POTADS Foundation: Hope For the Parents, Pillar For the Children

Cover credit: POTADS

Down syndrome Awareness Month begins this week. Ahead of it, Twibbonize visited Yayasan POTADS, Persatuan Orang Tua Anak Down Syndrome, at its office in South Jakarta last Friday (9/25).

POTADS came to our attention in March, when their campaign for World Down Syndrome Day 2026 reached our explore page. It turned out not to be a one-off. The foundation has been making a Twibbon for the same two occasions for years: World Down Syndrome Day in March, and Down Syndrome Awareness Month every October.

On this occasion, we had the chance to speak with Eliza Octavianti Rogi, the chairman of POTADS Indonesia. The foundation was established in 2003 and now runs information centers in ten provinces, with seventeen people on the national board.

Eliza joined in 2010, after she and her husband learned from their doctor that their child had an extra copy of chromosome 21, the smallest chromosome in the human body. The doctor passed her the phone number of the foundation's chairman at the time. POTADS had begun at the same hospital where Eliza had her pregnancy checked, Harapan Kita in West Jakarta.

Dedication for the children and organization

For her first years Eliza was a member rather than an organizer, active in the WhatsApp groups where parents trade advice. That changed in 2019, when she was asked to help run an event, and again in 2022, when the foundation's trustees asked her to take the chairman's role. She had been on the board for three years. Others had been there far longer.

"I told them, I have no experience. But [they told me] it's okay, perhaps it was because I was considerably new, so I was bringing a new atmosphere to the organization."

It took a lot to run a nonprofit organization while raising her own child. Eventually, Eliza took the role when her husband gave his blessing, supporting her and their daughter from the side. 

Eliza (second from the left) at the 2025 Down Syndrome Awareness Month Event by POTADS in Jakarta. Credit: POTADS

We had assumed that a nonprofit working with children would automatically receive assistance from the government through its social ministry. That is not the case.

"Ever since the foundation was established, we have never received financial support from the government," Eliza shared. Everything comes from individual donors and sponsors. Government support arrives in the form of infrastructures and facilities, such as a venue provided free or a speaker covered rather than money. In 2024, the Health Ministry also collaborated with POTADS for a podcast episode socializing Down syndrome.

She further explained that the foundation has looked into the governmental grants that other foundations receive, but Eliza and her team found the paperwork so demanding that they have put off applying more than once.

What has changed since 2010

What Eliza is grateful for is that since 2019, more and more people have become aware of POTADS. She remembers the years when the foundation had to approach institutions itself, going door to door with proposals. Now the institutions are the ones approaching POTADS.

Asked whether public understanding of Down syndrome has changed since she joined in 2010, Eliza did not hesitate.

"Oh, it is clear. The change has been very, very big."

Students arrive asking for interviews for their final assignments. Communities write in wanting to organize a play date. The Ministry of Education and the Ministry of Health have invited the children to perform at their anniversary events, and have asked POTADS to open a coffee booth at their functions.

"That actually shows acceptance," Eliza said. "That they accept them, and that they are willing to give them the opportunity."

The clearest marker of that shift, for her, is work. Children she first met as toddlers in the WhatsApp groups now hold internships at hotels across Jakarta, and several have moved into paid jobs.

Eliza is careful not to overstate any of it. Measured against the size of the country's population, she said, there are still many who treat her children badly, and bullying has not gone away.

"But there is progress, it is much better than before."

The courses for the children

In time, the volume became a problem of its own. 

Researchers, university students, companies and community groups ask for time. At one point the foundation was hosting two collaborations in a single week. POTADS discovered its own limits, and for the welfare of the children, it now caps collaborations at two a month.

Those collaborations are usually held on weekends, because weekdays belong to the foundation's own programs. POTADS runs courses designed to develop its children's motor skills. 

"This is important because they might undergo what we call regression," Eliza explained. Regression refers to "the loss of skills that an individual has previously learned." People with Down syndrome are even more at risk of this regression if they are left with nothing to do, so courses allow them to practice the skills they are taught.

