“The families with the greatest needs are the ones without the help.”
The above is a quote from a Principal of a Special Needs School in New Zealand, in a recent news story on the death of yet another autistic individual who was meant to be under the watchful eye of a caregiver. You may remember my earlier post, mourning the preventable loss of an autistic child who drowned whilst also in care.
On the books, I’m sure New Zealand looks highly supportive of those with special needs: There is funding, there are support and service organisations, there are schools and advocacy services. Much of it is provided for free through government funding. But the lived reality, of what is required to access funding and support, and what you actually receive once you qualify, should make New Zealanders – and more specifically, the New Zealand government – embarrassed.
Once your child receives a diagnosis, it’s time to put your boxing gloves on, because you’re in for a fight to get them what they need and what they are supposedly entitled to. My own child was severely autistic, and a physical danger to himself and others at the time of diagnosis. Our situation was dire, but even then we were placed on waiting lists that dragged on for months. Once the services did start up – the speech therapy, occupational therapy, physiotherapy, educational psychologist, and early intervention teacher, ultimately requiring the (frequently unsuccessful) coordination of no less than three different government departments – we received about one hour of help from each therapist a week, if that.
Interaction with a therapist was not ongoing either; every six weeks or so they would take a few weeks off. We were also often reviewed to see if the service was still needed, and even when I’d plead that it was, they’d decide to give us months off and only reappear when I emailed desperate for their help. Summary notes on my son’s progress that were filed with the relevant government agencies and overseers, almost always contained false information, often glowing reports about progress that simply and unambiguously had not occurred. At times I was left wondering if they were even talking about the right child. But I didn’t have the time to complain about the erroneous reports that were filed; I had an extremely dependent and high needs child on my hands; fussing over report details was not on my list of priorities at the time.
Every parent of a child with special needs in New Zealand, knows about “ORS,” the acronym for the high level of funding that entitles a child to extra help at school, and to access special schools. But we all know too that it is notoriously difficult to access, and that who qualifies and who doesn’t is viewed as a cruel lottery linked more to the quality of your application than the reality of your child’s needs. A “quality application” is one that says the right things, in the right way; certain professionals in the field pride themselves on having high success rates because of the way they word their applications.
Even once you have ORS though, if you should choose mainstreaming instead of special needs schooling, it is likely to be inadequate for the child’s classroom support. It is very common for mothers of high needs students in a mainstream class, to have to be on beck and call throughout the school day, because the mainstream teachers can’t cope. Some joke about living in the closet at the school because they have to be there so often. This of course signficantly impacts on their own ability to hold down a job and care for their other children. A fair few realise there is inadequate support and completely remove their child from the school system, choosing homeschooling as their only alternative.
For those who tough it out, they have to put up with the public and the other parents complaining about their children being too much of a distraction for the other kids, and that their high needs child shouldn’t be in the school at all. You don’t see the other parents arguing for more support and training to allow these children to stay; it’s easier to say “go away” than “stay and we’ll make it work.” Easier for them anyway, so they can get back to their tidy lives where “disability” is something reserved for uplifting fluff-pieces at the end of a news bulletin.
Respite services – providing a break and support for these exhausted families – have even worse waiting lists than for the basic services. You could wait for half a year, or more, and once you do receive these services, the actual provision of the service is never enough and the carers are frequently under-qualified and under-experienced (sometimes with deadly outcomes).
Residential schools which cater to children with high and complex needs, get shut down with the promise of community based supports to take over the relevant families’ needs. It sounds nice, but interviews with family members have revealed the same trends as what I’ve talked about above: There are a lot of comforting words about how the services are there, but accessing services is a battle, and the quality of the services once accessed is inadequate to meet needs, especially complex needs like those associated with severe autism.
As if all that wasn’t bad enough, there are organisations which appear to exist just to stand in your way (ones that “allocate” the funding), and which powerfully lobby for their own continued existence while the special needs community shouts for them to be overhauled or completely removed. We whisper the names of these “Trusts” like they’re a dirty word, because we need their approval to be able to access funding, but they have immense and at times seemingly arbitrary power to stand in our way. I had a taste of this reality when I pleaded with such an organisation to release more of my son’s allocated funding to our family, because we were in such high need. What I got instead was a lecture about how I wouldn’t be in such high need if I hadn’t gone and had a second child. I can’t even write that sentence without getting upset all over again. Yet I still find myself afraid to say the Trust’s name out loud because I fear them taking away what little funding we get through them as is.
And that is just a taste of what I’m familiar with. My son is only seven, and from what I understand, the services and support only get worse once a child leaves school.
So this is our reality, as families with special needs children. We’re placed in front of a brick wall built out of red-tape and powerful organisations who lobby for their own existence, and waiting lists; while the public is told about all these lovely services and funding available to us. Services that are too few, and often of insufficient quality to actually meet the needs of those who need it most. So once we scale that immense wall, if we can – if we have the time, and energy and support to even attempt it – we realise that what we’re looking at is more a mirage than an oasis.
I must say that there are some amazing people and services that are available, if you can find them. Our son’s first Occupational Therapist, and our son’s current Head Teacher and Principal, stand out for me as astoundingly dedicated individuals, that are genuinely dedicated to my son’s well-being. In fact, I’ve clung to them like a life-raft, because I think I’d be lost without them. To extend the analogy, I try not to rock the boat, because I am just so immensely grateful for what my son has. But for all the wonderful people and services we have been able to access for my son, it’s important to know that we had to fight to get them in the first place. As my son now faces the prospect of mainstreaming, I find myself embroiled in whole new extensive fights that I feel I cannot win, but because I have amazing people on my side, I at least have the strength and courage to take on that fight.
If New Zealand wants to hold its head high, and say with honesty and pride that it looks after its most needy, most innocent, most vulnerable individuals, then it needs to turn that mirage into the promised oasis, and knock down that brick wall. The government needs to listen to the families and disabled individuals (before it hears the lobbying of fat organisations that want their piece of the funding pie). Hear our fear, and our exhaustion, and our need. Hear the words of someone who sees the reality everyday:
“The families with the greatest needs are the ones without the help.”