AT2030: Community led solutions. Assistive Technologies in Informal Settlements in Sierra Leone and Indonesia

AT2030 sub-programme focuses on how disabled and older people in informal settlements in Banjarmasin (Indonesia) and Freetown (Sierra Leone) are able to achieve their aspirations, and the role that Assistive Technologies play in their strategies to do so.

Background

It is estimated that by 2050 two billion people would benefit from Assistive Technology, yet 90% will not have access. The World Health defines assistive technologies (AT) as the “the umbrella term covering the systems and services related to the delivery of assistive products and services”, which are products that “maintain or improve an individual’s functioning and independence, thereby promoting their well-being”. Examples of Assistive Products (AP) can be hearing aids, wheelchairs, communication aids, spectacles, prostheses, pill organizers and memory aids.

The AT2030 programme, led by the Global Disability Innovation Hub (GDI Hub), focuses on “Life Changing Assistive Technology for All”. AT2030 will test ‘what works’ to improve access to assistive technology (AT) and will invest £20m to support solutions to scale. With a focus on innovative products, new service models, and global capacity support, the programme will reach 9 million people directly and 6 million more indirectly to enable a lifetime of potential through life-changing assistive technology.
 

Overview

The wider AT2030 Programme is funded by the UK Department for International Development (DFID) and delivered by the GDI Hub, in collaboration with World Health Organization (WHO) Global Cooperation on Assistive Technology (GATE) network. 

This sub-programme is led by The Bartlett Development Planning Unit (UCL) in partnership with: Leonard Cheshire (UK), the Sierra Leone Urban Research Centre (SLURC) and Federation of the Urban and Rural Poor (Sierra Leone), & Kota Kita and Kaki Kota (Indonesia).

Our overarching research question is “How can collective, and community-led responses, enable disabled people to access better life outcomes, through increasing the relevance and uptake of AT?”

The aims of our research are to:

• Explore spaces for co-production of AT between innovators at different scales, including people with disabilities and residents of informal settlements;
• To understand:  existing enabling factors for people with disabilities in informal settlements, and; the role of informal markets and community-based systems of support in developing and delivering ATs;
• To advance methodology on how we assess ATs and their application.

The project works through a process of knowledge co-production and is divided in two broad phases:

• Phase 1 (2019-2020): Mapping selected aspirations of people with and without disabilities in the partner communities, and the existing community-led responses that support the attainment of these.
• Phase 2 (2020-21): Co-production and trailing of Assistive Technology interventions relevant to the aspirations and community support environment mapped out in Phase 1.

The project also includes a linked PhD research project conducted by Victoria Austin (DPU PhD candidate) which is focusing on How do disabled people living in informal settlements in Freetown understand citizenship, and what enables citizen activism for disabled people in Sierra Leone?

Methods and findings, phase one (2019)

1. Participatory Activities

The first phase of the project was undertaken through field work in May-December 2019 in four informal settlements across two cities; Banjarmasin and Freetown. The aim of Phase 1 was to map selected aspirations of people with and without disabilities in the partner communities, and the existing community-led responses that support the attainment of these. In order to do this, the research conducted a series of participatory activities, including textile making workshop, focus group discussions, workshops, participatory photography, professional photography and shadowing with the core groups of participants (30 residents from each settlement; 50% disabled people, 25% AT users and 25% non-disabled and non-community leaders). And semi-structured interviews were conducted with key stakeholders working in fields related regarding the aspirations identified by participants. 
 

2. WHO rATA Survey

In order to get a better understanding how low-income users access AT, we also conducted two pieces of supplementary research; four Rapid Assistive Technology Assessment (rATA) surveys and two Informal AT Market Studies.

The rATA surveys were conducted using the new WHO Rapid Assistive Technology Assessment (rATA) tool, to gather data from 4,000 people in the four project communities for rapid evaluation of the need, use, supply and impact of Assistive Technology. The data was collected and stored using KoBoToolbox (https://www.kobotoolbox.org/), a suite of tools for data collection and analysis for use especially within challenging environments, with data collection on smart-phones.
 

