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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.

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.

Disability Innovation Summit: Inclusive Interactions

GLOBAL DISABILITY INNOVATION HUB
September 2023

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Disability Innovation Summit: Inclusive Interactions [13th & 14th Sept 2023]. Bringing together global experts and new voices to share big ideas and ask the question: What next for disability innovation?

DAY 1: Sharing big ideas and powerful insights

Disability innovation today...the good, the bad, the untold

Inclusive infrastructure: can cities be inclusive?
Innovation: are ecosystems ready to scale for success?
Participation and leadership: No tech about us, without us
What fails: and what's not needed. Disability dongles, failure or learning curve
What works: and why

DAY 2: Exploring a new horizon

Disability innovation tomorrow...what next

Disability justice: a disability innovation ambition or contradiction?
Para sport: a vehicle for community level social change?
Systems Strengthening, Disability innovation and Finance: is it possible to create the mechanisms for change?
Future tech: revolutionary solutions and AI – the new face of disability inclusion?

Inclusive Workplaces Toolkit

Inclusion International
June 2022

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The Inclusive Workplaces toolkit shows employers how to make their workplaces inclusive of people with intellectual disabilities. It includes clear guidance on taking action for accessible recruitment, hiring, communication at work, organisational policies, and more, and includes templates and useful resources for employers to implement in their workplaces.

Through the Inclusion Works project, Inclusion International asked employers what help and information they needed to make their workplaces more inclusive. Employers told us that they needed tools and resources to ensure that they would have the knowledge and information to deliver good support to people with intellectual disabilities in their workplace.

People with intellectual disabilities told us what employers need to do differently to make their workplaces more inclusive. The Inclusive Workplaces guide builds on these recommendations and call for inclusion from self-advocates to create a practical tool for employers on how they can take action to create workplaces that are fully inclusive of people with intellectual disabilities.

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.

Global Disability Youth Summit 2022

GLOBAL DISABILITY SUMMIT
February 2022

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IDA, UNICEF, and the Atlas Alliance, represented by Youth Mental Health Norway, co-hosted a Youth Summit on 14 February 2022 to ensure the inclusion of youth in the Global Disability Summit. 

All planning and decision making around the Summit were led by youth with disabilities, including through the design of a novel format to ensure the participation of youth from around the globe, from local to global.

 

The Summit showcased the innovations of organizations led by youth with disabilities. Youth with disabilities at the local, regional and global levels have created groups and activities, both online and offline, fostering a sense of community, even during the COVID-19 period. Through the Summit, the youth focused on topics that they have identified to be particularly important in this regard, such as participation of youth in OPDs and youth mainstream organizations, inclusive education, deinstitutionalization and community inclusion, access to employment, climate change, new technologies, humanitarian action, access to inclusive healthcare including sexual reproductive health and mental health, among others.

 

A working group consisting of co-hosts and selected partners was responsible for developing a Youth Charter for Change - summing up and challenging the commitments

 

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. 

Accessible Sanitation in the Workplace – Important Considerations for Disability-Inclusive Employment in Nigeria and Bangladesh

Stephen Thompson
Rasak Adekoya
Utpal Mallick
Omojo Adaji
Abdur Rakib
Mark Carew
January 2022

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This paper explores the relationship between accessible sanitation and disability-inclusive employment in Bangladesh and Nigeria. Both countries have sanitation and hygiene challenges as well as disability-inclusive employment challenges, but the existing evidence on the intersection of these issues that is focused on Nigeria and Bangladesh is extremely limited. Building on the literature where this complex issue is addressed, this paper presents the findings of a qualitative pilot study undertaken in Nigeria and Bangladesh. It focuses on the need for toilets at work that are easy for people with disabilities to use in poor countries. These are sometimes called accessible toilets. Accessible sanitation is not regarded as a challenge that must be addressed by people with disabilities themselves, but as a challenge that must be addressed by many people working together – including governments, employers, and the community.

Intersectionality Resource Guide and Toolkit. An intersectional approach to leave no one behind

UN WOMEN
UN PRPD
2022

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The Resource Guide and Toolkit has been developed to help both organizations and individual practitioners and experts to address intersectionality in policies and in programmes. It may be used by individuals or teams to assess their own knowledge, attitudes, and practice, at a programme level as a supplement to existing design, adaptation, and assessment processes or at policy level to better understand and address the different and intersecting effects of policy on marginalised persons.

