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Zero Project Report 2019: Independent living and political participation

FEMBEK, Michael
January 2019

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The Zero Project Report 2019 focuses on Article 19 (Living independently and being included in the community) and Article 29 (Participation in political and public life) of the UN CPRD, as well as related topics such as Article 12 (Equal recognition before the law) and Article 13 (Access to justice)

For 2019 the Zero Project selected 66 Innovative Practices and 10 Innovative Policies from 41 countries that positively impact the rights of persons with disabilities in their ability to live more independently and to take part in political life

 

This Report is composed of five main sections, summarizing the annual research, followed by an Annex:

• Executive Summary, including background information on this year’s research topic and the Zero Project methodology

• Innovative Polices and Practices: Fact Sheets and Life Stories

• Description of the Zero Project–Impact Transfer programme

• Description of EU-grant-funded TOPHOUSE projects

• A summary of this Report in easy language

• An Annex listing all Zero Project network members active in 2018–2019

The Zero Project Report is also available on the Zero Project Website in an accessible pdf format.

 

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

WORLD HEALTH ORGANISATION (WHO)
2019

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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.

Working with persons with disabilities in forced displacement

UN HIGH COMMISSIONER FOR REFUGEES (UNHCR)
2019

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This note has been updated from its 2011 release and provides UNHCR and partners with specific guidance on meeting the protection needs of a diversity of persons with disabilities. While the document refers mainly to refugees, it applies to all of UNHCR’s persons of concern, including refugees, asylum seekers, internally displaced persons, returnees, and stateless persons.

This note provides guidance on: who persons with disabilities are; key principles (rights based approach, inclusion, participation and non-discrimination) and cross-cutting actions. 

Disability and unpaid care work

CBM AUSTRALIA
2019

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This report looks at the impact of unpaid care work on disability inclusive programming and shares some practical ideas for how to address this based on experiences of CBM partners and other agencies. 

 

Programme experience discussed include:

  • Building agency and relationships: a community mobilisation approach in Jharkhand, India
  • Engaging men as care advocates in the Phillipines
  • Recognising and supporting care givers in Ghana
  • Good practice

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 2

2019

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Articles included are:

  • A comparison of disability rights in employment: Exploring the potential of the UNCRPD in Uganda and the United States
  • Reimagining personal and collective experiences of disability in Africa
  • Social participation and inclusion of ex-combatants with disabilities in Colombia
  • ‘Inclusive education’ in India largely exclusive of children with a disability
  • Participation, agency and disability in Brazil: transforming psychological practices into public policy from a human rights perspective

Alternative report on the implementation of the 2030 Agenda in line with the CRPD in Pakistan

PAKISTAN ASSOCIATION OF THE BLIND
IQBAL, Mohammad
SAJID, Imran
2019

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Pakistan is committed to fulfilling the vision of 2030 Agenda, and is the first country in the world to localize the SDGs of 2030 Agenda after a unanimous parliamentary resolution was passed on 19 February, 2016. The federal and provincial governments have established SDG units in their respective planning and development departments. This report analyses 6 SDGs and their respective provisions in UNCRPD in Pakistan. 

This report selected SDG 01, 03, 04, 08, 11, and 16 and their progress in Pakistan. A participatory methodology was adopted whereby the data was collected through interviews, questionnaires and it focused on group discussions from the Disabled People’s Organizations (DPOs) based in Islamabad, Peshawar, Lahore, Karachi, Quetta, Gilgit-Baltistan, and Azad Jammu and Kashmir. The data was collected in two phases: phase-I involved interviews while phase-II involved focused group discussions.

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

EUROPEAN COMMISSION
January 2019

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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.

Changes in social participation of persons affected by leprosy, before and after multidrug therapy, in an endemic state in Eastern India

RAMASAMAY, Senthilkumar
2019

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Purpose: In general, multidrug therapy (MDT) completion rate and the change in disability levels before and after medical treatment are reported as outcomes in leprosy programmes. Changes in activity and social participation levels are rarely reported, possibly because the parameters are more difficult to measure. The study aimed to assess and evaluate the changes in social participation among leprosy-affected persons after completion of MDT.

