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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.

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.

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.

Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Excluded from the Excluded: People with Intellectual Disabilities in (and out of) Official Development Assistance

Inclusion International
2020

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This report from Inclusion International analyzes data available through the Organization for Economic Cooperation and Development (OECD) Development Assistance Committee (DAC)’s Creditor Reporting System (CRS), which reveals that mainstream development projects fail to include people with intellectual disabilities, and in many cases use project methodologies that promote segregation and other human rights violations.

 

Analysis of ODA data from 2014 to 2018 found that 99.98% of ODA funding did not include people with intellectual disabilities, that 36% of the ODA projects that did include people with intellectual disabilities were not CRPD-compliant, and that only 2% of aid relevant to people with intellectual disabilities and their families was delivered through OPDs.

 

This report urges action from donors to ensure that the commitment to disability-inclusive development under Article 32 of the CRPD is also fulfilled for people with intellectual disabilities, and sets out recommendations for funders to ensure CRPD-compliance and inclusion in the projects they support.

Funding ≠ Inclusion: Segregation and CRPD Non-Compliance in Official Development Assistance

Inclusion International
November 2020

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This two-page summary resource compiles key data on the CRPD-compliance of Official Development Assistance (ODA)-funded programmes. This analysis was originally published in Inclusion International's 2020 report, Excluded from the Excluded, which revealed that 36% of projects that included people with intellectual disabilities in 2018 used methodologies that promoted segregation.

 

This summary resource profiles key data on the CRPD compliance of ODA-funded programme methodologies by thematic area - including livelihoods, education, emergency response, and service provision programmes. The summary resource also shares key recommendations for organizations implementing programmes to ensure CRPD-compliance.

No one left behind? Exclusion of People with Intellectual Disabilities in Official Development Assistance

Inclusion International
November 2020

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This one-page factsheet presents key data from Inclusion International's 2020 report "Excluded from the Excluded," which revealed that people with intellectual disabilities are excluded from 99.98% of Official Development Assistance (ODA)-funded programmes. The factsheet also shares key recommendations for funders to ensure that no one is left behind by ODA funding.

Segregated education as a challenge to inclusive processes: a total population study of Swedish teachers’ views on education for pupils with intellectual disability

GÖRANSSON, Kerstin
BENGTSSON, Karin
HANSSON, Susanne
KLANG, Nina
LINDQVIST, Gunilla
NILHOLM, Claes
2020

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Many pupils with disabilities receive schooling in segregated contexts, such as special classes or special schools. Furthermore, the percentage of pupils educated in segregated settings has increased in many European countries. Studies suggest that there is high commitment to the general ideology of inclusive education among teachers in ‘regular’ education in many countries. This survey study investigates the views of teachers in segregated types of school about education. A questionnaire was sent out, in 2016, to all Swedish teachers (N = 2871, response rate 57.7%) working full time in special classes for pupils with intellectual disability (ID). On a general level results show that there is a strong commitment to preserving a segregated school setting for pupils with ID, a limited desire to cooperate with colleagues from ‘regular schools’ and a view that schooling and teaching are not quite compatible with the idea of inclusive education. The results highlight the importance of investigating processes of resistance within segregated schools to the development of inclusive schools and education systems. We argue that, while research and debate about inclusive education are important, both are insufficient without analyses of existing types of segregated schooling.

What I think of school: perceptions of school by people with intellectual disabilities

VALENTIM, António
VALENTIM, Joaquim Pires
2019

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For people with intellectual disabilities who do not enter the labour market, school is usually the main chapter of their socialization with the wider society. Nevertheless, little is known about their long-term perceptions of this period. We conducted interviews and focus groups on the school experiences of 16 Portuguese adults with intellectual disabilities. Results show differences between older and younger participants in their accounts of social relations and educational methods, which result from changes in special educational policies in Portugal. Overall, members of both groups evaluate their school experience positively. Our results indicate that although there is a move towards more inclusive schools, discrimination is still prevalent. These results are discussed in terms of their psychosocial consequences, as well as their implications for educational policies, and inclusion. This study contributes to a better understanding of the school experiences of people with intellectual disabilities and how policies impact them.

