Resources search

What is good personal assistance made of? Results of a European survey

MLADENOV, Teodor
2019

Expand view

This article presents the results of a survey on personal assistance (PA) for disabled people, conducted among PA users and members of the independent living movement in Europe. The survey was developed and implemented in the spirit of emancipatory disability research, and was informed by the social model of disability and the independent living philosophy. Participants were asked to assess a series of characteristics of PA in terms of their impact on users’ choice and control. Their responses help identify which characteristics of PA are considered to be enablers of choice and control, which characteristics are perceived as barriers and which characteristics elicit disagreement or lack of consensus among PA users and members of the independent living movement in Europe. Plans for using the results of the survey to develop a tool for evaluating PA schemes are also discussed.

“With CO-OP I’m the boss” – experiences of the cognitive orientation to daily occupational performance approach as reported by young adults with cerebral palsy or spina bifida

OHRVALL, Ann-Marie
BERGQVIST, Lena
HOFGREN, Caisa
PENY-DAHLSTRAND, Marie
May 2019

Expand view

Purpose: Restrictions to activity and participation in persons with cerebral palsy or spina bifida are often due to both motor and executive dysfunction. Hence methods focusing solely on motor issues are not enough to enhance participation. The Cognitive Orientation to daily Occupational Performance ApproachTM is a performance-based approach offering clients opportunities to create their own strategies to learn skills. The aim of the present study was to explore and describe experiences of the Cognitive Orientation to daily Occupational Performance Approach as reported by young adults with cerebral palsy or spina bifida.

 

Methods: Qualitative content analysis was used. Semi-structured individual interviews were conducted with the 10 participants aged 16–28, post-intervention and at 6-months follow-up.

 

Results: The participants described how the Cognitive Orientation to daily Occupational Performance Approach enhanced their self-efficacy. Four categories describing the participants’ experiences emerged: “CO-OP is a different way of learning”, “CO-OP sometimes puts a strain on me”, “CO-OP supports my way of thinking and doing” and “CO-OP boosts me”.

 

Conclusion: The young adults expressed that the Cognitive Orientation to daily Occupational Performance intervention, although sometimes challenging, was worth the effort because it provided them with an opportunity to master everyday-life problems by using meta-cognitive thinking, which enhanced their self-efficacy.

Return to work predicts perceived participation and autonomy by individuals with stroke

Westerlind, Emma
Persson, Hanna C
Tornbom, Karin
SUNNERHAGEN, Katharina S
May 2019

Expand view

Purpose: Participation in activities of everyday life is seen as main goal of rehabilitation after a stroke and return to work is an important factor to consider for the substantial number of persons having a stroke at working age. The current study aims to investigate whether returning to work would predict self-perceived participation and autonomy in everyday life after a stroke, from a long-term perspective.

 

Materials and methods: Persons with first-ever stroke at age 18–63 years in 2009–2010, Gothenburg, were included. As 5-year follow-up, the Impact on Participation and Autonomy questionnaire was sent out, investigating self-perceived participation/autonomy in five levels, and work status was investigated from national sick-absence registers. Prediction of work on participation/autonomy was investigated with logistic regression.

 

Results: A total of 109 participants (49%) responded to the questionnaire. The majority (69–94%) perceived very good participation/autonomy in all domains and 59% were working 5 years after stroke. Working was a significant predictor of high participation/autonomy in all domains of the questionnaire.

 

Conclusions: Being able to return to work after a stroke seems to be important for self-perceived participation/autonomy. This emphasizes the importance of work-oriented information and rehabilitation after a stroke at working age.

Disability and disaster risk reduction as an incongruent matrix: Lessons from rural Zimbabwe

LUNGA, Wilfred
BONGO, Paradzavi Pathias
VAN NIEKERK, Dewald
MUSARURWA, Charles
April 2019

Expand view

This research paper focuses on two key topics in the disaster science field: pre-disaster risk reduction planning and post-disaster emergency response activities. It is based on experiences from disaster risk reduction projects in Bulilima and Mangwe districts in southern Zimbabwe between 2006 and 2014. A qualitative research methodology was employed, and data were collected using in-depth personal interviews, observations and focus group discussions. Both able-bodied people and people living with disabilities (PWDs) were part of the study.

