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The Experiences of Carers of Adults With Intellectual Disabilities During the First COVID-19 Lockdown Period

PATEL, Varsha
PEREZ-OLIVAS, Gisela
KROESE, Biza Stenfert
ROGERS, Gemma
ROSE, John
MURPHY, Glynis
COOPER, Vivien
LANGDON, Peter E
HILES, Steve
CLIFFORD, Clair
WILLNER, Paul
2021

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Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers.


Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the rst 2020 lockdown period.


Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis.


Results: Four main themes were identied: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being.


Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These Findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

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.

The impact of COVID-19 measures on children with disabilities and their families in Uganda

MBAZZI, Femke Bannink
NALUGYA, Ruth
KAWESA, Elizabeth
NIMUSIIMA, Claire
KING, Rachel
VAN HOVE, Geert
SEELEY, Janet
2021

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To understand the impact of the COVID-19 public health response on families of children with disabilities in Central Uganda we conducted phone interviews with parents and children during the first 5 months of the outbreak (March - July 2020). Most parents and children were well informed about COVID-19 and were keen to adhere to government prevention measures. The majority said lock-down measures had a negative effect on their mental and physical health, social life, finances, education and food security. Access to medical services and medication for chronic illness had been limited or absent due to restrictions in travel, some facilities restricting access, and limited financial resources. The majority of parents reported loss of work which resulted in difficulties in finding enough food and paying rent. Parents worried about children missing education and friends. We suggest greater attention to children with disabilities and their families when implementing mitigating and long-term responses.

Covid-19: Violence risk and loss of income among persons with disabilities

ADD International
October 2020

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This report presents findings from telephone interviews with 87 members from Disabled People’s Organisation (DPO) partners and 10 DPO/Self-Help Group (SHG) leaders from organisations with 1,998 members in 10 districts across 7 provinces of Cambodia, to ask about the impact of the COVID-19 pandemic on persons with disabilities.

 

Three patterns emerge from these interviews: there is a pattern of compounding vulnerability to violence; a pattern of significant livelihood loss that is felt differently by disability type and gender; and a link between livelihood loss and pronounced increase in economic and psychological violence against women and girls with disabilities.

 

Evidence from these interviews suggests that, during the COVID-19 pandemic, some women with disabilities are at increased risk of violence and suffering a dramatic loss in household earnings. Reported violence risk increase is mostly psychological and economic, higher among older respondents and most pronounced among those who already experienced medium to high risk of violence before COVID-19.

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

The hidden impact of COVID-19 on children and families with disabilities.

ORSANDER, Martina
MENDOZA, Pamela
BURGESS, Melissa
ARLINI, Silvia Mila
October 2020

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This report is one in a series presenting findings from the Global COVID-19 Research Study on The hidden impact of COVID-19 on children. The results presented here focus on the impacts of COVID-19 on children and parents/caregivers with disabilities and their families, drawing on data from our representative sample of 17,565 parents/ caregivers and 8,069 children in our programme participants group. Topics covered include impacts of COVID-19 on household economy, health and nutrition, child education and learning, child rights, relationships between children and their parents/caregivers, psychosocial wellbeing, family separation and household violence.

The research was implemented in 46 countries in June and July 2020 and resulted in the largest and most comprehensive survey of children and families during the COVID-19 crisis to date, with 31,683 parents/ caregivers and 13,477 children aged 11–17 participating in the research. The research sampled three distinct population groups:

1. Save the Children programme participants;

2. Specific population groups of interest to Save the Children;

3. The general public.

A representative sample of Save the Children programme participants with telephone numbers or email addresses was obtained in 37 countries.

 

A GLOBAL RESEARCH SERIES

Disability Debrief: an international update on persons with disabilities in the COVID-19 crisis

TORRES FREMLIN, Peter
September 2020

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This is an update on disability news around the world relating to the COVID-19 crisis, from late April to the end of September 2020. It's a snapshot of news, statistics, policy, and experiences of persons with disabilities around the world. Links are prvided to the original resources.

 

Topics covered include:

  • What has happended so far: Data on COVID-19 and mortality; Care homes and institutional settings; Impact on persons with disabilities; Gathering data and the gaps; Experiences of Persons with Disabilities
  • Disability in response; International response: Collections of resources; Country and Regional Approaches; Resources by disability
  • Inclusion in protection and interim measures; Masks / face coverings; Physical distancing and isolation; Lockdown and confinement; Institutions and long-term care facilities; Coming out of lockdown; Social protection and services
  • Health, treatment and recovery
  • Across society and sectors: Care; Culture and sport; Digital accessibility and inclusion; Education and young people; Elections and politics; Humanitarian and Refugees; International cooperation; Justice; Mental Health; Transportation and travel; Violence; Water, Sanitation and Hygiene (WASH); Work and skills
  • Rebuilding / what happens next; New perspectives and recovery; Social protection; Work and employment

 

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.

