Accessing Services for Special Needs in NZ; The Brick Wall Around A Mirage.

“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.”

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25 Responses to Accessing Services for Special Needs in NZ; The Brick Wall Around A Mirage.

  1. Hilary says:

    “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.”
    Just been helping someone battle one of these which used every tactic from rudeness to misinterpretation of the rules to deny any empathy let alone any help to a mother in crisis.

    And things are much worse if you cannot even get in the door because your child has HFA or Aspergers without ID because of our outdated policies.

  2. SD says:

    “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”

    I was confronted with this unexpectedly at my daughter’s school recently. She is a typical year 5 child and I was talking to a mum whom I know from around the school gate as our older children have often shared a class. The mum was describing how difficult things were in her younger son’s class because there were so many distractions. You guessed it…. she blamed her own son’s inattention to class on an autistic child in the class.

    She didn’t realize my preschooler was autistic until I informed her, at which point she was clearly embarrassed and attempted to soften the blow. I was gutted to hear that comment from a mum whom I’ve always thought of as a kind and fair woman. For me, this conversation will be added to my “autism experience”.

  3. Glen Herud says:

    Your post explains exactly what my wife and I have been going through with our 6 year old son. We have been totally dismayed at the attitudes of the funding agency, tasked with allocating funding. The meetings with them are the most confrontational events we have experienced. We were told we would have to fight for every bit of support, we never thought this is what they meant.
    So much funding is wasted with these bodies tasked to help, but they just add hours of appointments to your week only to provide a token gesture of support or tell you the bleeding obvious.

    Of course we have no time to go through a lengthy complaints process because we are struggling just to make it through the day.

    Thanks for your post.

  4. Mum to a special little guy says:

    Thank you so much for speaking out for people in our situation. I have had nothing but battle after battle with our NASC here in my town,since my son turned 5. He has a lot of challenging behaviours and limited speech.He will be 6 at the end of March next year, yet we are still only allocated 12 days respite per year, just like we did in the preschool years. Apparently only Autistic people with ID are considered serious enough for more days according to our NASC which I won’t name either, in case we lose the very limited support we do get aswell. I find that having to battle for support,and dealing with ignorant and clueless people who have no idea about autism actually stresses me out more than having an autistic child. As for you being told you should not have another child- that is so unprofessional and none of their business. I know lots of families with an Asd child who have 2+ kids. My son is an only child,though not by choice and I quite often have people assuming I don’t want anymore because of my son having autism.

  5. Wife of Jack says:

    We have tried to access some help for our son’s mental health issues associated with his Autism. One of his therapists was happy to write an application straight away. No, we have to go through the local support service coordinators! We cannot access one trust without going though another trust! Seems like double handling to me. Our therapists know our children best, they are the most qualified to compile a list of services our children would qualify for. It’s just a ridiculous system. The waiting list for this mental health help is a year long I’ve been told.

  6. I’m so upset to hear how widespread and ongoing the complaints are, against the service coordinator trusts.

    My own complaints about them are far more than I’ve ever shared on this blog, and just today I have a new complaint against them, for rejecting a form for the second time for a reason that they should have pointed out the first time they rejected it. I have to submit it a third time, and even after that there’s (as usual) no gaurentee of payment. An absolute waste of time and resources. People paid to reject forms that are near-impossible to understand or fill out correctly, by their own ridiculous standards. And that’s coming from someone with a law degree; if I’m struggling with the forms, imagine how others are faring.

    But how do we force change? We complain to the Trusts, which rarely if ever has an outcome, and which is itself time consuming and stressful. There’s got to be more we can do. Do we just write to the Government and hope they listen? So many of us are afraid to even name the organisations because we’re worried we’ll lose what little we get from them.

    This is a totally unacceptable situation. I’ll give it further thought at my end. If you have ideas about how to get heard and force change, do let me know. This is so clearly an area that change is needed, where money is being wasted, where people are being unnecessarily exhausted by the system. Something has to be done.

  7. Wife of Jack says:

    Do we really need service coordinators? Surely it would be better to access the services ourselves with the advice of a professional or two to guide us to the services that best suit our needs. No system is that complicated!! The hospitals or G.P.s could for instance assist in applications for respite care and allowances, the child’s therapists or school could advise us about more specific help for individual needs and the local support groups for different conditions could compile lists of all available services. Why do we need a middle man to complicate things and exhaust our energies. It’s such a patronising system, they don’t think we can be trusted to access and coordinate with the services we think will help us the most. We incompetent parents need someone who has never met our family or child to make such decisions for us. Give me a break! To be honest I would rather just be given a list with notes on eligibility criteria and waiting time for each avenue of help. Then I could pick and choose what I think would be useful. There seems to be an inherent judgement in the current system, you have a disabled child, somehow that makes you incompetent and passive with no ability to self determine or think for yourself. Or the cynic in me thinks it’s all just a gate keeping system to keep costs down. You have used the term gatekeeper before, and perhaps if you make a system hard enough to access then only a certain % of people ever make it through to access the services and therefore the costs are lower. There must be many people out there not getting the services they deserve because it is all just one form too many.

    • Absolutely, I really couldn’t agree with you more. It is a patronising, time-wasting, energy-sucking way to run access to services and funding. “Gatekeepers” does appear to be the correct word, and in this case, incompetent (and often evidently mean-spirited) gatekeepers.

    • Natalie says:

      OMG….every single post I read is my life – why aren’t we being heard?

  8. Nostromoswife says:

    Hell yes, been waiting over a year now for communication assistance for our non-verbal boy.

