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A global agenda for inclusive recovery: Ensuring people with intellectual disabilities and families are Included in a post-COVID world

INCLUSION INTERNATIONAL
May 2021

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This report documents the experiences of people with intellectual disabilities and their families during COVID-19 and proposes a global agenda for inclusive COVID recovery developed by Inclusion International’s membership. The global agenda is a set of imperatives for policy and programming to ensure that “building back better” creates a more inclusive world.

Disability rights during the pandemic. A global report on findings of the COVID-19 Disability Rights Monitor

BRENNAN, Ciara Siobhan
October 2020

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This report presents the findings from a rapid global survey of persons with disabilities and other stakeholders which took place between April and August 2020. The organisations behind the study seek to “catalyse urgent action in the weeks and months to come,” as transmission rates of COVID-19 continue to rise in many countries and persons with disabilities are again subjected to restrictions which have already had severe consequences.

The report analyses over 2,100 responses to the survey from 134 countries around the world. The vast majority of responses were from individuals with disabilities and their family members. Within the questionnaire responses respondents provided more than 3,000 written testimonies documenting the experiences of persons with disabilities and their family members during the pandemic. The qualitative and quantitative data provide in-depth, comprehensive insights into the experiences of persons with disabilities and the consequences of government actions or inactions on the rights of persons with disabilities.

The report is organised around four themes which emerged during the process of analysing responses received to the survey. These themes are:

1. Inadequate measures to protect persons with disabilities in institutions

2. Significant and fatal breakdown of community supports

3. Disproportionate impact on underrepresented groups of persons with disabilities

4. Denial of access to healthcare

 

A webinar was held to mark the launch of the report

Strengthening participation of children and young people with disability in advocacy

SIMMONS, Dr. Catharine
ROBINSON, Dr. Sally
October 2014

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Participation by children and young people in advocacy and change-making can not only improve and foster positive change in their own lives, but also influence the lives of others. When young people’s participation is supported, meaningful and engaged, multiple benefits accrue; their perspectives and experiences bring a unique contribution and can result in rights-based empowerment, enacted citizenship and improved relationships. This has the potential to shape policy, to increase the relevance and responsiveness of organisations they use, and to influence change in their communities in positive ways

 

However, there are significant issues and a range of barriers that discourage, prevent or actively exclude children and young people with disability from participating. A culture of low expectations, social and cultural barriers, relationship and identity difficulties and practical hurdles exist for many young people. As a result, many are precluded from participation, particularly around change-making activities

 

This paper examines how meaningful participation of children and young people with disability in advocacy and change-making can be strengthened. In the paper CDA calls for the promotion of children and young people’s participation as active and valued community members

A guide for community health workers supporting children with disabilities

ADAMS, Mel
et al
2014

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

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

Improving Accessibility to Medical Services for Persons with Disabilities in Thailand

NUALNETR, N
SAKHORNKHAN, A
2012

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Purpose: This action research aimed at developing an action plan to improve the accessibility to home health care and assistive devices for persons with disabilities in a rural community, and to evaluate changes in the numbers of such persons who received appropriate home health care and assistive devices after a three-month implementation of the action plan.

 

Method: The study was conducted at a sub-district of Maha Sarakham Province, Thailand. The main beneficiaries were 99 persons with disabilities (mean age 55.4±18.7 years). Group meetings were organised for persons with disabilities, caregivers, and various community members. An action plan for improving the accessibility of persons with disabilities to home health care and assistive devices was collaboratively formulated and implemented for three months.

 

Results: The main strategy for improving accessibility was to increase the competency of village health volunteers in providing home health care and assistive devices to persons with disabilities. After the three-month action plan implementation, the number of persons with disabilities who received appropriate home health care, i.e. at least once a month, significantly increased from 33.3% to 72.2% (Chi-square test, P<0.01, 95% CI 18.5 to 59.3). The number of persons who received assistive devices suited to their disabilities also significantly increased from 33.3% to 58.3% (Chi-square test, P=0.03, 95% CI 3.5 to 46.5).

 

Conclusions: Under the supervision of physical therapists and/or other allied health professionals, the village health volunteer is likely to be a key person for improving the accessibility to home health care and assistive devices for personswith disabilities in a rural community.

 

Limitations: The study was limited to only one sub-district. No comparable areas were studied. Further, since the study recruited persons with disabilities from a rural community, applicability of the findings to persons with disabilities in an urban community should be considered judiciously.

The memory work trainer's manual : supporting families affected by HIV and AIDS

HEALTHLINK WORLDWIDE
NATIONAL COMMUNITY OF WOMEN LIVING WITH HIV/AIDS IN UGANDA (NACWOLA)
2005

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This manual guides trainers through a course to support parents, guardians and carers affected by HIV and AIDS, by helping them to share information, hopes and fears with their children; strengthen each child's sense of identity and belonging; plan for the future care of their children. The course is designed to be delivered to: parents and other family members living with HIV and AIDS; future guardians of children affected by HIV and AIDS; community workers and volunteers working with children and families affected by HIV and AIDS. The manual draws significantly on the experiences and ideas of NACWOLA trainers and trainees, as well as those of Healthlink Worldwide and others. The course consists of 12 modules, covering child development, parenting, communication between parents, carers, guardians and children, HIV status disclosure, coping with separation, loss and grief, planning for children's future, involving children in planning, preparation for new care arrangements, making a memory book, and related legal aspects

Orphans and vulnerable children in India : understanding the context and the response

GOLDMAN, Judith
ANASTASI, Marie-Christine
June 2003

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A report from a meeting for exchange and learning between organisations working with orphans and vulnerable children in India, looking community responses to working with this group. The experience of Plan International, Palmyrah Workers Development Society and the International HIV/AIDS Alliance was presented to the meeting. Specific responses to working with orphans and vulnerable children discussed in the report include lessons from a child participatory approach, prevention of mother-to-child transmission and the development of community action

Building resilience in children affected by HIV/AIDS

MALLMAN, Sr Silke-Andrea
2003

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This is a practical guide for caregivers and teachers consisting of a collection of ideas, theories, tasks and exercises that help understand the behaviour and feelings of children affected by HIV/AIDS. The handbook provides practical advice on how to support children who have experienced loss and death in order to help them to cope

Memory box programme : training manual

DENIS, Philippe
MAFU, Sibongile
MAKIWANE, Nokhaya
2003

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This manual aims to give community workers and volunteers a basic understanding of the psycho-social needs of children in need and the basic skills in memory-box methodology

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