Pivoting to inclusion : Leveraging lessons from the COVID-19 crisis for learners with disabilities

McCLAIN-NHALPO,Charlotte Vuyiswa
KULBIR SINGH,Ruchi
MARTIN,Anna Hill
et al
August 2020

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As governments respond to the Coronavirus 2019 (COVID-19) pandemic, the global community must ensure that persons with disabilities are included. This will require disability inclusion to be considered in all interconnected sectors; education, health, social protection, and inclusion from the planning stage all the way through to delivery and recovery efforts that are inclusive of all and are sufficiently differentiated to meet the specific needs of children with disabilities. The issues paper focuses on the following objectives: (1) addressing education, social needs, barriers, and issues for learners with disabilities at a global, regional, and country-level during the COVID-19 crisis; and (2) recommending practices for education and social inclusion, and reasonable accommodations utilizing the twin track approach and principles of universal design for learning.

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.

 

 

“Aid out of reach”: untold stories from people with disabilities

Light for the world
July 2020

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Humanitarian organisations can learn a lot from what happened during the Cyclone Idai aid response. The cyclone and its impact made global headlines. The NGO community reacted fast. More than 400 organisations and 1,000 aid workers were rapidly deployed to the affected areas of Mozambique. But what happened next remains untold.

Their stories, which form the basis of our recommendations, can help key actors improve their responses to other crises, including COVID-19.

COVID-19 in humanitarian contexts: no excuses to leave persons with disabilities behind! Evidence from HI's operations in humanitarian settings

HUMANITY & INCLUSION (HI)
June 2020

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This collection and review of evidence aims to illustrate how the COVID-19 crisis triggers disproportionate risks and barriers for men, women, boys and girls with disabilities living in humanitarian settings. It highlights recommendations for humanitarian actors, to enhance inclusive action, aligned with existing guidance and learnings on disability inclusion. It is based on evidence, including testimonies, collected by HI programs in 19 countries of intervention. Special efforts were made to reflect the voices of persons with different types of disabilities, genders and ages, residing in different geographical areas and living circumstances, including refugee and internally displaced persons’ settlements and host communities.

 

Evidence has been collected through primary data collection among HI teams and partners, working in countries impacted by the COVID-19 pandemic in April/May 2020. Data was extracted from assessments conducted by HI and partners in Bangladesh, Egypt, Haïti, Indonesia, Philippines, Jordan, Lebanon, Somaliland and Togo. Testimonies from affected communities, staff and partners were collected in Kenya, Myanmar, Pakistan, Palestine, Philippines, Somaliland, South Sudan, Rwanda, Thailand, Uganda and Yemen.

 

COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State

LANDES, Scott D.
TURK, Margaret A.
FORMICA, Margaret K.
McDONALD, Katherine E.
STEVENS, J. Dalton
June 2020

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In order to investigate whether people with intellectual and developmental disabilities (IDD) are at higher risk of severe outcomes from COVID-19, the COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State were compared. Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living inresidential group homes and New York State through May 28, 2020

 

Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2020.100969

 

Disability Inclusion Helpdesk Report No: 38 : Disability and Child Marriage

MEANEY-DAVIS, Jessie
LEE, Harri
ANDRAE, Karen
May 2020

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Summaries on the findings from the following queries:

Is there evidence that suggests children with disabilities are more/less vulnerable to child marriage than children without disabilities? If yes, what are the driving factors for this?

What are some of the evidence-based interventions we could think about to ensure that children with disabilities affected by child marriage are not left behind? How can we better mainstream disability inclusion in the programme? 

Inclusive Governance sector guiding note on COVID-19

April 2020

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Humanity & Inclusion inclusive governance approach fits in with the governments (national, regional and local) context, governments are in charge of the response to the crisis. In these types of contexts, humanitarian actors do not have the leadership and mandate to make decisions. Governments are creating policies in response to Covid-19 and must include persons with disabilities as equal citizens within their response frameworks. 

Key messages :

  • DO NO HARM: Protect yourself and your family, staff, partners and of course the beneficiaries.
  • Work closely with other stakeholders and ensure coordination in the response is happening at all levels
  • Follow HI’s guidelines and the guidance from the national and local authorities regarding COVID 19 at all times. 

English pages 1-7 and français ci-dessous pages 7-13.

Stop Coronavirus: Keep clean

MENCAP
April 2020

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Why we need to keep our hands and things we touch clean in order to stop the spread of the Coronavirus pandemic and how to go about it.

People with disabilities in the face of COVID-19 in the Americas and the Caribbean

UNITED NATIONS OFFICE FOR DISASTER RISK REDUCTION (UNDRR)
April 2020

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The United Nations Office for Disaster Risk Reduction (UNDRR), Regional Office for the Americas and the Caribbean, ONG Inclusiva and the Latin America and the Caribbean Network for Disability Inclusive Disaster Risk Management (LAC DiDRR Network) organized a webinar on Thursday, 23 April that focused on people with disabilities in the face of COVID-19. Reflections surrounding the inclusion and active participation of people with disabilities within all disaster risk management and disaster risk reduction processes were among the issues analysed through this seminar. The results of a survey aimed at gaining a greater understanding of the experience of people with disabilities in the face of COVID-19 that was carried out by ONG Inclusiva were also presented.

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