Proving Disability; The Never-ending Story.

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.

By Kevin Spencer, via Flickr

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.

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9 Responses to Proving Disability; The Never-ending Story.

  1. homepaddock says:

    I’d talk to your MP about this. It looks like a case of an over-officious bureaucrat.

  2. quintorpian says:

    Wow, that sucks. I know they have made the criteria for child disability allowance stricter due perhaps to ‘overspending’ on benefits by granting them too ‘easily’ in the past but that’s just ridiculous. My son’s doctor told me the climate had changed when i took the renewal form into him last year, and that more pressure was put on doctors not to grant them too quickly. Yet he is only a GP and they accepted the form he filled out and renewed the allowance without question. possibly only for a year, I can’t remember. You must have struck a particularly rule-stickling Work and Income person. That’s part of the problem, the different ways that officials interpret this kind of information and of course the terrible toll it takes on parents who have to keep publicly declaring their child’s deficits.

  3. Wife of Jack says:

    We too have jumped through hoops. Denied then Accepted. Another renewal later in the year. I do wonder how they come up with these decisions.

  4. Peter says:

    I think we all have stories about our unsatisfactory dealings with Government Departments. Here is mine:

    I was a working solo dad with one 7 year old son and 5 year old twin sons when the then Department of Social Welfare decided to interfere in our lives. At a DSW court hearing determining custody, one twin was removed from my care and sent to live with his mother in the South Island (I live in the North Island). This did un-repairable psychological damage. Two years later my “remaining twin” was diagnosed as having an intellectual disability and removed from mainstream schooling (probably incorrectly as almost 30 years later his diagnosis was changed to Schitzoaffective disorder – bipolar). When I enquired if I was entitled to any form of support for a “special needs” child I was told no – they would rather take the rest of my kids off me instead. Obviously I then avoided any further contact with the department.

    Six years ago my son became very unwell. As we could not get the appropriate medical care (another long story) I tried to care for him at home during a time when he was extremely manic. My other son came home to help but he also became unwell. For the first time in my life I could not cope, became unwell myself, and was forced to approach WINZ for assistance.

    Initially I received a partial sickness benefit. Later I was told I might be eligible for a Domestic Purposes Benefit – Care of the Sick and Infirm. My case was then referred to a Ministry of Social Development lawyer who would not believe I could possibly be caring for not one but two very unwell adult sons on my own and was determined to find reasons I should not receive a benefit. I was even accused of fraud, although that decision was eventually overturned.

    We went to Benefit Review Committee hearings and eventually the Social Security Appeal Authority but with little success. However a couple of years later an MSD Regional Commissioner stepped in, determined I had been treated most unfairly, and finally a back payment was made. I was promised a letter of apology from the MSD CEO but, of course, that never happened. Unfortunately I could not regain my health and was never able to return to work, although I have now reached retirement age.

    Almost two years go my son was admitted to hospital for treatment. He is due for discharge soon and I guess the battles will begin again – I’ve already been told we wont qualify for Funded Family Care.

    Peter.

    • That’s horrible Peter, I’m so sorry for what you’ve been through. It sounds like you need a community lawyer or relevant Minister fighting on your side, there are a lot of complex issues going on there. I can only give you my best wishes, and my deepest sympathy for what you’ve been put through.

      • Peter says:

        Your reply is appreciated. I have a meeting at the hospital today to discuss arrangements for when my son is discharged. He just wants to come home after spending almost two years in hospital care. However as Funded Family Care has been denied, it probably means he may have to live elsewhere…..at least initially.

        Up until the time I became unwell I ran my own business. I think this was the stumbling block for WINZ as they were convinced I was deliberately re-arranging my financial affairs in order to qualify for a benefit. I did contact a community lawyer, my local MP, Minister Paula Benefit, the Ombudsmen, The Human Rights Commission and eventually wrote to the Prime Minister. WINZ just told everyone it was already being sorted out, although nothing further happened for a very long time.

        The Human Rights Commission determined a sexual discrimination breach in that had I been a woman in the same circumstances I would have been eligible for a DPB benefit even during the period when I was so unwell I had to send my son overseas to live with his twin brother for a while. MSD acknowledged this but said it can only be fixed by changing the Social Security Act of Parliament. Apparently there is a similar problem with widows being eligible for a benefit but not widowers.

        All my problems with WINZ would never have occurred had we received proper medical care when we needed it. The DHB Community Mental Health Service prescribed for my son an Anti-psychotic medication at a dose well above the maximum recommended by the manufacturer and instead of Mania subsiding it became much worse. We reported this to the Health and Disability Commissioner but this is another government organization that has proven to be very difficult to deal with.

        Peter.

  5. Pingback: Proving Disability | lovenlearning

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