Children with disabilities, according to UNICEF, are among “the most marginalized and excluded groups in society,” often regarded as “inferior,” which puts them at risk of discrimination and being misunderstood. Global estimates put at least 93 million children worldwide with some form of disability, and that they are likely to have lesser access to medical services or attend school.
Various intergovernmental organizations and enterprises worldwide have invested heavily in special education research and programs to provide these children with the care and assistance they need, including rehabilitation. While traditional services like face-to-face therapy or consultations have worked in the development of children with disabilities, new strides in technology offer more promising results. One such advancement, PenguinSmart, is an online service that “empowers” parents to lead their child’s rehab. We caught up with its CEO, Amy Kwok, to explain more.
How important is rehabilitation for children with disabilities?
Depending on the type of delay, many of these children will need one or more types of developmental rehab therapy (e.g. communication, occupational, physical) and perhaps even special education support to realize their full potential. These rehab sessions are generally not one-off or short-term classes that can “fix” a child in two weeks, but commonly require months or even years depending on the specific condition.
One of the key problems to providing children with the care that they need is limited access to expertise. The traditional model for developmental rehab is consultation-based, with children meeting regularly and in-person with a trained therapist. Unfortunately, therapists are often concentrated in big cities and can only support a limited number of people in a given month. While these problems are global, they are especially pronounced in China, with official estimates conservatively pointing to a shortage of over 300,000 rehab professionals.
What are the groundbreaking technologies that schools, homes, and other institutions worldwide have recently grown to rely on to help children with disabilities?
In the field of communication rehab, which impacts 80 percent of all developmentally challenged children, the new global trend that experts are pushing is a shift from “expert-led interventions” to “parent-led Interventions.” Research has shown that parents who are trained and equipped can be just as effective – and in some cases even more effective – in helping their kids as professional speech pathologists. This is innovation in both mentality and model, shifting from a mentality of outsourcing care to the experts to “doing it yourself.” The challenge, however, is in how to provide customized guidance to parents at a large scale.
New tech advances make this possible. With mobile devices, parents can now do developmental evaluations from home and upload high quality videos for remote therapists to determine the appropriate rehab plan for a child. Plans can be pushed to parents online, while machine learning technology can constantly tailor every family’s rehab plan behind-the-scenes based on parent feedback and data collected. Therapists can oversee this whole process online, freeing them up to act as trainers who are available for video consultations as needed. By incorporating a parent-led model assisted by technology, we estimate that we can enable a therapist to oversee 10-15 times more patients than they traditionally could.
How do children with special needs benefit from using these tools as well as parent-led rehab?
Developmental rehab is a race against time. The earlier a child starts rehab and the more frequently they are trained against the challenges, the more likely their physical body will adapt and improve functionally, even if the child continues to be affected by the underlying condition or disease.
One benefit of a tech-enabled parent-led rehab model is early evaluation and detection. According to one study in the US, over 70 percent of parents with a communication-delayed child do not find out until nearly age 6, after they have already missed the best window to help. If they could do a quick and easy developmental evaluation at home, however, these parents could potentially find out years earlier and not lose precious time.
Frequency also matters. Imagine a Down syndrome child who does not know how to express certain concepts by putting two words together, and it takes her 50 tries before she can get it right. She may be encouraged to try 5 times during a single therapy session. However, if that is the only time she is encouraged to try, then it would take 10 sessions over several months before she can pass the threshold and actually express herself. Imagine how much faster she could reach 50 if the stimulation training were done regularly at home – during play time, during family time, and before bed – because her parents knew what to do and proactively encouraged her.
How do these tools prepare children with disabilities for the future?
Tools that facilitate parent-led intervention for communication delays actually address one of the major determinants of school readiness and learning capacity. This model aligns with the way cognitive and social development happens before school age, when young children learn best from their parents rather than from strangers/teachers. Studies have shown that communication delays affect not only academic performance but also emotional health and self-esteem.
To what extent can technology be used to teach children with special needs? What are some of the technology’s limitations in the classroom or at home?
Most experts would explain that parent-led intervention works best when it comes to helping children be immersed in communication cues and subsequently picking up how to express themselves – accumulation of vocabulary, emotional cues, the use of grammar, and interpretation of context. This works with children with intelligence disabilities, autism, cerebral palsy, overall delays from premature birth, and simple communication delays. Even for the non-verbal children, there are ways to incorporate augmentative and alternative communication methods, such as simple sign language, picture-based cards and chat board, into family daily communications to help the child better connect with their family members.
On the other hand, as most people would not know how to explain to another person how to pronounce hidden sounds like “g, h” let alone where another did wrong, challenges related to physical anatomy that requires training another to listen and differentiate sound, such as stutter, lisp, pronunciation issues related to complex muscle atrophy, requires more specialized training and technique to intervene, and is more effectively done by the therapists.
How does technology make teachers and parents more confident in their ability to interact and contribute to the development of children with disabilities?
Online services such as PenguinSmart are empowering parents to directly contribute to their child’s rehab to a level that they previously could not. In communication rehab, we combine expert insight with the power of machine learning to help parents understand where their child is developmentally and how they can start helping today.
One key benefit to parent-led rehab for caregivers is that it takes away the helplessness that parents often feel and empowers them to directly contribute to their child’s improvement. Such engagement also helps build a stronger emotional bond with their special needs child, replacing the sense of guilt and disappointment that many feel for not discovering the condition earlier or being powerless to help.
Parents who have used the PenguinSmart platform say they are now more appreciative of the small wins their children makes, and they are also more reasonable, objective, and calm when facing their child every day. They have also reported greater peace of mind knowing that they are being guided by trained experts, and appreciate that the service helps them weave rehab into their daily interactions with their child. Lastly, they have seen a rise in the intentionality of interactions with their child, which is actually something our online communication development evaluation service analyzes and gives suggestions for.
What are the things that technology will not replace in your field?
In the field of communication rehab, you will probably not see machines replacing speech language pathologists in the near future. The elements of artificial intelligence technology are not yet sophisticated enough to imitate a human who can simultaneously observe, assign meaning to actions, and make a judgment based on a number of variables. Moreover, rehab is a people business that involves emotional connection and trust. Instead, technology will be used to magnify the reach of the speech pathologist and to automate tedious tasks. For example, digital word counters can be used to passively understand the state of a child’s vocabulary, and image recognition technology can be used to cut down the amount of time that therapists spend counting eye contact when observing a child.
About the interviewee
Amy Kwok, MBBS, MPH, is co-founder and CEO of PenguinSmart Parenting established in 2014. She studied, worked, and lived in Beijing for 8 years until 2012. As a medical doctor from Peking University and a public health practitioner from Harvard University, Kwok focuses on children’s health and wellness. Her previous job was designing and implementing health diagnoses decision-tree apps for village nurses and community health workers in developing countries such as India, Mali, and Tanzania. If she wasn’t a CEO, she would be scuba diving or playing with children.
You can reach her at email@example.com or WeChat at 启儿宝 (Qǐ er bǎo).
Photos: Courtesy of Amy Kwok and PenguinSmart
This article originally appeared on p 40-41 of beijingkids August 2017 issue.
Download the digital copy here.