 

Jamba. (Journal of disaster risk studies) 2019; 11(1): 648.

doi: 10.4102/jamba.v11i1.648

Disability Inclusion Matters: Including persons with disabilities in the promotion of good governance

SCHMIDT, Bettina
Ed
April 2019

Expand view

In the past nine years, the GIZ Sector Project ‘Inclusion of Persons with Disabilities’ has been supporting more than 30 programmes worldwide to include persons with disabilities in our efforts to improve good governance. This publication consolidates lessons learnt and offers guidance and tools around how to address disability in governance programming

Community-based rehabilitation workers’ perspectives of wheelchair provision in Uganda: A qualitative study

SEYMOUR, Nikola
GEIGER, Martha
SCHEFFLER, Elsje
2019

Expand view

Background: The challenges of wheelchair provision and use in less resourced settings are the focus of global efforts to enhance wheelchair service delivery. The shortage of professional wheelchair service providers in these settings necessitates the collaboration of multiple stakeholders, including community-based rehabilitation (CBR) workers, whose role needs to be further understood.

 

Objectives: The aim of this study was to determine what CBR workers in three areas of Uganda perceived as (1) the challenges with wheelchair provision and use, (2) the factors contributing to these challenges, (3) the role they themselves can potentially play and (4) what facilitators they need to achieve this.

 

Method: This qualitative study in the transformative paradigm comprised focus group discussions to gather perceptions from 21 CBR workers in three areas of Uganda, each with an operational wheelchair service, participant observations and field notes. Thematic analysis of data was implemented.

 

Results: Community-based rehabilitation workers’ perceptions of challenges were similar while perceived causes of challenges differed as influenced by location, historical and current wheelchair availability and the CBR workers’ roles. Their main responsibilities included assistance in overcoming barriers to access the service, transfer of skills and knowledge related to wheelchairs, follow-up of users for wheelchair-related problem-solving, and user and community empowerment.

 

Conclusion: Community-based rehabilitation workers can contribute in various ways to wheelchair service delivery and inclusion of wheelchair users; however, their capabilities are not consistently applied. Considering the diversity of contextual challenges, CBR workers’ range of responsive approaches, knowledge of networks and ability to work in the community make their input valuable. However, to optimise their contribution, specific planning for their training and financial needs and effective engagement in the wheelchair services delivery system are essential.

 

 

African Journal of Disability, Vol 8, 2019

‘We only got Coca-Cola’: Disability and the paradox of (dis)empowerment in Southeast Nigeria

NWOKORIE, Okechukwu V.
DEVLIEGER, Patrick J.
2019

Expand view

Background: Empowerment is the generic name for support services for persons with disability in Nigeria. In it, the elites of the society play leading roles. Special events such as anniversaries, Christmas seasons, wealthy people’s birthdays, investiture of new titles and campaigns before general elections often provide occasions for empowerment programmes.

 

Objectives: This article explores discourses of empowerment of persons with disability in Southeast Nigeria. We concentrate on the relation between local elites and the disability community and how it impacts our understanding of empowerment. Conceptualising empowerment as worldmaking, and disability as something that is ambiguous, we challenge the assumption that the aim of empowerment of disabled people is to improve their (disabled people’s) quality of life.

 

Method: This article relies on research data (collected between January 2014 and January 2017) comprising 72 interviews and participant observations from 27 persons with disability, and 13 social workers and senior government officials.

 

Results: We conclude that discourses of empowerment of disabled people frame disability as loss and tend to conceal the personal stories and survival operations of disabled people.

 

Conclusion: Empowerment discourses ironically provide the platform for local power elites to ‘ride’ to fame on the backs of disabled to extend their influence in society. In the current neoliberal environment of unequal access to opportunities, disabled people must ‘play along’ as a survival strategy. Our qualitative data provide opportunities to reflect on the tensions between the ‘local and the global’, thus indicating how disability issues intersect with other wider questions.

 

 

African Journal of Disability, Vol 8, 2019

India inclusion summit 2018

March 2019

Expand view

India Inclusion Summit is a community driven initiative that aspires to build an Inclusive India by 2030. It is an annual event that began in 2012 to create awareness about disabilities and the need for Inclusion. The event brings together thought leaders and unsung heroes from the field of disability and inclusion to deliberate, discuss and drive change in our society.

