Caregivers laud new plans for people with disabilities, but worry about their kids as they age

Madam Faraliza Zainal with her 22-year-old son Ashraf, who has autism and tuberous sclerosis. PHOTO: MINISTRY OF SOCIAL AND FAMILY DEVELOPMENT

SINGAPORE - Madam Faraliza Zainal's biggest worry for her son, who has autism and tuberous sclerosis - non-cancerous tumours - is his epileptic fits that can happen any time and anywhere.

Feeling anxious or tired can trigger 22-year-old Ashraf's epilepsy, and it does not help matters that "he is a worrier", she said.

He once had an episode at work, but fortunately, it was at a disability employment centre run by Madam Faraliza - the My Inspiring Journey hub. "But what happens if this happens in an open employment setting?" she said.

Her concerns were heard in the latest iteration of the disability road map launched on Wednesday (Aug 17) to support people with disabilities (PWDs) and enable them to contribute to society.

The Enabling Masterplan 2030 laid out initiatives to be rolled out over the next eight years to tackle the areas of lifelong learning, employment and building an inclusive environment for PWDs.

Highlights include a target of 40 per cent employment for PWDs, up from the current 30.1 per cent, by increasing the number of inclusive employers and alternative forms of employment such as temporary task-type jobs.

It also includes Enabling Services Hubs, or centres to support PWDs in the neighbourhood, and a new taskforce to come up with alternative community living models.

Madam Faraliza, 51, said: "These are good plans, but their impact will depend on how they are rolled out." She gave the example of how her son needs support when his epilepsy strikes, and sensors to notify helpers when it happens.

She added that the plan to boost employment for PWDs may be more helpful for those with lower support needs, rather than those with moderate-to-high support needs like her son.

She lauded the masterplan's proposals to support caregivers, including the Enabling Service Hubs, which will offer caregivers the option of drop-in respite care.

Muscular Dystrophy Association Singapore director Sherena Loh, who is on the steering committee of the new enabling masterplan, herself has muscular dystrophy - a genetic condition that gradually causes the muscles to weaken.

Speaking at the launch of the masterplan at the AWWA adult disability home and day activity centre in Pasir Ris on Wednesday, she said being able to work makes her feel a part of the community. She praised the masterplan's proposal to improve access to assistive technology to help PWDs overcome their limitations.

Muscular Dystrophy Association Singapore director Sherena Loh said being able to work makes her feel a part of the community. ST PHOTO: MARK CHEONG

"My condition is degenerative. I gradually lost my mobility and now I totally rely on a motorised wheelchair. This technology helps me be more independent. If I didn't have it, I would need someone to wheel me around," Madam Loh said.

"We see many people with muscular dystrophy who are ageing and getting weaker. Their caregivers, who are usually their parents, are also ageing.

"I'm looking forward to seeing how we can expand respite care options and train more people to take care of those with this condition."

Madam Loh, 63, who lives with her husband and helper, is also in favour of the move to develop community living models for PWDs - she said she would not want to live in an institutional home, even if she needs such support, as she wants the freedom to meet her friends.

Individuals with disabilities attend a baking class at AWWA's Home and Day Activity Centre on Aug 17, 2022. ST PHOTO: MARK CHEONG

Mr Chong Kwek Bin, former head of employability and employment and advocacy at the Singapore Association of the Visually Handicapped, said employment has always been a challenge for the visually impaired due to employers' perceptions on their abilities, the challenges of travelling to workplaces, and the technology needed to support them in their jobs.

Mr Chong, who is visually impaired and also part of the steering committee for the new masterplan, added that the plan's other focal areas are closely linked to serve this end, such as initiatives to improve public perception, recognise inclusive employers, improve transport accessibility, provide lifelong learning support, skills training, and improve access to assistive technology.

The disability road map launched on Aug 17 helps support people with disabilities and enable them to contribute to society. ST PHOTO: MARK CHEONG

Another caregiver, housewife Anu Sethi, 54, said it is hard for her to manage her 25-year old autistic son when he has meltdowns, due to his larger frame.

She hopes her son can work and travel independently, and that transport and medical systems can better cater to autistic people, such as an option on ride-hailing apps for autistic passengers, and a priority queue for autistic patients who are unable to wait for long periods to see the doctor.

"The (autistic) population is young now and probably just needs the GP (general practitioner), but 10 or 15 years from now, they will need full-fledged medical services," she added.

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