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Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial

BEENTJES, Kim M
NEAL, David P
KERKHOF, Yvonne J F
BROEDER, Caroline
MOERIDJAN, Zaïnah D J
ETTEMA, Teake P
PELKMANS, Wiesje
MULLER, Majon M
GRAFF, Maud J L
DRÖES, Rose-Marie
2020

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Purpose

FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.

 

Materials and methods

An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.

 

Results and conclusions

No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.

Covid-19 Income loss, risk of violence and the response of persons with disabilities and their representative organisations in Uganda

ADD International
November 2020

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Findings from this report show evidence that some persons with disabilities face multiple types of jeopardy during Covid-19: they are at an increased risk of violence and are suffering a dramatic loss in household earnings. They are also taking action: many plan to adapt their livelihood and are mobilising resources for their communities. Persons with disabilities ask government and NGOs to do more and to be more inclusive in their response to the crisis.

● Three of four respondents report increased risk of violence since the pandemic began. 77% of women and 80% of men report an increase in economic, physical, psychological and/or sexual violence after Covid-19.

● One in three women respondents report experiencing an increased risk of physical and/or sexual violence.

● Livelihood support could reduce violence risk. Three in four (76%) of respondents say livelihood support, such as start up capital for small business, would be very or extremely useful to them in order to reduce their risk of experiencing violence during Covid-19.

● Respondents report losing 64% of their monthly household income since the outbreak. After adjusting for purchase power parity, this is the equivalent of falling from 181 GBP to 65 GBP per month.

● Covid-19 support is unequal and insufficient for many. Where support has been distributed, one in two report that they do not receive the same protection support (ie PPE) as others; one in four report that they do not receive the same Covid-19 survival support (ie food); one in three report they do not receive the same Covid-19 information; and one in three say that support does not meet need.

● Most respondents will try something new. 59% indicate that they will start something new to make ends meet if the situation continues.

● OPDs are obtaining food support through lobbying, providing vital psychosocial support and information.

● Some OPDs are not able to respond because they are capacity-constrained.

● Government and NGOs can do more.


From these interviews and findings, some recommendations emerge for government and NGOs:

● Support livelihood to reduce violence risk and increase survival strategies.

● Increase access to capital.

● Meaningfully engage persons with disabilities and their respective organisations in response planning and implementation.

● Ensure distribution of support reaches persons with disabilities, more specifically the underrepresented groups.

● Change attitudes toward and increase knowledge about persons with disabilities.

Rights of persons with disabilities : note / by the Secretary-General

DEVANDAS-AGUILAR, Catalina
November 2020

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The Special Rapporteur on the rights of persons with disabilities, Catalina Devandas-Aguilar, examines the importance of international cooperation to support the implementation of the rights of persons with disabilities and provides guidance to States on how to ensure that international cooperation is inclusive of and accessible to persons with disabilities.

 

In preparing the report, the Special Rapporteur analysed 40 responses to a questionnaire sent to Member States, national human rights institutions and civil society organizations, including organizations of persons with disabilities.  She also commissioned a study to assess the extent to which international cooperation was inclusive of and accessible to persons with disabilities, which included surveys and interviews with 26 bilateral and multilateral agencies and 10 private donors

Do both ‘get it right’? Inclusion of newly arrived migrant students in Swedish primary schools

TAJIC, Denis
BUNAR, Nihad
2020

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The aim of this article is to advance knowledge on how Swedish primary schools organise education and what strategies they deploy to ensure inclusion and attainment of newly arrived migrant students. The article is based on semi-structured interviews with 30 teachers and school administrators, and one-year of fieldwork undertaken in two multicultural urban primary schools in the Stockholm region. One of the schools initially places students in separate classes, while the other one places them directly into mainstream classes. Both are evoking inclusion and attainment as a reason for using their respective models. As such, do both ‘get it right’? Using inclusion as the theoretical and conceptual framework this article addresses the broader question: How is the meaning of inclusion constructed in the processes of its practical implementation in these two schools? The results show the ambitious tale of inclusion in both schools was, in the process of the construction of its meaning and implementation, reduced to some of its aspects. Teachers and school administrators are allowed to include or leave out of their model whatever they deem necessary, obsolete, expensive or unrealistic and still fitting under the umbrella of inclusion. Sometimes it works, sometimes it does not, and both schools ‘get it right’ and ‘wrong’ in some aspects.

