To improve public understanding of people with Down syndrome, HKDSA hosts corporate and school talks about social inclusivity, sometimes inviting its members as ambassadors to share their personal experiences. The team also visits companies that have hired members to finesse workflows or address any concerns the employers may have.

But there are times when, even if someone is evaluated as fit for employment, their parents are reluctant for them to take a job, worrying that their children may face discrimination. Ivy Tan, the mother of Raymond Yan, 30, who is employed by an NGO, still recalls how, years ago, an elderly woman glared at her son when they were on a bus. “I wanted to ask her, ‘What’s wrong with you?’” she says. “When I asked my son to greet her politely and he did, she was so embarrassed.”

She says that while younger generations are more open-minded about interacting with those with Down syndrome or other similar conditions, there is still a stigma among older people that they are “stupid, slow learners and a psychological burden to family members”. Lee adds, “It doesn’t help when their facial features are [so easily] recognisable, which in turn easily leads to labelling.”

The worries of any new parents are exacerbated in the case of parents of children with Down syndrome. Tan remembers feeling worried and helpless when her son was born, and chose to quit her job and focus on taking care of him full-time until recently, when she decided he was capable of commuting independently. Lau’s mother Mak Miu Ling felt similar. “When I first saw Christine in the incubator, the first question in my head was: could I really raise her into adulthood? She couldn’t even be breastfed. Until she was four, she couldn’t produce a sound and we wondered if she was mute.” Throughout her childhood, Lau had to go to physiotherapy and language therapy, which took up most of the family’s time. Then there was the struggle between picking a mainstream school and a school for students with special educational needs. “I wasn’t sure if [the latter] could help Christine pick up life skills such as reading, which is crucial to something as simple as taking the public transport,” Mak says.

Then there is perhaps the greatest concern for every parent: who will take care of their children in old age? There is no provision of a government pension for people in Hong Kong with Down syndrome. They may, however, be able to receive a monthly social security allowance for the severely disabled or those who are at or above 65. There is also the government’s Emergency Placement Respite Service, which provides temporary residential care for destitute and homeless disabled adults in urgent need of accommodation; and the Social Welfare Department-managed Special Needs Trust, which currently charges families or carers an annual fee of HK$20,000, to be disbursed for the children’s benefit after the death of their parents.

Neither of the latter two arrangements is particularly helpful. “In the first case,” Lee says, “it is possible it will take a long time for those in urgent need to receive residential care; and in the second, it can be quite costly and therefore discouraging to families.”

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HKDSA has been providing fundamental help to individuals with Down syndrome, or intellectual or other disabilities and their family members, since it was founded in 1986. It offers two main branches of services: integrated family support, such as counselling for parents, family activities and stress management workshops for caretakers; and vocational rehabilitation services, which focus on developing career skills.

The rapport and support offered by the HKDSA community offers members such as Yan, Gary Lai and Lee Yiu Yeung a sense of fulfilment, as well as practical help in the form of employment. Through an HKDSA introduction, Lai, 35, recently found a job sorting materials at a recycling centre; Lee, 30, has worked as a part-time office assistant at an HKDSA centre. They are also active participants in HKDSA’s ambassador programme.

For members’ parents, such as the mother of Bonnie So Ka-wai, HKDSA offers crucial emotional support and information. “I’ll never forget the HKDSA officer who carried a heavy book full of in-depth information about Down syndrome to the hospital for me when my daughter was born, and told me that every child, including mine, has unique strengths,” she says. “I went from being completely ignorant about the condition to learning so many things about my daughter’s potential. For one, I didn’t know that she has a great capacity for English and Chinese vocabulary. If it wasn’t for the support from HKDSA, [the helplessness] would have dragged me down.”

HKDSA wants to offer facilities and services that cater to a broad spectrum of needs. Its most recent centre, the Jockey Club Down Syndrome Centre in Chai Wan, funded by the Hong Kong Jockey Club Charities Trust and opened in May 2019, includes a music room, a pantry and sensory space where members receive art and music therapies and occupational training, and is the main site for group training sessions, sport, life skill and language enrichment programmes, and social activities. This, says the organisation’s president, is a vast improvement on what was previously available.

“Back in the day, there were many pockets of training centres, but our members never felt a sense of belonging. This is like a second home, where parents can bring their kids and feel that [it’s safe for them to] go and buy groceries for an hour,” says Tang-Owen. “I mean, I have one [able-bodied] child and I’m already struggling to figure out how to run errands. I can’t imagine how [parents of children with Down syndrome] work.”

