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Global Report on Children with Developmental Disabilities: from the margins to the mainstream

WORLD HEALTH ORGANISATION (WHO)
UNITED NATIONS CHILDREN'S FUND (UNICEF)
September 2023

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This WHO-UNICEF Global Report is a call for action to intentionally include children and young people with developmental disabilities in renewed global and country level efforts to enable transformations towards the SDGs.  It proposes priority actions to accelerate individual-, family-, community-, and society-level changes to achieve inclusion and health equity. The report makes the case for greater investment and accountability to build inclusive and responsive multisectoral care systems for children and young people with developmental disabilities. Using findings from research and practice and guided by the tenets of international human rights conventions, the report provides key insights into the state of knowledge, policy, programming, and public monitoring in respect of developmental disabilities.

No tech about us, without us

SALELKAR, Amba (IDA)
BANDUDKA, Maryam (GDI hub)
OJOK, Banya (IDA)
September 2023

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Two short talks concerning the centering of assistive technology projects on persons with disabilities and organisation of persons with disabilities (OPD/DPO). The talks are presented by a representative from IDA in India and one from IDA in Uganda. The talks are introduced by Maryam Bandudka of GDI hub. Story telling, the CPRD, communities of practice and advocacy are mentionned

 

Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023.

Systems and action to advance disability inclusive financial services in the UK

WARDROP, Pollyanna
TOWNSEND, Kathryn
September 2023

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Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023.

 

The importance of access to financial services and the challenges and work towards solutions are briefly overviewed with particular reference to innovation in the Nationwide Building Society in the UK.

Priorities identified for long term decision making concerned with services for people with disabilities were people with learning disabilities/neurodivergence/dementia, deaf people and the customer experience. The Nationwide introduced British Sgn Language (BSL) virtual interpretation for deaf people using a third party interpreter to enable independent banking. Difficulties encountered concerning risk and governance are highlighted.  Lessons learned and other progress e.g. provision of letters in BSL are briefly mentioned.

Using a community-based participatory research (CBPR) approach to explore economic empowerment for youth with disabilities in rural Uganda

GREENWOOD, Margo
BECHANGE, Stevens
EMONG, Paul
KYOSABA, Winnie
NSSAJA, David
THE PEERS RESEARCHER TEAM
August 2023

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This paper presents findings from a community-based participatory study exploring the lived experiences and key livelihood changes post-intervention of a vocational skills training for young people with disabilities in rural Uganda. Twenty-four youth with disabilities (13 female, 11 male) who had previously taken the vocational training were trained to become peer researchers and conducted 72 in-depth interviews with a more recent cohort of youth with disabilities. 

 

Social Sciences & Humanities Open, Volume 8, Issue 1, 2023, 100647

https://doi.org/10.1016/j.ssaho.2023.100647

Listen Include Respect: International Guidelines for Inclusive Participation

Inclusion International
June 2022

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The Listen Include Respect guidelines help organisations understand what they need to do to make sure people with intellectual disabilities are included in their work.

​They were written by Inclusion International and Down Syndrome International.

Over 1,500 people with intellectual disabilities and their families from almost 100 countries helped write them.

The Convention on the Rights of Persons with Disabilities (CRPD) tells us that all people with disabilities have the right to “meaningful participation.”

“Meaningful participation” is what happens when people with intellectual disabilities get everything they need to be fully included, participate equally, and feel valued.

These guidelines will help organisations to make this happen.

Inclusive Design and Accessibility of the Built Environment in Solo, Indonesia

PATRICK, Michaela
McKINNON, Iain
PUTRI PRASTIKA, Kirana
ASTERINA, Nina
FUAD, Jamil
March 2022

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This case study builds a picture of the current state of inclusion and accessibility in the built environment and infrastructure in Solo, Indonesia, through engaging local stakeholders and communities and exploring the understanding of and potential for inclusive design to address some of the current barriers to inclusion.

Surakarta (known as Solo) is a city in Central Java, Indonesia, with a population of 557,606 people. The city has a strong history of inclusion, recognised as a great place for persons with disabilities in Indonesia to live. Solo city is a leader for inclusion in Indonesia, demonstrated through city regulations on disability inclusion that pre-date the ratification of the UNCRPD. There is great progress in implementing inclusive environments in Solo with numerous accessible infrastructures, but the city would benefit from a more holistic approach, support by a robust inclusive design strategy that integrates inclusion, sustainable and resilience to ensure long-term progress. One of the aspects that makes Solo unique is its strong community relationships, community-led approaches and leadership from the community is active and valued. This is also supported within urban governance, facilitating opportunities from grassroots leadership and inclusive participation for persons with disabilities.

The research identified that to create more inclusive environments, the physical infrastructure, planning and design is crucial, but equally important are the processes of inclusion and participation. Creating robust mechanisms of community participation and leadership is fundamental to ensure long term sustainable and continued progress to being a more inclusive city.

