Closing the Information Gap: Understanding the Needs of Parents and Caretakers of Children with Disability in Indonesia
In our earlier blog series related to our Leaving No One Behind project, we shared stories from parents and caretakers of children with disability, our field experiences working closely with communities of people with disability, and the development of our inclusive platform, Akses Inklusif. From this year-long process, our team drew five insights which we are excited to present in our new publication below: “Closing the Information Gap: Understanding the Needs of Parents and Caretakers of Children with Disability.”
In the stories we have previously shared, we highlighted how it’s equally important for the needs of parents and caretakers to be met so that they can give their children the best care possible at a time when it is particularly crucial for their development. Understanding that one of the major hurdles they face is the lack of information for children with disability through online and offline channels, the Asia Pacific hub sought to develop a platform that provides what they need and can help them make better informed decisions for their children.
Guided by the inclusive principles in the UN Disability Inclusion Strategy and the motto “nothing about us, without us”, our team set out to understand several key elements in the process such as, what are the target users’ specific needs and challenges, and what is needed for us to develop and sustain an inclusive digital platform.
Through our user research activities, particularly from our field work in Ternate, Kupang and across the Greater Jakarta Area, we absorbed new experiences and takeaways and drew the following five key insights that fed into the development of our Akses Inklusif (Inclusive Access) platform.
- The needs of parents and caretakers are just as crucial as those of children with disability, especially during the critical early stages of their children’s development.
As they adjust to the initial news of the diagnosis, strive to provide the best care for their children, and think of next steps, it is equally important that their well-being needs are also recognised and addressed to ensure they can continue to give their children the best possible care. - The critical importance of early detection and diagnosis of disability symptoms is crucial to allow parents and caretakers to provide timely treatments that support the development and growth of their child.
While timeliness is key, compounded obstacles such as taking time off work and other monetary costs may result in their being unable to properly address their children’s needs. Additionally, those living in remote locations must also contend with limited availability of resources. - Despite seemingly clear education options, parents and caretakers continue to encounter challenges when deciding what path best fits their children’s needs.
Parents and caretakers who send their children to standard public schools frequently find that the education system is unsuitable for them and hinders them from reaching their full potential. - Inclusive schools provide important access to education and advocate for the rights of children with disability, but they struggle to provide high-quality education.
Parents enroll their children in inclusive schools to foster social interaction but oftentimes, these schools are not fully equipped with the necessary knowledge and infrastructure to support the development of children with disability. - Communities and organizations of people with disability are the main reliable source of information.
With information on children with disability not being widely available, parents and caretakers rely on communities and offline sources to support them in fulfilling their children’s needs.
Moving forward, we hope that Akses Inklusif will come to be seen as a reliable and useful source of information not only for parents and caretakers of children with disability, but also for the wider community of people with disability.
If you are interested in joining our efforts toward achieving the Sustainable Development Goals (SDGs) and to ensure no one is left behind, we encourage you to reach out so that we can co-create innovative solutions and generate meaningful impact for future generations. Get in touch via: asiapacific@unglobalpulse.org or through social media.
Access the full report here.
Happy reading!
Authors: Andini Kamayana (Communication Manager) with support from Aaron Situmorang (Social Systems Lead, a.i.), and Rizqi Ashfina (Research Associate)
User Research Team: Aaron Situmorang, Rizqi Ashfina, Desi Vicianna, Robbi Nugraha, Atik Widyastuti
UN Global Pulse Asia Pacific is grateful for the generous support from the Government of Indonesia and the Government of Australia.