Teaching for inclusion – a review of research on the cooperation between regular teachers and special educators in the work with students in need of special support

PAULSRUD, David
NILHOLM, Claes
2020

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This article presents a review of qualitative research on interprofessional cooperation between regular teachers and special educators published from 2005 to 2019. The aim of the review was to gain knowledge about how different forms of cooperation take shape and about factors at multiple levels that facilitate or constrain cooperation as a means of achieving inclusion. In total, 25 studies were selected. The results are discussed in relation to Thomas Skrtic’s theory of bureaucracies within the school organisation in order to compare and analyse different forms of interprofessional cooperation and schools’ organisations of special educational work. Cooperative teaching, special educational consultations and mixed forms of cooperation were found to entail different benefits and challenges related to communication and the cooperating actors’ roles. Facilitating factors included personal chemistry, an equal distribution of power and responsibilities and support from the school management through provision of professional development and adequate planning time. In several studies, a flexible cooperation was argued to be hindered by curricular constraints and standardised testing. Education policy is therefore emphasised in this review as important for understanding the conditions under which school staff are responsible for inclusion.

Leaving no one behind in education - A focus on children with disabilities

ADEREMI-IGE, Toyin
KAPUSCINKI DEVELOPMENT LECTURES
November 2020

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This lecture by Dr. Toyin Aderemi-Ige shed light on the educational situation of children with disabilities in low and middle income countries, highlighting how the interaction of multiple discriminatory factors (like gender and disability) results in increased exclusion. The 2030 Agenda sets the commitment to “leave no one behind” and its Sustainable Development Goal 4 calls to ensure inclusive and quality education for all. However, 10 years away from the 2030 deadline, children with disabilities are still significantly excluded from education and, consequently, from life’s opportunities.

 

The event was moderated by Dr. Harlan Koff of the Luxembourg University.

The lecture was followed by a panel discussion with:

  • Catherine Léglu, Vice-rector for Academic Affairs, University of Luxembourg
  • Julia McGeown, Global Education Specialist, Handicap International
  • Graham Lang, Chief of Education at Education Cannot Wait

Ensuring the right to quality inclusive education for persons with disabilities: From commitment to action

UNESCO
November 2020

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The international symposium "Ensuring the right to quality inclusive education for persons with disabilities: From commitment to action", co-organized by UNESCO, the Leonard Cheshire, and the Ministry of Education of Portugal brought together a wide range of stakeholders across the globe to discuss progress, successes achieved and challenges to ensure full participation and access to quality learning opportunities for all learners.

The symposium aims were to:

  • review persisting, as well as new challenges, due to the COVID-19 pandemic that are hindering the fulfilment of the right to inclusive education for learners with disabilities.
  • facilitate the exchange of experiences on factors influencing successful inclusive policies and practices for learners with disabilities and strengthen dialogue and cooperation amongst stakeholders at policy and practice levels.
  • explore how the inclusion of learners with disabilities in inclusive settings can be more effectively addressed by governments with regards to the commitments of Article 24 of the Convention on the Rights of Persons with Disabilities (CRPD), the CRPD General Comment 4 on article 24, and Sustainable Development 4 SDG 4, to ‘ensure inclusive and equitable quality education and promote lifelong learning opportunities for all.

The programme included:

Opening session - Accelerating efforts towards inclusive education for learners with disabilities. (Video recording: English - French - Spanish)

Session 1 - From legislation to inclusive practices: Re-designing policy frameworks, funding and monitoring arrangements across sectors for inclusive education for learners with disabilities. (Video recording: English - French - Spanish)

Session 2 - Revisiting the teaching and learning process to ensure access and participation of learners with disabilities.

Session 3 - Moving towards inclusive and safe learning environments, including by addressing violence and bullying against learners with disabilities.
 

Closing session - Rebuilding a Stronger Global Disability Inclusive Education System post COVID-19. (Video recording: English - French - Spanish)

Towards more inclusive practices: A Disability, Gender and Age Intersectional Resource

BRIGDEN, Stephanie
AHLUWALIA, Kanwal
2020

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This Disability, Gender and Age Resource aims to support staff to better understand intersectionality. An intersectional approach reminds us of the need to look deeper at the way multiple individual characteristics and societal factors intersect to compound discrimination in any given context. This resouce is split into w main sections:

 

In Section A, we introduce the concept of intersectionality, its use as a lens to understand vulnerability and the relevance of ‘context’. Section A also introduces a few critical concepts: the fact that disability, gender and age are all social constructs, the centrality of power and the need to transform unequal power relations.

