This #HackSociety idea could change the lives of kids with autism

MANILA, Philippines – What if every autistic child could grow up with the support of the best healthcare practitioners – so that none of them get left behind? This was the dream that won team Emerald District a spot to compete in the United Nations Development Programme (UNDP) and Citi Foundation’s Youth Co:Lab Asia-Pacific Regional and Global Summits. 

At Rappler’s #HackSociety 2018, Henry Lachica, Nesty Tumbaga, and John Chua explained that their app would track the progress of kids with autism spectrum disorder (ASD), help their parents collaborate with healthcare providers, and provide them with learning materials through a diverse content library.

To support these kids throughout their whole journey, team Emerald District plans to sustain their app through subscriptions from therapy centers and SPED schools, and individuals and private practitioners. They will also receive revenue from their content library and from paid advertisements. 

After launching in 2019, the group plans to grow a Southeast Asian market by 2020.

Below, the team answers a few of our questions through email about the team’s own experiences with mental health and their HackSociety experience.

What spurred you to focus on finding better ways to manage autism? Why is this condition close to your heart? How did you come up with the idea of creating this app-aided network of autism support?

Emerald District was conceptualized in the Asian Institute of Management (AIM), where Henry, John, and Nesty are all taking up their master’s degrees. Henry and Nesty are in MS in Innovation and Business, and John is currently taking the MS in Data Science.

Nesty and Henry were invested in looking into the healthcare industry. They knew that the Philippines is currently struggling into providing for the healthcare needs of everyone. We decided to bring in John for his technological expertise.

As techies, we are very tempted to jump directly into technical solutions that involve complicated automation and digitization of healthcare. Instead, we dove deeper and looked at healthcare holistically. They later discovered there were complex problems in the ASD space.

Developmental conditions such as Down Syndrome, Cerebral Palsy, and ASD are only some of the underserved sectors in the Philippines. There are a limited number of healthcare practitioners that can address their needs. Policies and standards that govern how people with autism should be taken care are also nonexistent. Families are left to cover all the expenses for ASD care and deal with the emotional stress that comes along with it.

The team was intimately familiar with the complexities of the sector because all of them has had personal experience with people with the condition. From having a close family member, a friend, and professional encounters, they had that encounter with the sector.

They conducted interviews with friends who take care of Persons with Autism (PWA), and different professionals such as special education (SPED) teachers, therapists, and developmental pediatrician. They identified documentation and communication as core hurdles in bringing better outcomes ASD care in the Philippines.

ASD care practitioners are housed in separate institutions, i.e., doctors in hospitals, therapists in centers, teachers in schools. This nature renders planning for care and managing PWAs more complicated and confusing leading to misalignment and miscommunication.

Identifying the core of the problem is not enough. To be successful in the venture, professional expertise in developmental health is needed.

Fortunately, the 3 founders met Francis and Christian, who were both occupational therapists and social entrepreneurs. The two professionals completed the team and provided a better perspective in approaching the problem. The two contributed a lot coming up with solutions that would potentially change the way professionals handle ASD care.

What do you think are the current issues that the Philippines still faces when it comes to dealing with autism expertly? Why do you think only 10% has been diagnosed? Do you think there is a culture that’s preventing a higher percentage of diagnoses?

The team saw 3 clear issues preventing those with autism from having the best possible care:

• a limited number of healthcare practitioners,
• the lack of state and regulatory laws, and
• the separation of institutions in the space.

There are also a limited number of doctors specializing in diagnosing and assessing developmental conditions. Today, there are 51 developmental pediatricians in the Philippines. 36 of them are in the National Capital Region while the rest are in the provinces. Most people we have interviewed consider them as captains of the ship and the gatekeepers of autism care.

Regarding diagnosis, it is difficult to get an appointment with the developmental pediatrician. Most families would wait from six months to up to two years to get their first meeting with the doctor, not to mention, that each appointment will cost them thousands of pesos.

Despite their passion for studying each case, they are outnumbered by 120,000 people requiring their attention. They also handle other developmental conditions such as Down Syndrome, Cerebral Palsy, Attention Deficit Hyperactivity Disorder, and many more. Imagine the complexity of their work due to the number of patients.

Limited access to doctors is only one of the problems in ASD care. Among those diagnosed, only half receive regular intervention.

