Thursday, 15 June 2017

The National Disability Insurance Scheme

or "NDIS" is supposed to be there to provide essential support for people with disabilities.
It is being rorted. I have known this for a long time. So do many other people. This morning there was a small piece in the paper saying this.
It won't be popular. Some of the people who are currently getting assistance are taking from others who need it the most. Those who don't need assistance but are getting it will not want to give it up. 
The article said, and for once I have to agree with the reporting, that some of the children being provided for are within the "normal" range. I suspect many of them are children who have been conveniently diagnosed as "autistic" or "on the autism spectrum". You don't have a badly behaved or poorly disciplined child now. Instead you have a child who is "autistic".
There was a psychologist here that I knew well. I worked with her for a while and we met quite frequently after that. She spent much of her working life with autistic children. They were children who, without exception, behaved bizarrely. They very definitely had serious problems. Their parents very definitely needed support, sometimes a lot of support.  I taught one of those children. Her house was like Fort Knox, perhaps worse than that. Everything was locked away - and I mean everything. If anything was left lying around this child would put it on the floor. An open drawer? Everything would be removed and lined up on the floor. She was heavily drugged in an effort to stop seizures as well. Nothing much helped. I still have no idea what was going on in her head as she never spoke a word at school or at home. She was not one of my success stories. Her family could have done with more respite. It wasn't available. That though is the sort of family the NDIS was intended to help.
It was not intended to help a local family who have a child who is, if the school and others are to be believed, simply out of control. He's an only child. He is indulged to a frightening degree. If he isn't given his way he will throw things. He has broken more than one window. He is disruptive in the classroom and doesn't finish his work. He's been tested but there is no evidence of a learning disorder and he is a bully rather than being bullied. No, not a nice child but it may have something to do with poor parenting skills. He has been diagnosed as "autistic" and his parents are getting funding from the NDIS - so that someone else can take him to football training. In the same class at school is a child with a progressive medical condition. At the moment he is on his feet - just - but his family was told to buy him a walker to keep on his feet a bit longer. That came out of limited family finances - only the father works so that the mother is available to care for the boy and give some classroom assistance when needed. 
If NDIS money is to be used to support both these families then I would be inclined to say that money should be spent on providing parental skills counselling for the first and, at very least, a walker for the second family. They will need more assistance in the future as the child's condition progresses.
They are not the only examples I know of which concern me. What worries me even more is the potential for the whole scheme to fail simply because it becomes too expensive. There are thousands upon thousands of people who genuinely need a little bit of extra help and thousands who are giving it.  There are people who provide each other with support who could apply for help but haven't even considered it.  Far too many people have been told they are "not eligible" when they desperately need help.
And there are others who have simply boarded the "disability" bandwagon in order to access a little extra money rather than admit their child is poorly disciplined or not quite as bright or willing to make an effort.  I wonder what happened to, "You can do it", "Do it again" and "You can do better than that". What happened to, "I think you can do it if you try it this way" and "Try this instead"?
Aren't those things more help than the "something for nothing" mentality of some who are accessing help they don't really need while far too many others are missing out?


Anonymous said...

It must be extremely difficult to get the correct package for everyone who needs one. It will be brilliant if/when the system works.

I wonder how much good will there is for NDIS, how many skilled people to arrange the packages, how many to carry out the packages, to monitor progress, check on compliance.

I do not want it to be another good idea which is poorly funded and executed, with the supposed beneficiaries falling through cracks. For example, people with psychiatric problems living in the community with little support.


Jodiebodie said...

As a parent of a child on the autism spectrum I have been frequently offended by people passing negative judgment on me, my family and my parenting skills. It is very unhelpful and only makes matters worse. It certainly doesn't solve the behavioural issues.
I am professionsally trained in child development and behaviour management - I know what I am doing - and my children's success is testament to that. However as a patent one can feel the judgment of others being passed on, the doubt, the disdain, the dismissal of the child's issues (as if ignoring them will make them go away) the stigma, the ostracism because of a child who is struggling to cope and that's just from people who should know better like a vice principal! It wasn't until my next (neurotypical) child started school that the VP admitted their negative bias towards me. What a revelation! I'm not a bad parent after all! I never was, thank you very much. I remember a social worker person coming to my house. She walked in thinking she was going to be my savior and fix everything. She spent an hour asking me about each issue and asking me about my responses to each issue. At length the 'expert' (what would I know? I'm 'just the patent' as if that qualifies me for nothing) apologised to me and I remember her words "I was going to give you a list of suggestions of things to do but I can see that you have already been doing them and I have no answers for you. There's nothing I can do for you."
What would be more helpful would be for people to, before they pass judgment on a hapless family doing the best they can under trying circumstances, ask them what kind of help they need, listen to them, believe their truth and support them. They love their children. They are probably exhausted and at their wits end underneath the brave public mask. Just stop judging.

Jodiebodie said...

PS if the NDIS can succeed in bringing the focus onto fixing the child's needs instead of 'fixing the parents" It will be a good thing.

catdownunder said...

Hmmm Jodie I would agree with you on the whole but, in this instance, I would like you to meet the parents. Since writing this I have had an opportunity to observe mother and child and it was, "Don't do that dear. Mummy doesn't like it." He went on doing it - kicking the car door - and she didn't say anything else.

