People with disabilities, caregivers call for better healthcare and job support as task force weighs recommendations
Better employment opportunities, more affordable healthcare and stronger financial support were among the key priorities raised during consultations by a government task force, which will announce its recommendations later this year.
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SINGAPORE: When Mr Phua Wee Seng’s six-year-old son was diagnosed with a rare genetic disorder, his family had just weeks to decide whether to proceed with a life-saving stem cell transplant. The treatment would cost about S$400,000 (US$310,000). Even after government subsidies, the family was told to secure a S$100,000 financial pledge before the procedure could go ahead. “I understand the part on sharing of risk,” Mr Phua told CNA. “But to put a certain hard stop because there’s a regulation requirement, and not understand the challenges of the family in terms of finances, and also the urgency of the matter to get the treatment ongoing … I think there needs to be greater empathy and understanding of (each) situation.” For Mr Phua, the experience highlighted the financial uncertainty many families face while caring for a loved one with a disability.
Those concerns were echoed by others during 31 engagement sessions conducted by a government task force on supporting people with disabilities.
The task force found that staying employed, expanding healthcare and community services, and reducing out-of-pocket disability-related expenses were among the top concerns raised by those with disabilities and their caregivers.
BETTER HEALTHCARE SUPPORT
Mr Phua, who is also executive director of the Rare Disorders Society Singapore, said financial insecurity is a common concern among the roughly 280 families the charity supports.
While MediShield Life provides universal basic coverage, many families also purchase private Integrated Shield Plans to reduce out-of-pocket costs for catastrophic illnesses.
However, Mr Phua said some children with rare diseases are diagnosed during insurers’ waiting periods or are excluded because of pre-existing conditions. He also hopes families navigating complex conditions can receive better care coordination. “Somebody, from the lens of a patient’s journey, guided us through the different milestones and transitions,” he said. “That (was) very helpful … so we know what we are potentially looking at and the options available instead of us having to, while still giving care, scramble to find all this information and put on the table for discussion.”
For many families, the financial burden extends well beyond hospital treatment. Living with a rare neurological condition, diabetes and an amputation, 56-year-old Sheldon Humphries said his biggest expenses are often everyday necessities rather than hospital bills. Basic essentials such as diapers and cleaning supplies cost him about S$200 every month. While charities and assistance schemes provide some support, much of it is temporary or subject to periodic review. “It’s quite a challenge … (sometimes) realising that the (financial support) drops because you might have a temporary job. But even with a temporary job, it doesn’t cover the cost of medical expenses,” he told CNA. Mr Humphries added that mental health support should also be made more accessible for people with disabilities, who often face additional emotional and psychological pressures while managing lifelong conditions. “Access to mental health is very limited,” he said. “Very often (we are redirected) to IMH (Institute of Mental Health), and we really don’t want to end up with that stigma just because we are just facing a difficult time. Sometimes, we just need in-the-moment support, and having access to the various partners or providers that can help with our quality of life.”
Among the ideas discussed during the task force’s engagements is a disability healthcare card similar to the Community Health Assist Scheme (CHAS). Mr Humphries said such a scheme could help subsidise more everyday healthcare needs, including visits to general practitioners and mental health support, making it easier for people to seek treatment before their conditions worsen.
INCLUSIVE EMPLOYMENT
Employment was another key issue raised during the consultations, with employers and caregivers alike calling for stronger support to help people with disabilities build meaningful and sustainable careers. Heritage business Kim Choo Kueh Chang began inclusive hiring in 2009 after facing manpower shortages. Today, the rice dumpling maker hires employees with disabilities across its production floor and retail operations. The company’s owner Edmond Wong said he believes employers need more support to scale inclusive hiring. One suggestion is to assign shared job coaches to clusters of small and medium-sized enterprises. “A trainer could be looking after the entire precinct. (This) saves a lot of resources and it might also even be better for our agencies to look into offering better work packages for their own employees because there’s volume,” he said.
Families also say meaningful employment should not be limited to traditional vocational roles. Education consultant William Tan came to that conclusion while planning for the future of his son, who has autism. His son tried jobs such as newspaper delivery, supermarket shelving and gardening, but none were a good fit. So, Mr Tan learnt how to run a vending machine business and created a role tailored to his son’s strengths – arranging goods. The work involves replenishing and organising products in the machines, with minimal customer interaction. “If the shops are not going to employ him, then I’ll have to create a shop for him … enable him to run his own little business,” he said, adding that having a job he enjoys has given his son a greater sense of purpose and belonging. “Residents no longer see him as someone who has special needs. They see him as someone who can provide a service. They treat him differently, they encourage him. His self esteem has also gone up.”
Encouraged by the results, Mr Tan now runs a programme that helps other families start similar ventures. Families pay S$3,900 for six months of training and business setup support, followed by another six months of vending machine leasing and operational guidance. The machines mainly sell snacks and drinks, with each family deciding what products to stock and where to source them. People with disabilities are responsible for replenishing and organising the products, while caregivers oversee tasks such as sourcing suppliers, securing locations and managing the business. At the end of the programme, they can choose to purchase the machine and continue operating independently or return it if the business is not a suitable fit. So far, Mr Tan has helped five families set up vending machines across Singapore, with more in the pipeline. The initiative partners organisations including community clubs, churches and CapitaLand, which provide subsidised locations for participating families. Still, Mr Tan said high commercial rents and the upfront capital required to start a business remain significant barriers.
He hopes more seed funding and business mentorship can be made available to help families create sustainable micro-businesses for their loved ones with disabilities.
The government task force is expected to announce its recommendations by the end of the year.
Source: CNA/dn(mp)
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