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The right to live independently and be included in the community : Addressing barriers to independent living across the globe

ANGLELOVA-MLADENOVA, Lilia
June 2017

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This reports looks at the main barriers to the realisation of disabled people’s right to live independently and be included in the community, which is set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD). They are grouped in seven broad areas: (1) misunderstanding and misuse of key terms, (2) negative attitudes and stigma, (3) lack of support for families, (4) prevalence of institutional services, (5) barriers related to community support services, (6) barriers in mainstream services and facilities, and (7) barriers, concerning other CRPD provisions, with effect on Article 19. A set of recommendations is also provided, outlining measures required to address these barriers.

The recommendations in this report – presented below - were shared with the UN Committee on the Rights of Persons with Disabilities when they were drafting the General Comment on Article 19. They can be used by governments and civil society organisations, alongside the General Comment, to identify actions needed to implement Article 191 CRPD.

 

How nursing home residents with dementia respond to the interactive art installation ‘VENSTER’: a pilot study

LUYTEN, Tom
BRAUN, Susy
JAMIN, Gaston
VAN HOOREN, Susan
DE WITTE, Luc
2017

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The goal of this study was (1) to determine whether and how nursing home residents with dementia respond to the interactive art installation in general and (2) to identify whether responses change when the content type and, therefore, the nature of the interaction with the artwork changes. The interactive art installation ‘VENSTER’ evokes responses in nursing home residents with dementia, illustrating the potential of interactive artworks in the nursing home environment. Frequently observed responses were naming, recognizing or asking questions about depicted content and how the installation worked, physically gesturing towards or tapping on the screen and tapping or singing along to the music. It seemed content matters a lot. When VENSTER is to be used in routine care, the choice of a type of content is critical to the intended experience/usage in practice. In this study, recognition seemed to trigger memory and (in most cases) a verbal reaction, while indistinctness led to asking for more information. When (initially) coached by a care provider, residents actively engaged physically with the screen. Responses differed between content types, which makes it important to further explore different types of content and content as an interface to provide meaningful experiences for nursing home residents.

Social inclusion, care and belonging of children with spina bifida: perspectives from Uganda

BANNINK, Femke
February 2017

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This study presents a situation analysis on daily functioning, caregiving, and inclusion of children with spina bifida in Uganda. 139 children with spina bifida and their families from 4 regions in Uganda participated in this study. Findings show how a complex play of cultural values, globalisation and access to biomedical care determines knowledge, and negative attitudes about, and perception of children with spina bifida


Afrika Focus, vol 30, no. 1, 2017,  pp. 130-136

DOI https://doi.org/10.21825/af.v30i1.4984

 

Improving mental health and related service environments and promoting community inclusion WHO QualityRights training to act, unite and empower for mental health (Pilot version)

FUNK, Michelle
DREW, Natalie
2017

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This document provides training and guidance on the key standards related to the physical and social environment within mental health and related services that need to be met to promote good outcomes, independent living and community inclusion. Service assessment and improvement tools are provided. Training tools (core and advanced) and guidance tools are introduced. Guidance is given for facilitators and learning objectives, resources and outcomes are provided for three topics: What makes a good environment?; The right to an adequate standard of living in mental health and related services; and Living independently and being included in your community.

As the movement for cash transfer programming advances, how can we ensure that people with disabilities are not left behind in cash transfer programming for emergencies?

REDUC, Marie
PLA CORDERO, Ricardo
et al
December 2016

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A short review of the literature was carried out which derived some specific recommendations with regards to the needs of people with disabilities in cash transfer programming in the braod categories of: appropriate beneficiary targeting and assessment; accessibility of training and sensitisation materials; physical and sensorial access to markets, vendors and distributions points (including ATM); access to activities in cash for work; accessibility of technology; access to lost goods and services

Accessibility for All: Good practices of accessibility in Asia and the Pacific to promote disability-inclusive development

