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Experiences of Reciprocal Caring Among AdultsWith an Intellectual Disability Caring for an OlderFamily Member

TRUESDALE, Maria
TAGGART, Laurence
RYAN, Assumpta
McCONKEY, Roy
2021

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Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill-health. This has resulted in a shift in the parameters of the rela-tionship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as “reciprocity” or “mutual support.” Limited information exists about these “hidden carers” and what services are available to support them.

 

Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.


Method: A qualitative methodology was employed using semi-structured interviews. Nine participants with mild-to-moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.

 

Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing familymember; support; impact of caregiving and future planning.

 

Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of “in-house” support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study

VON GRANITZ, Heléne
SONNANDER, Karin
REINE, Ieva
WINBLAD, Ulrika
2021

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Purpose: To explore whether the personal assistance (PA) activities provided by the Swedish Act concern- ing Support and Service for Persons with Certain Functional Impairment in 2010 and 2015 promote par- ticipation in society according to Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD).

 

Methods: Register data and data from two questionnaires were used (N1⁄42565). Descriptive statistics and chi-square (McNemar’s test) were used to describe the basic features of the data. Mixed binominal logistic regression was used to examine correlation between gender and hours of PA between 2010 and 2015.

 

Results: Despite an increase in the number of PA hours, more care activities and a reduction of most PA activities representing an active life were found. The result was especially evident for women, older peo- ple, and for a particular person category.


Conclusions: The results offer evidence of a shift to a medical model and indicate a risk of social exclu- sion due to fewer activities representing an active life. An increase on average of 16h of PA over the period studied does not guarantee access to an active life and may indicate a marginal utility. The noted decline of PA for participation in society enhances the importance of monitoring content aspects to fulfil Article 19 of the UNCRPD.

Psychosocial Consequences of COVID-19 on Persons with Visual Impairments

NAYAR, Mahima
JUVVA, Srilatha
LAKSHMAN, Chitra
2021

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The ongoing pandemic situation has disrupted lives globally. These disruptions are embodied in gender, social location, ethnicity and in the body. Public health facilities, accessibility of urban infrastructure, support services for persons with disability, educational accessibility in cities prior to the pandemic have influenced the manner in which disabled people are able to adapt to the current situation. This paper presents the experiences of young people living with visual impairments who reside in an urban low-income community in India. It explores the unique challenges such as the further reduction in accessibility to health and educational facilities that they are facing and the manner in which their carefully structured everyday lives have changed. The narratives also describe the manner in which they are coping with the public health disaster in addition to preparing for the new ‘norms’ that people living with visual impairments are required to navigate as an outcome of the pandemic. The paper gives voice to their needs and requirements in this situation, and in turn, aims to inform policy responses through first person accounts. 

Impact of Visual Impairment and Correction on Vision-Related Quality of Life: Comparing People with Different Levels of Visual Acuity in Indonesia

WIDAGDO, T M M
RAPPUN, Y
GANDRUNG, A V
WIBOWO, E
2021

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Purpose: This study assessed the extent to which visual impairment impacts on vision-related quality of life in Indonesia, by comparing four groups of people: those with 1) normal vision, 2) corrected visual impairment, 3) uncorrected visual impairment, and 4) blindness.

 

Method: Purposive sampling was used. There were 162 respondents, between 21 and 86 years of age. Participants with normal vision and blindness were community-dwellers in Yogyakarta, Indonesia. Those with corrected and uncorrected visual impairment were recruited from an eye clinic. This cross- sectional study used NEI VFQ-25 to assess vision-related quality of life. The total scores and 11 NEI VFQ-25 subscales scores of four respondent groups were analysed using ANOVA, followed by post-hoc analyses to reveal between group differences.

 

Results: There was a significant difference in the NEI VFQ-25 total scores among the four respondent groups. Respondents with normal vision had the highest score and those with blindness had the lowest. There were also significant differences among the four groups for the 11 subscales. Post-hoc analyses revealed no significant difference between respondents with normal vision and corrected visual impairment in the total and 9 NEI VFQ-25 subscales. Respondents with uncorrected visual impairment and blindness had significantly lower vision- related quality of life compared to those with normal vision or corrected visual impairment in the total and 5 NEI VFQ-25 subscales, indicating that visual impairment decreases vision-related quality of life.

 

Conclusion: Visual impairment has a detrimental impact on a person’s vision- related quality of life. The negative impact of visual impairment can be minimised by correction. Failure to correct visual impairment leads to significantly lowervision-related quality of life.

