The Green Paper for Vulnerable Children; My Submission via Autism NZ

The New Zealand government is currently asking for submissions from the public, on the topic of vulnerable children. “Vulnerable children” is a very broad grouping, which includes abused, neglected, and disadvantaged children; “disadvantaged” includes children who are living in poverty, and living with disabilities.

The charity Autism NZ is submitting their own response to what they consider to be the most relevant questions for autistic children, posed by this government “Green Paper on Vulnerable Children.” You can find the Green Paper website, and all the questions they are seeking input on, here. Autism NZ’s response, can be found here (pdf). I found their own response was quite good and adequately covered a lot of my autism-relevant concerns, but I specifically wanted to add some thoughts to their answer to one particular question.

Autism NZ has asked people to share their comments about their submission (information about how to do so can be found on Autism NZ’s website, here). I have sent them my comments for their consideration, and thought I might as well share them on my blog too.

If you would like to make a submission too, you have 18 days to make it directly (end of February), or if you want to forward comments to Autism NZ, you have until Wednesday February the 22nd.

My submission, sent to Autism NZ:

I would like to submit further comments for your consideration, under the following Green Paper question:

How much monitoring of vulnerable children should the Government allow? Who should monitor vulnerable children and under what circumstances?

The monitoring of children with disabilities, must be performed by people with relevant knowledge of, and experience with, the child’s disability.

For example, a condition like autism exhibits behaviours that have historically (and are still sometimes) mistaken for a simple lack of discipline on behalf of the parents. The exhaustion and desperation of the parents can also be mistaken as a problem wholly with the parent, rather a problem that has arisen out of lack of information and lack of support for that family.

It is vital that any monitoring of families like those with autistic children, is performed by people who can identify the causes of problematic behaviours with a background knowledge of the condition, so they can identify what can help the child and parents, and not make the situation un-necessarily and avoidably worse for all members of that family.

It is not uncommon for parents of autistic children to fear that the behaviours of their children will be misinterpreted in such a way as to not just leave them victims of unjustified condemnation and social isolation, but also fearful that their child will be removed from their care. In order to encourage parents of vulnerable children to seek support and advice, it is vital that they not fear losing their child. It should be made clear that the priority is to keep the child with their own family, and that difficult behaviours will not be presumed to be the result of abuse and neglect.

The parents of autistic children are well-known for being dedicated parents who will do anything and everything to help their child, financially and emotionally. This desperation can in fact leave the family even more vulnerable; open to abuse by those who offer unproven or false and expensive “cures” for the child’s condition. This extra layer of vulnerability can be addressed by providing information and support as close to the time as diagnosis as possible. Merely monitoring a family – without the accompanying provision of information and support – is arguably unhelpful, and often anxiety-inducing.

It needs to be understood that the very act of monitoring an autistic child can be anxiety-inducing and extraordinarily upsetting for the child. Having someone new in the home, who perhaps says the wrong words or knocks the wrong item in the house, can set off meltdowns that it may take the parent literally hours to ameliorate after the visitor has left. In order to counter-act this, it would be well advised that anyone intending to visit the family to monitor or assess the situation, be informed beforehand of how best to come into the home, and be very mindful and respectful of the parent’s instructions about how to be around the child.

For the same reasons, frequent visits from a multitude of government departments, is unhelpful and can make the family’s life more difficult than it already is; limiting the number of visitations required to assess needs, may be in a family’s best interests. (This will obviously be relevant to the question of government inter-department co-ordination.) Thereafter, it may make sense for any monitoring or raising of concerns, to be done via the specialists and therapists that become part of the family’s daily / weekly life. Again, this avoids a multitude of visitations and saves time and money for the government.

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11 Responses to The Green Paper for Vulnerable Children; My Submission via Autism NZ

  1. nzpam says:

    Thank you so much for putting this out there. My daughter here in Waiuku has lived with the fear of what neighbours must think, will they call in authorities who won’t understand, etc. This is not an immediate concern now my grandson has a diagnosis and melatonin means he sleeps at night so is not melting down so much. She was exhausted 6 months ago, looking for help through doctor and being judged on her parenting. It has been a huge struggle and we as a family are very aware there are other families living that trauma. The Plunket nurse here was the best help we found – they now have screening tests which do pick up probability of autism and she helped with referral and advice. Govt depts need to be onto this issue, ensuring the people with the knowledge and experience necessary are available to support families.
    We have had to take him out of kindy because of lack of support and are working on getting OT and speech therapy – it should not be such a struggle to get the services for these kids and their families – we know how important early intervention is.
    Anyway, i just want to thank you for your blog, I always read your posts. It’s great to have a local person blogging as most are foreign. Please keep it up, our wee dude is 4and a half now so it would very helpful to see how you’re managing with the education system, we’re finding it very frustrating at the moment.
    Thank you, from Pam.