3. Informal AT Markets Country Studies

We undertook two Informal AT Markets studies, one for Indonesia and one for Sierra Leone.  The aim of these studies was to supplement the AT Country Capacity Assessments being piloted by the Clinton Health Access Initiative (CHAI), using the WHO (World Health Organization) ATA-C (Assistive Technology Assessment - Capacity) tool, developed with the support of the (GDI Hub). The ATA-C tool is designed to assess the capacity within countries to make the most effective, high-quality AT (Assistive Technology) available at affordable yet sustainable prices. The focus of the informal markets studies was to extend this research to understand existing practices of AT provision through informal markets and social institutions, and the experiences of AT users on low incomes living in a context of informality.
 

Phase 1 Outcomes

Disabled people’s aspirations

A key output of Phase one of the project was for the research participants to identify and agree shared aspirations for life outcomes that they want to focus on as the purpose of the AT co-production activities in Phase 2.

Participants from each community agreed one collective aspiration that was mostly widely shared across disabled people, AT users and non-disabled community members and one aspiration that might be specific to a particular group of disabled people but which would be most transformative for the lives of this specific group.

Learnings about the AT context in the Banjarmasin and Freetown

1. Disabled people in informal settlements have low access to AT, especially in Freetown, and in both case studies, people with higher level of disability have less access to AT.
2. The most common assistive products used in the case study settlements are spectacles, followed by crutches, and wheelchairs.
3. The informal sector plays a significant role in the supply of AT (E.g. 66.0% of rATA survey respondents’ Assistive Products in Banjarmasin, most if which were spectacles, come from the informal sector.
4. People’s understanding of AT is much broader than the official definition. For example, in Freetown, many other objects and even people were described as AT by our participants.
5. There is significant innovation, often led by AT users and their informal enterprises, especially in Indonesia, where disabled people themselves produce products with local resources, which are often more affordable, easier to maintain and better suited to users’ needs (see image below).

Image: Participant and wheelchair user who has adapted a motorcycle in order to be able to drive it himself. Banjarmasin, Indonesia
Photo credit: Angus Stewart

Research as a space for an emerging collective identity around disability

The type of methodology used in the four communities (participatory, embedded, continuous) created a different space for disabled people to participate. This was captured through informal conversations with participants, through interviews with grassroots organisations involved in the research (i.e. FEDURP and Kaki Kota), and feedback after specific activities (e.g. Celebration of People with Disability Day in Sierra Leone and feedback of their professional photographs). The research fostered a space for visibility and for participants to see being disabled as part of a positive, political, group identity. 

“I was ashamed to come in public but now I’m not. Because of this group, I feel more confident.” - (Male participant Freetown)

“I was even scared to come in too. I hope this group will continue.” - (Female participant Freetown)

Image: Participants in an informal settlement in Freetown (Sierra Leone) discuss their aspirations through the making of a textile banner. Photo credit: Angus Stewart

COVID-19, responses and research (2020)

Between April and August, we conducted a COVID-19 response and research on the impact of the pandemic on disabled people and older people living in informal settlement in Sierra Leone and Indonesia. The Federation of Urban and Rural Dwellers in Sierra Leone and NGOs Kaki Kota and Kota Kita delivered water, food parcels and face masks (transparent masks to sign language users) to disabled people across settlements in both cities. They have also built sanitation points in the settlements and distributed information about how to avoid the further spread of the virus.

The main patterns that have emerged from the research show that disabled people and older people have found themselves affected not only by the general consequences of self-isolation and lockdown restrictions (decreasing everyday support from carers, family and friends and difficulties accessing basic supplies), but also by the potential for the pandemic to increase stigmatisation and social exclusion.

We found that disabled people often saw the impacts of COVID-19 as similar for disabled and non-disabled residents, such as loss of income and poorer access to basic supplies.