Across Indonesia, action towards inclusive cities is supported through the work of the Inclusive Mayor’s Network in Indonesia demonstrating country-wide leadership. The findings of this case study will serve Solo as a city but also have relevance for other cities across Indonesia and support the implementation of best practices found in Solo. 

This is the third of six case studies of the Inclusive Infrastructure programme analysing the state of accessibility and inclusive design in low-resource contexts around the world. 

Towards a disability-inclusive humanitarian response in South Sudan?

FUNKE, Carolyn
DIJKZEUL, Dennis
February 2022

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The Inter-Agency Standing Committee (IASC) Guidelines on the Inclusion of Persons with Disabilities in Humanitarian Action (2019) set out four ‘must do’ actions to identify and respond to the needs and rights of persons with disabilities. This study investigates how humanitarian organizations implement the four ‘must do’ actions in South Sudan. It shows that mainstream and inclusion-focused organizations actively promote their implementation to make disability inclusion an integral part of humanitarian action, investing heavily in capacity-building and awareness-raising at all levels of the response. Nevertheless, serious gaps and challenges to disability inclusion remain. 

Engagement with Organizations of Persons with Disabilities. Learning about meaningful engagement in public health emergencies, including COVID-19

UNITED NATIONS CHILDREN'S FUND (UNICEF)
December 2021

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This report was produced under a United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD) project to support countries in designing and implementing disability-inclusive response and recovery planning for COVID-19. Throughout this project, UNICEF documented examples of good practice and learnings from partnerships with organizations of people with disabilities (OPDs) in public health emergencies, including COVID-19. The objectives of this initiative were to gain a better understanding of the factors that facilitate effective partnerships between humanitarian actors and local, regional, and national OPDs, and the challenges to be addressed.

This report presents the findings from a ‘deep dive’ undertaken by UNICEF East Asia and the Pacific Regional Office to consider the experiences in Cambodia, Indonesia, the Lao People’s Democratic Republic, Malaysia, Myanmar, the Philippines and the Pacific. The target audience for this report includes OPDs and humanitarian actors at global, regional, and country levels.

Consequences of Exclusion: A Situation Report on Organisations of People with Disabilities and COVID-19 in Bangladesh, Nigeria, and Zimbabwe

September 2021

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The COVID-19 pandemic has exacerbated inequalities and barriers to social inclusion for people with disabilities. These experiences of social exclusion have been feltto an even greater extent by women with disabilities and under-represented groups of people with disabilities, leading to a range of effects on the operations and priorities of OPDs. To address a critical gap in the evidence base, the Disability Inclusion Helpdesk carried out a rapid assessment of the role of OPDs during the pandemic, and how the pandemic has affected OPDs’ operations and priorities.

A Global Agenda for Inclusive Recovery: Ensuring People with Intellectual Disabilities and Families are Included in a Post-COVID World

Inclusion International
June 2021

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This report documents the experience of exclusion of people with intellectual disabilities and their families during the COVID-19 pandemic. These experiences reveal pre-existing structural inequalities that affected the lives of people with intellectual disabilities and their families before COVID-19, during the pandemic, and beyond, and this report raises up the voices of those most excluded in a time of global crisis and demands an inclusive COVID-19 recovery.

 

This report includes the experiences of people with intellectual disabilities and families across eight different issue areas. Across these themes, we examined how and why people with intellectual disabilities were left out and excluded in pandemic responses, what pre-existing conditions and inequalities contributed to their vulnerability and exclusion, and how future policy structures could begin to address both this immediate and systemic exclusion.

 

Together, these experiences and policy solutions form our global agenda for inclusive COVID-19 recovery, an action plan to ensure that government efforts to ‘build back better’ are inclusive of people with intellectual disabilities and their families.

Vihiga county disability-inclusive budget tracking

DEVELOPMENT INITIATIVES
June 2021

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This briefing tracks the inclusivity of Vihiga county budgets from financial years (FY) 2016–17 to 2020–21 towards persons with disabilities. It begins with an overview of disability prevalence in the county, then looks at county investments in disability inclusion. It concludes by looking at the critical financial gaps in the disability sector and providing actionable recommendations to be taken up by both the county government and disabled persons organisations (DPOs).

Trans Nzoia county disability-inclusive budget tracking

DEVELOPMENT INITIATIVES
June 2021

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This is part of a series of briefings that track the disability inclusivity of county budgets. In this briefing, we present the inclusivity of Trans Nzoia County budgets towards persons with disabilities between financial years (FY) 2016–17 and 2020–21. It should be noted that this briefing has utilised data from only three FYs, as opposed to five as planned, due to the unavailability of budget data. The three FYs with available budget data are FY2017–18, FY2018–19 and FY2020–21. For the two FYs without budget data, we have used projections from the previous years.

