard of health is fundamental, as health is a precondition for equal participation in society. People with disabilities continue to experience discrimination, barriers and rights violations in their access to health. This Issue Brief outlines how governments, international organisations and development actors can mainstream disability inclusion into their health strategies, services and interventions.

Disability inclusive Universal Healthcare

CENTRE FOR INCLUSIVE POLICY
March 2021

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The inclusion of direct medical costs, indirect medical costs and indirect costs incurred by people with disabilities into Universal Healthcare is discussed. The importance of including assistive devices, rehabilitation and extra transportation costs in the system is highlighted. Social protection measures are also highlighted.

The protection situation during COVID-19 in Syria. The impact of COVID-19 on protection activities and on vulnerable groups

PROTECTION CLUSTER, UNHCR
February 2021

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After nearly nine months of preventative COVID-19 measures in place by the Government of Syria, the protection sector and its area of responsibilities ( Child Protection AoR, Gender Based Violence AoR and Mine Action AoR) have attempted to understand the level and types of impact this has had on the implementation of activities, specifically on partners' ability to provide services through community centers, and on the most vulnerable groups of the served population. The aim is that this report will provide protection partners with key information for reviewing and revising their current activities in light of the ongoing pandemic.

The data presented in this report was gathered during December 2020 from 213 protection partners and staff working directly or through partners with the affected population throughout Syria through an online survey. The main protection issues affecting persons with disabilities as a result of COVID-19 situation are identified.

Perspectives on access and usage of assistive technology by people with intellectual disabilities in the Western Cape province of South Africa: Where to from here?

BOOT, Fleur H
KAHONDE, Callista
DINSMORE, John
MACLACHLAN, Malcolm
2021

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Background: Whilst assistive technology (AT) can play an important role to improve quality of life, health inequity regarding access to appropriate AT for people with intellectual disabilities (ID) is still very much present especially in low resource countries.

 

Objectives: This study focused on exploring factors that influence access to and continued use of AT by people with ID in the Western Cape province of South Africa and to suggest potential implications of these findings and actions required to promote access to AT.

 

Method: A qualitative approach was used to explore the experiences of people with ID and providers of AT. Face-to-face interviews with 20 adults with mild to profound ID, and 17 providers of AT were conducted and the data were analysed thematically.

 

Results: People with ID within the study setting faced many challenges when trying to access AT and for those who managed to acquire AT, its continued usage was influenced by both personal characteristics of the user and environmental factors. Important factors that influence AT access and use for people with ID found in this study were (1) attitudes from the community, (2) knowledge and awareness to identify AT need and (3) AT training and instructions to support the user and care network.

 

Conclusion: With the perspectives of both the providers and users of AT, this study identified priority factors, which could be addressed to improve AT access and use for people with ID in the Western Cape province.

Barriers to Utilisation of Dental Services among Children with Disabilities in a Coordinated Healthcare Programme in Mangalore, South India: A Mixed Methods Study

SURESH, L R
RAI, K
HEGDE, A M
DSOUZA, C V
2021

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Purpose: Unmet oral health needs affect the quality of life of individuals, especially if they are already at a disadvantage like children with special health care needs. Strategies to mitigate these disparities in India’s diverse healthcare settings have hitherto been largely ineffective. This study was aimed to assess the utilisation and barriers to the use of dental health services among children with special health care needs, against the background of a coordinated healthcare programme implemented in Nitte (Deemed to be University), Mangalore, India.

 

Method: The study was conducted over a 6-month period, from September 2018 to February 2019. A mixed-methods design was concurrently employed for data collection. Utilisation of dental services was assessed quantitatively, and the barriers to dental services utilisation were assessed qualitatively through caregiver interviews, with a sequential data integration strategy.

 

Results: The quantitative data revealed gross underutilisation of dental resources by children (only 16% availed some form of dental treatment), and the prevalence of avoidance behaviour (63% showed reluctance and did not turn up for appointments). Restorative needs formed the highest unmet dental component among the children (67% required secondary dental care). In-depth interviews with the children’s caregivers revealed that the presence of cognitive barriers could have a direct effect on the time and quality of dental care delivered to their children.

 

Conclusion: Cognitive barriers among caregivers appear to have a profound impact on the underutilisation of dental services in their children with special healthcare needs. These barriers may be addressed within the integrated healthcare programme and the dental curricula through provisions for continued individual and community dental education, and motivational efforts that simultaneously target the caregivers and their children with special healthcare needs.