However, distinct effects on people with disabilities also emerged, including:

• Loss of livelihoods: Many disabled people depend on begging or practice trades which are greatly affected by social distancing (for example, masseurs with visually impairments in Indonesia). Lower income decreases access to food and water.
• Reduced educational opportunities: In Indonesia, parents of disabled children have found it difficult to adapt to online teaching, having to modify learning materials and cope without sign language support.
• Unequal access to government support: In Sierra Leone, only recognised disabled groups received support, overlooking many residents of informal settlements. In Indonesia, the bureaucracy around government cash transfers has been a barrier for many disabled people.
• Limited social life and capacity to organise: In Indonesia, social distancing has seen activities for disabled people cancelled; many cannot afford internet access to join online alternatives. Risk of infection has also limited the chances for disabled people’s organisations (DPOs) to meet or provide in-person support.
• Poor access to information: In Indonesia, signage about social distancing is not accessible for people with a visual impairment, causing even more difficulties for using public space.  

COVID-19 response narratives emphasising the importance of ‘healthy bodies’ exacerbate these difficulties and increase stigma towards disabled people. Social distancing rules have limited offers of help from the public, such as support crossing the street.

The research also highlights how community-based organisations in the global South are providing life-saving resources, accessible information, new spaces for disabled people’s participation, and innovative collaborations in the city.

Photo caption: As Susiana is visually impaired and her mother is an older woman, they have decided to follow strict health protocols and only go out in their neighbourhood. Interviews conducted as part of COVID research. Photo by: Kota Kita

Phase 2 (2021)

Due to changes related to COVID-19, in terms of social distancing requirements and limited international travel, phase 2 of the research project has been slightly delayed and the research methods are being adapted. We are integrating the use of online tools for coordination and data generation with participants.

1. Research on COVID-19 and disability, and practical support to communities (April to August 2020)

Practical  support has been a crucial part of our work in the partner  communities during the COVID-19 pandemic, especially as the disabled people and older people who we are working with are: more vulnerable due to underlying health conditions; more affected by self-isolation and lockdown restrictions (i.e. everyday support from carers, family and friends); already on low-wages and working in informal jobs. The pandemic has decreased options for earning money, and settlements dwellers are now highly dependent on support from local governments, NGOs and others. During the periods of lockdown in the two countries therefore we have been undertaking socially-distanced research to understand disabled and older people’s experiences of the pandemic, and responses to the pandemic, and linking this research to access to some basic support (food and soap) which is being distributed by FEDURP in Sierra Leone and the NGOs Kota Kita and Kaki Kota in Indonesia.
 

2. Co-production of ATs (September 2020 to May 2021)

As the new year rolls around, we are moving into Phase 2 of our project. In this phase, we are planning to build on our work from Phase 1 and carry out further research activities in four informal settlements in two countries, Sierra Leone and Indonesia. In this part of the project, our aim is to test relevant AT co-production approaches for the amplification of the views of AT users, and to develop and trial AT interventions corresponding to the aspirations agreed by our community research participants at the end of Phase 1.

In Sierra Leone, we will be focusing AT interventions on Inclusive Mobility, and on Affordable and Accessible Healthcare;  in Indonesia, the focus is on Active Community Participation, and on Inclusive Public Space.

The schedule of activities for January – March 2021 includes:

• finalising a survey into the use of ICT in the participating communities in collaboration with SHM Foundation, to gage feasibility of mobile phone based AT solutions;
• consultations with experts in AT interventions, disability and accessible environments, to gain their insights and ideas, and to identify potential partnerships;
• the Validation workshop in the communities with an aim to revisit and validate the Aspirations with research participants;
• the ‘Entry points’ workshop with the community research participants to identify opportunities for positive change and agree on relevant AT interventions.

We aim to move on to the co-production stage in April 2021.

Team

Julian Walker (Principal Investigator, DPU-UCL)
Dr. Ignacia Ossul-Vermehren (Lead Research Fellow, DPU-UCL) – Phase 1
Dr. Sylwia Frankowska-Takhari (Lead Research Fellow, DPU-UCL) – Phase 2
Victoria Austin (PhD Candidate, DPU-UCL)

For the wider project team, including our partners in Indonesia and Sierra Leone, please see the AT2030 website. 