Kakamega county disability-inclusive budget tracking

DEVELOPMENT INITIATIVES
June 2021

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This briefing tracks the inclusivity of Kakamega county budgets towards persons with disabilities from financial year (FY) 2016–17 to 2020–21. It begins with an overview of disability prevalence in the county, and then looks at county investments on disability inclusion. It concludes by looking at the critical financial gaps in the disability sector and providing actionable recommendations to be taken up by both the county government and persons with disabilities.

Bungoma county disability-inclusive budget tracking

DEVELOPMENT INITIATIVES
June 2021

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This briefing presents research that was undertaken as part of Development Initiatives’ work on data to support disability inclusion. It is part of a series of publications that track disability inclusion in county budgets in Kenya. This briefing looks at the inclusivity of Bungoma county budgets towards persons with disabilities between the financial years (FY) 2016–17 and 2020–21. It begins with an overview of the disability prevalence rate in the county, then looks at county investments towards disability inclusion. It concludes by outlining the critical financial gaps in the disability sector and provides actionable recommendations for both the county government and disabled persons organisations (DPOs).

Busia county disability-inclusive budget tracking

DEVELOPMENT INITIATIVES
June 2021

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This briefing tracks the inclusivity of Busia county budgets from financial years (FY) 2016–17 to 2020–21 towards persons with disabilities. It begins with an overview of disability prevalence in the county, and then looks at county investments in disability inclusion. It concludes by looking at the critical financial gaps in the disability sector and providing actionable recommendations to be taken up by both the county government and disabled persons organisations (DPOs).

A Swedish cultural adaptation of the participation questionnaire Functional Scale of the Disability Evaluation System – Child version

AXELSSON, Anna Karin
ULLENHAG, Anna
ÖDMAN, Pia
2021

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Purpose: The aim was to culturally validate a questionnaire about children’s/youth’s participation to be used in a Swedish context.


Methods: FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed.

 

Results: The interviews provided support for the questionnaire’s relevance by being a tool to assess important aspects of participation, to gain insights into one’s own/the child’s participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where “parades” are unusual in Sweden and therefore removed, while “singing in choir” was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account. 

 

Conclusions: The questionnaire can be used for establishing meaningful goals and to potentially increase children’s participation.

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.

“Give us the chance to be part of you, We want our voices to be heard”: Assistive Technology as a mediator of participation in (formal and informal) citizenship activities for persons with disabilities who are slum dwellers in Freetown, Sierra Leone

AUSTIN, Vicki
HOLLOWAY, Cathy
OSSUL VERMEHREN, Ignacia
DUMBAYA, ABS
BARBARESCHI, Giulia
WALKER, Julian
May 2021

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The importance of assistive technology (AT) is gaining recognition, with the World Health Organisation (WHO) set to publish a Global Report in 2022. Yet little is understood about access for the poorest, or the potential of AT to enable this group to participate in the activities of citizenship; both formal and informal. The aim of this qualitative study was to explore AT as mediator of participation in citizenship for persons with disabilities who live in two informal settlements in Freetown, Sierra Leone (SL). The paper presents evidence from 16 participant and 5 stakeholder interviews; 5 focus groups and 4 events; combining this with the findings of a house-to-house AT survey; and two national studies—a country capacity assessment and an informal markets deep-dive. Despite citizenship activities being valued, a lack of AT was consistently reported and hindered participation. Stigma was also found to be a major barrier. AT access for the poorest must be addressed if citizenship participation for persons with disabilities is a genuine global intention and disability justice is to become a reality.

 

International Journal of Environmental Research and Public Health, Int. J. Environ. Res. Public Health 2021, 18(11)

https://doi.org/10.3390/ijerph18115547

Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.

 

Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).

 

Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.

 

Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.

 

Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

‘Teachers Did Not Let Me Do It.’: Disabled Children’s Experiences of Marginalisation in Regular Primary Schools in China

WANG, Yuchen
2021

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The large-scale mainstreaming of disabled children in education in China was initiated with the launching of a national policy called ‘Learning in Regular Classrooms’ in the late 1980s. More than thirty years on, and little is known about disabled children’s daily experiences in regular schools due to a lack of research that foregrounds their voices. This paper reports the main findings from an ethnographic study conducted in 4 state- funded primary schools in Shanghai involving 11 children labelled as having ‘intellectual disabilities’, 10 class teachers and 3 resource teachers. Data were collected through participant observation, semi-structured interviews, and child-friendly participatory activities, and thematically analysed to identify patterns in practices and beliefs that underpin the processes of inclusion and exclusion. The research found that the child participants were facing marginalisation in many aspects of school life with rather limited participation in decision-making. The exclusionary processes were reinforced by a prevailing special educational thinking and practice, a charitable approach to the disadvantaged in a Confucian society, and an extremely competitive and performative schooling culture. The findings address the need to hear disabled children’s voices to initiate a paradigm shift in understanding and practice to counterbalance deep-rooted barriers. The paper concludes with suggestions for future research.

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