The securing of Isaac’s first wheelchair,
Besides being loaded with personal conflict,
Was the subject of brutal beaurocratic conflict,
And despite my swag of unidentified emotions,
It will also mark the day where I found my freedom.
During the many months leading up to the purchase of his Ottobock Skippi,
A black and ugly battle unfolded between myself and the cerebral palsy organisation, Who processed our funding application for the power wheelchair,
Along very similar lines to the fight for Bio-flex AFO’s I had and lost,
Some months earlier,
But this time,
With so much more at stake,
From the two and a half year wait time we faced through the process,
To the sheer enormity of the price tag attached.
And so I wouldn’t accept defeat so easily this round.
The situation as it unfolded,
Recognise the inappropriateness of the wheelchair prescribed for Isaac,
Over two years earlier,
From its over prescription of bells and whistles,
Taking away the responsibility he has to himself to control his body,
So expertly learned over the five years of Feldenkrais,
To the sheer lack of age appropriateness,
Being an adult base much too cumbersome for a small boy.
Not to mention my realisation we were never actually shown any other alternative to make an informed and educated decision on Isaac’s behalf.
And so I did what I now do best,
Without missing a beat,
Finding a more suitable option for him,
Trialled on our own time,
At our own cost with our own therapists,
And when satisfied,
Went on to enquire directly to the funding body as to the procedure for changing a model of chair,
Which still meets their criteria,
To remain classified as the same application,
But fundamentally sees the purchase of a wheelchair that actually meets Isaac’s current needs.
I was greeted by them with no hesitation,
Simply the facts of an equipment review required to be submitted,
By the same organisation who lodge the application,
Outlining and justifying the change.
A very common,
Very realistic request,
Based on the wait-time,
And developmental change between the ages of two and five.
I was naturally incredibly relieved.
Until I wasn’t.
Of months of very little,
If any contact with the cerebral palsy organisation,
Responsible for the application,
With no follow ups directly relating to power wheelchair use whatsoever,
I thought they’d be both pleased for Isaac’s clear improvement beyond their prediction,
And for all the ground work I’d already covered in order to make the process as smooth as possible.
What I was faced with instead,
Was something very different,
And one that I can only describe as shocking.
I didn’t feel they were either qualified or in a position to argue against,
What clearly made perfect sense,
Having become less and less familiar with Isaac’s needs,
Was within protocol of the funding body,
And absolutely about meeting Isaac’s needs.
And yet here they were,
On the other end of the phone,
Saying Isaac had to have the previously prescribed chair,
With the undertone of “just coz, so there”,
Left hanging on the receiver.
An array of bad excuses following,
Including being unable to possibly allocate a therapist for an “entire new trial”,
And not having a therapist available to write an whole application review.
Despite my best efforts to express clearly,
That the trial had been done already by us,
That the chair is from a local supplier so therefore on a practical note very easy to arrange trials,
And just to sweeten the deal,
Based on previous experiences (AFO’S sigh),
Told them how much cheaper this new one was compared to the one they prescribed.
Still the iron gatekeeper would not budge.
I was confused,
Becoming very angry,
And yet helplessly at their mercy.
Many phone calls,
Some with me simply sobbing to the undignified point of begging,
That even if it wasn’t personally their usual protocol,
Wouldn’t they still do it,
If for no other reason than to make sure Isaac got what was best for him?
Especially considering I did have permission from the funding body directly.
And as it turned out a review and re-trial is required on any prescription of great value,
And with such extensive wait time from prescription to delivery,
So surely it wasn’t just me who could see the same amount of allocated therapist time would be applied,
Possibly even less based on the organising I’d already done?
Couldn’t they see that?
So I tried to jump through their hoops,
But they kept on moving them too fast for me to keep up,
Changing their excuses from one to another,
Seemingly depending on the time of day I called,
Or the person I spoke with.
Getting absolutely nowhere,
After weeks of back and forth,
I had no choice but to go over the local heads,
To the regional manager,
And eventually to state management directly.
To my utter relief and surprise,
At state level I was greeted with apologies,
With the promise this behaviour thrown at me,
Was both unacceptable,
Was an inappropriate flexing of authority,
For no justifiable reason,
And I had stayed well within my rights,
At the request.
And was left with the reassurance,
That they would personally direct the local group to follow our request,
And a promise the matter would be resolved promptly,
With no more challenges.
At that moment I crumbled with utter relief.
For the build up to that lifeline call,
I had reached the point of personal breakdown,
The turmoil of five years of battling to simply stay afloat,
In the daunting world that is having a child with cerebral palsy,
Had me beat,
And this conflict simply stole my remaining fight,
Took my last ounce of sanity,
And smeared it across the floor with a hateful sneer.
It caused me my darkest hour,
To smash porcelain,
Walk out on my family,
And run away like a coward,
Unable to face one more moment of the life I faced.
I’m forever grateful for the friends arms I was able to run into,
But damage had been done,
And I just didn’t know the way back.
The resolution coming just in time.
To deliver Isaac his power wheelchair,
And to open up the conversation of balance within our own family unit,
To sustain a lifetime of disability.
It took time to heal,
The damage done to me,
The damage caused by me,
But I could hold my head high in knowing I never gave up on what I knew was right.
For what was not only right,
But always had Isaac’s best interest at its core.
The freedom that followed was a gift,
As I completely severed ties with that organisation,
Which for so long I knew wasn’t serving us well,
Yet out of my own fear had me maintain alliances.
(Just in case).
But no more.
I still to this day cannot quite believe what I had to go through,
Am still gobsmacked at the purely unreasonable way they directed themselves,
Only to be so abruptly overturned by their own powers-that-be,
After one phone call.
And once more,
It is a blessing in a black cloud,
For we were unshackled that day we dissembled the wheelchair for the first time,
And stuffed it into the boot of our old Subaru Outback,
Driving away from an organisation who while stood waving shiny flags,
Chanting how helpful, caring and supportive they are,
How qualified and knowledgeable they are,
With a chorus of being there for the individual families,
Quite blatantly proved to us exactly the contrary.
So good riddance.
And we would never look back.
Because after all,
This is the face that it must always be about.
And from here on out,
I’ll advocate stronger,
And with more attention paid to who around him,
Is or isn’t living up to what’s in his best interest.