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Medication management for people with disabilities

SINGLECARE
September 2019

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This guide provides tips for people with disabilities and their caregivers to properly handle prescriptions and manage medications. Practical advice is given on:

  • How to read medication labels
  • Managing medications at home
  • Medication strategies for people with visual impairments
  • Medication management for people with a physical disability and/or mobility limitations
  • Medication management for people with intellectual disabilities
  • Tips for effective medication management as the caregiver of a person with a disability

India inclusion summit 2018

March 2019

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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

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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

 

Informe regional America Latina Bajo El enfoque de la convencion sobre los derechos de las personas con discapicidad

March 2019

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Este primer informe regional de la situación de las personas con discapacidad en América Latina ha sido elaborado por RIADIS con la finalidad de realizar un primer acercamiento al estado de la implementación de los ODS bajo el enfoque de la CDPD y la reformulación del Programa de Acción del Decenio de la Organización de los Estados Americanos (OEA). En este sentido, el informe pretende identificar los avances y buenas prácticas que se encuentran realizando los gobiernos de la región en materia de la aplicación de la CDPD a través de la implementación de los ODS en la región, así como establecer las oportunidades y los desafíos que se presentan para que las organizaciones de personas con discapacidad puedan seguir conquistando nuevos espacios y haciendo efectivo el ejercicio pleno de sus derechos. El presente informe se enfoca en diez principales áreas temáticas, identificadas como prioritarias por las personas con discapacidad de la región, quienes aportaron al abordaje de las mismas, tanto a través de las respuestas que se recopilaron de la encuesta inicial, como a través de las contribuciones grupales e individuales obtenidas en el taller de revisión del borrador del informe regional.

 

Las diez áreas temáticas que se abordan en el presente informe son las siguientes: 1. Educación inclusiva 2. Mujeres con discapacidad 3. Personas indígenas con discapacidad 4. Inclusión laboral de las personas con discapacidad 5. Reducción de riesgos de desastres y acción humanitaria 6. Accesibilidad 7. Acceso a la justicia 8. Derecho a vivir de forma independiente y ser incluido en la comunidad 9. Recopilación de datos 10. Participación de las personas con discapacidad

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.

Older people’s perceptions of health and wellbeing in rapidly ageing low- and middle-income countries

ALBONE, Rachel
2019

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This report presents the findings of an analysis of data collected by HelpAge International and its network members using HelpAge’s Health Outcomes Tool. The tool is designed to collect data to better understand health and care in older age, and to measure the impact of HelpAge’s health and care programmes. It was developed in response to the challenges posed by the lack of data on older people’s health and care, particularly in low- and middle-income countries, and the resulting lack of understanding about how best to provide age, gender and disability sensitive services for older women and men. The tool was used between 2014 and 2017 in nine low- and middle-income countries across Africa, Asia and Latin America,1 and gathered data from over 3,000 older people. The findings are presented here in the context of the current debate and evidence on older people’s right to health.

This report explores three different areas in relation to ageing and health: older people’s access to health services; availability of care and support; and the impact both health, and care and support services have on older people’s health status, functional ability and wellbeing.

 

 

 

3rd World Disability & Rehabilitation Conference (WDRC 2018) - Book of abstracts

O'CONNOR, Loren
Ed
November 2018

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The 3rd World Disability & Rehabilitation Conference 2018 was held from 12th and 13th November 2018 in Kuala Lumpur, Malaysia. People with disabilities and researchers, practitioners, policy makers, industry experts, university faculty and organizations along with advocates and volunteers working with people with disabilities participated and presented their original and unpublished results of conceptual, constructive, empirical, experimental, experiential or theoretical work through abstract and poster presentation. Total 33 participants presented their abstract and poster throughout this conference. The theme of WDRC 2018 was “Global advocacy and rights of people with disabilities”

Mainstreaming disability and making WASH programmes inclusive

ENFIELD, Sue
October 2018

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This rapid review synthesises evidence and literature on approaches that have worked in mainstreaming the disability agenda in WASH programming. It begins by exploring the overview of approaches to including disabled people in WASH programming and continues to discuss the barriers to access and consequences. In this section, there are specific and important WASH issues being emphasised including Menstural Hygiene Management (MHM), incontinence, Lymphatic Filariasis and Leprosy and high-density populations. Final section of the review discuss about practical guidance for inclusive WASH programming including the cost of inclusion that needs to be taken into consideration.

 

K4D helpdesk reports provide summaries of current research, evidence and lessons learned. This report was commissioned by the UK Department for International Development

Disability in humanitarian context: A case study from Iraq

HUMANITY & INCLUSION (HI)
June 2018

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This brief presents and addresses some of the challenges that prevent internally displaced persons with disabilities and other vulnerable population groups (elderly, injured persons, pregnant women, etc.) in camp settings from accessing humanitarian services in Iraq and impede on the development of an inclusive humanitarian response. Examples drawn from Handicap International’s experience working in Iraq with persons with disabilities and vulnerable population groups further illustrate those challenges. The recommendations to the humanitarian community provided in this brief aim at improving the protection of persons with disabilities and their inclusion in the humanitarian response

Exploring the links between water, sanitation and hygiene and disability; Results from a case-control study in Guatemala

KUPER, Hannah
et al
June 2018

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A case-control study was conducted, nested within a national survey. The study included 707 people with disabilities, and 465 age- and sex-matched controls without disabilities. Participants reported on WASH access at the household and individual level. A sub-set of 121 cases and 104 controls completed a newly designed, in-depth WASH questionnaire.

Learning From Experience: Guidelines for locally sourced and cost-effective strategies for hygiene at home for people with high support needs.

