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Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

KYEREMATENG, Joana D.A
EDUSEI, Anthony
DOGBE, Joslin A.
OPUKU, Maxwell P.
NKETSIA, William
HAMMOND, Chrales
AFRIYIE, Sally A.
September 2019

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Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.

 

Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.

 

Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.

 

Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.

 

Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.

 

 

African Journal of Disability, Vol 8, 2019

Report on the extent to which Rwanda’s implementation of the SDGs complies with its obligations under the CRPD

RWANDA UNION OF THE BLIND (RUB)
April 2019

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This report aims to examine the extent to which Rwanda’s activities aimed at achieving the goals and targets set out in the SDGs include and consider people with disabilities and comply with its commitments under the CRPD. 

Information for this report was obtained from two sources: the first source was the available documents including government policies, laws and reports, as well as a variety of other documents and reports from other sources. The second source of information was interviews conducted with people with disabilities from three different regions of the country, namely Musanze district, Nyagatare district, and the city of Kigali.

 

This report focuses on five SDGs which were selected after a series of consultations with people with disabilities and their organisations. These are:

Goal 1: End poverty in all its forms everywhere;
Goal 3: Ensure healthy lives and promote well-being for all at all ages;
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;
Goal 8: Promote sustained, inclusive and sustainable economic growth, full and productive employment and decent work for all.

Que nadie se quede atras! Primer informe nacional sobre la implementacion de los objetivos de desarrollo sostenible desde la perspectiva de la convencion sobre los derechos de las personas con despicacidad

ASOCIACION CIVIL SIN FINES DE LUCRO COMISION DE DAMAS INVIDENTES DEL PERU (CODIP)
CAMPOS SANCHEZ, Elizabeth Francisca
March 2019

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Research included a national survey (120 people), semi structured interviews, data gathering and regional workshops. Regional workshops were held in Cuzco and Arequipa in the south of the country; Chiclayo in the north, Cañete por Lima provinces; a workshop in Lima only with people with Down syndrome and another with deafblind people.

SDG 4,5,8,13,16 are particularly discussed and conclusions drawn

ASEAN hometown national guidelines compilation

Asia-Pacific Development Center on Disability (APCD)
March 2019

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The National Guidelines for the Project for ASEAN Hometown Improvement through DisabilityInclusive Communities Model: A Compilation is a consolidation of policies from 7 ASEAN countries, namely, Cambodia, Indonesia, Malaysia, Myanmar, Philippines, Thailand, and Vietnam, to provide a technical guiding document in the planning and implementation of an inclusive Hometown Improvement process.

 

Policies for each country are reported and topics covered include: situation of persons with disabilities; disability inclusive governance; accessibility for persons with disabilities; disability inclusive business; hometown improvement model; and partnership amongst ASEAN

 

Communication Matters!

Light for the World
January 2019

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The research Communication Matters! shows which obstacles persons with disabilities face in accessing public information and services. The research took place in three districts in the province of Pursat. 1171 persons with disabilities in 229 villages are reached.

Due to the research, many persons with disabilities were able to share their stories for the first time. Many persons were also found for the first time, because the team made an effort to visit everyone in the village.

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.

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

AL-EZZAWI, Hashem Khalil
ALKhafaji, Mowafaq
2019

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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)

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

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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)

Access to assistive products in Kurigram and Narsingdi, Bangladesh. Policy brief 2.

HUMANITY & INCLUSION BANGLADESH
et al
August 2018

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This ‘policy brief’ outlines findings on Assistive technology and Products (AP) needs, unmet needs and access patterns arising the Rapid Assessment of Disability (RAD) study conducted in 2016 and 2017, in partnership between the Bangladesh Bureau of Statistics (BBS) and Humanity & Inclusion (HI) Bangladesh, with technical oversight from the Nossal Institute for Global Health, University of Melbourne, Australia. The study was part of the HI project: Towards Global Health: Strengthening the Rehabilitation Sector through Civil Society funded by the European Union. Findings from the 4254 adults surveyed in the two districts are reported here.

