Saturday, April 24, 2010

And Another Opportunity to Keep it Real

And another stunning opportunity to keep it real and something we all experience....

Andrew Bolt is a blogger who also writes columns Melbourne's Herald Sun, Sydney's Daily Telegraph and Adelaide's Advertiser.
A mother writes of waste and filling forms

Saturday, April 24, 2010 at 12:04am

Kevin Rudd is spending up to $1 billion to fix the disaster he caused by spending $1.5 billion on often useless, unnecessary or dangerous insulation.

Meanwhile reader Elizabeth wonders how many more forms she must fill in for the Rudd Government - and how very often - to keep getting a carer’s pension of just over $100 a fortnight for looking after her autistic son:

Dear Andrew,

My name is Elizabeth and I am a 39yo married mother of three boys aged 17, 13 & 7. My husband is an accountant who works full time for and although I am a university qualified accountant, I work as a Family Day Carer, currently working a 36 hour week. I enjoy working with and caring for the children that I have and get great support from my Family Day Care scheme, however the primary reason that I began working as a Family Day Carer was so that I was able to work and at the same time care, for our youngest son Nicholas, who has autism, an intellectual disability and epilepsy. We are very lucky in that his developmental issues were picked up early and although his autism was not officially diagnosed until last year (meaning that we missed out on the Federal Government’s Autism package for those under 7), we received early intervention services for him since he was three years old.

He is a delightful child in his own way – he enjoys playing sport more than anything else in the world. He is not yet able to join in teams as he cannot understand the rules, the need to do follow the rules or even why he has to share the ball around. However we do the best that we can to expose him to as much of it as possible. As much as Nicholas is delightful, he is also not easy to care for. As with most children with autism, he has little concern or understanding of the feelings of others. He repeatedly tells us that he hates us, or doesn’t love us, or will tell either my husband or myself to find a new place to live. He told me that God shouldn’t have made me his mum, because he didn’t want me, and that when he wakes up in the morning I should be gone. I know that he doesn’t really understand, but is still heartbreaking. He finds reading particularly difficult and is in the reading recovery program at school, but each night he ‘melts down’ when it is time to read the reader and get some homework done. Most days are one big argument with him refusing to get out of bed, eat breakfast, get dressed or showered, put shoes on, clean his teeth, eat his lunch, drink his drink, hold hands while crossing roads, do homework, eat dinner, put a jumper on, take a jumper off, listen to a story, go to bed, go out, get in the car, get out of the car, say hello to people who say hello to him or give his parents a hug (let alone a kiss). And this is tiring. Very, very tiring.

We have the help of a psychologist (who is amazing) but at $150 per hour we can only afford so many visits to her each year (only half is rebateable by Medicare). The medication (melatonin capsules) that we give him to get him to sleep (otherwise he will still be up at 11.30pm) has just gone from $36 to $43 for 30 capsules. His occupational therapist that we need for various issues such as toileting (he is still not night trained and has a fear of defecating), distal tremors, handwriting and other fine motor skill issues costs us in excess of $100 per hour.

But all of this is okay because each fortnight the government gives us a Carer Allowance of just over $100 per fortnight. I know that you are probably thinking that $100 a fortnight is good money, and it is, and we are grateful for it, but it doesn’t come close to covering the costs that we incur in raising Nicholas. To help him cope at school, both with the routines, expectations, and the social side, we have to write ‘social stories’ for him and if we are lucky he will let us read them to him! We do this in the hope that he will get something out of them that will help him at school and in life. We need books and other resources to help us do all of this. We stay up way after midnight writing these stories and attaching the appropriate visuals, printing them and laminating them so that he can’t rip them during an autistic ‘meltdown’. We need specialists such as the ones mentioned above. We need medication to make him sleep and medication to stop seizures as well as oodles of stickers for sticker charts for desirable behaviour. We need ear plugs for him for the football because although he loves going and watching he cannot cope with the noise due to sensory sensitivity. We have to make sure that we sit in the same place each time so that he knows where we are. He has to eat the same food each time because this is his ‘football food’. We have to go the football using the same route or he becomes anxious about where we are going.

And today in the mail I received yet another letter from Centrelink telling me that I must ring them and inform them that I still care for Nicholas and whether he has spent any nights in respite care or hospital recently, or they would cut our allowance. This is on top of the forms that I have to fill out each year or so regarding all the areas of his development. This form goes for pages and pages and on it I must mark what Nicholas can (and therefore by default, cannot) do. Then his paediatrician must also fill out a similar form and return it to me. If I do not get these forms back to Centrelink within 3 weeks of receiving them, they will cut our Allowance and he will lose his Health Care Card. Andrew, he is autistic. He is intellectually disabled. He may grow out of his epilepsy, but he will always be intellectually disabled and autistic. He will never live the life that most people do, he will never be able to do what his brothers do. He most likely will need to be cared for to some degree for the rest of his life. And as far as respite goes – what respite? We cannot leave him with anyone, he simply wouldn’t cope. (And it’s not as if the offers are flooding in, either.) I have spent one night away from him since he was born seven and a half years ago and then I was in hospital, after collapsing with exhaustion and falling face first onto the floor smashing my face and breaking my nose, my husband and children finding me unconscious in a pool of blood. I cannot understand why the government insists on me having to continue to fill out these forms and ring them to confirm that I am not ripping off the system. Each time I look at them and see the items that he is capable of doing, and see the huge number of things on the list that he cannot do, it is like my heart is being ripped out. I cry for days, but I keep going because my children need me.

The Government wastes so much money. Money that would pay for the Carer Allowance for a family of a disabled child, money that would pay for some respite care for parents with disabled children (and the siblings) who just never get a break, money that would pay for more services such as speech therapy, psychologists, occupational therapists. And yet, the government is worried about whether I have had respite from my child without letting them know. Do they really think that I have the time and the energy to try to think of ways to rip off the welfare system?

I will continue to fill out forms as I am asked. I will continue to ring when I am told. I will continue to be slapped in the face by my child’s disability and I will no doubt, continue to cry on occasion. And I will do this because it is what is best for my child and my family. But I cannot stay silent any longer. I am telling you this story in the hope that you find it all as unfair and frustrating as I do, and in the hope that should you choose to write or talk about it, people’s eyes will be opened. Not only to the struggles of families like mine, but also to yet another example of wasted resources and an uncaring and insensitive government.

I apologise for the length of this email and know that I have rambled, but thank you sincerely for taking the time to read it.

Yours truly,


Is it just coincidence that this EXACT topic was discussed with Ayla's Speech Therapist and Physio this week? That it has also been a topic of conversation amongst friends 'in the know' this week? Maybe it's just that we all received these pointless reams of paperwork to complete this week.

YES! My daughter still has a disability....something tells me that this isn't going to change in my lifetime.

1 comment:

S said...

Just wanted to say I am listening - it won't change a thing, but I hear you.