World Vision/CBM Australia
May 2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HYGIENE AT HOME FOR PEOPLE WITH HIGH SUPPORT NEEDS
This document is one of two developed in the Jaffna District and describes strategies that used to assist households and individuals in hygiene tasks at home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka.

NOTE: The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

“They Stay until They Die” A lifetime of isolation and neglect in institutions for people with disabilities in Brazil

RIOS-ESPINOSA, Carlos
et al
May 2018

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This report documents a range of abuses against children and adults with disabilities in residential institutions in Brazil. The research is based on direct observations during visits to 19 institutions (known in Brazil as shelters and care homes), including 8 for children, as well as 5 inclusive residences for people with disabilities. In addition, Human Rights Watch researchers interviewed 171 people, including children with disabilities and their families, adults with disabilities in institutions, disability rights advocates, representatives of non–governmental organizations, including disabled persons organizations, staff in institutions, and government officials.

 

Research was carried out between November 2016 and March 2018 in the states of São Paulo (including São Paulo and Campinas), Rio de Janeiro (including Rio de Janeiro, Duque de Caxias, Niteroi and Nova Friburgo), Bahia (Salvador) and Distrito Federal (including Brasilia and Ceilândia).

Household expenditure on leprosy outpatient services in the Indian health system: A comparative study.

TIWARI, Ajun
et al
January 2018

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The primary objective of this study is to estimate the expenditure in primary (outpatient) care incurred by leprosy patients in two different health system settings in India. The secondary objective is to compare the effect of the health systems on consumer behaviour and practices. 

The study followed a cross-sectional design, where a cohort from the Union Territory of DNH (an administrative division ruled directly by the federal government) was compared with a cohort from Umbergaon block of Valsad district, Gujarat, India. A block is the smallest administrative unit under a district. The cohorts were leprosy cases detected between April 2015 and March, 2016. A sample of 120 participants from each group was selected randomly. In the financial year of 2015–16, DNH reported 425 and Umbergaon reported 287 cases. 

A household survey was conducted between June and October, 2016 by means of a structured questionnaire collecting data on patient demographics, HH socioeconomic status, accessibility of health services, treatment seeking history and OPD expenditure. Respondents were asked to report on the last three OPD visits, either in a public or private facility, in the last 6 months. 

The costs were categorized as direct and indirect expenditure. The direct part included the expenditure on consultation, investigations and medicines & supplies. The indirect part constituted expenditure on transport, food, and days lost during illness of the patient and attendant

PLOS Neglected Tropical Diseases, January 4, 2018

https://doi.org/10.1371/journal.pntd.0006181

Learning from experience: Guidelines for locally sourced and cost-effective strategies to modify existing household toilets and water access

WORLD VISION
CBM Australia
2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HOME MODIFICATIONS FOR WASH ACCESS
This document is one of two developed in the Jaffna District and describes the strategies which were used to assist people with disabilities to access toilet and water facilities at their own home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka. Houses and toilet structures in the region were made of brick and concrete. No new toilets were built and modifications involved only minor work to existing household structures, water points and toilets.

NOTE:
The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

New sign language new(S): the globalization of sign language in the smartphone era

TANNENBAUM-BARUCHI, Caroline
FEDER-BUBIS, Paula
October 2017

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"Languages are dynamic and change over the years. Changes in sign languages have been usually initiated to accommodate the needs of the local Deaf community. With the increase in smartphone use, sign languages are influenced not only by the local Deaf community, but also by foreign Deaf people on the other side of the screen, regardless of their location. Smartphones influence the sign language itself and the Deaf community by connecting different communities of Deaf people through messages, shared information and experiences, and news delivery. The popularity of this technology among Deaf communities is a social phenomenon emerging from Deaf people themselves. Smartphones may promote the globalization of sign language, shortening distances between Deaf communities around the world"

Disability & Society, Volume 33, 2018 - Issue 2

Disability, health and human development

MITRA, Sophie
October 2017

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This book presents new research on disability, health, and wellbeing in four countries (Ethiopia, Malawi, Tanzania and Uganda) . The primary focus is empirical. It also makes a conceptual contribution as it presents a new model of disability based on the human development and capability approach. It addresses four questions: 

  • How should disability be defined to analyse and inform policies related to wellbeing?
  • What is the prevalence of functional difficulties?
  • What inequalities are associated with functional difficulties?
  • What are the economic consequences of functional difficulties? 

Detailed data analysis using large-scale household survey datasets is combined with an interactional model of disability based on Amartya Sen’s capability approach.

 

DOI 10.1057/978-1-137-53638-9

 

First of book series: the Palgrave Studies in Disability and International Development

Deaf education development programme. Young people’s consultation, Tanzania, August 2017

COWAN, Jo
September 2017

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In partnership with Deaf Child Worldwide, Childreach Tanzania delivered the Deaf Education and Development Programme (DEDP) from June 2014 to June 2017 in the Kilimanjaro Region of Tanzania. The DEDP improved the quality of life of deaf young people by:

› increasing enrolment and retention of young people in training centres

› improving sign language proficiency and communication between deaf young people and key stakeholders in their lives

› connecting deaf youth to internships and other business opportunities to support them to earn a living.

However, the DEDP highlighted many examples of deaf young people developing vocational skills, but still failing to transition from secondary school or vocational training centres into work. Phase two of this project will focus on youth employment, livelihoods and transition from school to independent living.

 

This report summarises consultation activities held with deaf young people during August 2017. The consultation explored their knowledge of the challenges they face when leaving school and their experiences of accessing information and support to help them transition to an independent life. The findings of this consultation have been hugely influential in the proposed project design for phase two. The consultation was a three-day workshop held at a community-based hub hosting a different group of young people each day. Group 1 – Young people who have left school. Group 2 – Moshi Technical School students (secondary school). Group 3 – Ghona Vocational Training Centre students

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"

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.

 

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