 

Videos of some of the presentations are available including:

My Journey and ‘Deaf gain’ing an accessible India:  Vaibhav Kothari (18 mins), signed

You’re not just special. You’re Special Edition:  SwarnaLatha (11 mins)

Don’t let disability come in the way of things you love: Zoyeb Zia (10 mins), signed

The Adventure of Autism and quest to serve each other: Rupert Isaacson (20 mins), signed

Making a billion people read despite their disabilities: Brij Kothari (21 mins), signed

The ability needed to be whoever you want to be: Devika Malik (13 mins), signed

Everyone has something to give: Suchitra Shenoy (11 mins), signed

From being inclusive to doing acts of inclusion: Yetnebersh Niguissie (12 mins), signed

Finding your missing piece: Jerry White (18 mins), signed

Listening to the voice within that opens infinite possibilities: Rajni Bakshi (15 mins), signed

Being a mother is the most satisfying role: Suhasini Maniratnam (21 mins) signed

 

 

Towards independent living: Collecting examples from Europe

ANGELOVA-MLADENOVA, Lilia
March 2019

Expand view

This Collection is a joint initiative of the European Network on Independent Living (ENIL) and the European Disability Forum (EDF). It features examples from different EU Member States, which to a different extent facilitate the right to live independently in the community.

The examples are divided into four areas, presented in different chapters:

  • Legislation and funding: State Funded Peer-Counselling – Estonia; Direct Payments – Ireland.
  • Community-based support: Peer-Counselling for women with disabilities – Austria; Supported living for adults with intellectual disabilities – Croatia; Supported Decision-Making – The Czech Republic; Mobile Mental Health Units – Greece; Personal Assistance for People with Complex Disabilities – Sweden .
  • Involvement of disabled people: Co-Production in Social Care – United Kingdom; Participation of Organisations of People with Disabilities – Italy
  • Self-advocacy: Self-Advocacy of Disabled People – Romania

 

Not to be left behind - Alternative report on the situation of the rights of persons with disabilities within the framework of the implementation of the 2030 Agenda for sustainable development in Colombia

March 2019

Expand view

This report discusses the concerns and comments of organizations of persons with disabilities, human rights organizations, researchers and academics, as well as other relevant governmental actors, regarding SDGs policies in Colombia. Mainly, the analysis focuses on two of the 17 goals:

Goal 4: Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all.
Goal 5: Achieve gender equality and empower all women and girls.

Secondary sources about disability in Colombia were reviewed. Three validation workshops were organised to identify the progress and challenges of the implementation of the 2030 Agenda from the perspective of disability

Results are presented and discussed and recommendations made

Leaving no-one behind: Building inclusive social protection systems for persons with disabilities

KIDD, Stephen
et al
February 2019

Expand view

How to make social protection systems and schemes more inclusive of persons with disabilities is examined. Social protection can play a key role in empowering persons with disabilities by addressing the additional costs they face, yet the majority of persons with disabilities are currently excluded from schemes.

The report identifies a wide range of barriers persons with disabilities experience in accessing social protection to be overcome. It calls for better data on disability, disability-specific and old age pension schemes and expanded coverage; adapting communications about social protection schemes; and improving disability assessment mechanisms. The research underpinning the report comprised involved a review of the literature, an analysis of household survey datasets, and consultations with key stakeholders and persons with disabilities in seven low- and middle-income countries: Brazil, India, Kenya, Mauritius, Rwanda, South Africa and Zambia.

Topics covered include:

  • Types of social protection schemes for persons with disabilities
  • Levels of investment in social protection for persons with disabilities
  • Coverage of persons with disabilities by social protection
  • Impacts of social protection on persons with disabilities
  • Barriers to accessing social protection and measures to address them
  • Links between social protection schemes and other public services

Individualised funding interventions to improve health and social care outcomes for people with a disability: a mixed-methods systematic review. Campbell Systematic Reviews 2019:3

FLEMING, Padraig
et al
January 2019

Expand view

This Campbell systematic review examines the effects of individualised funding on a range of health and social care outcomes. It also presents evidence on the experiences of people with a disability, their paid and unpaid supports and implementation successes and challenges from the perspective of both funding and support organisations.

 

This study is a review of 73 studies of individualised funding for people with disabilities. These include four quantitative studies, 66 qualitative and three based on a mixed-methods design. The data refer to a 24-year period from 1992 to 2016, with data for 14,000 people. Studies were carried out in Europe, the US, Canada and Australia.

