Getting ready for the Future with MINDS Future Care Planning
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In caring for his daughter, Ayano, who is has intellectual disability, Mr Frederic Maury has three main concerns. First, to make sure she has food and shelter. Second, to give his daughter the opportunity to contribute to society, and finally, that she has the chance to develop her own interests and flourish.
By and large, Mr Maury and his wife, Mrs Yuko Maury, have succeeded. 19-year-old Ayano attends the SIA-MINDS Employment Development Centre five days a week and is a member of the Girl Scouts. In her free time, she enjoys hiking with her father, swimming, watching YouTube videos and recently going to art classes where she does painting and pottery.
The two acknowledge, however, that it’s unlikely Ayano will be fully independent in the future, and that she will continue to need supervision for everyday tasks such as eating, changing clothes or brushing her teeth. “As long as her father and I are available, it’s fine. But after we pass on — what happens to her?” Mrs Maury asks.
Discovering An Ecosystem of Support
The question hovered at the back of Mr and Mrs Maury’s mind for years. They were particularly troubled by the fact that they had no family members in Singapore to turn to. They also did not want their younger daughter, Ayano’s 14-year-old sister, to be obligated to become Ayano’s primary caregiver.
“Whenever we thought about the future, we felt a little helpless about what to do,” Mr Maury says. As a result, the couple had not taken any action to plan for Ayano’s future—until 2020 when MINDS Lee Kong Chian Gardens School, which Ayano had been attending, invited them to a workshop on future planning for parents.
This is where they learned about the Assisted Deputyship Application Programme (ADAP), an initiative that makes it simpler and more affordable for caregivers of children with special needs to be appointed as deputies for their child. It also introduced them Special Needs Trust Company (SNTC), a non-profit organization dedicated to providing affordable trust services for persons with disabilities.
Walking Hand in Hand with MINDS Future Care Planning
“It was an ‘aha’ moment when we realised we were not alone and that there was a whole ecosystem of support,” Mr Maury recalls. Encouraged by this information, he and his wife turned to the team at MINDS Future Care Planning (FCP) to create a care plan. With the support of Heather Loi of the FCP team, they decided to apply for deputyship as this would allow them to continue making legal decisions for Ayano after she turns 21.
It was a challenge to understand the legal process, but “Heather and the team were very, very patient with us,” confirms Mrs Maury. She relates that the team at FCP not only provided advice, but also sent helpful reminders about what needed to be done and checked to make sure all the right forms were submitted.
Heather explains that the challenges Mr and Mrs Maury faced are normal for caregivers, especially since the ADAP process can take up to four months. “That’s where FCP comes in,” she says, adding that the team supports caregivers throughout the process — from educating them on the importance of deputyship, to walking them through each step of the application process. “It’s important to plan for the future, and we hope to help each family begin the discussion about future care for their child with special needs,” she reiterates.
As parents, we have a responsibility to plan for our children, and this even more so when they have special needs.
Mr Maury
Father of Ayano
Small Steps Can Go A Long Way
Reflecting on the process thus far, Mr Maury shares that “the FCP team helped us in ways we could not imagine.” With their guidance, he and Mrs Maury have not only applied for deputyship, but also found an insurance plan catered to those with special needs and signed up with SNTC trust services to help safeguard the funds for Ayano’s future.
With these financial aspects settled, they are now beginning to look into other programmes that can cater to Ayano’s future social and emotional needs as well.
His advice for other caregivers of PWIDs is not to let fear or inertia stand in the way of thinking about the future. “As parents, we have a responsibility to plan for our children, and this even more so when they have special needs,” he says. Although he empathizes with the worries that one may have, experience has shown him that help is available, if only one is willing to reach out and ask.
While it may look and feel like a daunting journey, we empathise with the struggles and encourage caregivers to take the first step in making future care plans for their loved ones with special needs. The MINDS Future Care Planning (FCP) programme is here to walk with you each step of the way. Reach out to your loved one’s school or centre for advice, or contact the FCP team at fcp@minds.org.sg!
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