Independent Living Survey

EUROPEAN NETWORK ON INDEPENDENT LIVING (ENIL)
December 2020

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The summary report of the first results of ENIL’s Independent Living Survey. The aim of the online survey was to collect general information about access to Independent Living of disabled people across Europe, and detailed information about Personal Assistance schemes or systems.

Unheard children. Championing deaf children’s rights to family, community, education and independence in developing countries

DEAF CHILDREN WORLDWIDE
November 2020

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This report highlights the specific barriers facing deaf children and young people and demonstrates a number of smallscale approaches and initiatives that have succeeded in breaking down some of these barriers.

Topics are:

  • Language and communication. Early diagnosis and support (example from Bangladesh). Effective and affordable hearing technology. Communication choices. What is sign language? Tanzanian Sign Language – the need for more interpreters
  • Families. Early diagnosis and support. Upskilling parents and primary caregivers. Power to the parents (example from Uganda). Catalyst for change (example from India). 
  • Communities. Deaf role models (example from Bangladesh). Challenging the public and professionals. Educating the police force (example from India). Sharing knowledge across organisations
  • Education. Intensive communication. Extra help in the classroom (example from Kenya). Making secondary education accessible. Developing sign language skills. Inclusive further and higher education
  • Independence. Listening to deaf young people. Involving deaf young people in research. Support to make informed choices. Challenging perceptions in the workplace (example from Kenya)

 

 

Self-reported barriers to activities of daily living of persons with disabilities living in IDP sites in northwest Syria

UNHCR INCLUSION TECHNICAL WORKING GROUP, SYRIA PROTECTION CLUSTER (TURKEY)
November 2020

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This brief aims to describe the lived experience of persons with disabilities in northwest Syria and highlight needs and key barriers to engagement in personal, domestic and community-based activities of daily living, which includes access to and engagement with humanitarian organisations. The analysis of these difficulties forms the basis of key pragmatic recommendations for humanitarian actors

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

Measure It Super Simple (MISS) activity tracker: (re)design of a user-friendly interface and evaluation of experiences in daily life

UMMELS, Darcy
BRAUN, Susy
STEVENS, An
BEEKMAN, Emmylou
BEURSKENS, Anna
2020

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Purpose

The purposes of this study were, first, to (re)design the user-interface of the activity tracker known as the MOX with the help of input from elderly individuals living independently and, second, to assess the use of and experiences with the adapted Measure It Super Simple (MISS) activity tracker in daily life.

 

Methods

The double diamond method, which was used to (re)design the user-interface, consists of four phases: discover, define, develop, and deliver. As a departure point, this study used a list of general design requirements that facilitate the development of technology for the elderly. Usage and experiences were assessed through interviews after elderly individuals had used the activity tracker for 2 weeks.

 

Results

In co-creation with thirty-five elderly individuals (65 to 89-years-old) the design, feedback system, and application were further developed into a user-friendly interface: the Measure It Super Simple (MISS) activity. Twenty-eight elderly individuals (65 to 78-years-old) reported that they found the MISS activity easy to use, needed limited help when setting the tracker up, and required limited assistance when using it during their daily lives.

 

Conclusions

This study offers a generic structured methodology and a list of design requirements to adapt the interface of an existing activity tracker consistent with the skills and needs of the elderly. The MISS activity seemed to be successfully (re)designed, like the elderly who participated in this pilot study reported that anyone should be able to use it.

Novel lateral transfer assist robot decreases the difficulty of transfer in post-stroke hemiparesis patients: a pilot study

KOYAMA, Soichiro
TANABE, Shigeo
OTAKA, Yohei
KATO, Tomoya
FURUZAWA, Shotaro
TATEMOTO, Tsuyoshi
KUMAZAWA, Nobuhiro
YOSHIMUTA, Hiroshi
TORII, Katsuhiko
TSUKADA, Shingo
SAITOH, Eiichi
et al
2020

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Purpose

The purpose of this study was to clarify whether the novel lateral transfer assist robot facilitates easier transfers compared with a wheelchair in post-stroke hemiparesis patients.

 

Methods

This cross-sectional study enrolled 20 post-stroke hemiparesis patients, and the task difficulty of transfers was compared between a wheelchair and lateral transfer assist robot. All participants were asked to transfer from either wheelchair or lateral transfer assist robot to a platform table and back. The primary outcome was the transfer score of the Functional Independence Measure. The secondary outcome was the time required for transfer.