 

Method: An observational study was conducted among 108 newly-diagnosed leprosy- affected clients, who were registered at the Leprosy Referral Hospital in Champa, Chhattisgarh. Their disability levels pre- and post- MDT were assessed using the WHO Disability Grading, and their social participation level was assessed using the Participation Scale.

 

Results: Of the 108 clients registered during the study period, 90 completed the full course of MDT and were included in the analysis. The majority of these 90 clients or 83% were multibacillary and 23% had Grade 2 disability at the time of diagnosis. At the end of MDT with steroids therapy for reaction and neuritis, the proportion of clients with no participation restriction increased from 76% to 93%. Clients with visible impairments had more restriction as compared to those with no deformity or no visible deformity, before and after MDT. Among those with visible impairments, 78% had mild to severe restriction before MDT and it declined to 26% on completion of treatment.

 

Conclusion: Presence of Grade 2 disability at the time of diagnosis was significantly associated with participation restriction. MDT and steroid therapy for management of reaction and/or neuritis improves the participation level of leprosy-affected clients, suggesting that early detection and appropriate management would reduce their risk of participation restriction.

Quality of life of persons with disabilities in SNNPR, Ethiopia

2019

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The Ethiopian Centre for Disability and Development (ECDD), supported by the Light for the World Inclusion Lab in the Netherlands, did a survey in the Southern Nations, Nationalities and Peoples’ Region (SNNPR) of Ethiopia to measure access to healthcare, rehabilitation, education, livelihood and community participation.  Almost 1.000 people with different types of disabilities were interviewed (using the Washington Group short set of questions for disability). 

Social participation and inclusion of ex-combatants with disabilities in Colombia

RIVAS VELARDE, Minerva
Del ROCIO GARZON DIAZ, Karim
SHAKESPEARE, Tom
2019

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The purpose of this paper is to explore ex-combatants’ understandings of disability and the pathways for social reintegration available to them in Colombia. The qualitative data for the study include seven in-depth interviews with ex-combatants and 29 with key informants, including disabled people’s organisations, government agencies, international organisations and academic groups. Findings suggest that transition to civilian life for ex-combatants is made more difficult by inadequate procedures, lack of support and complex administrative data vacuums. Social determinants, historical prejudice against persons with disabilities, high levels of unemployment and political polarisation in a post conflict context combine to trigger poverty traps. The findings indicate pitfalls in the early implementation of the Colombian peace process, which did not consider structural issues that affected transition to civilian life for ex-combatants with disabilities. Furthermore, key enablers for social inclusion such as peer-to-peer support have been identified by respondents. This paper concludes that more needs to be done to enhance the voices of ex-combatants with disabilities and to understand the profound meaning of acquiring impairments through participation in conflict, as well as how post-conflict responses could enable these individuals to gain the skills they need to successfully reintegrate into their communities. 

 

Disability and the Global South, 2019, Vol.6, No. 2

Participation, agency and disability in Brazil: transforming psychological practices into public policy from a human rights perspective

GESSER, Marivete
BLOCK, Pamela
NUERNBERG, Adriano Henrique
2019

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Participation is a little discussed or researched concept in the social sciences, despite its importance in understanding activism. This article presents some theoretical and methodological considerations for promoting social participation and agency for disabled people through the work of psychologists associated with Brazilian public policies. This article takes the form of a discursive study, based on the dialogue between: a) Brazilian legislation on disability; b) Bader Sawaia’s Ethical-Political Psychology; and c) Disability Studies. Based on the assumption that psychological practices should promote participation and agency for disabled people, we present the elements that hinder or control participation. We then present theoretical methodological contributions to build practices that promote participation and agency, highlighting: a) critiques of moral and biomedical models of disability; b) understandings of disability from intersectional perspectives that incorporate it as a category of analysis; c) including disabled people in the construction of research and professional practices disabled people and d) the rupture with ableism, which blocks the participation of disabled people. Participation has shown to be a multidimensional concept that covers a spectrum of aspects – from the practice of activism to the constitution of subjectivity in disabled people.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 2