 

In Section B, we provide some guidance on inclusion and bias; the need to consider the wider environment; how to work with social norms; how to understand power differently; and empowerment and participation processes.

Empowering Women with Disabilities : moving from charity to right based model

Humanity & Inclusion
2020

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HI Pakistan has recently completed a UN Women funded project ”Empowering women with disabilities (EWwD)” focusing on the social and economic empowerment of the women with disabilities. The project was implemented at Islamabad capital territory (ICT), Peshawar, Nowshera and Karachi. This project has directly benefited more than 600 women with disabilities , whereas about 30 DPOs and a number of public private departments / institutions have also been engaged and benefitted.

 

HI Pakistan collected the stories of project beneficiaries and published to highlight the impact of the project and to integrate the lesson learnt in program cycle management.

Living in Chains - Shackling of people with psychosocial disabilities worldwide

HUMAN RIGHTS WATCH
October 2020

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In order to show the scale and scope of shackling of people with real or perceived psychosocial disabilities worldwide, Human Rights Watch conducted a study of mental health legislation, relevant policies, and practices across 60 countries around the world.

This report includes research and testimonies collected by 16 Human Rights Watch researchers in their own countries. We worked closely with partner organizations to visit private homes and institutions in Afghanistan, Burkina Faso, Cambodia, Ghana, Indonesia, Kenya, Liberia, Mexico, Mozambique, Nigeria, Sierra Leone, Palestine, Russia, the selfdeclared independent state of Somaliland, South Sudan, and Yemen. Human Rights Watch researchers interviewed more than 350 people with psychosocial disabilities, including those who were shackled at the time of research or had been shackled at least once in their lives, and more than 430 family members, caregivers or staff working in institutions, psychiatrists, psychologists, nurses and other mental health professionals, faith healers, lawyers, government officials, representatives of local nongovernmental organizations (NGOs), including organizations of persons with disabilities, and disability rights advocates. The testimonies were collected between August 2018 and September 2020 through in-person and phone interviews.

Desk research and consultation with international disability experts was also undertaken

"Autism is me": an investigation of how autistic individuals make sense of autism and stigma

BOTHA, Monique
DIBB, Bridget
FROST, David M
2020

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There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N1⁄420) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understand- ings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure stra- tegically. The implications of these findings are discussed further in the article.

Action on COVID-19 Evidence on the Response of Disabled People’s Organisations during Pandemic

ADD International
October 2020

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In June 2020, ADD International conducted structured interviews with leaders from ten Disabled People’s Organisations (DPOs) which are participating in the Inclusion Works programme in three districts in Bangladesh to understand impact of and response to Covid-19 among DPOs.

 

Evidence from these interviews suggest that the economic impact of Covid-19 on persons with disabilities has been acute, and DPOs are taking critical action. DPOs are engaging with power holders to make relief, livelihood support and information accessible to persons with disabilities. DPOs are in touch with their members, but they face barriers in doing their work during this time, and more could be done to reach the most excluded.

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 temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Disability inclusion in the United Nations system - Report of the Secretary General

SECRETARY-GENERAL OF THE UNITED NATIONS
October 2020

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When launching the Strategy in June 2019, the Secretary-General stated that the United Nations would lead by example and raise its standards and performance on disability inclusion across all pillars of its work, from Headquarters to the field. The present report outlines the first steps on the path to achieving transformative and lasting change for persons with disabilities across the United Nations system

 

The report is organized into seven sections. Following the introduction, an overview of the advances made in the United Nations on disability inclusion, including the adoption of the Strategy, is provided in section II; the first year of implementation of the Strategy at the entity and country levels is reported on in section III; coronavirus disease (COVID-19) response and recovery efforts are the focus of section IV; the overarching actions for implementation of the Strategy are considered in section V; challenges and opportunities are highlighted in section VI; and the conclusion and recommendations for consideration by the General Assembly are contained in section VII. The report provides an analysis of information from 57 United Nations entities1 that reported under the Strategy ’s entity accountability framework and seven United Nations country teams that completed the accountability scorecard on disability inclusion as part of a targeted roll-out.

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