Leaving no one behind: Making use of data innovation to respond to the needs of parents and caretakers of children with disabilities in Indonesia
Early one morning seven years ago, Yustia noticed that her son had a high fever. At the time, Joshua was two months old and he was doing well the previous day. Initially, Yustia thought it was a typical fever that would die down quickly but following three days of using traditional medicines, his symptoms had considerably worsened. Yustia’s concerns about Joshua’s condition grew and she tried to search for more information and support to no avail. Finally, she decided to bring him to the nearest hospital to get medical attention.
Fast forward to today, Joshua is a young boy who lives with a rare disorder that has affected his vision and cognitive development, amongst other things, and which requires him to regularly attend physical therapy.
“It has been several years since Joshua was diagnosed but being a parent of a child with disability still weighs heavily on my shoulders, especially because we live in a small city like Ternate where finding credible information and facilities is difficult,” says Yustia.
Social stigma has also made it harder for her to ask for support and to talk about Joshua’s condition with others and so for years, she faced these challenges alone until she found an online community where she could share their experiences and obtain information. Until today, this community is one that Yustia still relies on greatly for support.
Addressing the challenges that are faced by people with disability and those who care for them is a large part of what we at Global Pulse Asia Pacific hope to address through our work on inclusion, specifically with the Akses Inklusif platform. Unfortunately, Yustia’s experience illustrates a fairly common scenario in Indonesia. Nationally, people with disability are often underrepresented, left behind, and lack equal access to basic services. People with disability face higher risks and many challenges to basic services such as health and education. Additionally, societal stigma and shame surrounding disability prevents people from openly discussing or admitting their need for support. This adds to the struggles faced by those who present developmental issues, particularly when it comes to accessing important information such as nearby laboratories for blood tests and hospitals for being diagnosed by medical professionals, as well as the developmental support needed beyond that.
To support the United Nations mission to achieve the Sustainable Development Goals and to Leave No One Behind (LNOB), we developed a flagship project named after the LNOB mandate focusing on two streams of work: data on people with disability and data for people with disability.
The first stream is supported by local consultant Saraswati and looks at mapping out the availability and utilization of data on people with disability, and identifying use cases and gaps from existing analysis. The second stream focuses on providing basic information and identifying new sources of data for people with disability through Akses Inklusif. With this platform, we aim to provide information on support services that people with disability alongside their parents and caretakers can access and share across Indonesia.
For parents such as Yustia, the obstacles of living in remote locations are often compounded by limited connectivity; however, even in big cities such as Jakarta, parents still encounter difficulties accessing channels of support.
As a father of a child with disability based in Jakarta, Gunawan can similarly relate to Yustia’s need for information. His daughter Kiyora was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) when she was in kindergarten and when Gunawan was faced with the decision to send his daughter to a special/inclusive school or a public school, he felt unsupported in making a decision due to a lack of adequate information. Of the experience, Gunawan said:
“I couldn’t understand the differences between public schools that accepted children with disability and special/inclusive schools because their classifications were unclear. The only way to get clarity was to visit schools in person, which required a time commitment that I could not manage or afford.”
With access to a platform such as Akses Inklusif, we aim to mitigate the challenges that people with disability, their parents and caretakers, must face in order to have access to basic services that fulfill their needs.
“This informational platform can potentially help parents and caretakers to find the information they need, such as healthcare services. I appreciate UN Global Pulse to involve a wide range of stakeholders in the end-to-end process, including people with disability, their communities, policy makers, and parents and caretakers as it is essential so that what is developed caters to their actual needs.” (Designer at the Ministry of Health, Republic of Indonesia)
We understood, however, that to develop a platform aiming to serve a specific community’s needs, we had to get a better understanding of their daily reality because stories such as Yustia’s and Gunawan’s are really only the tip of the iceberg. Knowing that there are more nuanced experiences we can learn from to create a more inclusive, accessible and informative platform, we decided to conduct field visits to several cities across Indonesia to speak with people with disability and their communities. In doing so, we gained valuable insights that helped shape the platform and we also learned several key lessons along the way, which you can read about in the next blog in our series!
Authors: Rizqi Ashfina (Research Officer) and Andini Kamayana (Communication Manager)
The Leave No One Behind (LNOB) project looks at data ON and data FOR people with disability and is a collaborative effort initiated by multiple stakeholders. The project focuses on components under the mandate to ‘Leave No One Behind’ and is an opportunity to respond to commitments within the UN Data Strategy to improve the collective use of data within and between UN agencies in Indonesia to deliver better results. We would like to thank all stakeholders who have contributed to this project for their continued support and collaboration, with special thanks to UN Global Pulse Finland for the funding support.
Leaving No One Behind (LNOB) project team members: Faizal Thamrin (Data Innovation and Policy Lead), Rajius Idzalika (Principal Data Scientist), Rheza Muztahid (Principal Data Engineer), Robbi Nugraha (Web Application Engineer), Aaron Situmorang (Social Systems Lead), Rizqi Ashfina (Research Officer), Desi Vicianna (former Government Partnership Coordinator), Andini Kamayana (Communication Manager), Alfian Maulana Latief (Multimedia Associate), Muhammad Fazri Nahar (Data Analyst and Visualization Intern), Ramzy Syafiq (Data Analyst and Visualization Intern), Rahma Fairuz Rania (Data Analyst and Visualization Intern)
UN Global Pulse Asia Pacific is grateful for the generous support from the Government of Indonesia and the Government of Australia.
