“I hope we can stay together for as long as possible,” says So Po-Man, the mother of a young man with Down syndrome. One of her fears is her own aging and what it represents in terms of the care she provides her son. She is also afraid of not being able to stay with him much longer, as the “Government Residence for the Elderly” policy does not include cases like hers, in which the family unit must remain together. “My husband and I are aging, and even though we are less capable, we want him to stay with us,” she tells the newspaper.
Down syndrome results in disruptions to physical and intellectual development, often associated with congenital heart defects, vision problems, dementia, and other comorbidities. The average life expectancy is 60 years, according to the Global Down Syndrome Foundation, with the United Nations estimating an incidence of 1 in 1,000 newborns. In Macau, there are 48 cases registered at the Social Welfare Bureau (IAS)—36 aged over 18, and one already over 65.
Although they are a minority, Jacky Ho, Dean of the Faculty of Health Sciences at the University of Saint Joseph (USJ), emphasizes that social services should not be structured solely based on the number of cases. “Usually, people with Down syndrome begin to experience physical decline starting at age 40. Advances in medicine allow them to live longer, but parents also age, so the question is how we can support families when both parents and children are considered elderly.”
“I hope we can stay together for as long as possible,” says So Po-Man, the mother of a young man with Down syndrome.
In this sense, social systems enabling joint residence become more urgent. Last year, the USJ signed a memorandum of understanding with the Macau Down Syndrome Association—chaired by So Po-Man—to study the local reality. One solution they aim to introduce to Macau is alternative elder care models that can serve doubly elderly families. “Could resources be allocated for social and economic housing that allows these families to live together? Could there be diversified and adapted housing forms in these buildings?”
One proposed solution involves utilizing spaces reserved for services in public housing to establish social projects that address the integration needs of vulnerable groups. “We should not neglect the care of these people just because they are few,” Jennifer Chau, President of the Fu Hong Rehabilitation Association of Macau, tells PLATAFORMA.
The IAS explains that since 2019, it has prioritized allocating public housing to doubly elderly families, exemplifying a unique case of a mother and daughter residing in the Seac Pai Van Community Complex—one in an elderly care home and the other in a rehabilitation center. Although they do not live together, the IAS has coordinated with both institutions to make family visits more frequent.
Meanwhile, in response to legislator Song Pek Kei regarding the “pilot project of parent and child vacancies in care homes,” the IAS has been working with care homes in Mong-Há to accommodate such cases, with a new home for the elderly and people with intellectual disabilities planned for Zone East 2, still in the planning phase.
“So the question is how we can support families when both parents and children are considered elderly.” says Jacky Ho, Dean of the Faculty of Health Sciences at the University of Saint Joseph (USJ).
No Subsidies
Wu’s son was diagnosed with heart problems associated with Down syndrome at a young age. The Macau government financed the operation in Hong Kong, which was a great relief. Her husband has since passed away, and while she admits that it was not always easy to care for her son while working, the support from local associations has left her with little to worry about. “If I can’t take care of him anymore, I can ask for help from other organizations. We’ll see what can be done because worrying is pointless.”
However, Wu’s attitude is not shared by all families living with Down syndrome. The Macau government provides subsidies to caregivers of people with physical and mental disabilities, but Down syndrome is not covered. The Fu Hong Association explains that most of their users with this condition have an intellectual capacity equivalent to a child under 10, with at least one parent not working to provide care. “Shouldn’t we consider these situations more seriously?” Chau questions.
Chau suggests a review of subsidy allocations to “evaluate who truly needs support and whether the need is prolonged, as is done in Hong Kong.” Additionally, she calls for the government to subsidize prenatal testing for early detection, allowing parents to make informed decisions.
For now, both So Po-Man and Wu would appreciate support regarding medical care. Wu’s son recently lost his dental prosthesis, while So Po-Man’s son had to go to Hong Kong to purchase glasses, which cost thousands of patacas. “If I could use health vouchers, that would save some money,” So says.
In response, the IAS states that it created the “Functional Capacity Checklist for People with Intellectual Disabilities” in 2022 to assist in evaluating users’ functional capacities. The organization also emphasizes its support for community organizations developing diversified services for these families and its commitment to further developing social infrastructure for people with intellectual disabilities.