Project outputs

Final Report

Rapid Assistive Technology Assessment Report: Banjarmasin (Indonesia) and Freetown (Sierra Leone) 

According to the World Health Organization (WHO), 15% of the population has a disability and more than a billion people need one or more assistive products (AP), but only one in ten people have access to the devices they need. The WHO project that the need for AP will increase rapidly with ageing populations and growth in non-communicable diseases, so that more than two billion people will need at least one AP by 2030.[1]   

However, while the prevalence of disability and need for Assistive Technology (AT) – which comprise assistive products and their related services – have been documented in general terms, there is little data on low-income settlements in the global south. This is an important hiatus, given the close association between disability and poverty.[2] In the global south, many AT users must pay for access to AT.[3] Therefore it is to be expected that residents of low-income settlements in the global south face particular challenges in accessing AT.

To contribute to this knowledge gap, this study gives a unique insight into disability prevalence and access to AT in five urban low-income communities in Sierra Leone and Indonesia, where a total of 4,256 individualswere surveyed using the rATA tool.[4] Designed for the rapid evaluation of the need, use, supply and impact of AT, Rapid Assistive Technology Assessment (rATA) is a new survey from WHO. A version modified by the Development Planning Unit-University College London (DPU-UCL) was conducted in September 2019 for the research project “AT2030 community led solutions”,[5] as part of the AT2030 programme led by Global Disability Innovation Hub.

[1] World Health Organization (2021). Assistive Technology fact sheet [Fact sheet]. https://www.who.int/en/news-room/fact-sheets/detail/assistive-technology

[2] Groce, N., and Kett, M. (2013). The Disability and Development Gap (Working Paper No. 21). Leonard Cheshire Disability. https://www.ucl.ac.uk/epidemiology-health-care/sites/iehc/files/wp-21.pdf

[3] See: Walker, J., Rifai, A., Jamil. A., Kurniawan V. (2020 a). Country Capacity Assessment for Assistive Technologies: Informal Markets Study, Indonesia. Global Disability Innovation Hub Report, AT 2030 Programme, GDI Hub. Also: Walker, J., Sallam, N., Sesay S., and Gandi, I. (2020 b). Country Capacity Assessment for Assistive Technologies: Informal Markets Study, Sierra Leone. Global Disability Innovation Hub Report, AT 2030 Programme, GDI Hub.

[4] See: https://www.who.int/publications/i/item/WHO-MHP-HPS-ATM-2021.1

[5]See: https://www.ucl.ac.uk/bartlett/development/research-projects/2021/feb/at2030-community-led-solutions

Reports

Walker, Julian, Nada Sallam, Samuel Sesay and Ibrahim Gandi (2020), Country Capacity Assessment for Assistive Technologies: Informal Markets Study, Sierra Leone, Global Disability Innovation Hub Report, AT 2030 Programme, GDI Hub, London

Download report

Walker, Julian, Ahmad Rifai, Fuad Jamil, Vindi Kurniawan (2020), Country Capacity Assessment for Assistive Technologies: Informal Markets Study, Indonesia, Global Disability Innovation Hub Report, AT 2030 Programme, GDI Hub, London 

Download report

Book Chapters

Walker, J. & Ossul-Vermehren, I. (forthcoming). Re-) constructing disability through research: Methodological challenges of intersectional research in informal urban settlements. In V. Castan & A. Rignon (Eds.), Inclusive Urban Development in the Global South. London: Routledge
 

Blog Post

Disability, inclusion and cities: can COVID-19 trigger change? By Ignacia Ossul-Vermehren (October 1^st, 2020)

Gender and disability in informal settlements during COVID-19: What we have learnt so far by Ignacia Ossul Vermehren (June 30^th, 2020)

The Politics of Making Disability Visible in Community-led Urban Research by Ignacia Ossul Vermehren (February 26, 2020)

Celebrating International Disability Day in Sierra Leone by Victoria Austin (December 4^th, 2019)

Life Changing Assistive Technology for All in Freetown and Banjarmasin by Hawanatu Bangura (October 6^th, 2019)