Public stigmatisation of people with intellectual disabilities: a mixed-method population survey into stereotypes and their relationship with familiarity and discrimination

PELLEBOER-GUNNINK, Hannah A
VAN WEEGHEL, Jaap
EMBREGTS, Petri J C M
January 2019

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Purpose: Stigmatisation can negatively affect opportunities for people with intellectual disabilities to participate in society. Stereotyping, a first step in the process of stigmatisation, has been insufficiently explored for people with intellectual disabilities. This study examined the general public’s set of stereotypes that is saliently attributed to people with intellectual disabilities as well as the relationship of these stereotypes with discriminatory intentions and familiarity.

 

Materials and methods: A mixed-method cross-sectional survey within a representative sample of the Dutch population (n = 892) was used. Stereotypes were analysed with factor analysis of a trait-rating scale, and qualitative analysis of an open-ended question. The relationship between stereotypes and discrimination as well as familiarity with people with intellectual disabilities was explored through multivariate analyses.

 

Results and conclusions: Four stereotype-factors appeared: “friendly”, “in need of help”, “unintelligent”, and “nuisance”. Stereotypes in the “nuisance” factor seemed unimportant due to their infrequent report in the open-ended question. “Friendly”, “in need of help”, “unintelligent” were found to be salient stereotypes of people with intellectual disabilities due to their frequent report. The stereotypes did not relate to high levels of explicit discrimination. Yet due to the both positive and negative valence of the stereotypes, subtle forms of discrimination may be expected such as limited opportunities for choice and self-determination. This may affect opportunities for rehabilitation and might be challenged by protest-components within anti-stigma efforts.

Psychological well-being in adults with spinal muscular atrophy: the contribution of participation and psychological needs

FISCHER, Maarten J
ASSELMAN, Fay-Lynn
KRUITWAGEN-VAN REENAN, Esther T
VERHOEF, Marjolein
WADMAN, RENSKE I
VISSER-MEILEY, Johanna M A
VAN DER POL, W Ludo
SCHRODER, Carin D
January 2019

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Purpose: Patients with spinal muscular atrophy (SMA) suffer from slowly progressive weakness of axial, respiratory and proximal muscles, leading to restrictions in activity and participation. This study aims to investigate patients’ level of psychological well-being, using the International Classification of Functioning model and self-determination theory as theoretical frameworks.

 

Materials and methods: In this cross-sectional study, adults with SMA were invited to complete a questionnaire. Instruments to assess psychological well-being included the Satisfaction with Life Scale, the Rosenberg Self-Esteem Scale and the Positive and Negative Affect Scale. Hierarchical lineal regression analyses were performed to investigate the contribution of participation (International Classification of Functioning model) and satisfaction of the need for autonomy, competence and relatedness (self-determination theory) to well-being.

 

Results: Ninety-two respondents (67%) returned the questionnaire. Levels of psychological well-being were comparable to that of healthy reference samples. Well-being was unrelated to sociodemographic variables or illness characteristics. By contrast, well-being was closely related to respondents’ satisfaction with participation, and their sense of autonomy, competence and relatedness.

 

Conclusions: This study illustrates the relevance of psychological needs for understanding well-being of individuals with SMA. Supporting patients in meeting their psychological needs should become an objective of person-centred care for this population.

Employees with hearing impairment. A qualitative study exploring managers’ experiences

VIGRESTAD SVINNDAL, Elisabeth
JENSEN, Chris
BY RISE, Marit
January 2019

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Purpose: Explore managers’ experiences regarding employees with hearing impairments.

 

Materials and methods: Individual interviews with ten managers having employees with hearing impairment. The interviews were analyzed using Systematic text condensation.