What are the most effective strategies for strengthening health systems for disability inclusive development? - Evidence brief

MACTAGGART, Islay
February 2021

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Health system strengthening refers to initiatives that improve one or more functions of health systems, leading to better health. There is a large body of evidence on what works to strengthen health systems in low- and middle-income countries (LMICs), much of which is aligned to the World Health Organization (WHO) health system building blocks (service delivery; health workforce; information; medical products, vaccines and technologies; financing; and leadership/governance). Despite the fact that some people with disabilities have additional health needs, and many face additional barriers to accessing healthcare, inclusion of people with disabilities is largely missing from this evidence base. Separately, a smaller evidence base exists on increasing the effectiveness of specific health-related services targeting people with disabilities, such as health-related Community Based Rehabilitation (CBR), rehabilitation services more broadly, and mental health services. This second evidence base is less closely aligned to the building blocks. Reviewing these outputs in parallel goes some way towards identifying effective strategies for strengthening health systems for disability inclusive development.

Impact of Covid-19 on people with disabilities in Albania

LAHE, Alma
SHEHU, Arlinda
January 2021

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This report aims to assess the level of access that People with Disabilities have to services and institutions during the pandemic period, as well as to analyze their economic and financial needs to cope with the consequences of the crisis caused by COVID-19.

The survey was conducted in the form of a quantitative field survey. 360 individuals participated in the survey: 199, or 55.3%, of the participants were people with disabilities (PWDs) while the remaining 161 persons, or 44.7%, were guardians or parents of a person with disabilities. The survey was conducted in all 6 districts of the country. The questionnaire was designed to gather information on the perceptions, attitudes, behaviors and experiences of people with disabilities during the COVID-19 period.

World Report on Hearing

WORLD HEALTH ORGANISATION (WHO)
2021

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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.

What Constitutes Good Quality End-of-Life Care? Perspectives of People With Intellectual Disabilities and Their Families

CITHAMBARM, Kumaresan
DUFFY, Mel
COURTNEY, Eileen
2021

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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.

Children with disabilities. Ensuring their inclusion in COVID-19 response strategies and evidence generation

UNITED NATIONS CHILDREN'S FUND (UNICEF)
December 2020

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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.

Economic assessment of a community-based care package for people with lower limb disorder caused by lymphatic filariasis, podoconiosis and leprosy in Ethiopia

HOUNSOME, Natalia
KINFE, Mersha
SEMRAU, Maya
ALI, Oumer
TESFAYE, Abraham
MENGISTE, Asrat
BREMNER, Stephen
AHMED, Abdulkadir
FEKADU, Abebaw
DAVEY, Gail
December 2020

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We conducted an implementation research study to integrate a holistic package of physical health, mental health and psychosocial care for podoconiosis, lymphatic filariasis and leprosy into routine healthcare in Gusha cluster, Guagusa Shikudad district, northwest Ethiopia. The healthcare package included training patients in lower limb hygiene and skin care and provision of shoes, hygiene supplies and medication. The implementation activities included training events, workshops, awareness raising, self-help groups, supportive supervision, staff secondments and advisory board meeting. 

 

Transactions of The Royal Society of Tropical Medicine and Hygiene, Volume 114, Issue 12, December 2020, Pages 1021–1034

https://doi.org/10.1093/trstmh/traa111
 

COVID-19 Resources and templates

MOTIVATION AUSTRALIA
October 2020

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Links to resources on information about COVID-19 for the general public and also specifically for health workers are provided. Links are provided for country specific information.

A COVID safe workplace plan template and a COVID workplace attendance register template have been developed to help health services and departments in the Pacific region to plan for and prevent the spread of COVID-19 in their workplace.

 

Reflection on the 30th Anniversary of the ADA in time of mass uncertainty

LeBLANC, Nicole
October 2020

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Nicole LeBlanc, a disability rights activist, talks about the 30th anniversary of the Americans with Disabilities Act (ADA) and what she hopes for the next 30 years. Areas highlighted on the road to achieving equality and equity for all include health and health services, housing, flexible working, vocational rehabilitation and disaster preparedness.

Disability rights during the pandemic. A global report on findings of the COVID-19 Disability Rights Monitor

BRENNAN, Ciara Siobhan
October 2020

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This report presents the findings from a rapid global survey of persons with disabilities and other stakeholders which took place between April and August 2020. The organisations behind the study seek to “catalyse urgent action in the weeks and months to come,” as transmission rates of COVID-19 continue to rise in many countries and persons with disabilities are again subjected to restrictions which have already had severe consequences.

The report analyses over 2,100 responses to the survey from 134 countries around the world. The vast majority of responses were from individuals with disabilities and their family members. Within the questionnaire responses respondents provided more than 3,000 written testimonies documenting the experiences of persons with disabilities and their family members during the pandemic. The qualitative and quantitative data provide in-depth, comprehensive insights into the experiences of persons with disabilities and the consequences of government actions or inactions on the rights of persons with disabilities.