 

DOI 10.4073/csr.2019.3

WHO consolidated guideline on self-care interventions for health: sexual and reproductive health and rights

WORLD HEALTH ORGANISATION (WHO)
2019

Expand view

SELF-CARE is the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a health-care provider. 

The purpose of this guidance is to develop a peoplecentred, evidence-based normative guideline that will support individuals, communities and countries with quality health services and self-care interventions, based on PHC (Primary Health Care) strategies, comprehensive essential service packages and people-centredness. The specific objectives of this guideline are to provide:

• evidence-based recommendations on key public health self-care interventions, including for advancing sexual and reproductive health and rights (SRHR), with a focus on vulnerable populations and settings with limited capacity and resources in the health system

• good practice statements on key programmatic, operational and service-delivery issues that need to be addressed to promote and increase safe and equitable access, uptake and use of self-care interventions, including for advancing SRHR.

Innovate for Inclusion. Four cases of application of the social innovation lab methodology to enhance disability inclusion in mainstream settings

MAARSKE, Anneke
NEDERVEEN, Matthijs
BAART, Judith
2019

Expand view

This publication reflects back on four co-design processes undertaken by Light for the World’s Disability Inclusion Lab during the past few years. These different journeys in solution development have demonstrated the power of this methodology to create genuine inclusion in livelihood programming while striving to empower persons with disabilities to achieve economic success. In this publication the social innovation lab methodology is described as a unique approach to inclusive programming, highlighting four cases: The Livelihood Improvement Challenge in Uganda, the lab in the EmployAble programme in Ethiopia, the AgriLab in Cambodia, and the InBusiness pilot in Kenya. Lessons learnt are described.

Summary of Iraq national report on Sustainable Development Goals & the CRPD

AL-EZZAWI, Hashem Khalil
ALKhafaji, Mowafaq
2019

Expand view

This report was prepared by a team composed of disabilities experts, academics, representatives of disabilities organizations and other concerned organizations, and volunteers with disabilities. A common methodology was developed with friendly organizations and associations operating in the Kurdistan Region, in accordance with the UN Convention and sustainable development goals, as follows

 

1- Forming a steering committee consist of the Iraqi gathering of Iraqi Disabled Organizations (IGDO) and other relevant organizations

2- Reviewing national legislations, laws, regulations and strategies related directly and indirectly to the rights of persons with disabilities and their compatibility with the Convention on the Rights of Persons with Disabilities.

3- Making sure that the report addresses all types of disabilities and covers all services, activities and areas without exception.

4- Making all the required efforts to insure that monitoring process includes positive and negative records concerning rights realization and sustainability.

5- Conducting a field survey of all activities of organizations of persons with disabilities.

6- Identifying gaps related to the rights of persons with disabilities.

7- Organizing a number of focus groups for different types of disabilities.

8- Providing the database of (IGDO) with data and information on persons with disabilities.

9- Conducting field visits to institutions and centers working in the area of disabilities.

10 - Making Interviews with experts, activists, representatives of governmental and international institutions and civil society organizations working in the field of disabilities in Iraq.

 

Research was carried out into progress in relation to eight of the SDGs (1, 3, 4, 5, 8, 11, 16 and 17)

World report on vision

WORLD HEALTH ORGANISATION (WHO)
2019

Expand view

This report makes the case that integrated people-centred eye care is the care model of choice and can help meet the challenges faced. Chapter 1 highlights the critical importance of vision; describes eye conditions that can cause vision impairment and those that typically do not; reviews the main risk factors for eye conditions; defines vision impairment and disability; and explores the impact of vision impairment. Chapter 2 provides an overview of the global magnitude of eye conditions and vision impairment and their distribution. Chapter 3 presents effective promotive preventive, treatment, and rehabilitative strategies to address eye care needs across the life course. Chapter 4 starts by taking stock of global advocacy efforts to date, the progress made in addressing specific eye conditions and vision impairment, and recent scientific and technological advances; it then identifies the remaining challenges facing the field. Chapter 5 describes how making eye care an integral part of universal health care (including developing a package of eye care interventions) can help address some of the challenges faced by countries. Chapter 6 presents IPEC and explains the need for engaging and empowering people and communities, reorienting the model of care based on a strong primary care and the need for coordinating services within and across sectors; and creating an enabling environment. The report ends with five recommendations for action that can be implemented by all countries to improve eye care. 