 

Results: The managers felt great responsibility for their employees’ functioning, but hearing loss issues were easily forgotten. They found access to information as imperative to secure workplace adjustments, and temporary needs, rather than permanent ones, were easily met. Despite their challenging nature, meetings were not accommodated to meet hearing loss needs. Support in accommodation processes at the workplace was not requested since minor adjustments were perceived as sufficient.

 

Conclusion: The results show that there are barriers towards developing less strenuous working conditions for employees with hearing impairments. The implications of hearing loss should be recognized as risk factors for fatigue and treated accordingly. Appropriate services are necessary to support the stakeholders at the workplace and utilize the room for manoeuver in the accommodation process. Further studies should identify how such services can accommodate both the employees, and managers’ needs.

A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness

PHOENIX, Michelle
JACK, Susan M
ROSENBAUM, Peter L
MISSIUNA, Cheryl
January 2019

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Purpose: Parents’ attendance, participation and engagement are thought to be critical components of children’s rehabilitation services; however, these elements of therapy are typically under-investigated. The purpose of this study was to develop a substantive theory of parents’ attendance, participation and engagement in children’s rehabilitation services.

 

Methods: A constructivist grounded theory study was conducted. Data collection included interviews with parents (n = 20) and clinicians (n = 4), policies regarding discharge, and child-health records. Data was analyzed using constant comparison, coding and memoing. To promote credibility, authors engaged in reflexivity, peer debriefing, member checking, triangulation and recorded an audit trail.

 

Results and conclusions: The Phoenix Theory of Attendance, Participation and Engagement was developed. This theory is described metaphorically as a journey to child health and happiness that has six components including: parent’s feelings, skills, knowledge, logistics, values and beliefs and parent’s relationship with the professional. The child, parent, service provider, and organizational factors that impact engagement are described. Service providers, policy makers, organizational leaders and researchers can use this information to promote engagement in children’s developmental rehabilitation services.

Time to update the ICF by including socioemotional qualities of participation? The development of a “patient ladder of participation” based on interview data of people with early rheumatoid arthritis (the Swedish TIRA study)

SVERKER, Annette
THYBERG, Ingrid
VALTERSSON, Eva
BJORK, Mathilda
HJALMARSSON, Sara
OSTLUND, Gunnel
January 2019

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Purpose: The aim of was to identify and illustrate in what situations and with what qualities people with early RA experience participation in every day’s life.

 

Methods: Fifty-nine patients (age 18–63 years) were interviewed; 25 men and 34 women. Content analysis was used to identify meaning units that were sorted based on the type of situations described and later on, categories based on quality aspects of participation were developed.

 

Results: Participation was described as: 1. being part of a group, where a sense of belonging arose. 2. In doing activities with others for example at work or in leisure. 3. When sharing everyday chores and responsibilities for example in domestic duties. 4. When experiencing influence on actions such as when being asked for opinions on how to conduct a specific task. 5. When having the possibility to give direction of goals in rehabilitation, or elsewhere. 6. When sharing decision making and experiencing a high degree of influence in the situation.

 

Conclusions: Participation from an individual’s perspective is about belonging and having influence that mediates a positive feeling of being included and that you matter as a person. The results are important when using participation as a goal in clinical care. It is important to expand participation beyond the definitions in ICF and guidelines to include the patients’ socio-emotional participation in order to promote health.

Minimum standards for protection, gender and inclusion in emergencies

INTERNATIONAL FEDERATION OF RED CROSS AND RED CRESCENT SOCIETIES (IFRC)
November 2018

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The International Federation of Red Cross and Red Crescent Societies (IFRC) Minimum standards for protection, gender and inclusion in emergencies (2018) is in its second edition. The first pilot version of the IFRC Minimum standard commitments to gender and diversity in emergency programming was published in 2015. The pilot version has been tested globally by Red Cross and Red Crescent staff, volunteers and management in low-, medium- and high-scale disasters and humanitarian crises. This edition is the result of three years of testing, revision and feedback from protection, gender and inclusion (PGI) and sectoral specialists. New chapters, such as cash-based interventions, have been added as well as a stronger focus on sexual and gender-based violence and disability inclusion to align with the commitments of the IFRC and its member National Societies. This edition is accompanied by the IFRC Protection, gender and inclusion in emergencies toolkit (2018–2019).