The report is organised around four themes which emerged during the process of analysing responses received to the survey. These themes are:

1. Inadequate measures to protect persons with disabilities in institutions

2. Significant and fatal breakdown of community supports

3. Disproportionate impact on underrepresented groups of persons with disabilities

4. Denial of access to healthcare

 

A webinar was held to mark the launch of the report

Lymphatic filariasis in Uganda: Knowledge, attitudes and practices

DIXON, Ruth
October 2020

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This knowledge, attitudes and practices (KAP) study aimed to assess the KAP relating to lymphatic filariasis (LF) morbidity and morbidity management (MMDP) in Uganda in order to plan large-scale interventions.

The objectives for the study were to obtain baseline data on KAP regarding LF morbidity and its management; to establish current efforts in specific districts/regions to address morbidity and its management; and to assess the anticipated acceptance of interventions and identify potential barriers. The study used mixed methods including a quantitative household survey and qualitative key informant interviews and focus group discussions with people living with chronic conditions related to LF.

Barriers to accessing primary healthcare services for people with disabilities in low and middle-income countries, a Meta-synthesis of qualitative studies

HASHEMI, Goli
WICKENDEN, Mary
BRIGHT, Tess
KUPER, Hannah
2020

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Background: Access to healthcare contributes to the attainment of health and is a fundamental human right. People with disabilities are believed to experience widespread poor access to healthcare services, due to inaccessible environments and discriminatory belief systems and attitudes. Qualitative data on these bar- riers has not previously been systematically reviewed. A meta-synthesis was undertaken of qualitative studies exploring the barriers to primary healthcare services experienced by people with disabilities in low- and mid- dle-income countries.

 

Methods: Six electronic databases were searched for relevant studies from 2000 to 2019. Forty-one eli- gible studies were identified.

 

Results: Findings suggest that the people with disabilities’ choice to seek healthcare services or not, as well as the quality of intervention provided by primary healthcare providers, are influenced by three types of barriers: cultural beliefs or attitudinal barriers, informational barriers, and practical or logis- tical barriers.

 

Conclusion: In order to achieve full health coverage at acceptable quality for people with disabilities, it is necessary not only to consider the different barriers, but also their combined effect on people with dis- abilities and their households. It is only then that more nuanced and effective interventions to improve access to primary healthcare, systematically addressing barriers, can be designed and implemented.

COVID-19, Amplifying Voices: Our Lives, Our Say: Learning from COVID-19 through the experiences of blind and partially sighted persons across the world

ZAYED, Yana
et al
August 2020

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The World Blind Union (WBU) conducted a study to examine the extent to which COVID-19 pandemic has exposed some deep structural inequalities in society. Data gathered from the study is evidencing that persons with disabilities, older persons, and persons from lower socioeconomic status backgrounds are among those hardest hit by the pandemic. While this report puts a spotlight on the voices of blind and partially sighted persons, many of the experiences shared strongly resonate with numerous other studies that are also highlighting how marginalised groups have been affected by this crisis. Through this report, WBU hopes to raise awareness on the specifics of what those challenges have meant in reality for its constituents, as well as shed light on what have been effective resilience strategies for them. The study was made possible with the support of CBM Global

To understand the situation of our constituents, the World Blind Union (WBU) conducted a global survey in collaboration with key stakeholders. In April 2020, the WBU launched an open online survey for seven weeks in Spanish, French and English, seeking information from blind and partially sighted persons on how COVID-19 was impacting their day to day life. 853 people participated in the survey. The respondents expressed in their own words how their lives had been and continue to be impacted by the coronavirus pandemic. This report is a compilation of those voices. It depicts the ways in which COVID-19 response measures taken by state and non-state actors have created additional barriers and challenges for blind and partially sighted people. It also includes powerful testimonies on how people have shown resilience in the face of adversity.

 

 

Children with disabilities and COVID-19

UNICEF
July 2020

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This guidance has been produced for UNICEF’s East Asia and the Pacific Regional Office and UNICEF Australia. This document is intended for frontline workers, including UNICEF partners, health personnel, social workers, teachers, help line staff and community volunteers engaged in the COVID-19 response. It is recommended that this document is read in conjunction with the Minimum Care Package, CBM’s Disability Inclusion in COVID-19 Preparedness and Response guidance note, UNICEF’s EAPR Child Protection Emergency Preparedness and Response to COVID-19 and the global Technical Note: Protection of Children during the Coronavirus Pandemic

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