 

The purpose of this component of the RAD study was to learn about the usage of AP, characteristics of AP users, barriers to use of AP, unmet and met needs of AP, and to highlight major policy implications for AP service provision, in two target areas of Kurigram and Narsingdi. The survey includes an adapted version of Washington Group (WG) ‘short set’ of Disability Questions. A modified version of the WHO’s draft Assistive Technology Assessment Tool (needs module) – or the ‘ATA-needs’, was also implemented. Findings from this study also helped modify and improve the draft ATA-needs tool

Missing millions: How older people with disabilities are excluded from humanitarian response

SHEPPARD, Phillip
POLACK, Sarah
McGIVERN, Madeleine
July 2018

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The aim of this study was to explore the experiences of older people with disabilities across a range of humanitarian settings, considering:

  • whether older people with disabilities have additional needs and challenges accessing humanitarian assistance and protection
  • what factors facilitate or limit access by older people with disabilities to humanitarian assistance and protection
  • to what extent is humanitarian response inclusive of older people with disabilities

A systematic literature review of published studies was conducted. Key online humanitarian guidelines were explored to review how far they explicitly address older people with disabilities. Data from six population-based disability surveys comparing the living situation of older people with and without disabilities were analysed. These included databases from two crises-affected populations in Haiti (post-earthquake) and Palestine. Data from four non-humanitarian settings was also reviewed to explore more broadly the situation for older people with disabilities – India, Guatemala, Cameroon and Nepal. Interviews were held with older people with disabilities, members of their families and local key informants in two conflict-affected populations in Ndutu and Mtendeli refugee camps in Western Tanzania, and Donetsk and Luhansk regions of Eastern Ukraine to find out about their experiences. Staff of five international agencies working in humanitarian response were also interviewed. 

 

Findings highlight particular issues facing older people with disabilities in humanitarian crises: more risk escaping from danger;  barriers to accessing social protection and work; barriers to accessing health and rehabilitation services; barriers to accessing food and other essentials; unsuitable housing and poor living conditions;  insecurity and discrimination; threats to dignity and independence; social isolation and loneliness; risks to mental health; and missing from humanitarian response.

 

A table brings together the findings from the different components of the research to show the needs, risks, barriers and enablers for older people with disabilities identified in the research. Recommendations are provided to humanitarian donors, policy makers and practitioners

Inclusive service delivery for persons with disabilities in Mongolia

MAMUTKULOV, Raushenbek
ASIAN DEVELOPMENT BANK (ADB)
2018

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The Ensuring Inclusiveness and Service Delivery for Persons with Disabilities (PWDs) project in Mongolia aims to ensure access to improved services, employment opportunities, and more support through social welfare reform for PWDs.

Estimates of disability prevalence in Mongolia tend to be underreported, especially among older people, girls, and women, thus leaving a substantial number of persons with disabilities (PWDs) without the necessary services and protection. Early identification of disability is inadequate and current disability assessments follow an outdated, narrow medical approach. Many people perceive PWDs to be incapable of living independently and a burden to society.

A brief overview is given of a project aiming to ensure access to services and employment for PWDs to increase their autonomy and contribution to the economy and society in general.

(ADB Brief, Social Protection Brief, No.91)

Alternative report on the implementation of the 2030 programm in Niger

NIGER FEDERATION OF DISABLED PEOPLE (FNPH)
February 2018

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This report on the assessment of progress made in Niger in the implementation of the 2030 program on the case of disabled persons was prepared by The Niger Federation of Disabled People (FNPH). The FNPH was supported by the West African Federation of Disabled People's Associations (FOAPH) and its strategic partners such as: the International Disability Alliance (IDA), Humanity and Inclusion (HI) and CBM.

 

It is the result of participatory work drawing on consultations with relevant stakeholders (Human Rights Organizations, Organizations for Disabled People (DPOs) and development partners). It is based on the most recent data available on disability, from 2014 to 2017.

 

This report examines, in detail, the implementation of four (04) Sustainable Development Goals which include: SDGs 4, 8, 10 and 16  and focuses on the following topics:

 

  • Education – Vocational training ;         
  • Work and Employment;
  • Equality and non-discrimination;
  • Protection against all kinds of violence and abuse;
  • Access to justice in equality conditions;
  • Participation in decision-making;
  • Public access to information and protection of basic freedoms.

Disability and vocational rehabilitation in rural settings

HARLEY, Debra
et al
2018

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A graduate student textbook offered in 39 chapters, each with different authors and subjects. Abstracts, test questions and citations are freely available on-line. Full text is charged for. The book surveys rehabilitation and vocational programs aiding persons with disabilities in remote and developing areas in the U.S. and abroad. Contributors discuss longstanding challenges to these communities, most notably economic and environmental obstacles and ongoing barriers to service delivery, as well as their resilience and strengths. Considerations are largely of the US but there is a chapter on each of Asia and Pacific region, Australasia, Canada, Mexico, India, Turkey, Colombia and the UK. 