The inclusion of persons with disabilities in EU-funded humanitarian aid operations.DG ECHO Operational Guidance

EUROPEAN COMMISSION
January 2019

Expand view

 

This guidance has been developed as a tool to reach the goal that all EU-funded humanitarian partners be required to take the needs of persons with disabilities into account in their projects.


It concentrates on mainstreaming the needs of persons with disabilities across all types of humanitarian interventions, hence not dealing with targeted actions specifically. As such, this guidance is a complementary tool to existing Thematic Policies, in particular to Thematic Policy n°8 on Humanitarian Protection

 

The guidance consists of three main parts. Part II presents disability mainstreaming in programming in detail and provides a series of concrete examples and illustrations. It also provides tools to collect data and measure disability inclusion. Part III of the guidance is a short document that that can be easily used in the field for either programming or monitoring.

Access to Social Organisations, Utilisation of Civil Facilities and Participation in Empowerment Groups by People with Disabilities in Maharashtra, India

GOVINDASAMY, Karthikeyan
DHONDGE, Suresh
DUTTA, Ambarish
MENDIS, Tina
2019

Expand view

Purpose: This survey aimed to assess the baseline level of access to social institutions, utilisation of civil facilities and participation in empowerment schemes by people with disabilities in Amravati district of Maharashtra State, India.

 

Method: Sixty villages from two blocks in Amravati district were randomly selected for the survey. From these villages, 522 households were sampled and 3056 individuals were surveyed. Interviews were conducted with 590 individuals with disability from among the surveyed population. The structured interview schedule consisted of demographic data, access to social organisations, utilisation of civil services, and participation in empowerment schemes. 

 

Results: Locomotor disability was the most prevalent (44.6%) type of disability in the study area. Disabilities were more often present among male adolescents and young adults than among the older population and females. Over 50% of the study participants had no occupation (including children and students) and had not been to school. Only 48% had achieved secondary education and more. The proportion of disability among people belonging to Scheduled Castes and Scheduled Tribes was considerably higher than among the general population. Access to social institutions was less than 50% for most of the items, and was even lower among females. Except for the ration card and Aadhar card, civil services were generally under-utilised by people with disability. Only 3.2% of the participants were members of self-help groups, and not a single person was a member of the Disabled People’s Organisation.

 

Conclusions:  In the study area access to social institutions, utilisation of civil services and participation in empowerment schemes was very low.

 

Limitations: Data, including general socio-demographic, access and utility data, was not collected for the general population but was limited to people with disabilities. This restricted the scope for comparison between people with and without disabilities.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Delivering together for inclusive development: digital access to Information and knowledge for persons with disabilities

DARVISHY, Alireza
EROCAL, Deniz
MANNING, Juliet
2019

Expand view

This report focuses on digital inclusion as it relates to four of the 17 Goals for the 2030 Sustainable Development Agenda:

  • SDG 9 - Innovation, Industry, and Infrastructure
  • SDG 16 - Peace, Justice, and Strong Institutions
  • SDG 17 - Partnerships for the Goals
  • SDG 4 - Quality Education

For each of the goals, a number of major challenges and key recommendations are defined. Finally, general recommendations are given for improving global digital inclusion overall.
 

Adapting an education program for parents of children with autism from the United States to Colombia

MAGANA, Sandy
TEHERO HUGHES, Marie
SALKAS, Kristen
MORENO ANGARITA, Marisol
2019

Expand view

One of the lingering aspects of coloniality in the Americas is paternalism. In Latin America, this power structure plays out among people with autism spectrum disorder (ASD) through beliefs that people with disabilities need to be protected and guarded at home, and that they are unable to learn and function in society. We developed a program to empower parents of children with ASD through peer education to help their children realize their potential. This program was implemented in the United States (US) for Latino immigrant families and then adapted for use in Bogotá, Colombia. In this paper, we discuss some of the ways the manifestations of colonialism have influenced the adaptation of this program from North to South. For example, in Colombian society it is not common to use non-professionals or peers to deliver scientific information because within a paternalistic society there is ‘respeto’ (respect) for persons who are older, male and have credentials. Therefore, promoting the use of peer-mothers in this context was a challenge in the adaptation that warranted compromise. We explore and discuss similarities and differences in the adaptation and delivery between North and South and problematize the idea of Latinos in the US versus Colombia.

 

Disability and the Global South, 2019 Vol.6, No. 1

Pages

E-bulletin