 

Results

The transfer score of the Functional Independence Measure was significantly higher with lateral transfer assist robot than with wheelchair (p < .001). The transfer times from these devices to a platform table and back showed no significant differences (to device from platform table: 7.8 s, lateral transfer assist robot vs 7.6 s, wheelchair, p > .05: device to platform table: 7.1 s, lateral transfer assist robot vs 8.0 s, wheelchair, p > .05).

 

Conclusions

Transfer with a lateral transfer assist robot is easier than with wheelchair and facilitates independence in post-stroke hemiparesis patients.

Covid-19 tip sheets & book of flip charts

ENABLEMENT
August 2020

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In light of the Covid-19 pandemic, Enablement developed tip sheets on four main topics for Light for the World:


- Eating and drinking
- Epilepsy, Nodding Syndrome and medication
- Active lifestyle
- Communication


These are meant to support those working with and/or caring for children and adults with disabilities. The tip sheets include visuals and some supporting text.

The book of flip charts carries the same content as the tip sheets, with visuals on one side for the caregivers of people with disabilities to see, and slightly more elaborate text on the other page for the fieldworker.

The value of powered mobility scooters from the perspective of elderly spouses of the users – a qualitative study

FREDRIKSSON, Carin
PETTERSSON, Ingvor
HAGBERG, Lars
HERMANSSON, Liselotte
2020

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Purpose

To explore spouses’ experiences of the value of mobility scooters prescribed to their partner.

 

Material and Methods

A descriptive design with a qualitative approach was used. Thirteen spouses (11 females) aged 65–86 years participated. Semi-structured interviews were conducted when the spouse’s partner had had the mobility scooter for 4–6 months. The interviews were analysed using qualitative content analysis.

 

Results

The interviews showed primarily that the spouses experienced that their everyday lives and life situation had improved since their partner had received a mobility scooter. They reported that they could engage in activities of their own choice to a greater extent. The prescription of a mobility scooter to their partner had also yielded a sense of freedom related to shared activities. On the other hand, the spouses described some of the scooter’s limitations. Three categories emerged: a sense of freedom related to the spouse’s own activities, a sense of freedom related to shared activities and a somewhat restricted freedom.

 

Conclusion

Prescription of a powered mobility scooter was of value to the users’ spouses because it facilitated independent and shared activities and participation in the community. The value was mainly expressed as a sense of freedom when doing things on their own or together with their partner. Spouses are key persons in the rehabilitation of people with mobility restrictions. Their views on the assistive device may influence the rehabilitation process. Knowledge of spouses’ experiences is thus crucial, as this may influence the future rehabilitation outcome.

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.

 

 

Meeting basic needs for women and girls with disabilities during COVID-19

WOMEN ENABLED INTERNATIONAL
UN WOMEN
July 2020

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In March and April 2020, Women Enabled International (WEI) conducted an online qualitative survey of issues impacting women, girls, non-binary, trans, and gender non-conforming (TGNC) persons with disabilities, which received 100 responses from around the world. These individuals identified that COVID-19 had had a significant impact on their ability to meet basic needs, achieve an adequate standard of living, and live independently, including because of issues related to employment and income, access to support services and assistive devices, access to public transportation, and access to assistance from friends, family, and the public. This policy brief will discuss some of the findings from this survey to illustrate how the pandemic worsens existing realities of marginalised communities and will provide recommendation to stakeholders, in particular UN agencies and UN Country Teams and their partners, on how to mitigate adverse effects of pre-existing inequalities faced by women, girls and TGNC persons with disabilities, including on how to engage with networks and organizations as active agents in the process of ‘building back.’

Disability Royal Commission: WWDA’s Response to Group Homes Issues Paper

SANDS, Therese
July 2020

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In 2020 the Disability Royal Commission released an issues paper on group homes. The issues paper asked 10 questions based on some of the key issues and barriers experienced by people with disability living in Group Homes.

This is Women With Disabilities Australia (WWDA) response to the issues paper which highlights key recommendations to improve the lives and experiences of people with disability living in group homes. The recommendations stem from the following key areas:

  • Living independently and being in the community
  • Intersectionality
  • Ableism, segregation and violence
  • Exposing and responding to violence, abuse, neglect and exploitation

Understanding paid support relationships: possibilities for mutual recognition between young people with disability and their support workers

ROBINSON, Sally
GRAHAM, Anne
FISHER, Karen R
NEALE, Kate
DAVY, Laura
JOHNSON, Kelley
HALL, Ed
2020

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The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing sup- port understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and well- being of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth’s recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these con- nected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an inter- national context characterised by personalisation of support, resource constraints and inquiries into poor practice.

