Getting a diagnosis of a serious disability from a specialist, is never the end of the story. It is not the final step to proving your child’s disability to the public and the Government, even though the diagnosis is the end point of numerous investigations, observations and medical tests that often take months to complete. Rather, it just leads up to the first time you will be forced to prove that your child has a disability, to people and organisations that seem to think their own non-medical, non-expert view holds more importance and weight than medical experts who have specialized in the field. Not only is this state of affairs upsetting, time-consuming, and expensive, it shows a remarkable level of suspicion and disrespect towards both medical experts and the parents.
First, two local utterly ridiculous and yet not-isolated examples:
The example of families who have been forced to prove yet again that their children have life-long debilitating conditions so they can continue to receive Government financial support. This particular story is of a family in Hamilton: “Hamish Taylor, 17, and his 15-year-old brother Austin have duchenne muscular dystrophy. Its symptoms including muscle weakness and wasting.They will have to live with it for the rest of their lives.” You can read the rest of their story here.
Then there is the story out today of a mother who has had to put up with threats and abuse because members of the public time and again think her brain-damaged son doesn’t look disabled enough to justify using a disability parking space: “The North Shore woman has a permit to use the parks due to the needs of her 3-year-old son who cannot walk or control his upper body following the removal of a brain tumour when he was 3 months old.” Again, this story is not an isolated one, it happens far too often to the disabled in society, where proving they had a disability that allowed them to use these special parks is seen as “inadequate” in others eyes who have no medical or professional training.
Finally, I want to share my own recent frustration at being treated like someone who is trying to cheat the system, despite having evidence from multiple sources that my son has high needs.
I had to reapply for the Child Disability Allowance, which gives me the shockingly small amount of about $45 a week in recognition of the extra time and care my son requires because of his disability. Considering I gave up a lecturing and then tutoring job to be a full-time carer to my son, we’re talking a serious income-reduction with a corresponding huge increase in family costs. Put aside my annoyance at being so under-valued though – and that someone who chooses not to work and with no dependents gets at least a hundred more than I do – and we’re still left with the situation where I had to recently re-prove that my son’s care still means I should get a single penny.
I had his confirmed diagnosis, I had a letter from his specialist saying she still believed he qualified for the Allowance in question, I had the recent agreement of the local family doctor to that effect, and the evidence of other Government organisations like the Ministry of Education and the local NASC who believe my son is high enough needs to require extra daily assistance. But when I submitted the form the doctor had signed off after she’d cited and talked through all of these details with me, saying she believed we qualified for 5 more years support, I received a phone call saying we hadn’t provided any proof and had to do so. Stupid me for thinking the doctor’s opinion mattered. Stupid doctor for thinking their opinion mattered too. Stupid person at the specialist’s office who said getting the renewal would be straight-forwardly signed off by our doctor. Stupid specialist for thinking her opinion that my son still had high needs would be taken seriously. All of us apparently fools, because some non-medical non-expert at a Government office knows better.
So I provided all the evidence again, this time directly to the lady who frankly had been very rude and dismissive of me on the phone. She even gave me the wrong email to send the documents to, and no other contact method, so I had to sit on hold for 20 minutes with the generic Government call centre to figure out how to contact her. After all that hoop-jumping, I have been given a single year extension to getting $45 a week, with the express instruction that I must see the specialist again within that time frame to prove again how high needs my son is if I want another extension. Getting an appointment with his specialist takes months because she’s in such high demand, and when we do get one it will be an utter waste of her time and ours because it’s to do nothing other than say “see, he’s still autistic and still has needs.” Even getting into the medical centre where we go for the appointments is going to be hell, parking in the inner city is a nightmare and expensive, we’d have to take time off school, and in all likelihood I’ll have my very-fussy 4 year old in tow while I try to negotiate the huge medical complex. None of this I am looking forward to.
Pointless. Expensive. Time-consuming. Stressful, Disrespectful, to me and to my son’s doctor and specialist. I hate how they make me and others feel like we’re trying to get away with something, like we’re immoral, we’re liars, we’re cheaters. Apparently we go around inventing conditions, then finding a doctor corrupt enough to diagnose this false condition, then make up stories about the daily challenges this false condition creates, just to get $45 a week.
Or just to get a disabled car-park.
Or whatever other tiny accommodations are made for us in society.
We are forever having to prove how hard our lives are, forever been told to retell our hardships, and then not being believed anyway. It’s a sick system, a sick world that demands this of us and treats us this way, to throw us crumbs and then tells us to just be grateful we even got that. This is not OK, it’s very far from OK. This never-ending story of having to re-prove serious disability, needs to end.
This is an election year, so maybe we can expect to be heard for once. Let’s make them hear us.