Growing up as a volunteer with MINDS Youth Group, a group that organises outings and sessions for those with special needs, I remember that one of my most poignant moments came when I returned to volunteer after spending three years studying overseas. One of the beneficiaries, upon seeing me, ran up to me, wrapped his arm around my shoulders, and shouted,
John, long time no see! Where you go?
It struck me that whilst I had ‘moved on’ with my life, these beneficiaries were still happily content with where they were. Whilst they had gotten older, their futures hadn’t exactly moved. Visiting these beneficiaries in their homes, you would hear snatches of these worries from their caregivers. Like who would care for their children. Or whether there would be a home they could continue to live in. Or how they would handle the money passed on to them. As caregivers aged, they weren’t quite sure about how to plan for the futures of their special needs children.
The Challenge
To understand more about how to future-proof your child, I spoke to a social service professional working within the disability sector. She declined to be named for this article. She shared about how there have been many advancements in the social service sector in future planning for those with disabilities, such as the introduction of the Enabling Guide, a one-stop hub for caregivers to find information about the resources they need.
But she also shared that difficulties still existed, particularly with the transparency of the options available, and their respective costs. She also recognised that whilst there were efforts to ramp up the capacity of elderly homes, there were still problems meeting demands, especially with Singapore’s ageing population.
This article hopes to share how you can plan a more secure future for your special needs child. As much as few of us want to think about the day when we can no longer be present with our loved one with special needs, thinking about it is prudent.
Read Also: Financial Planning For The Future Of Your Special Needs Loved Ones
The Principles
Let’s start with the principles, before going down to the details.
Start Early
She shared that the first principle is to start early. Her advice?
Start planning now. You don’t have to have all the answers. Plans can and will change.
She recognised that many service users who came to her for advice on how to plan for their child’s needs were often stuck because they didn’t have the answers. She saw many of them hesitate on the start of the planning because they felt that they should have the answers before starting. But her professional advice is that having a plan with some gaps, is better than having no plan.
The other reason why you should start early is that some of these housing options may have a long waiting list. You never know how long it will take before a spot shows up. Starting early allows you to be prepared for the time when there’s a vacancy.
Reflect on the journey
Secondly, it requires a certain degree of reflection about:
- What is important to you?
- What is important to your child?
- Where do you think your child will be (needs-wise) in 5 years?
- What are the gaps you are seeing in the current provision of care?
- What needs to be done?
Thinking through these questions can make you readier for the time when you meet a professional to plan out the care gap.
Talk To A Professional
Lastly, she admits that even as a professional, she does find it difficult to keep track of all the options. She’s had to do her own research to help those caregivers that come to her. She doesn’t expect caregivers to know everything that’s out there. That’s why her advice is to speak to a professional.
There are many professional services run by charities that are funded by the government. Some which can help are Rainbow Centre’s Family Empowerment Programme or MINDS’ Caregiver Support Services.
If you prefer a self-help option, you can start with the Enabling Guide to find the list of options that are available.
Your Own Care
There’s the oft-heard adage in airplanes – put on your own oxygen mask before helping your loved one. In much the same way, planning for the future needs of your special needs child is about first planning for your own future. For that, we need to talk about something that we’re rather squeamish about – our own death. More specifically, how we would want to die when we no longer know who we are, where we are or who we’re with. You’re in a coma. In that case, would you still want your life to be artificially prolonged or to be let go? That’s when the Advance Care Plan (ACP) comes in.
Having an ACP, is like having a voice recorder that records your wishes, for the day if you’re no longer able to communicate those wishes. You nominate a spokesperson that’s able to represent your wishes to the doctors. It makes things clear for your loved ones about how you want to live, or leave. This is important, especially for your special needs child, who may not be able to communicate your wishes to the doctor.
Secondly, being clear about how you would like your assets to be distributed after you’re gone through a will is vital. That is where the Special Needs Trust Company (SNTC) comes in.
