Not long after my son’s autism diagnosis, I found myself attending a meeting in a WINZ office (that’s the benefits arm of the Government, for the non-New Zealanders). I had the paper-work from my son’s Developmental Pediatrician, confirming that I as his parent met the requirements to receive an ongoing disability payment that was meant to help me afford all those extra expenses that come with raising a high needs child. I knew that was about $40 a week, but I was positive there would be other benefits or supplements that would help me care for my son.
I had quit a part-time lecturing position at a local university, to be home full-time with my boy after the diagnosis was confirmed, so I could put all my effort into his therapies and provide him with the intensive and consistent level of care that he required. I’d never left him with a babysitter, I’d always shared the care between my husband and I, as I’d learned early on that my son’s communication and behavioral difficulties meant other people couldn’t understand or cope with him. So I sat at that WINZ meeting knowing there were benefits for the unemployed and benefits for single mums, I had no doubt there would be some sort of benefit or assistance for a mother who couldn’t work because she had charge of her disabled son.
I was wrong. At first I didn’t believe the WINZ worker when she said there would be no more than $40-something a week available to me. I told her to go make sure. But no, I qualified for no other financial supports. I couldn’t qualify for an unemployment benefit because I wasn’t actively looking for work, and I lived with my husband so I wasn’t a single mum. We were reduced to living off my husband’s income, and what little I could bring in from working one evening a week as a tutor. We earned such a little amount between us that we did get a yearly lump-sum payment under the Working For Families scheme, but there were no actual benefits directed at parents who had had to quit their job to become full-time carers for their disabled child. How is it that what I was doing, was worth nothing?
I tried not to get too bitter about it, and we got on with life. We lived in a cold mouldy home for years with our son, unable to afford anything better. My health suffered badly over the years, both physically and mentally. I was isolated, under-supported, and not getting enough money to live well or to do the best by my son, but I did the very best that I could.
But not everyone accepted that this was fair in our society. At the time, I was unaware of the families going to court, fighting to get the Government to pay them for the care of their disabled children: A Government that would pay total strangers to do the work, but refused to pay family members to do the exact same work for the same people, even when the family members were the best or only suitable carer available.
One of those fighters is Margaret Spencer, an elderly woman who is the full-time carer of her 44 year-old son Paul who has Down syndrome. Her case is still going through the courts, but the possible outcome for her seeking financial recognition or her work and those in similar positions, has been hampered by the current Government with their recent legislation (I won’t recap all the details of that legislation, you can learn more about it from my previous post). The reason I find myself writing about this topic again, and felt I had to share my own story above, was because of this particular quote from someone who works for the Ministry of Health, in relation to Margaret’s case. The quote was in an internal email, clearly not intended for public eyes, but shared in the court via Margaret’s lawyer:
Here’s the position that us carers are in then: We either quietly work without financial recognition or assistance, or we dare to speak up about it and share our stories whereby we are labelled “martyrs” in a derogatory and condescending manner. The very people who are meant to be helping us to help our children, apparently think that we should shut up and sit down and not fight for our rights (and this is a matter of legal rights – not a matter of simply asking for a hand-out – as made clear in the earlier court cases in regards to discrimination).
This is to say nothing of the reference to Paul as a “tatty teddy bear.” Would we be OK with other adults being referred to as inanimate, worn-out property of another human being? Why was it considered OK to do this to a disabled adult?
Whatever you may think of the case and the money at issue, be very clear on this: What parents of disabled children do, is more valuable to this society and to their children, than the huge number of other situations our government thinks worthy of regular sizable allowances. If you don’t think we deserve a living wage, then be very clear about the consequences for these families; you are only shifting the financial and health burden further down the line, and making it a lot worse for all involved. Also then have enough integrity to say that neither should a huge number of other situations (many of which are actually voluntary situations) receive financial support from the Government. The way things currently stand, is indefensible, and the heartless quote from that Ministry of Health worker helps me see that the problem is not just one of money: it is one of attitudes.
We deserve respect. We deserve recognition. Asking for these things does not mean we see ourselves or want others to see us as martyrs, we just want people to understand the huge value and worth of what we do every single day, into our elderly years when everyone else’s children are off starting their own families, and most elderly are cared for by their children instead of still being the primary carer of those children. We shouldn’t have to argue this before courts, it should be obvious.
My own family is becoming less impacted by my son’s autism as the years go by, so years from now I hope to be in a situation that will allow me the time and money to be able to help people like Margaret fight these injustices. For now, all I can offer her and others in her situation, is my understanding and support, which is more than she appears to have received from those best positioned to make her and her son’s life better. So thank you Margaret, you speak for thousands of others, and the country is listening.