    Also, we had an ‘urgent’ referral for ‘home support’ respite (God knows what that is exactly) – 7 weeks, still waiting… If we didn’t have a strong marriage and family support, our family could’ve fallen apart by now. What do you have to do to get some action? Slash your wrists? beg?

    • It does seem to take a family to hit crisis point before something happens, I know I had to beg in tears over the phone before I saw any urgency for our initial services to come on board. I also had to get a social worker involved to put pressure on various other services. Of course, you know what happens when you hit crisis and you go into tears and you beg for help? They start treating your family as if it’s falling apart and start trying to force you and your family to go into counselling, and start treating you like a basket case, when all you really needed was the services that were promised in the first place! If they just provided sufficient support and services at the outset, there would have been no need for crisis or all those extra counselling suggestions. It’s a circus that I think few people outside of it, truly appreciate or comprehend.

      • Natalie says:

        Here we go again – crying & begging – then in utter frustration and desperation a swear word my come out..then all of a sudden you’re accused of abusing Govt Health Service providers and your support care contract is cut. It appears very apparent and I know only too well that you will not be heard properly or services be forthcoming until you get a social worker to intervene and act on your behalf – we are a NOTHING…that’s all we are now.

    • Glen Herud says:

      We had an urgent referral for respite care in October 2011, they came 6 months later and we still have not received all the support they allocated to us as they only sent the referral to IHC 5 months after our meeting. We keep saying we will make a complaint, but that just means more meetings and paper work. We’re just struggling to make it through the day.

      • That’s part of the problem that makes us so vulnerable to abuse and neglect by these organisations which are meant to be helping us: engaging in the complaints process is something we have little time or energy for, so these issues continue en mass. There’s also a (quite reasonable) perception that complaining either has no point because it won’t cause the needed systemic change, or that complaining will bring attention that leads to the very organisation treating them worse (they do seem to develop vendettas, I’ve dealt with some nasty people who seem to revel in their power). I’ve filled out feedback forms over the years, I’ve placed complaints, but clearly things are still as bad (and I’d say worse to be honest) as ever. I can imagine that complaining to the relevant government head won’t cause change because the organisations will just complain about a shortage of resources and about how they must prioritise services, the sort of replies that sweep their incompetency and family desperation under the rug.

        I’ve thought about running a petition for them to overhaul or remove the mediating organisations, since a lot of the problems seem to come in there. But there are also wider issues of incorrect or lack of information about services and their availability, and of course a general lack of services and supports too. The whole thing is a mess really.

        • Natalie says:

          Yep….Im act as Head of Complaints – and yep….my support care agency have cancelled my contract…I now have no support care and am working 24/7 caring for my extremely disabled very high & complex medically dependent 12 year old daughter. Exhausted, broken and extremely frustrated as to how we stop the systemic abuse we are being dished out. I feel sorry for the employers who work for (and Im not holding back) Taikura Trust & the likes of Healthcare NZ – they too are used by the Government to do their dirty work and knock us back, scrutinise us etc…then when you make a complaint that staff member is moved on….you’re allocated a new assessor/coordinator and have to go through extremely timely exhausting traumatic assessments over again….Ive demanded through Health & Disability Commission full Independent Investigation into these organisations and the Government and WINZ…for the utter mistreatment of our families. Too many Human Rights, Civil & Political Rights are blatantly being breached causing extreme undue harm and distress – its cruel and criminal. Ive demanded full public disclosure – but I suspect (after 12 years of complaints etc) – true to form, nothing will ever come of my complaints. Keep complaining folks, copy your complaints in to Campbell Live and other media entities….this is huge and a massive situation – DISGHRACEFUL MISCONDUCT, MISMANAGEMENT OF FUNDS & TOO MANY PEOPLE ARE SUFFERING, OFTEN QUIETLY AND INTERNALLY. Love you all who are living our life…you need to know I love you & I care, I hurt not just for my family for all of you. I care for 4 million New Zealanders – I care for all human beings. DONT EVER GIVE UP xx:(

  9. Matty Angel says:

    I know I am adult but my support right now is really good and I am very happy with it all.

    • That’s good to hear, I wish I heard that more often! Do you mind me asking what sorts of supports you receive, and do you have to deal with NASCs or carer support? Do you receive therapist support and services? Most of the issues seem to be in those areas.

  10. Matty Angel says:

    OOPS I was meaning to add

    But I have the worry of it all going away and loosing it. Thats just as scary as when you get it.

  11. Lisa says:

    I can relate to your blog very well. I have a 19yr old daughter with very high needs. She has been neglected and returned home with the evidence of such more then once from a respite service..has nearly hung herself in her own wheelchair….too much to write on here…and we have no other choice as they are the only service that cater for her level of required care….had to stop her going to repsite yet the NASC and Govt depts say, that service is fine and has passed its audits(great when you can choose your audit service, yeah like that keeps it non-bias!! They arent going to ask the same service for audit if they give them a bad report are they??)…..yet many other parents have since disclosed incidents and concerns of care there and have reported these to NASC/MOH, but yet still they say they are not aware of any concerns with the service.I think they forget we are a small community of people that are transperent about what is really happening to our young people.
    Please god let me win the lotto…I know what i’d do with it!!!

  12. Aelinor says:

    I know this all too well my parents have spent half their lives fighting to get the support I need for my Dyspraxia and only recently the Trust that is needed to get support for things such as flatting has apparently decided that my Dyspraxia isn’t enough of a disability to count for needing these services. I wish that were true if it were I would’ve been out of my parents house long ago.

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