    • Thanks for those kind words and encouragement Pam, I really appreciate it.

      I was pleasantly surprised to read your comment that Plunket is now helpful and doing screening; I made an official complaint to Plunket about two years ago because of the judgement and errors made by my son’s Plunket nurse who’s interpretation of my son’s severe developmental issues was that I must be a bad parent. She even implied I was lying to her about everything we were doing to advance my son; since it wasn’t working I must be lying or just making excuses! She never mentioned autism or anything similar. She even forced my son to do activities that set off anxiety attacks that we were left to address, after I’d specifically warned her about his fears around those activities. Plunket did apologise to me and assure me they would look into their practices. So it’s great to hear that they’ve introduced screening and better informed their nurses in the time since my son and I went through that avoidable misery with them.

  2. Jim Reeve says:

    Excellent submission. You are obviously a concerned parent who is willing to go the extra mile to help. You ask some good questions too. Like how are the children being monitored? Also, is it appropriate to group all those types of children together? Maybe it’s because NZ is so small. It is nice to see a small country like NZ trying to make a difference though.

    • Thanks Jim.

      I have similar concerns about the grouping together of such a wide range of “disadvantaged” children, considering the significant differences between the causes of those disadvantages (and therefore the appropriate responses to their situations). I’m hoping the Green Paper is a general first approach to the issue of “vulnerable children,” and that they will make more effort to separate out the groups properly in later stages and consultations that flow on from these initial enquiries.

  3. Hilary says:

    Can I encourage you to make a submission in your own right as well as via Autism NZ.? Reasons: the more info they get about autism the better; this is excellent in its own right, Autism NZ may not use your words, particularly in the way you have.

    We all need to respond to the Green Paper so the official record contains lots of information about autism and officials realise that our autistic children are vulnerable because so many people and agencies do not understand them or the issues involved in supporting and advocating for them and us (parents). Otherwise we could come to the sad situation I have just read about this morning of police in Illinois shooting dead a 15 year old boy having a melt down in his own home after his parents called in the police. http://chicago.cbslocal.com/2012/02/01/boy-15-shot-dead-by-police-in-calumet-city/

    • Hi Hilary,

      I did wonder whether I should put in an independent submission aswell, but I hadn’t thought of your very good reasons for doing so. I had decided to just throw my lot in with Autism NZ because I thought it would be more likely to be considered seriously and taken into account coming via such an established organisation. You’re quite right though, and I will consider a separate submission too, perhaps something more lengthy to cover some of their other questions aswell.

      Thanks for the encouragement.

  4. Matty Angel says:

    I hope whatever they put in place, will include a transition period for when the children’s no longer get support. Instead of a cut off age.

    Like now, for people with some disability, when reach certain age you loose most the support you have and get more limited support, just for getting older. Then the older you get the more isolated you become. Till eventually… you get lumped into the age care and get no special needs support… if you live that long.

    That is how I understand it works anyway. I am probably wrong :) but I do know when I reached a certain age I lost most support I had.

    • I’m so sad to hear that Matty, and yes it matches what I’ve been hearing about support services (or rather, their lack) both here and frequently overseas too. I strongly agree that there needs to be significantly more focus and resources put into transitioning, and supporting the adult lives of autistic people. I know Autism NZ is pushing for this, but I doubt the Green Paper itself will lead towards these much-needed changes, since its focus is on the category of children, and less-so on what happens when that vulnerability remains into adulthood. I’ll be keeping an eye on their findings and recommendations anyway; maybe we’ll be pleasantly surprised. One can hope.

      • Matty Angel says:

        But if the childs support is there one day and gone the next day, they by giving more support to children, they could be increasing the risk of mental health and other problems later in their life. So by giving more support, without a transitioning period. you could be hurting the child life.

        Abandonment is the worst feeling in the world. And for children suffering neglect already that is going to hurt even more.

        I know that abandonment feeling.

        Sorry for writing such sad words.

      • No need to say sorry Matty; when the reality is a sad one, it still needs to be heard.

  5. Matty Angel says:

    OK, I thought when you said something sad you were suppose to say sorry. Cause when someone tells me sad things I was told I should say sorry to them :)!

    I will try to write a short story based on this tomorrow. Maybe if I can put my feelings on paper correctly for others, then they can understand better.

    That reminds me, did you ever see the poem I had published in CCS News Letter :) or my recent request poem :)

    http://mattyangel.com/2012/02/05/did-i-tell-you-i-had-a-poem-published-in-december-2011/

    http://mattyangel.com/2012/02/03/please-a-request/

    Writing is the best way to talk for me. Maybe if I write a short story… it will make people notice this a bit more. I will try :)

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