AKIYAMA, Aiko
HOLLIS, Jake
KRETZSCHMAR, Tyler
December 2016

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"This publication seeks to support policymakers in promoting accessibility at a policy and practical level. It contains information on relevant global and regional mandates that support and promote disability-inclusive development and accessibility, with a view to demonstrate the multi-faceted value of focusing on disability and accessibility policies to achieve broader development goals. Readers will learn about the core concepts of disability and accessibility, and be empowered with knowledge on standards, tools and means of promoting accessibility. Furthermore, this publication will outline and analyse examples of good practices of accessibility identified in Asia and the Pacific. The majority of the good practices featured in this publication were initially discussed at two international and multi-stakeholder workshops that took place in 2014 and 2015, with a few additional examples drawn from Pacific island member States. The selection of practices for this publication is based on their embodiment of the principles of accessibility, demonstrated success, measurable impact on the community, and their adaptable and replicable nature"

Report of the Special Rapporteur on the rights of persons with disabilities (theme: access to rights-based support for persons with disabilities)

DEVANDAS, Catalina
December 2016

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In her report, the Special Rapporteur provides an overview of the activities undertaken in 2016, as well as a thematic study on access to support by persons with disabilities. The study includes guidance for States on how to ensure the provision of different forms of rights-based support and assistance for persons with disabilities, in consultation with them. In preparing the study, the Special Rapporteur convened a regional expert consultation in Addis Ababa in September 2016 and analysed the responses to a questionnaire sent to Member States, national human rights institutions, agencies of the United Nations system, civil society organisations and persons with disabilities and their representative organisations. As at 5 December 2016, she had received 114 responses. 

Travelling with a disability - Guideline

CBM INTERNATIONAL OFFICE - HEALTH, SAFETY AND SECURITY UNIT
August 2016

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This guideline was prepared in close cooperation with several CBM travellers with a disability and others who travel together with a person with a disability. Their experiences/testimonies have been collated using a series of guiding questions.

Who is this guideline for? This guideline targets travellers with a disability and personal assistants (PA) of travellers with a disability. In addition, this document is useful for anyone who is travelling together with a person with a disability.

What is the objective of this guideline? The aim of this guideline is to raise awareness and help to better prepare for trips. The guideline also gives first-hand advice and best-practice recommendations from persons with a disability for persons with a disability when they face challenges during their trip.

Disability inclusive health, safety & security management. A vital part of duty of care.

BURTZLAFF, Philipp
Van HERWIJNAN, Tom
July 2016

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This briefing paper aims to encourage security managers and policy makers towards implementing disability inclusive safety and security protocols and standards as an integral part of Duty of Care within the humanitarian, development and private sector. Development of SOPs, guidelines and contingency plans, training, briefings, feedback and incident reporting mechanism are outlined. Examples are provided of a visually impaired person in a vehicle at a roadblock and of disability inclusive travel preparations.

Reduce the 'Noice'

Retail Me Not
2016

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About 5 percent of the population is estimated to suffer from some form of sensory processing disorder. Considering that everyone needs to shop at some point, there are tremendous numbers of people out and about on a daily basis who are struggling to cope with sensory overload.

Sensory overload can hit adults as well as children. This guide is to help children and adults who may be susceptible to sensory overload in malls, shopping centers and other stores.

Twenty-five years of Community Living: Changes in Support Staff Perceptions

Wark, Stuart
Bleechmore, Kathleen
2015

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Purpose: The attitudes of support staff towards people with intellectual disability can greatly impact upon an individual’s quality of life and level of social inclusion. However, there are few studies that examine how perceptions and beliefs have changed within one organisation over the past few decades; a period during which there have been major social and government policy changes including deinstitutionalisation, inclusive education and the introduction of the United Nations Convention on the Rights of Persons with Disabilities. In conjunction with a 25th anniversary review of a community-living project in rural Australia, the current research replicated a study from 1987 that examined attitudes of staff with respect to people with intellectual disability, and thematically compared the findings of the two questionnaires.

 

Method: In 1987, a purpose-designed questionnaire was developed and completed by 15 direct care staff. This 10-item tool asked for basic demographic information and for the participants’ perceptions of people with intellectual disability and their own work roles in the disability sector. This tool was replicated in 2013 and was again completed by 15 direct care staff from the same organisation.

