By Libby Doherty
While I’m grateful for the NDIS and the supports we have been able to access for my daughter, there is a part of me that is absolutely worn out.
The fight that is involved to access these supports for my child has placed additional demands and stress, when I could have been doing other things, like lobbying for an accessible (beach) mat at my local beach. However, that’s another story!
But a series of events which took place, and the paperwork trail that was set into motion from this one very reasonable request, has had my head spinning!
Earlier this year, having already been on the NDIS for my daughter, I attempted to change her diagnosis from cerebral palsy to her actual diagnosis, a rare genetic disorder CDG – PIGN (only three known cases in Australia).
I loaded myself up with the evidence required by the NDIS, including documentation from her geneticist, as well as reports from her neurologist regarding her epilepsy, her secondary condition. This was added to all the usual reports of OT, speech, physio and a carer impact statement that we are generally required to provide if we are accessing those services also.
The NDIS replied within 24 hours (shock!) that not only were they not accepting her diagnosis, they were also now not accepting her disability as I hadn’t sought treatment. First of all, there is no treatment! Along with being told that epilepsy is apparently curable, my non-verbal, non-ambulant, incontinent, verified intellectually disabled daughter was not, in fact, disabled in their eyes!
I found myself each and every day for the duration of one month, phoning the office as well as filing a complaint every 48 hours.
Carers QLD advised I would have to attend a “review of a reviewable decision” but first I would have to obtain the decision through Freedom of Information. I was staring down potentially a 12-month fight.
Around the end of May, I was informed the plan review would go ahead but with no diagnosis stated.
A very short time after the plan review, (on June 6) I received a new plan with everything we asked for and more!
Daisy’s diagnosis was updated to “other congenital brain disorder”.
I have no idea how this happened – there was no communication as to how the result was turned around.
Of course, I’m grateful we have finally received a great plan and one that will properly support Daisy, but I am still so angry about the process.
I’m a strong advocate and a good communicator. I often fight battles purely so those that come after us don’t have to. This one however, really wore me down. It triggered nocturnal panic attacks that left me unable to sleep for weeks, making everything that bit harder.
I tuned in to the Source Kids discussion with Bill Shorten prior to the election. I felt hopeful about the NDIS for the first time. He showed an empathy we haven’t seen previously.
As we near the end of the year, I reflect on the process that I have had to endure to get my daughter the right supports that she needs in this time of her life. Unfortunately, I can’t guarantee that the next family won’t endure the same battle, but by sharing my story, I hope to give hope to never give up.
We are not only fighting for our children’s right to an equitable life to those of their non-disabled peers, but for us as their parents too.