This guidance presents Red Cross and Red Crescent staff, members and volunteers with a set of minimum standards for protection, gender and inclusion (PGI) in emergencies. It aims to ensure that the emergency programming of the International Federation of Red Cross and Red Crescent Societies (IFRC) and National Societies provides dignity, access, participation and safety for all people affected by disasters and crises.

It provides practical guidance on how to mainstream these four principles in all sectors, based on a consideration of gender, age, disability and other diversity factors. This includes limiting people’s exposure to the risks of violence and abuse and ensuring that emergency programmes “do no harm”.

The standards address protection, gender and inclusion concerns by providing practical ways to engage with all members of the community, respond to their differing needs and draw on their capacities in the most non-discriminatory and effective way. This helps to ensure that local perspectives guide assistance delivery. The standards also support incorporation of the seven Fundamental Principles of the International Red Cross and Red Crescent Movement.

Saving lives and leaving no one behind - The Gaibandha Model for disability-inclusive disaster risk reduction

ROTHE, Manuel
BROWN, David
NEUSCHAFER, Oliver
October 2018

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"The Gaibandha Model" good practices guide outlines a framework for successful disability-inclusive disaster risk reduction programming. It is based on the experience of CBM and its partners in implementing community-based disaster risk reduction programs in some of the most flood-affected communities in Bangladesh. The model puts people with disabilities at the center of disaster risk reduction. They are the agents for change, working with the community to improve local systems of disaster prevention, preparedness and response to become more accessible and inclusive.

Lived Experience of Psychosocial Disability and Social Inclusion: A Participatory Photovoice Study in Rural India and Nepal

FERNANDES, Helen Lea
CANTRILL, Stephanie
SHRESTHA, Ram, Lal
RAJ, Rachel, Belda
ALLCHIN, Becca
KAMAL, Raj
BUTCHER, Nicole
GRILLS, Nathan
2018

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Purpose: This study aimed to investigate the experiences of people living with a psychosocial disability in rural India and Nepal, and to highlight key barriers and enablers for inclusion.

 

Method: Participatory action research approaches and Photovoice methodology were employed to investigate the lived experience of 32 participants in rural India and Nepal. There were 12 participants and 4 caregivers of people with psychosocial disability from each of the two countries. Semi-structured interviews with study participants were transcribed and analysed thematically to answer the study question.

 

Results: The findings revealed themes related to various supports, meaningful engagement in activity, and community awareness. Among these categories were both enabling and impeding factors to inclusion, the presence or absence of which was typically associated with improvements or worsening of symptoms respectively.

 

Conclusions and Implications: This study underscores the need for integrated community-based approaches that are multisectoral, inclusive of family, and strengthen community responses. Photovoice was also shown to be a feasible research methodology for providing insights into the lived experience of people with psychosocial disability and for fostering their empowerment

Governmentality of disability in the context of lifelong learning in European Union policy

KAUPPILA, Aarno
KINNARI, Heikki
NIEMI, Anna-Maija
2018

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The possibility to participate in education and lifelong learning has been introduced in EU disability policy in recent decades as one of the key means to improve the socioeconomic position of disabled persons. Simultaneously, lifelong learning has been developed as the defining concept of EU education policy to increase social cohesion and economic competitiveness. However, the education, employment rate and socioeconomic status of disabled persons have remained far below the EU average. In this article, we theo- rize governmentality to explore (1) how EU lifelong learning and disability policy discourses constitute and govern disabled persons and (2) how disabled persons are positioned in the policy dis- courses. The data consist of the most relevant EU policy documents concerning lifelong learning and disability policy in the twenty-first century. We argue that the policies constitute and govern disabled persons as a group who do not fulfil the premises set for the lifelong learner, and that consequently, policy dis- courses marginalize disabled persons instead.

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