Finance
Knowing that special needs children lack the capacity to manage their own monies, SNTC was set up to make it easier for caregivers of those with special needs to ‘put in place proper plans and arrangements that will enhance the financial wellbeing’ of those with special needs.
There are two types of arrangements you can make with SNTC. You can either set up a Trust or the Special Needs Savings Scheme (SNSS). Under the Trust, there will be a dedicated social work Case Manager who will develop a care plan involving different aspects such as housing. The cost of setting up the trust is subsidised by the Ministry of Social and Family Development (MSF).
Under the SNSS, you get to nominate your loved one to receive your CPF monies after your demise. It disburses a monthly sum from your CPF to your special needs child. It is recommended for those who do not have substantial assets outside of the CPF. Think of the SNSS as a complementary service to the Trust service, rather than you having to choose one or the other.
Decision Making Responsibility For Your Special Needs Child
As your special needs child may not have the mental capacity to manage their own finances, or make decisions about their own healthcare, having someone who can manage and make decisions in their best interests, after you’re gone, is important. You can do that by appointing a deputy for your child. This deputy will have the ability to, amongst others,
- consent to medical treatment
- decide where he lives
Doing this can be a tedious process through the courts. It is recommended that you start this sooner rather than later.
Care
Who will take care of my child after I’m gone?
Talk to a case manager at SNTC to come up with a customised care plan for your child. The case manager can then introduce you to the current options available. Often, the social service professional, in planning with families around their child’s needs finds that the common care needs that are put in place are those involving food, personal care and medical escort services.
For food, there are options such as Meals on Wheels, that are provided by agencies such as the Agency for Integrated Care. The other is personal care, which can be provided by home personal care assistants such as Thye Hwa Kwan or TOUCH Community Services. The last are medical escorts who can accompany your child to the hospital, and safeguard the interests of your child. Providers include AIC.
Housing
One of the biggest worries for parents with special needs children is where their children can stay after their demise. Whilst staying in the current family home is possible, this needs to be clearly stated in one’s will to prevent confusion over how the house will be settled after one’s death.
The social service professional I spoke to agreed that one challenge was the lack of transparency regarding the cost of housing options. Broadly speaking, there are three main types of housing options for your child.
The first is a residential option, where your child stays full-time at this home. This can be at a nursing home or an adult disability home. This is often for those with moderate to severe needs. It can cost from $1000 to $3500 per month. You can find more information about what these homes are from the Enabling Guide.
Then there’s the in-between option. Often called assisted living, this is the ‘in-between option for community and residential living’. Providers include those like Red Crown and St Bernadette Village. This can range in cost from $2500 to $5000.
Lastly, there is the community living option, where your child continues living in the current family home. Your child can inherit your family home, although this needs to be specified in your will. However, as your child ages, you may need to discuss with your other children (if you have) about who will be responsible for the care of your child with special needs.
Housing options available, information on costs sourced from professionals and writer’s own research (current as of 6 Apr 2022)
Don’t Wait Till It’s Too Late
As we emerge from COVID, if COVID has taught us one thing, it’s that we never know what will happen. We never know what the future will hold. Few expected the world to be turned upside down from a virus no one could see.
It’s not about having a plan for your special needs child, but about planning. Plans can, and will change. What’s important is our intention to think about it, sooner, rather than later, however uncomfortable it may be. Few of us like to talk about our death, and for the day when we are no longer be with our loved ones with special needs.
Beyond thinking and talking, let’s also take action. These small steps – talking to a case manager at SNTC, having a will, are significant. And they secure the futures of those we love, so they can continue to live, even when you eventually leave.
Read Also: The Cost Of Mental Health – And Why You Should Treat It Before It’s Too Late
When John isn’t writing, he’s busy lifting (light) weights. John is a writer that is excited about helping young adults to live healthy, passionate and purposeful lives at work. He writes at liveyoungandwell.com.
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