Meeting the needs of the disabled and their caregivers

Meeting the needs of the disabled and their caregivers
Madam Faridah Thamby (left) calming her son, Fahmi, down by gently touching his arm and singing to him. Fahmi was born with Robinow Syndrome, a rare disorder that affects his body’s development. When he was four, the doctor said that he had no hope to live. But Madam Faridah refused to give up. She patiently learnt how to tube-feed her son and dedicated herself to providing round-the-clock care for Fahmi. Now 15, Fahmi no longer needs to be tube-fed and can get around by himself using a walker. Madam Faridah says Fahmi’s improving condition was only possible thanks to the support she has received from her family, friends and his teachers at Asian Women’s Welfare Association (AWWA).
PHOTO: The New Paper

For the past 15 years, Madam Faridah Thamby has dedicated herself to providing round-the-clock care for her son Fahmi, who was born with Robinow Syndrome - a rare disorder that affects his body's development.

Although she was told that he would not live past a toddler's age, Fahmi is now 15 and is a student at the Asian Women's Welfare Association (AWWA) School at Yio Chu Kang.

Being a full-time caregiver means it is tough for Madam Faridah, a housewife, to make plans for herself.

She told The New Paper: "There is no time. I want to go to Mecca and perform my Haj but who will take care of Fahmi? He needs specialised care."

Improving the well-being of caregivers and supporting them in their future care-planning are two of the 20 recommendations released yesterday in the third Enabling Masterplan, a five-year roadmap which will guide initiatives for the disabled from 2017 to 2022.

These recommendations, released by an expert committee developing the masterplan, revolve around four key areas: improving the quality of life for persons with disabilities, supporting caregivers, building the community and building an inclusive society.

The 22-member committee comprises people with disabilities, their caregivers and representatives of service providers, government agencies and companies. It is chaired by Ms Anita Fam, vice-president of the National Council of Social Service.

Over a period of eight months, the committee consulted more than 400 people before making the recommendations.

The recommendations were based on three key trends: people with disabilities living longer, more people having autism and an ageing population.

One of the recommendations of the committee is to find out if there is a need for a dedicated disability office to house relevant government agencies to meet their needs and coordinate disability-related initiatives, which cut across the health, education and social service sectors. Madam Faridah welcomed the recommendations.

"The fellow caregivers I meet at the AWWA have to go from place to place to find help and it can be difficult for us to get around, especially with our children," she said.

"It is a full-time commitment and I hope more can be done to help us."

Making it work for the disabled

Four years ago, she suffered a stroke which left her wheelchair-bound and unable to find a job.

Speaking to The New Paper yesterday, Madam Puspawati Abdul Razat, 51, said she was turned down wherever she tried to get a job.

The former cleaner said: "Who would hire me? I cannot move. I have no skills and even though I tried to be a cleaner again, they didn't want me.

"Even if I sell tissue paper, it won't be enough."

The third Enabling Masterplan seeks to help people like Madam Puspawati have better access to jobs.

It suggests developing a spectrum of open, supported and customised employment models for people with disabilities. The committee also recommended scaling up efforts to build employers' capabilities in hiring and managing employees with disabilities.

In the executive summary of the recommendations, the committee said research shows people with disabilities who are employed "lead more fulfilling and enriching lives".

It added: "The Committee is of the view that there is a need to expand employment opportunities and job support programmes, and provide better support to employers of persons with disabilities."

Madam Puspawati welcomed the news, saying: "If those recommendations come true, then maybe one day I can work again."

This article was first published on December 21, 2016.
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