Caring for a loved one with special needs is extremely challenging. Even among families with a special needs member, the challenges faced vary significantly from one family to another. Physical and emotional support are critical, both for the special needs individual and the family members.
An element that is equally important but frequently overlooked is financial planning for the special needs individual.
In the natural order of life, parents care for their children until their kids are old enough and are able to earn a livelihood for themselves. As parents become older, adult children would then have a role reversal with their parents and be the provider instead, possibly providing both financial, emotional and physical support for their elderly parents in their old age.
However when it comes to special needs children, provision of care from parents never really stops, even as parents themselves become older and may have stopped working. Because of this, careful and adequeate financial planning required as such families cope with significantly different challenges that are much more complex than that of a regular family.
Additional Income Support
Most special needs individual would require significant or full income support for the entire duration of their lives. While some are able simple jobs to earn an income for themselves, there are many others who are not able to do so.
As such, income support to upkeep their basic living expenses would need to be provided for. Typically in Singapore, this income would have to come from their families, either through the parents and/or later through the siblings. This becomes a financial burden because not only do their parents need to spend more on additional expenses such as hiring a domestic helper, but would also need to care for their child for their entire life.
On this note, we find it grossly inequitable that there could be perfectly healthy people who stand to gain from unemployment or work benefits, while there are families with special need children that have little or no chance for any form of financial support.
We understand Singapore’s rationale behind providing incentive that encourage people to work, but what about those who are simply unable to work due to no fault of their own?
Parents need to work extra hard not just to care for themselves and their retirement needs, but also to save up and care for the current and future needs of their special needs child. This is in addition to all the extra time and sacrifice that they already have to make.
In an inclusive and empathetic society, where can parents of a special needs child look to for help? Perhaps the Singapore Government? What about insurance? Or perhaps people think they should live with it in silence?
As much as it hurts to say, special needs people are a group that are neglected by insurance companies, perhaps for the sake of profitability. From what we know, in Singapore, only NTUC Income has a policy that is specifically caters for children and young people with autism. Even then, coverage is limited, with a maximum entry age of 30 (so those above this age when the plan was launched would not qualify). You can find out more about it here.
Once again, we find it hard to understand why a rich nation such as Singapore would be unable to find a better way to ensure health coverage for people with special needs. And because special needs people are unable to get coverage from insurance companies, their parents typically would have to bear all the burden of any medical costs incurred.
Special Need Saving Schemes
The Special Need Saving Scheme (SNSS) was developed in 2014 by the Ministry of Social Development (MSF) in partnership with the CPF Board. The purpose of the SNSS was to enable parents to set aside their CPF savings for the long term care of their children with special needs. Under this scheme, parents can nominate their special needs loved ones to provide for a regular stream of fixed payouts upon the parent’s demise.
The SNSS is far from a game changer. What it does is that it allows parents to continue providing a fixed payout to their special needs child from their CPF until the parent’s saving is exhausted. Parents would still have the full responsibility of solely providing for and ensuring that they have enough savings, or assets, to outlive the life of their special needs child. This is in addition to managing their own retirement.
If you think retiring in Singapore is hard, try doing it while having to care for a special needs child as well.
Setting Up A Trust With SNTC
Setting up a trust for a special need child is one of the main ways to ensure that a child is taken care of after their parents have passed away. By setting up a trust and designating a special needs child as the beneficiary, parents would be able to park assets that they have set aside specifically to be used for the living expenses of their child in the future.
A trust is important particularly if you wish to avoid placing financial or legal responsibility on your other family members. The Special Needs Trust Company Ltd (SNTC) is one such organisation that parents can turn to.
SNTC works with the appointed caregiver to dispense funds and to ensure that special needs child are supported after their parents are no longer around. Because the Singapore Government supports SNTC, the fees charged by SNTC are 90 to 100% subsidised by the Singapore Government.
Do note once again that SNTC only helps to facilitate this process of looking after special needs of people with assets that their parents have left behind for them. It does not provide any additional monetary support aside from what the parents have included in the trust. If the money in this trust is exhausted, support for the special needs child will cease.
More Needs To Be Done
By now, you would have realized that there is no easy way for a family to be supporting a special needs child. Parents have the full responsibility to provide for their special needs child.
We think that our country can definitely render more support to this under-represented group in our community. Families with special needs children have to provide additional care and support for their child and also manage the associated financial obligations as well. To add to their worries, simple instruments such as health insurance that the rest of us are entitled to are not available to them as well.
We believe a first world country like Singapore can and should remain a compassionate one. We should expect the healthy people in our community to work hard and continue being productive members of society. At the same time, we should also do more to support the people in our society who may not have been as fortunate as us.
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