This Resource Guide and Toolkit emerged from an identified need to use an intersectional approach that included people with disabilities in all their diversity in the development, implementation and evaluation of policies, programmes, advocacy and inter-governmental processes. However, the authors and collaborators realised that an effective intersectionality resource needed to go beyond a focus on specific intersecting identities, such as disability and gender, as this would still exclude those who are most marginalised

Inclusive design and accessibility of the built environment in Varanasi, India: AT2030 Inclusive Infrastructure Case Studies

PATRICK, Michaela
MCKINNON, Iain
MISHRA, Satish
GUPTA, Shivani
ROY, Prabha
CHOUDHURY, Utsav
MURUGHAR, Kavita
RAHEJA, Gaurav
October 2021

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This is the second of six case studies analysing the state of accessibility and inclusive design in low-resource contexts around the world. The six independent case studies will be analysed to develop a comparison report and finally a global action report that will offer evidence and recommendations that support making infrastructure, the built environment and urban development in low-resource settings more accessible and inclusive.

This purpose of this case study is to explore the state of inclusive and accessible environments for persons with disabilities in Varanasi, India, through engagement with policy, industry and community stakeholders (policy, practice and people). Through this engagement, the case study is developing evidence on the challenges and opportunities for implementing inclusive and accessible design in Varanasi and makes recommendations on local actions towards becoming a more inclusive city.

Lives turned upside down in COVID-19 times: exploring disabled people's experiences in 5 low-and-middle income countries using narrative interviews

WICKENDEN, Mary
SHAW, Jackie
THOMPSON, Stephen
ROHWERDER, Brigitte
2021

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This article explores COVID-19 related experiences of disabled people in Bangladesh, Kenya, Nigeria, Nepal and Uganda. Narrative interviews generated storied responses, focussing on respondents' priorities, which enabled us to hear what was most significant for them and their families. 143 interviews were conducted online or by phone by 7 local researchers (3 disabled), with appropriate inclusive support. Nearly everyone was interviewed twice to capture the progression of impacts over time. The data was analysed thematically through a virtual participatory approach. An overarching 'subjective' theme of feelings experienced by the participants was labelled 'destabilisation, disorientation and uncertainty'. We also identified 'concrete' or material impacts. People experienced various dilemmas such as choosing between securing food and keeping safe, and tensions between receiving support and feeling increased vulnerability or dependence, with interplay between the emotions of fear, loss and hope. We found both the concept of liminality and grief models productive in understanding the progression of participants' experiences. Disabled people reported the same feelings, difficulties and impacts as others, reported in other literature, but often their pre-existing disadvantages have been exacerbated by the pandemic, including poverty, gender and impairment related stresses and discrimination, inaccessible services or relief, and exclusion from government initiatives.

A disability inclusive response to COVID-19 - four lessons learned about including people with disabilities in humanitarian aid

MORRIS, Lisa
ELLIOTT, Chris
PIERI, Susan
September 2021

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Inclusive Futures played a crucial role in supporting some of the most marginalised people with disabilities in Bangladesh, Kenya, Nepal, Nigeria, and Tanzania during the COVID-19 pandemic. This paper summarises what we learned and it can be used to include people with disabilities in future programming, particularly in contexts at risk of crisis.

Inclusive client responsiveness: Focus on people with disabilities and older people

INTERNATIONAL RESCUE COMMITTEE (IRC)
July 2021

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Humanitarian actors recognize the lack of standard practice on the inclusion of older people and people with disabilities in humanitarian response as a current and critical gap in the sector. In recent years, the humanitarian sector has begun to more intentionally address these challenges. In response, the IRC has developed this Inclusive Client Responsiveness Guidance, which aims to address gaps in the IRC’s Client Responsive Programming specifically to strengthen inclusion of people with disabilities and older people. The Guidance consists of three sections to support staff in strengthening inclusion of people with disabilities and older people using the IRC’s Client Responsiveness approach:

Key concepts for designing inclusive feedback mechanisms such as accessibility and reasonable accommodation, to ensure that barriers are addressed, and feedback mechanisms are designed to be accessible to all.

Selection and design of inclusive feedback mechanisms that foster diversity and inclusion.

Monitoring access to feedback mechanisms of people with disabilities and older people through appropriate data collection and analysis.

The guidance also includes a set of resources for practical implementation, which are referenced throughout the document

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.