One class we got to attend is the barista class. Frans, the trainer, has taught here since 2018 and had never had a student with a disability before. The class is now held three times every week, and each day runs three sessions. Students learn to pour without spilling, froth milk, and take orders from customers they have never met.

A session of the barista class. Credit: POTADS

POTADS also takes the class out. At charity bazaars the foundation would often ask if they could participate. Companies or institutions would welcome them with no fee, so POTADS would move their espresso machine across Jakarta, and the children would be the ones behind the counter.

The coffee bar at the 2025 Down Syndrome Awareness Month Event. Credit: POTADS

The revenue is, of course, not the point.

Eliza emphasized why they do this. "So people can see, these kids are strong, they can do this. What we sell is their ability, not the product. What we want is, these kids that people assume have no potential, we want to show them. That there is potential."

Pride was heard in Eliza's voice when she recalled one bazaar, where a coffee shop owner ordered several drinks because he could not believe they were made by baristas with Down syndrome. The cafe owner then offered them work at his cafe, Kopikamu. 

What the Twibbon means for them

The Twibbon is not Eliza's initiative. "Even when I first joined, it has become some sort of a routine, that for these two events there is going to be a Twibbon."

The two major occasions divide the year: March, World Down syndrome Day, is directed at the children themselves, while October, Down Syndrome Awareness Month, is for everyone else.

The Twibbon Frame is distributed not only by the full-fledged members through WhatsApp channel, but also shared on Instagram and Facebook pages. Thousands joined through a network of trusted people. 

Pride came up here too, as it had with the bazaars. "Twibbon is part of our efforts to raise awareness about Down syndrome to everyone. So, yes, it is also about pride when we wear the Twibbon."

That pride extends beyond oneself, because all POTADS members are parents and the photograph inside the Twibbon Frame is usually not theirs.

"The Twibbon is meant for [my child]. And since she does not have social media, I am the one sharing it. But the photos in the Twibbon are of the children."

Nearly 13,000 people joined the March campaign. Set against the number of Indonesians living with Down syndrome, that is a small fraction, and Eliza does not treat it as a finished piece of work. What she hopes the Twibbon does is put the subject, their children, in front of everyone, especially those whose lives rarely bring them near someone with Down syndrome.

"We never know whom we might educate by posting this. 'Oh, what is the syndrome? What is POTADS?' Now we got them curious."

The Twibbon is one of the ways POTADS tries to shift how people see Down syndrome. "It is more of a message, rather than a post for the sake of showing off. It is a message there, that [people with Down syndrome] should be accepted, just like we accept any other individuals."

When we visited, the October programme was still being assembled. Its shape, though, is familiar. There will be a Twibbon Frame, as there has been every March and every October for years, and a webinar in the weeks that follow. Scheduling put the main event on November 1, with details to come closer to the date.

Together Against Loneliness

This year's theme for World Down Syndrome Day and Down Syndrome Awareness Month is Together Against Loneliness. Citing Down Syndrome International, this theme highlights the harm exclusion does to people with Down syndrome and to their families. More people are becoming aware, yet what good is awareness without the action to include them?

Oom, vice chairman of external affairs who also accompanied our visit, shared that challenges remain even when many of their children have grown and worked in various places. 

These workplaces, Oom explained, cannot hold their employees and interns with Down syndrome to the same standard as everyone else. It becomes a delicate matter. Society may be willing to apply different standards to different people, but the standard is currently still designed by the framework of able-bodied people.

It is, of course, not a matter POTADS can change alone.

"[Before POTADS] I had never thought about what would happen after my child finishes school," stated Eliza. "My only concern was one: for her to be happy."

Her daughter, Dzakira, is now sixteen and has just begun school at an SLB (Special Education School) near their home.

"Now, it feels that there are more and bigger things in store for her," Eliza said with a laugh.

That is the vision POTADS organizes itself around: building pillars that support their children to have a good life.

The barista class, the internships and the play dates the foundation runs with other communities are each an attempt to move that conviction into practice.

This October:

POTADS is running a campaign with us for Down Syndrome Awareness Month, built around this year's theme, Together Against Loneliness. Details go up on POTADS Indonesia's Instagram as they are announced. The foundation's information centers, in ten provinces, take volunteers and are listed here.