Tang-Owen’s father, the late Sir David Tang, founder of Shanghai Tang and a well-respected philanthropist, served as HKDSA president from 1993 until his death in 2017. When she took up her father’s role in 2018, she furthered his efforts by introducing the The Upstairs Programme, a collaboration between The Upper House and HKDSA aimed at upskilling individuals who have Down syndrome and extending the conversation about employing them.

Every year, except for when it was cancelled in 2020 and 2021 due to the pandemic, about ten trainees with Down syndrome or intellectual disabilities receive two months of training across the hotel’s guest experience, F&B, housekeeping and kitchen departments. Tang-Owen hopes other large companies will follow this initiative or be inspired by it to offer its graduates jobs. “That’s just the beginning. I’m hoping that other corporates will inject the system of training programmes [into their businesses]. If they think our graduates are good enough, then please offer them a job,” she says. One of the graduates has been working at The Upper House since his graduation. Inspired by this initiative, hospitality group Leading Nation and coffee shop chain Elephant Grounds this year have also provided two-month internships for people with Down syndrome.

The idea was initiated by Marcel Thoma, The Upper House’s then general manager, who had a friend with Down syndrome who studied in a Swiss vocational school, which had the facilities for additional support. “It was totally normal to imagine that someone with Down syndrome could be trained and directed to do a certain job,” says Christopher Owen, Tang-Owen’s husband. Hong Kong, he feels, isn’t short of people willing to make a donation to charity, but it lacks the mindset, facilities and system to support the individuals’ training and development. “It’s not just the government’s, my or your responsibility, but everyone having a little bit more sympathy, empathy, patience and imagination of the one little thing you can do to bring a change.”

Change, while slow, is happening. Tang-Owen says, “In the past, [Down syndrome] was something that people didn’t like talking about. There was no formal organisation to help and support these members.” But now, companies want to be involved; Tang- Owen and her husband are working hard to connect NGOs, companies and social enterprises: Hong Kong Disneyland, Chinachem Group, Blossom Minds, Jia Group and Dignity Kitchen are a few examples of bodies working with HKDSA to create training and work opportunities for people with Down syndrome. “We’re meeting more Gen.T people as well,” she says, referring to honourees of Tatler’s community and media platform that spotlights the ideas and young leaders shaping Asia’s future. “It’s about how we [HKDSA] can be the platform to help these people connect the dots. You never know what other social enterprises or corporates are looking to do, and that’s where the conversations start.”

This year’s Upstairs trainees will graduate later this month. The HKDSA team is also hard at work preparing for its AGM in November and a fundraising Flag Day in January 2024. While Lee is excited to see how these internal and external initiatives will bring social integration and inclusiveness to the next level, Lee has a reminder: “Don’t view people with Down syndrome as pitiable and only needing our help. They are part of our society. They have their rights. With good training and support, they can contribute to society.

“That’s the mindset we need to start having.”

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The Hong Kong Down Syndrome Association (HKDSA) has been named as the Hong Kong charity for Tatler Gen.T’s Phoenixes of Tomorrow (PoT) fundraising project. The initiative is based around the creation of unique profile picture (PFP) NFTs, which have been created and distributed exclusively to honourees on the Tatler Gen.T List 2023, Tatler’s annual index of young people creating a positive difference in the world through their work.

The PFPs depict a phoenix, the mythical bird that rises from the ashes of defeat to embody fire, spirit and purpose, a fitting mascot for anyone on the Gen.T List. The NFT collection was designed by Singaporean artist and 2022 Gen.T honouree Dawn Ang, aka Aeropalmics. The design work is representative of her style, mixing vibrant colours with playful details.

In addition to their individual PFPs, each Gen.T honouree has also been given 100 Friend of Phoenix (FoP) NFTs, which they can sell to pay their success forward and benefit those in need. Each honouree’s PFP will then evolve visually, based on how many of their 100 FoPs are purchased. The FoPs can be bought by anyone in their network or beyond on the NFT marketplace OpenSea, with the money raised from sales being donated to a specific charity in each Tatler Asia market.

As HKDSA’s president, Victoria Tang-Owen attended the Gen.T 2023 Leaders of Tomorrow gala dinner in June when the PoT project was unveiled. Tang said that the project would assist in continuing her father’s legacy with the HKDSA. “The organisation expresses gratitude to Tatler Hong Kong and the Gen.T honourees for the proceeds of the NFT collection Phoenixes of Tomorrow, which will go to benefit our members and families,” she said. “With this funding, we can upgrade our vocational rehabilitation services and provide skills development opportunities to help our members stay active and delay the accelerated ageing process. We will be working with therapists, paramedics and social workers to provide exercise classes, caregiver counselling, volunteer training and other relevant services.”

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