A Document Review of Exclusionary Practices in the Context of Australian School Education Policy

IACONO,Teresa
KEEFFE, Mary
KENNY, Amanda
MCKINSTRY, Carol
2019

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Internationally, there is a commitment to inclusive education for students with disability. In Australia, equality of access to mainstream schools is a key policy feature, with educational exclusion of children with disability being unlawful. In this review, the aim was to identify and analyze contemporary documents that point to failures in inclusive policy and legislation in Australia and the state of Victoria by demonstrating educational exclusion of school students with disability. A search of the gray literature was conducted to identify relevant documents from 2010 to 2017. Reference lists of retrieved documents were also searched for other sources. The review included 23 documents and findings demonstrated that the needs of children and families are often not met, with a disconnection evident between inclusive educational policy, legislation, and practices that exclude children with disability from mainstream education. Restrictive practices and gatekeeping act to dissuade families from enrolling children in mainstream education, with many seeking enrolment in special schools. However, concerns with special school practices, such as the use of restrictive interventions have been documented. Parents have resorted to homeschooling, with associated emotional and economic consequences. Tensions between schools and parents were evident, with parents not always having the opportunity to be fully involved in decision-making processes and planning. The key finding of this review was a clear gap between policy and legislative intentions and practices in schools. Lack of clarity on reasonable adjustments and an underpinning research evidence base to policy results in schools being left to develop their own practices. Strong leadership is needed from principals, and a whole of school commitment, to traverse policy practice gaps that continue to impact on the ability of children with disability to be well-supported in accessing mainstream schools.

Eating together as a social network intervention for people with mild intellectual disabilities: a theory-based evaluation

KRUITHOF, Kasper
SUURMOND, Jeanine
HARTING, Janneke
2018

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Purpose: People with mild intellectual disabilities (MID) generally live independently among the wider community. This can result in social exclusion and feelings of loneliness. Therefore, social work organizations aim to socially include people with MID through organizing activities in neighbourhoods that should lead to enlarged networks and increased societal participation. The “Communal Table” is such a, group-orientated, intervention that organizes monthly dinners in Amsterdam, the Netherlands. Because little is known about the effective- ness of interventions aiming to bring about social inclusion for people with MID we explored which types of participants were reached and whether and how the intervention brought about the intended outcomes.

 

Methods: We performed a theory-based evaluation, using participatory observations and qualitative interviews (n = 19). The Communal Table attracted a diverse and loyal group of participants.

 

Results: We distinguished four types of participants—lonely participants, activist participants, satisfied participants and calculating participants—whose pre-existing networks played a significant role in their individual needs for support and the outcomes of the intervention. Outcomes reported included experiences of conviviality and warmth, temporary relief of underlying problems and an overall positive opinion about the intervention, but network enlargement or increased societal participation were not reported.

 

Conclusions: Our findings suggest that social network interventions for people with MID should be tailored to participants’ pre-existing networks and related individual needs to be successful.

Adolescents with disabilities: Enhancing resilience and delivering inclusive development

JONES, Nicola
PRESLER-MARSHALL, Elizabeth
STAVROPOLULOU, Maria
July 2018

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This report takes stock of evidence from LMICs, drawing on findings from a thematic evidence review combined with emerging findings from the Gender and Adolescence: Global Evidence (GAGE) survey and qualitative research baseline studies in Bangladesh, Ethiopia, Jordan and Palestine. These interviews involved more than 6,000 adolescents and their caregivers – including approximately 600 girls and boys with physical, visual, hearing or intellectual impairments, alongside service providers and policy actors. The report draws attention to the multiple and intersecting capabilities that need to be supported in order for adolescents with disabilities in LMICs to reach their full potential. It goes beyond a focus on their access to education and health services, and also considers their rights to psychosocial wellbeing, protection from violence, mobility and opportunities to participate within their communities, as well the skills, assets and support they need to become economically independent once they transition into adulthood. 

Collaboration in Inclusive Research: Competencies Considered Important for People With and Without Intellectual Disabilities

EMBREGTS, Petri J C M
TAMINIAU, Elsbeth F
HEERKENS, Luciënne
SCHIPPERS, Alice P
VAN HOVE, Geert
2018

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With inclusive research being an emerging field of interest, there is growing recognition that establishing collaborative relationships between researchers with and without ID entails specific demands. However, since studies on collaboration in inclusive research merely provide individual reports on experiences and challenges in one particular research project, building a shared knowledge base of concrete competencies considered important for those involved merits attention. This study contributes to a shared knowledge base in asking people with and without ID with (experiential) knowledge of inclusive research for competencies they consider important in collaborating in inclusive research in general, that is, without reference to a specific research project they participated in. Researchers with and without ID, coaches, policy makers, and teachers involved in the education of people with ID participated in this study. Data were collected from a focus group, individual interviews, and expert meetings. Qualitative analysis was carried out

immediately after each moment of data collection, providing the use of increasing insights in each consecutive phase of data collection. Participants describe that establishing collaborative relationships between researchers with and without ID in inclusive research requires the commitment of both parties. They mentioned concrete competencies they consider important for people with and without ID to collaborate in inclusive research in the categories: building a mutual relationship, communicating, achieving a collaboration in which everyone involved can contribute, being aware of skills and developmental needs, and being aware of impact. Clearly, describing competencies for people with and without ID is not intended to exclude anyone who does not possess these competencies from collaboration in inclusive research. However to avoid “tokenism,” this study might contribute to effective participation of people with ID in inclusive research in providing concrete competencies considered important in collaboration.