 

Results: The thematic analysis indicated a number of differences between the 1987 and 2013 cohorts in regard to their attitudes. The wide acceptance of the rights of people with intellectual disability was one key change. There was an age separation found within the 2013 cohort, with older participants (> 50 years of age) more likely to display similar attitudes to the 1987 group than the younger participants (<30 years old). Dealing with the problem of ageing-related issues, something that was not obvious 25 years ago, was now considered of major importance. There was evidence that disability support was increasingly recognised as a valid career choice, with a substantial difference in motivation found between the two age groups. Across both cohorts, direct exposure to the realities of the job was seen to be the best training for new employees.

 

Conclusions: The past 25 years have seen positive developments in both social acceptance and expectations for people with disabilities. Individuals are now viewed in a realistic but more positive light. As an exemplar of this change, concerns about individuals entering a consenting sexual relationship have changed dramatically, and what was once an issue of major concern is now no longer raised. While the training provided to staff has changed significantly over the past 25 years, on-the-job exposure to people with intellectual disability, combined with support from peers, is still perceived as vital for developing a quality support network.

Zero project report 2015 : independent living and political participation

BALMAS, Silva
et al
January 2015

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This study report focuses upon the implementation of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) regarding political participation and independent living. 39 innovative practices and 11 innovative policies addressing independent living and political participation were selected based on such criteria as innovation, impact, scalability, and professional approach. Further, the analysis and results from the social indicators questionnaire, answered by 275 experts from 150 countries, are presented with a particular focus on political participation and independent living

Note: all results and indicators, including interactive maps, are available for users on the website

Social indicators 2015

ZERO PROJECT
2015

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This resource contains a hyperlinked list of the thirty social indicators used by the Zero Project in their study to measure the worldwide implementation of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). These indicators have a particular focus on independent living and political participation

Thematic study on the right of persons with disabilities to live independently and be included in the community : Report of the Office of the United Nations High Commissioner for Human Rights

OFFICE OF THE UNITED NATIONS HIGH COMMISSIONER FOR HUMAN RIGHTS (UN OHCHR)
December 2014

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"The present study, developed under Human Rights Council resolution 25/20, is focused on the right to live independently and be included in the community, and the enjoyment, protection and promotion of that right as a substantive means for the realization of other rights, as a condition for avoiding institutionalization and segregation in health and social settings, and as a prerequisite to provide for the full development of the capabilities of persons with disabilities and their meaningful participation in, and contribution to, society"

The African disability scooter: efficiency testing in paediatric amputees in Malawi

BECKLES, Verona
MCCAHILL, Jennifer L
STEBBINS, Julie
MKANDAWIRE, Nyengo
CHURCH, John C T
LAVY, Chris
2014

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Purpose:

The African Disability Scooter (ADS) was developed for lower limb amputees, to improve mobility and provide access to different terrains. The aim of this study was to test the efficiency of the ADS in Africa over different terrains.

 

Method: 

Eight subjects with a mean age of 12 years participated. Energy expenditure and speed were calculated over different terrains using the ADS, a prosthetic limb, and crutches. Repeated testing was completed on different days to assess learning effect. 

 

Results:

Speed was significantly faster with the ADS on a level surface compared to crutch walking. This difference was maintained when using the scooter on rough terrain. Oxygen cost was halved with the scooter on level ground compared to crutch walking. There were no significant differences in oxygen consumption or heart rate. There were significant differences in oxygen cost and speed between days using the scooter over level ground, suggesting the presence of a learning effect. 

 

Conclusions:

This study demonstrates that the ADS is faster and more energy efficient than crutch walking in young individuals with amputations, and should be considered as an alternative to a prosthesis where this is not available. The presence of a learning effect suggests supervision and training is required when the scooter is first issued.

