If he was seven, he would have received his NDIS package and money would be there, for him to access. Money would be available for therapies and equipment.
But, Dexter is only six.
He has no NDIS package. He's too young.
He will most likely not have access to an NDIS package until his seventh birthday.
If we're really lucky, he might get his package by the start of 2018.
The National Disability Insurance Scheme (NDIS) has been rolled out in many parts of Australia.
Lenice attended several information meetings. She prepared her paperwork and had the requested interviews and meetings. She was reassured Dexter would be given his NDIS package. The money would come in.
But it hasn't. Dexter's too young...
A couple of months ago, we were told that Dexter would not be receiving any financial support.
Because, he's too young.
That made me feel so frustrated!
Spending so much time with Dexter, I feel many different emotions. Some days, despite his disabilities and childhood cancer, life with Dexter has brought incredible happiness. It's also brought absolute fear and heartbreaking sorrow. Sometimes, all of these emotions can be felt within 24 hours.
I'm used to the emotional roller coaster that is Dexter's life.
At the moment, though, I'm feeling angry and frustrated.
I'm angry that organisations sing the benefits of early intervention, but many don't seem to follow through with real action.
I've waited, impatiently, while Dexter was denied equipment or services.
Because of red tape.
Because someone was upset with the family. Because the equipment Dexter needed had arrived, but was stored in a room for a couple of months.
Because Dexter's disabilities are too complex and his cancer got in the way.
Because Dexter is 'too disabled'.
Because the service should have been done by someone else, so the people working with Dexter couldn't get it done.
Often, Dexter's disabilities bring incredible frustrations.
I am angry, too.
For the last five years, we have shared Dexter's stories and always stayed positive. We have only promoted and supported. We've not whinged. (We've tried not to, anyway.) We've never openly complained, even when people have let us down. We have never publicly stood up for ourselves, when we've known people have bad mouthed us. We've walked away, when people talked about us.
We choose to focus on the positives; our lives are just too complex and too exhausting to deal with anything else. We move on.
(There are also some amazing people in Dexter's life, who support us more than anyone realises. They know who they are. xx)
But at the moment, I want to yell and scream and cry and rage.
Dexter will have no financial support for the next six to nine months.
Because, he's too young. Because, he's only six.
Because, the NDIS packages are only going to people aged between 7 and 70.
What about early intervention?!
(Dexter's physiotherapy and vision therapy started when he was 30 days old; when we found out about his brain damage. But, six is too young for funding for therapy.)
How is this fair?!
His family have a ridiculously scary mortgage. His dad recently took a big pay cut, to work closer to home; to spend more time with Dexter and his sisters. They are still finishing up the house. Money is pretty tight.
And yet, because they believe so strongly in early intervention, Dexter still has weekly physiotherapy.
(Zoe is awesome and Dexter's funding is nothing to do with her. She has been incredible and we are so lucky to have her in Dexter's life!)
Financially, about $4,500 will be privately funded, so Dexter can continue to access physiotherapy.
That is enough for a family holiday.
**Whenever there have been fundraisers, the money has been used to help provide Dexter with additional therapies or equipment. Every dollar given to Dexter is spent on him. Always.
Because of his cerebral palsy, Dexter needs regular therapy for sitting, standing, crawling and rolling. If he doesn't do these often enough, his muscles forget what they have to do and he loses the ability and strength he has gained.
If Dexter needs to consult with any other professionals, they will likely charge the NDIS rate, of $175 an hour.
So, an example... With Dexter's standing frame needing to be replaced (he's getting too tall!), two professionals were needed at a meeting, with no therapies provided. The cost was over $300. This is what the NDIS is for - to pay these costs.
That's just one example. There will be other things Dexter needs, similar to this, in the next six to nine months.
But, Dexter has no NDIS package.
Because, he's only six.
And, that makes me angry.
For the moment, Dexter's cerebral palsy has gotten me down.
The system that is supposed to help, has gotten me down.
And, there is nothing I can do about it.
This rant will have no impact on the powers that be.
But, my anger, frustration and disappointment had to come out, so I let my angry fingers race across my keyboard. And now, I will shake it off and look to how I can better help Dexter continue with his progress.
I believe so much in that kid....
Even if he is only six.
(And, the therapy I provide? That's free. Dexter's always worked really well with me.)
We are lucky that Dexter has his swimming lessons paid for through Interchange.
He recently started accessing speech therapy, through KidzWish.
His occupational therapist has just resigned. We liked her. She was Dexter's eighth occupational therapist. We left one OT, after she called Dexter lazy, when he couldn't follow her instructions. The other six went on leave or resigned. One 'pretended' to do therapy without informing the family they were not actually seeing Dexter. Hours of funding, lost. For now, Dexter won't access occupational therapy. We're hoping to get on a wait list and get Dexter some OT services through Mission Australia and KidzWish.
Occasionally, Dexter accesses a vision therapist through Vision Australia.
Dexter still needs nappies, thickener for his drinks, specialised toothbrushes, lots of equipment and some medications. He cant control his body temperature and needs heating and cooling, depending on the weather.
Luckily, Ron (Dexter's swimming teacher) recently raised just over $5,000 with his hair colouring fundraiser. The timing for this was perfect. Ron's fundraising money will help to cover the costs of his weekly physiotherapy and the gap in his weekly hydrotherapy lessons when that funding runs out.
He's as determined as ever. He's still loving school. He's showing an awesome personality and working really well on his vision therapy.
For him, we'll brush off the frustration and disappointment and focus on the silver linings and chase our rainbows.
**EDIT - Dexter's mum was contacted by a representative from the NDIS. (This was six months after we were told we would receive a phone call and one day after we shared this.)
We've been told Dexter qualifies to receive a funding package, but that the wait list is incredibly long and he may not have a meeting for at least six months.
We'll let you know how we go.
Ron’s Rainbow Hair fundraiser
When Your Heart Aches with Sadness
Mum was Crying in the Ball Pit
My Walking Goal
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
Stuck in a Rut
Embrace the Lion
I’m a Kindy Kid!
Dexter's First Month
Dexter's Cerebral Palsy
Who is Dexter?
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