Saturday, November 03, 2007

Asperger's and the Mother of all Disincentives to Work, Education and Having a Life

DH strung out trying to survive as parent of young adult with Asperger's

Thanks to the interplay of the irrational policies of Centrelink and DOH, DH is staring down the barrel of unemployment again with maximum nuisance not only to herself but to her employers.

To get a grip on this saga of policy folly, you need to understand that DH is the parent of a young adult with
Asperger Syndrome, aka Autistic Spectrum "Disorder", or AS. AS can be thought of as primarily a disorder of social communication. It is neither a physical or intellectual disability, nor a mental illness, though for people with AS, depression and anxiety go hand in hand with the strains of being "odd people out" in a demanding world that doesn't understand their limitations. Parents of people with AS are carers by virtue of the constant psychological strain of dealing with their demanding, "loner" offspring, of advocating for them, of constantly being on call to troubleshoot from cradle to ... well, the totally inadequate Disability Support Pension. While both Labor and the Libs now recognise AS and are beginning to fund support programs for children, the first wave of AS children (AS was only recognised by the medical profession in the late 80's) are now in their early twenties. They need a lot of specialised support in employment, education and housing, but so far this is barely on governmental radar.

But in the meantime, parents of AS children are having a hard time being recognised as carers for the purposes of Centrelink. AS people do not need constant supervision, they love being alone!, and they don't need personal care, (if you don't mind being totally embarassed in public in the company of a normal, often very good-looking young adult who lacks the co-ordination to brush their teeth or their hair properly). The only trouble is that while they may love being alone, aloneness is detrimental to their wellbeing, they actually need social interaction same as anyone else, and thus their parents are carers by virtue of needing to be their sole friends, by needing to constantly be on hand to fight fires, to explain odd behaviours, to deal with official business, to explain a bewildering world,

Thus it was that DH gave up trying to stay on the Carer's Pension, which prohibited her from working more than 15 hours, (and GET THIS! that 15 hours included travel time), while not giving her enough money to live on. NEvertheless, it was an important safety net for herself and child, allowing her reduced taxation, subsidised medication and transport costs.

However, she was then put on Newstart, and 'assessed' (nice way to talk about a human being BTW. In DH's youth, the only thing that got assessed was an insurance claim). Anyhow, she was assessed as being capable of 30 hours work and forced to find it. How many jobs are there that employ someone for 30 hours??? In short, DH was forced to find fulltime work, despite the extraordinary strains she lives under as an unrecognised carer.

So now we see that with fulltime work,

  • no concessions on medications or transport,
  • DOH throwing her straight into rental stress by dropping her in the deep end at 30% of her gross wages (despite the fact that she never sees 10% of that as it goes to HECS, HELP, SPSS (Educational Supplement)

not only is DH only a few dollars a week better off than on the disgracefully, miserably low Carers Pension, but her employers are suffering as well.

With the constant stress, DH;s immune system is up the creek. She has been coughing her lungs out for several months, and if this blog was an Opera, she'd be singing her final deathbed aria by the end of this post. Not only that, her life is a constant round of visits to psychiatrists, councillors, employment agencies, social workers on behalf of her daughter. She only averages about 3-4 days a week. She is constantly tired, the work is not getting done. Being a responsible worker, she feels constantly guilty, she is stressed out constantly by the decision of whether to take a day off and lose pay (she's on an hourly rate, no holiday pay, sick pay).

DH, like many of her friends who are educated, working sole parents or carers, and live in public housing are finding it almost impossible to make ends meet.

No joke, folks.

Carer's Week is over, and this is still not a life.


Anonymous said...

Just one of your Bloglines readers here, DH.

As an adult with Aspergers I can attest to the fact Centrelink can be very obsidian-hearted about making any allowances for the condition.

Single, (trying-to-be) working mother caring for an AS kid? You have my respect!

Anonymous said...

I'm a single parent mother of a young adult Aspy & I can honestly say it's a daily constant battle having to always put out the fires.The QLD Government housing & Centrelink desperately need to recognise this "issue" and to give people with Aspergers their families and friends the support & financial means to be able to meet the daily needs they require!

DH said...

It's an ongoing problem, though my daughter is 22 now. I don't qualify as a carer, but I have a patchy work record through having been one, and can't get work, so I am struggling on Newstart, and of course, living with carer stress for all this years. We definitely fall between all the chairs