It’s tempting to say that this is a coincidence.
After all, it was just two weeks ago that I wrapped up my series reflecting on our nation’s inaugural Autism Enabling Masterplan. That’s a plan to muster all aspects of help and support for the autism community in my country.
As I ponder this matter, I must say that this does seem to be the year more awareness is being generated in the local media and society about those with special needs. A good thing for sure as we need more awareness, acceptance and support for Persons With Disabilities (PWD) to be included into the greater community.
At the same time, we mustn’t ignore the very people who care for them.
People like, say, yours truly!
Cos we too need help as we expend energy daily to care for our charges.
…the new Caregiver Action Map!
Launched four days ago, this new Caregiver Action Map (CAM) seeks to give organisations and agencies the necessary foundations to aid and improve the lives of caregivers of individuals with special needs.
In short, how to meaningfully support and help caregivers like me.
It’s really less a roadmap but more a snapshot of over 60 ideas that help caregivers who are stressed and overwhelmed with the challenges of caring for PWD.
This CAM was conceived by a coalition comprising of SG Enable and a group of 25 community partners, social service agencies and hospitals that came together in 2018. Called the Coalition of Partners for Caregivers Support, their goal? To help provide long term care and support for those who look after PWD.
There are three “pillars” to this action map. Let’s take a closer look at each.
Pillar #1: User-centric Service Delivery
The first pillar, User-centric Service Delivery (USD), likely got its name from the “sexy idea” banter around in recent times.
In case you’ve been living under a rock, it’s this idea that all goods or services should always be designed with the users’ needs and preferences in mind.
Gosh, the way it’s touted like some elixir, you would think it’s a revolutionary concept! Don’t people already know what they supply to others is in direct response to a felt need and demand? The only reason why this is so “sexy” and “revolutionary” is because many suppliers do a bad job paying attention to their customers and giving them what they really need.
But I digress.
Now with USD, CAM is mapping out a few realities for providers and support groups to factor into consideration when rendering care to caregivers and families with PWD.
These realities rest on the importance of understanding and supporting the unique needs of individual families. Personalised help based on careful needs assessment should be made readily available, as well as help caregivers transition from one stage of care for their love ones to another. (Transition stages are typically associated with different phases of life as people grow older.)
Success here will require coordination among various services and agencies.
A pretty tall order, given the diversity of needs among different PWD and their equally diverse caregivers.
Pillar #2: Self-help & Mutual Support
The second pillar, Self-help & Mutual Support (SMS), talks about how best to help caregivers take care of themselves and one another, while also advocating on behalf of PWD for acceptance and inclusion in society.
As caregiver of an autistic son for some three years now, I must say I really only started to recognise this idea of support for caregivers recently.
I recall attending an event where a series of speakers were talking about different aspects of caring for PWD. One stood out for me because her talk was not about PWD but about the caregivers, and how they too need to be given their own “me time” (or self-care time).
She was sharing several helpful tips with an engaged audience. Tips that included mindfulness exercises, and even pampering oneself with spas and bubble baths!
Self-indulgent or Self-care?
My first thought was how self-indulgent! I mean we caregivers are what we are right? Our special love ones and their PWD needs should take centre stage no? After all, we’re the “abled” ones, aren’t we? Why all this talk about caring for ourselves when it is our charges who need the most care and attention?
Maybe those thoughts are a product of growing up in what was then (and to some extent still is) a traditional Asian society. A society which has the Confucius philosophy of nation above self deeply ingrained in the collective psyche.
So to publicly talk about caring and pampering oneself seems almost vain, even sacrilegious.
But three years on, I have to say I better understand the need now and most certainly wouldn’t mind some SMS!
There are days when I just feel myself on the brink of a mental and emotional collapse from exhaustion. Exhaustion that doesn’t come from running a country mile, but from jostling with a ten-year-old to finish homework, tidy up toys, go outdoors (my son’s very “homely”), or submit to therapy activities that boost motor skills and toughen muscles.
So ya, vain or not, it is what it is, and I acknowledge right here and now I need care.
And if that, as the SMS pillar suggests, includes retreats, child-minding services, emergency or ad hoc respites, etc, then hey I’m all in.
Pillar #3: Community & Social Inclusion
The third and final pillar, Community & Social Inclusion (CSI), is all about building an inclusive community and neighbourhood.
For each and every caregiver, not a PWD.
Something I harp on plenty in my blog until now has been about caring for PWD, and the importance of building up a community that holds them close and central.
But something similar for a caregiver, like what this CSI pillar describes? That’s new to me.
Of course I don’t mean I don’t need a friendly listening ear, or a comforting shoulder to cry on every now and then. I absolutely do!
But a constant community? One that will work tirelessly towards developing an inclusive mindset through educating the next generation? Making public spaces more conducive for me and not just my son? Creating a work environment that’s friendly to caregivers? Allowing for easier transportation options for us?
Honestly, other than advocating for inclusive education, I’ve never thought about the rest of these stuff. But now that I know, well I can’t “un-know” it anymore, can I? So moving forward, I definitely must find out as much as I can, how to clearly identify these communal needs and boldly ask for them.
It’s called “self-care” my dear. Look it up!
I am comforted that there are collections of people in my country who are aware of the needs of caregivers and are mapping out what’s needed to help get us that help.
Thankful that the Confucian ethic of self-sacrifice at the expense of sanity for caregivers is being deeply questioned and hopefully thrown out the window. Especially if it prevents caregivers from openly coming forward for help (even as we own our vulnerability and need for care), without fear of mockery or reprisal.
Yes it’s about self-care my dear, and perhaps there’ll be times in future blog posts where I might expand further on this to encourage not just me, but another caregiver. To help recognise the danger signs when we’re all burnt out. To take precautionary measures to re-calibrate and re-balance whenever the need arises.
And for that, I sincerely hope that CAM can come to our collective rescue!