 

Childhood disability in Malaysia: a study of knowledge, attitudes and practices

MOORE, Katie
BEDFORD, Juliet
November 2017

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This study was carried out to assess the knowledge, attitudes and practices of society towards children with disabilities, the children themselves, and their peers in Malaysia. The study took place in Selangor, Kelantan, Sabah and Sarawak. There were 756 total respondents/participants including government ministries, community members, service providers, care givers and children and adolescents both with and without disabilities. 

Towards Inclusion - A guide for organisations and practitioners

VAN EK, Vera
SCHOT, Sander
2017

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This guide is the result of collaboration between Light for the World (LFTW), Mission East (ME), and ICCO Cooperation.

Based on decades of experience of working with the most marginalized and excluded communities, the three organizations cooperated to record their experiences in a publication which can be used in a variety of relief and development contexts. ‘Towards Inclusion’ is designed to be an easy to use reference for organizational and program/project development with a focus on gender responsiveness and disability inclusion.

The guide is made up of three parts:
• the first part guides users through the process of organizational self-assessment to determine readiness to change and identify key steps towards becoming a more inclusive organization.
• the second part introduces the ACAP framework, as a means of improving inclusion in programming via Access, Communication, Attitude and Participation. A range of tools for measuring and improving inclusion at all stages of the project cycle are provided.
• the third part provides guidelines for the people or ‘change facilitators’ who will guide organizations through the process of change towards becoming more inclusive.

The publication can be found at “Towards Inclusion Guide” and the accessible version of the publication can be downloaded. Both are free of charge.

Possibilities for organisation trainings and/or webinars on the practical application of the guide are under consideration. Contact ACAP@gmail.com.

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

ANGELOVNA-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"

Human rights: a reality for all - Council of Europe Disability Strategy 2017-2023 (2017)

THE COUNCIL OF EUROPE
March 2017

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The overall goal of the Council of Europe Disability Strategy (2017-2023) is to achieve equality, dignity and equal opportunities for persons with disabilities in specific areas where the Council of Europe can make an input. In order to ensure independence, freedom of choice, full and active participation in all areas of life and society, the strategy highlights work and activities required in five priority areas:

1. Equality and non-discrimination

2. Awareness raising

3. Accessibility

4. Equal recognition before the law

5. Freedom from exploitation, violence and abuse

The strategy also proposes action targeting five cross-cutting themes: participation, co-operation and co-ordination, universal design and reasonable accommodation, gender equality perspective, multiple discrimination and education and training. 

Progress Report on the implementation of the European Disability Strategy (2010-2020)

EUROPEAN COMMISSION
February 2017

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The Strategy is the main instrument to support the EU's implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD). Progress in all eight areas of the strategy is reported: accessibility, participation, equality, employment, education and training, social protection, health and external action. Initiatives such as the Directive on Web Accessibility, the proposal for a European Accessibility Act, the EU Disability Card project (being piloted in 8 Member States) and provisions in the Erasmus+ programme (allowing better mobility for students with disabilities) are highlighted. 

 

This report presents progress achieved in the first five years of the Strategy and assesses implementation. Many stakeholders have contributed to this work. The United Nations reviewed how the EU has been implementing its obligations under the UNCRPD3, and issued Concluding Observations with concrete recommendations for follow-up. These contain guidance on priority issues while also highlighting the steps already taken (see Annex 3). The European Parliament and the European Economic and Social Committee subsequently prepared their own reports on the implementation of the UNCRPD, while civil society organisations provided analysis and proposals (see Annex 4). The Commission also launched a public consultation to collect views from a broad range of stakeholders on the current situation of persons with disabilities and the impact of the Strategy so far, gathering more than 1,500 contributions (see Annex 1). This report also looks at the role of the supporting instruments and at the implementation of the UNCRPD within the EU institutions. Finally, it looks ahead at how the Strategy will continue to deliver on its objectives. In addition, the report includes a comprehensive and up-to-date overview of EU legal acts with an impact on disability matters (Annex 5)

 

SWD(2017) 29 final

Network on inclusive employment of people with disabilities

SHEKULO TOV
2017

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The establishment of an international digital network on inclusive employment of people with disabilities is proposed.

The main goals of this digital network are to:

  • Enhance strategic networking, engagement and dialogue among the different stakeholders around the world
  • Disseminate cutting edge knowledge, good practice and innovations through diverse formats
  • Actively involve people with disabilities in the promoting this issue in all levels.

Activities of the network to include: an electronic mailing list; a monthly webinar and presentations of new research findings and evidences and of policy papers and information material

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