Leave no girl with disabilities behind: Ensuring efforts to advance gender equality in education are disability-inclusive.

DIAMOND, Gloria
CASTRES, Pauline
April 2021

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This advocacy brief from the UN Girls’ Education Initiative (UNGEI) and Leonard Cheshire draws attention to the main barriers to education for girls with disabilities, in the context of major opportunities for advocacy and tangible change in 2021.  The recommendations outlined are targeted at world leaders, governments, ministries, UN agencies and NGOs. They offer a framework for rights-based action and principles towards gender-responsive and inclusive education, to ensure that no girls with disabilities are left behind. 

Prevalence, types, and combinations of multiple problems among recipients of work disability benefits

BRONGERS, Kor A
HOEKSTRA, Tialda
ROELOFS, Pepijn D D M
BROUWER, Sandra
2021

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Purpose: For persons on disability benefits who are facing multiple problems, active labour market poli- cies seem less successful. Besides health problems, these people perceive personal, social, and environ- mental problems. Since very little is known about these “non-medical” problems our aim was to explore the prevalence of clients experiencing multiple problems, the types and number of perceived problems, combinations of perceived problems, and associated characteristics in a group of work disability benefit recipients.

 

Methods: We performed a cross-sectional study, using self-reported data on perceived problems and socio-demographics, and register data from the Dutch Social Security Institute on diagnosed diseases and employment status. A convenient group of labour experts recruited eligible clients on work disability benefit.

 

Results: Of the 207 persons on work disability benefit, 87% perceived having multiple problems. Most reported problems were related to physical (76%) or mental (76%) health. Health problems most fre- quently occurred together with a mismatch in education, financial problems, or care for family members. Clients with lower education experienced significantly more problems than clients with an intermediate or high educational level.

 

Conclusions: Clients with multiple problems face severe and intertwined problems in different domains of life, and need tailored multi-actor work disability management.

Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment?

KALLESON, Runa
JAHNSEN, Reidun
ØSTENSJØ, Sigrid
2021

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Purpose: To explore participation in real-life activities during early childhood, compare children’s partici- pation based on motor function and investigate relationships between participation and parental empowerment.


Methods: Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child partici- pation and parental empowerment.

 

Results: Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations.

 

Conclusions: Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation.

Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study

VON GRANITZ, Heléne
SONNANDER, Karin
REINE, Ieva
WINBLAD, Ulrika
2021

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Purpose: To explore whether the personal assistance (PA) activities provided by the Swedish Act concern- ing Support and Service for Persons with Certain Functional Impairment in 2010 and 2015 promote par- ticipation in society according to Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD).

 

Methods: Register data and data from two questionnaires were used (N1⁄42565). Descriptive statistics and chi-square (McNemar’s test) were used to describe the basic features of the data. Mixed binominal logistic regression was used to examine correlation between gender and hours of PA between 2010 and 2015.

 

Results: Despite an increase in the number of PA hours, more care activities and a reduction of most PA activities representing an active life were found. The result was especially evident for women, older peo- ple, and for a particular person category.


Conclusions: The results offer evidence of a shift to a medical model and indicate a risk of social exclu- sion due to fewer activities representing an active life. An increase on average of 16h of PA over the period studied does not guarantee access to an active life and may indicate a marginal utility. The noted decline of PA for participation in society enhances the importance of monitoring content aspects to fulfil Article 19 of the UNCRPD.

Combatting the costs of exclusion for children with disabilities and their families

MONT, Daniel
UNICEF
March 2021

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Compared with other children, children with disabilities are less likely to receive an education, less likely to be employed as adults, more likely to be victims of violence, less likely to start their own families and participate in community events, and more likely to live in poverty. 

The exclusion of children with disabilities affects not only them, but imposes costs on the whole community. If these children lack the opportunity to be productive, society loses out on what they could have produced.  The barriers faced by people with disabilities can also create more responsibilities for their family members, which can limit their opportunities to work or get an education.

Moreover, the impact of exclusion extends beyond the economic cost. If people with disabilities are absent from public discourse, the community cannot benefit from their ideas. If they are excluded from political participation, the government cannot truly represent the interests of all citizens. 

A growing body of research suggests that the costs of exclusion are high. Fortunately, evidence also demonstrates that there are effective ways to ameliorate these costs. A strong case can be made for the social and economic benefits of inclusion. This paper is an effort to begin making that case.

 

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