Jodiebodie said...

Cat, you seem to have misread my first comment because you asked me to "meet the parents". I AM ONE OF THOSE PARENTS and I know many others who are living with children with autism and other disabilities. I have 'met the parents'.

'Observing' a parent and child in a public space is not 'understanding' who they are or what they are going through. There are always reasons behind a child's behavioural response and that reason is not always poor parenting.

Can you not see that you have passed a judgment yourself on that parent based on your single observation?

As for the parent's response that you observed, would you rather the parent slap the kid around instead so they can then be negatively judged for that?

Would you rather that child kick the parent or a sibling or a passer-by instead? When children have difficult behaviours, parents need to pick and choose their battles. For all we know, that could be a positive thing that the child is kicking a car door instead of inflicting harm on a living thing.

These parents are in a no-win situation whatever they do while unqualified people jump to conclusions and pass judgment.

I agree that the parent's words seem, to the average person, too passive for the situation but obviously kicking the car door was not the big problem of the moment for that parent. Who knows what fights she had just to get him out of the house to that car door? We will never know unless we live in their shoes and that is why we need to believe their truth.

I do agree that parents and teachers would benefit from support to find parenting and educating techniques that work well for their child but when the experts can't even find the answers, what are we to do?

We need to support parents, educators, health professionals and researchers to help these children and their families. The debate should not be about segregating children with disabilities (and effectively denying their rights to a proper education) but about properly funding schools so they can employ the staff, train the staff and, in turn, help their school communities become the nurturing, inclusive place they should be for all learners.

When you can foster that kind of atmosphere in classrooms, you are helping all children with their individual needs, not just those with autism or other disabilities.

Jodiebodie said...

As for rorts, the focus needs to be on the plethora of organisations that have suddenly appeared purporting to have the answers for everything. Where were they when the parents needed them before? What about the organisations that have been doing good work for families with autistic children? Suddenly, with the advent of the NDIS funding, the prices for the same services are being inflated. The attitude seems to be "the NDIS will pay for it" when it is actually ALL of us who pays unnecessarily inflated prices and the ones it hurts most are the families that need specific services to function effectively.

There needs to be a watchdog to prevent exploitation of people with disabilities and the public purse.

It disturbs me that there have been examples of people with disabilities, who have had successful management strategies in the past to keep them well and actively able to participate in and positively contribute to greater society, who then have their needs reassessed by NDIS only to have the NDIS decide that those strategies are no longer needed. The NDIS will no longer fund them, and then the person with the disability goes backwards again increasing their level of disability. This is such a false economy! Then people are expected to go through a legal process to appeal such decisions by the NDIS.

I fear the NDIS is becoming a government mask to cut back on people's services under the guise of helping them. I bet they count on the fact that many NDIS Registrants don't have the capacity to appeal or jump through legal hoops.

How fair is that?

catdownunder said...

Believe me Jodie, I have worked with autistic children, and this child is simply badly behaved - and that is not just from a single observation but, now, from long discussions with the school about how to prevent him from bullying other children - including one who is most definitely autistic and learning disabled.

Jodiebodie said...

That is such a shame. I hope the school can make some progress with the child who is bullying others because children do have the capacity to learn that there are certain rules at school and certain rules at home.

It's also sad that there are people who use the excuse "autistic kids get bullied in mainstream schools" to segregate children with disabilities as if getting bullied is inevitable. Unfortunately it does happen in many schools but not all and it is not inevitable. When teachers and parents argue that a child WILL get bullied, that says to me that a bullying culture is being tolerated and even accepted as the status quo instead of more effort being put into fostering a better school social culture and supporting all parties - the bullies and the bullied.

Any more thoughts, Cat? There are so many sides to these issues.

Jodiebodie said...
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Jodiebodie said...
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catdownunder said...

The same comment posted itself three times Jodie so I have wiped two for you. I have a lot of thoughts on this subject but here is not the best place to be discussing them. We risk being misunderstood. It is such a complex area.

Jodiebodie said...

I agree with you, Cat, about the complexities.

It is your prerogative too to decide what is discussed on your blog and I respect that.

I am sorry that my replies posted multiple times - I think it was when I was trying to respond using my phone's Blogger app and I still have L plates.

This week I had an interesting conversation with a family who has an autistic child. They received a diagnosis and recommendations about supports but when the family approached the support providers, the providers would not allow the family to use them or register because "the family were not in receipt of NDIS funding". (The child had been confirmed eligible for NDIS funding but the paperwork was still being processed by NDIA.) This attitude came from services which had previously been offered to anyone in the community with the correct assessments and specialist referral (like the referral that this family had).

The interesting point is that *now*, now that the NDIS funding for that child has been approved, *now* those same services are happy to serve the family, happy to take their funding. The family now has a choice of providers who are willing to service them and who are being very forthright in offering those services.

This makes me angry because in the meantime, that child went for 12 months without being able to access the support services he needed which created extra problems for him in the context of his schooling and educational outcomes. Not good enough. This child is highly intelligent and has a lot to offer society - he just needs help right now with his emotional and physical development. Why should he be denied that help and denied the opportunity to reach his potential?