Social participation of diabetes and ex-leprosy patients in the Netherlands and patient preference for combined self-care groups

DE VRIES, Henry JC
DE GROOT, Roos
VAN BRAKEL, Wim H
August 2014

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This study compared the social constraints of diabetic patients and ex-leprosy patients and investigated combined self-care groups for ex-leprosy patients and diabetic patients. The physical complications and social problems in ex-leprosy and diabetic patients with neuropathy are similar. Despite the fact that diabetic patients preferred disease-specific, homogeneous self-care groups, the authors believe that the option of combined groups is a promising strategy. Therefore, further research is warranted into the acceptance and impact of self-care groups as a strategy to reduce social constraints by diseases causing neuropathy 

Frontiers in Medicine, Vol 1

Perceived Needs Related to Social Participation of People with Leprosy-related Disabilities and other People with Disabilities in Cambodia: A Qualitative Study

HEEREN, Marie-Julie J
KY, Lai
VAN BRAKEL, Wim H
2014

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Purpose: The objective of this study was to describe the similarities and differences in perceived needs related to social participation of persons with leprosy-related disabilities and other persons with disabilities in Cambodia, and to suggest key interventions to promote participation in the community.

 

Methods: A cross-sectional study was conducted. People with leprosy-related disabilities were selected at home during field visits or at the rehabilitation centre for people with leprosy in Phnom Penh. People with locomotor disabilities were selected at the rehabilitation centre for persons with disabilities in Phnom Penh and Prey Veng. A pilot-tested, face-to-face semi-structured interview, with open and closed questions, and focus group discussions were used to investigate the perceived needs related to social and economic participation in the community. The interview was based on the International Classification of Functioning, Disability and Health (ICF) model of the WHO.

 

Results: Both groups of people with disabilities struggle with social exclusion in society. People with leprosy-related disabilities, in particular, live below the poverty line of US$ 0.5 per day. Most of the participants lived in rural areas. Participants raised the need for enhanced self-esteem and help in finding jobs. To overcome the difficulty in finding employment, they felt vocational training and microcredit to start businesses, were required.  

 

Conclusions: The study found that both groups of people with disabilities have similar needs to improve participation in social and economic life. Rehabilitation centres provide vocational training and microcredit. Self-help groups have also proven effective in reaching poor people with disabilities in rural areas and improving social participation. The authors suggest that it is best to form multi-disability self-help groups to empower all the affected people and help fight poverty. 

 

 

Disability, CBR & Inclusive Development Journal, Vol 25, No 3

A guide for community health workers supporting children with disabilities

ADAMS, Mel
et al
2014

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"This resource is to be used as a guide for Community Health Workers (CHWs) to support parents in promoting the development and independence of their child with neurodevelopmental disabilities...In line with current thinking, this resource places the emphasis on promoting activity and participation in a child’s daily life activities rather than therapies that try to fix ‘the problem’ (Skelton and Rosenbaum, 2010). As such, this manual provides ideas on how to support the child during activities of daily living – taking particular account of their physical and communication abilities and needs – and does not include hands-on rehabilitation techniques that focus on specific impairments. It does however provide guidance on overall management and prevention of further disability. The materials in this manual can be used as the basis for a programme of intervention that progresses through two stages"

Note: As indicated when clicking on the resource link below, the manual is available once contact details are entered or alternatively user can contact mel@maits.org.uk to receive a free pdf copy of this resource

The psychosocial impact on standing devices

NORDSTRÖM, Birgitta
NYBERG, Lars
EKENBERG, Lilly
NÄSLUND, Annika
2013

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Purpose:

The aim of this study was to explore the psychosocial impact of standing devices as experienced by users. 

 

Method:

This is the second part of a comprehensive survey in five counties in Sweden where all the subjects with standing devices were invited to participate. The impact of standing devices on functional independence, quality of life and wellbeing was assessed using a questionnaire, Psychosocial Impact of Assistive Devices Scale (PIADS).

 

Results:

The psychosocial impact of the standing devices was perceived as positive. The highest PIADS scores in relation to age were found in the oldest group, aged 65 years and older. The ability to walk and independence in ambulation resulted in higher scores than the use of a wheelchair and/or dependence on others. Those who stood often awarded higher scores in the PIADS questionnaire compared to those who used the device less frequently. When standing was integrated in various activities, its psychosocial impact received high scores. 

 

Conclusion:

The psychosocial impact of standing devices was generally experienced positively. The main results indicated that standing in a standing device had a value and we as professionals should ask the users about the intended purpose of their standing in order to prescribe the optimal device.

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