African Journal of Disability Vol 7 (2018)

2018

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This journal provides

  • Nineteen original research articles on a variety of topics including the cost of raising a child with autism, experiences of care givers to stroke survivors, dyslexic's learning experiences, communication rehabilitation, disability and food security, hearing children of deaf parents and rehabilitation of stroke survivors, disability policy, learning for deaf learners, aquatic based interventions for children with cerebral palsy, evaluation of community based rehabilitation programmes, the impact of stroke and barriers to the implementation of inclusive education.
  • Seven review articles: Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?; The benefits of hydrotherapy to patients with spinal cord injuries; Simple ideas that work: Celebrating development in persons with profound intellectual and multiple disabilities; The relationship between social support and participation in stroke: A systematic review; Parents of children with disabilities: A systematic review of parenting interventions and self-efficacy; Implementation of the 2006 Convention on the Rights of Persons with Disabilities in Zimbabwe: A review; Part 1: A review of using photovoice as a disability research method: Implications for eliciting the experiences of persons with disabilities on the Community Based Rehabilitation programme in Namibia
  • There is an opinion paper entitled - Deafening silence on a vital issue: The World Health Organization has ignored the sexuality of persons with disabilities
  •  There is a case study - Lessons from the pilot of a mobile application to map assistive technology suppliers in Africa

The Journal of Mental Health Training, Education and Practice, vol.12, no.4 Special Issue - Mental health pathways for people with intellectual disabilities: the education, training and practice implications

CHARNOCK, David
WRIGHT, Nicola
Eds
November 2017

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"This special edition aims to address some of the complexities and challenges faced in mainstream mental health services in three ways. First, to highlight the specific needs of people with intellectual disabilities and mental health problems. Second, to promote the importance of interdisciplinary working and learning in relation to mental wellbeing and intellectual disability, showcasing innovative approaches to care and finally, to offer a voice to specialists from intellectual disability practice and research to foster practical and conceptual thinking in relation to this group of service users"

There is a freely accessible editorial and there are six papers:

  • People with intellectual disabilities accessing mainstream mental health services: some facts, features and professional considerations
  • Psychiatry and intellectual disabilities: navigating complexity and context
  • Development and dissemination of a core competency framework
  • Mental health staff views on improving burnout and mental toughness
  • Using wordless books to support clinical consultations
  • Actors with intellectual disabilities in mental health simulation training

Full articles are not free.

Everybody Matters: Good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

Van SLOBBE, Caroline
November 2017

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This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

School and classroom disabilities inclusion guide for low- and middle-income countries

BULAT, Jennae
HAYES, Anne
et al
January 2017

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This guide provides strategies and recommendations for developing inclusive classrooms and schools. We specifically address the needs of Sub-Saharan African countries, which lack the resources for implementing inclusive education. However, our strategies and recommendations can be equally useful in other contexts where inclusive education practices have not yet been adopted. Strategies for enhancing existing school and classroom environment and instruction include: modify the physical environment; modify classroom managment strategies; ensure social inclusion; adopt best instructional practices; apply strategies for students with sensory disabilities; and use assistive technologies. Strategies for adopting response to intervention include: tier by tier implementation; individualised education plans; and planning for school wide adoption of inclusive practices and a multilevel system of support.

 

 

Global report: Self-Advocacy for inclusion

INCLUSION INTERNATIONAL
November 2016

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Across the Inclusion International network, many individuals and organisations took part in workshops, surveys and interviews to report:

  • what self-advocacy means to them
  • what good support is 
  • how organisations can be more inclusive
  • the vital role that families play in empowering self-advocacy.

This report provides a snapshot of work, and has some useful information for self-advocates, supporters, organisations and families. As well as containing the results from the global survey, interviews and workshops, this report also provides some useful guidance for anyone who wants to make the world more inclusive for people with intellectual disabilities.

 

A website (www.selfadvocacyportal.com) has been developed to share good practice and resources.

An Opportunity for Charity? A Catholic Tradition in Understanding Disability and Its Impact on Ministry

MASTERS, Anne
2016

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David Perry, the father of a boy with Down Syndrome, wrote an angry reaction to Pope Francis’ references to individuals and families living with disabilities in Amoris Laetitia. Perry is con- cerned about the limited perspective of persons with disabilities that is portrayed in the texts, which show families commended for their love and tolerance, with a lack of appreciation for the person with a disability as a person of interest, rather than an object of pity. He offers further reflections of caution and hope in response to words and actions of Pope Francis during a Mass celebrating disability awareness. Perry’s comments provide the starting point for reflecting on the image of persons with disabilities presented in Amoris Laetitia and a discussion of possibilities for charity to serve as a corrective for this and pastoral practice.

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