By Rebekah Devlin
Exhausted. It’s the word that came up repeatedly in our inaugural Source Survey.
We’re exhausted from two years of Covid, from lockdowns, from isolation due to immuno-compromised kids.
Isolation that still hasn’t ended.
Exhausted from trying to make telehealth work and from all the running around to the various appointments, from trying to squeeze our way onto waitlists.
The other words that featured in our survey were stressed, overwhelmed, anxious and isolated.
A staggering 93 per cent of you say your health has suffered as a result of your caring role.
And overall, you rated your happiness at just 7.4 out of 10.
These figures show there is much to be done to address carer burnout.
Because we are exhausted.
Exhausted from fighting for our kids.
Fighting the NDIS, fighting their school, fighting for them to find meaningful work, fighting for acceptance.
We’ve dealt with bushfires, floods and now mould, and frankly, a lot of us are at breaking point.
Of course, we are incredibly grateful for the support offered by the NDIS. It is life changing for our kids.
But that does not mean we need to sit quietly while all this is suddenly ripped away with widespread and unexplained cuts to plans.
And if it hasn’t happened already, we are terrified that our child’s funding will be next.
We are exhausted from having to review every plan.
Overwhelmed at having to head to the Administrative Appeals Tribunal and fight the NDIA’s highly-priced lawyers, just to get the funding that we’ve spent thousands of our kids’ plans getting reports for… only for therapists’ recommendations to be totally ignored.
We are outraged that the NDIA would rather spend $32 million on lawyers in just eight months to fight us, than give that money to NDIS participants.
WE NEED HELP
And when we say help, we mean actual, real-life help. Not yet another online course on techniques to deal with stress, or ways to find time for ourselves. These may as well be teaching us to fly to the moon!
We need practical help. Support worker help – 83 per cent of you think that having a support worker would have a tangible impact on improving your stress and mental health.
And 45 per cent listed support workers as the most important thing you need in your plan that you currently don’t have/or don’t have enough of.
There is no more frustrating phrase in NDIS land than “parental responsibility”.
I want NDIS policy makers to spend a day with families across Australia and tell us if they still think our request for assistance is merely parental responsibility.
I want them to try and take both my autistic kids to the supermarket together.
Take them anywhere together and see how that goes.
Try holding on to one kid while the other one sprints away from you and crosses roads without looking. Or when one has a meltdown in the middle of a Bunnings carpark, and you have to abandon your child in a pram to stop your other child from being hit by cars while they lie screaming in the middle of the road.
Maybe then they’ll understand our requests for a support worker.
Or watch a mum deal with all that needs doing when their child is non-verbal, or PEG fed, or in a wheelchair.
See how hard it is to take them to the toilet, how long it takes to hand feed them each meal.
Try lifting your adult child and see what it does to your back after a while.
Maybe then they’ll realise the phrase parental responsibility is beyond insulting.
For too long, the needs of carers have been described as irrelevant when dealing with the NDIS.
We’re not talking about support workers so we can go get our nails done, although really, what is so wrong with that? We’re talking about help so that our lives actually function.
We’re talking about lifting the load so we feel like we can breathe, so that we’re not in a constant state of flight or fight.
Help so that our marriages survive.
Help to be able to do the grocery shopping.
Or eat a meal at a restaurant together.
The family unit needs to be looked at as a whole.
Because if mum is broken, the whole family will soon be broken too.
It’s about fitting our mask first and being able to believe in a better future.
A GLIMMER OF HOPE
That tiny ember may well be starting to glow a little brighter.
We were heartened that Bill Shorten agreed to take part in our NDIS forum in the lead up to the election.
We raised the issues of carer burnout, of plans being slashed, the case for support workers, for better training of LACs, particularly around rare diseases and for better wages for workers with disabilities. And he listened.
You will find Mr Shorten’s plans for the NDIS HERE.
We are hopeful that the change he spoke of can be implemented.
Because right now, the NDIS is broken. This world-leading scheme that has brought so much to our community, is not working.
We believe support workers are the answer to unlocking carer wellbeing, not just helping with our day-to-day stress, but alleviating financial burden by giving us the option to be employed, or work more hours – 50 per cent of you said that having a support worker would allow you to work or work more hours.
Support workers improve mental health, by giving us time.
And heck, we might just even be able to get those nails done once in a while.
