Monday 4 December 2023

The NDIS is not working

as it should be working. The availability of money has seen an increase in children being diagnosed as "autistic". It has meant money for sometimes minor issues which could be corrected with changes to the way in which a child is handled, some parenting advice, time given to discipline and other behavioural issues and more.

Not so long ago I had someone proudly tell me her husband was "on the autism spectrum". Really? He is a fully functioning adult who has a doctorate in a science who can and does socialise, has pursued a career, provided for his family and much more.  He is also still working although he is over seventy. He is working because he enjoys his work but it also means that, when he is working on a problem, he tends to be "a bit vague and professor like" - his words, not mine. We talked about the "diagnosis" and agreed it was something which was ridiculous. His partner likes it though. It excuses his slightly eccentric behaviour and makes him seem special. 

Last year I talked to a family about their young daughter. She had been diagnosed as "autistic" by a psychologist and they had been advised to apply for funding from the NDIS. They were told they could use such funding for a range of services this child was said to "need". Neither parent was happy about this. It was not because they wanted to deny their child had problems but because they felt the "diagnosis" was not correct. 

The father explained how the child had been isolated during the lock down. Her older brother had needed attention because he was trying to do schoolwork at home and, being too young to work independently, he had needed help from his mother. The children were not socialising in the normal way. "We would have had her at day care so she could mix with other children," her father told me, "But that didn't happen."

There were other things both parents told me. Her grandmother, who had asked me to talk to them, agreed that there were some problems but also told me a couple of things which suggested that being the younger child was also an issue. 

As they had recently returned to this state the child was on a waiting list for day care.  I suggested they get some help to get her into a situation where she could socialise with other children as soon as possible. I also told them who to contact with respect to a couple of other issues and what to ask when they made contact. As I expected they did what I suggested. A place was found for her to mix with other children and that was a start. There were some delays but a visit to a psychologist showed her intelligence rating to be a little above average, a visit to a speech pathologist produced some positive suggestions and joining a "Little Athletics" group with her brother has proved very helpful too. 

It has been a lot of work for those involved but they are not getting NDIS funding. They don't need it. Their child is not "autistic" but she might easily have been labelled that. Yes, she sometimes doesn't appear to hear you but she isn't autistic - or deaf.  It is much more likely she will now tell her mother, "I didn't hear. I was thinking."

I am wondering how many other children there are who simply function in ways which are "a little different", who might once have been considered "a little eccentric". Do they need money or do they need changes to their environment and the way they are handled? Do they need a "label" in order to have those changes made? Would it leave more money for those who really need it, for the boy who uses the i-pad in order to communicate perhaps?  

4 comments:

Anonymous said...

Surely we are all “on the spectrum” somewhere?

But I agree with you. Other, possibly less “invasive”, strategies may be the better choices. Let’s not medicalize things that don’t need it.

LMcC

Anonymous said...

That makes a sort of sense. We are all different - thankfully!
I don't think saying "autistic" about someone who has a character quirk which makes them interesting and different is helpful.
Bob C-S

catdownunder said...

I like the idea that we are all on it somewhere!
I love the idea that, as human beings, we are all unique and different and I firmly believe that everyone has something to contribute - even those who, at first sight, appear to have nothing.

Zab said...

I resonate with the struggle mentioned in the blog about NDIS not working as expected. It's disheartening to hear about families not receiving the support they genuinely need. If anyone has insights on how to navigate the NDIS application process or any resources that offer help with NDIS applications, please share.