Again, there is a limited number of therapists as well as SPED teachers competent to handle ASD cases. The majority are going out of the country since they have better career opportunities abroad. There is very little that we can do with the low professional-to-PWA ratio, but we firmly believe that we can leverage with technology to make the most out of the few passionate individuals that have remained.

Currently, there are no laws that help standardize and regulate autism care. The National Autism Care Act is still in its early stages and lacks the standards needed to improve autism care. We have interviewed practitioners, and they all followed a different set of documentation, depending on their centers/clinics, which may cause misalignments with their intervention plans. This creates inconsistencies in their reports and slows down the interpretations of the report.

Lastly, the separation of institutions in the autism care landscape is evident. Poor collaboration with the different institutions – such as special education schools, therapy centers/clinics, and hospitals – may cause a lot of miscommunication with each other. This may cause poor health data management system in ASD.

One ASD case may be handled by different and separate institutions which makes the care team fragmented. There is a need to treat ASD care in a more holistic approach rather than as parts of a whole –which is currently the case.

Ideally, professionals would communicate and collaborate to come up with an aligned intervention plan. However, the demand in their profession leads to limitations in schedules. They rarely talk or meet to provide feedback on their individualized program to come up with a more robust and aligned intervention plan. Collaboration has to be improved among the ASD care team to provide the best quality care that would benefit the development of the child.

Fundamentally speaking, the limited number of doctors who are capable of giving the diagnosis, as well as the economic limitations of people to spend for a single diagnosis are two of the most compelling reasons as to why only 10% of the projections are clinically diagnosed.

We cannot say that culture has something to do with the poor diagnosis rate in the Philippines compared to what is expected as the actual numbers. Low diagnosis rate is being experienced all over the world. The numbers are only starting to ramp up in recent years as more studies and statistics are being conducted in more developed countries. To date, just a few prevalence studies have been performed worldwide.

It is more of the lack of awareness about these types of conditions that leads parents not to suspect anything special with their child. Autism is a vast spectrum. It ranges from those Savant cases with gifted talents to low functioning individuals. People are usually predisposed to accepting particular behaviors as natural occurrences that they do not recognize the need for intervention. There is a lot of work to be done in bringing more awareness and acceptance to our society regarding Autism.

How do you want Emerald District to help create a more fostering environment for autism? What is your ultimate vision for the program?

Our vision for Emerald District is to be at the forefront of developing total ASD and other developmental health solutions in Asia. Through our products and services, we would be coming up with innovative answers to problems that have long been problems in the landscape.

We also want to be a part of organizations that not only promote awareness but also acceptance of ASD in our societies. We also envision ourselves as champions in policymaking and social inclusion.

We want to form a community that welcomes and supports everyone in this space. Everyone in this community can help each other to make sure their children are not left behind by the fast pace of today’s society.

We want to facilitate a platform that would enable our stakeholders in building an environment where healthcare is patient-centric, education is learner-centered, and decisions are data-driven. Through technology, we aspire to become the helping hand of ASD care practitioners, and parents of PWAs – we want to be their partners in bringing the development of their children.

What were the challenges that you encountered when developing your idea? How did you prepare for your Hack Society presentation?

The main challenges that we encountered in developing our idea are issues in trust, expertise, and communication.

Parents of people with autism are very protective of their child. The topic is usually not casually brought up in regular occasions, except when they are talking to professionals or close family members. Hence, it was a challenge for us to gain the trust of people and allow them to share their experiences openly.

The professionals in the landscape are also scarce. There are only a few SPED teachers, occupational therapists, and doctors in the Philippines that have expertise or experience in autism. Hence, it was a difficult quest for the team to find people to interview and validate the problem.

Lastly, it was particularly challenging for our team to communicate the intent and scope of the project to people. Autism is a condition that only people who have experienced it can relate to. We received doubts and uncertainties when we are trying to conceptualize the project. It was the people who understand the problem –parents of PWAs, therapists, teachers, and doctors, who supported us and motivated to continue in what we are trying to do. – Rappler.com

Co-organized by Rappler and the United Nations Development Programme (UNDP) in the Philippines, #HackSociety is the Philippine counterpart of Youth Co:Lab, a program to promote innovation and social enterprise among the youth in the Asia-Pacific, which is co-led at the regional level by the UNDP and Citi Foundation.

Rappler and the UNDP introduced #HackSociety for the first time in 2016, as a workshop segment in the Manila Social Good Summit. To inquire about #HackSociety, email socialgood@rappler.com.