The outcomes of individualized housing for people with disability and complex needs: a scoping review

OLIVER, Stacey
Gosden-Kaye, Emily Z
WINKLER, Dianne
DOUGLAS, Jacinta M
2020

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PURPOSE: Worldwide, disability systems are moving away from congregated living towards individualized models of housing. Individualized housing aims to provide choice regarding living arrangements and the option to live in houses in the community, just like people without disability. The purpose of this scoping review was to determine what is currently known about outcomes associated with individualized housing for adults with disability and complex needs.

 

METHODS: Five databases were systematically searched to find studies that reported on outcomes associated with individualized housing for adults (aged 18–65 years) with disability and complex needs.

 

RESULTS: Individualized housing was positively associated with human rights (i.e., self-determination, choice and autonomy) outcomes. Individualized housing also demonstrated favourable outcomes in regards to domestic tasks, social relationships, challenging behaviour and mood. However, outcomes regarding adaptive behaviour, self-care, scheduled activities and safety showed no difference, or less favourable results, when compared to group homes.

 

CONCLUSIONS: The literature indicates that individualized housing has favourable outcomes for people with disability, particularly for human rights. Quality formal and informal supports were identified as important for positive outcomes in individualized housing. Future research should use clear and consistent terminology and longitudinal research methods to investigate individualized housing outcomes for people with disability.

“Better to Make Yourself Invisible” Family violence against people with disabilities in Mexico

RIOS-ESPINOSA, Carlos
June 2020

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People with disabilities in Mexico can face severe abuse and neglect by their families with little protection or support from the government. This report documents how the lack of policies to support independent living can increase the risk of family violence and abuse for people with disabilities. It also documents the barriers people with disabilities face in accessing protection from abuse and justice on an equal basis with others, and documents serious concerns regarding implementation of procedural accommodations to ensure that people with disabilities can participate fully and equally in the justice system.

 

Based on research in 2018 and 2019, this report documents violence committed by family members against people with disabilities in four Mexican states: Oaxaca, Jalisco, Nuevo León, and Mexico City.  Interviews were carried out with 24 women and 14 men with disabilities. 

 

Significant challenges when introducing care robots in Swedish elder care

JOHANSSON-PAJALA, Rose-Marie
GUSTAFSSON, Christine
2020

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Introduction: 

Care robots are machines, operating partly or completely autonomously, that are intended to assist older people and their caregivers. Care robots are seen as one part of the solution to the aging population, allowing fewer professional caregivers to provide the necessary assistance and care. Despite the potential benefits, the dissemination of care robots, and welfare technology in general, is limited in Swedish elder care.

 

Purpose: 

To explore the challenges of introducing welfare technology, particularly care robots, in elder care.

 

Materials and methods:

 Twenty-one individual interviews with key actors at the societal level, analysed by thematic analysis.

 

Results: 

The challenges, from the societal actors’ perspectives, were related to; the beliefs in technology, attitudes, ethics, collaboration, and the need for knowledge and skills regarding care robots (individual and group challenges). Challenges of a national character were: national governance, infrastructure, laws and regulations, economics, and procurement (systemic and societal challenges). In addition, the necessary preconditions for successful introduction were revealed as: the utility of the technology, implementation, evaluation and safety, security, and integrity (preconditional challenges).

 

Conclusions: 

The introduction of care robots in elder care services seems to be more challenging than that of welfare technology in general, given the context and prevailing attitudes and preconceptions about robotics. Significant challenges need to be managed, at all levels of the society, before care robots can become an integral part of daily care and assist older people and their caregivers in activities and rehabilitation.

Considering the disability related extra costs in social protection

MONT, Daniel
COTE, Alexandre
et al
June 2020

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This paper tackles several critical elements required for social protection systems and programs to adequately consider disability related extra costs. In the first part, it will explain the diversity of disability related costs. The second part will present current methods to assess and measure disability related costs and the issues they raise. The last part will present how social protection systems can take into account and tackle those different disability related costs.

 

This background paper is a part of a series produced in the frame of a project led by ILO and UNICEF in close collaboration with the International Disability Alliance (IDA) and supported by the UN Partnership on the Rights of Persons with Disabilities. It has been co-financed by Leonard Cheshire in the frame of the DFID funded I2I project. The UNPRPD project aims at developing practical guidance for countries, development agencies and DPOs for reforms towards inclusive social protection systems fostering empowerment of persons with disabilities across the life cycle. The papers summarize key issues and present policy recommendations and proposal to build inclusive social protection systems supporting empowerment and participation of persons with disabilities across the life cycle

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