Being happy doesnt mean that everything is perfect.

It means that you have decided to look beyond the imperfections...

Friday, January 7, 2011

Life... without work, without wihout 2 incomes & raising a disabled child

When I fell pregnant, I dont think we ever planned for me to go back to full time work, unless it was absolutely necessary. However we did plan that at some stage, possibly after 1 years maternity leave for me to do part time work, either at my previous employment, or doing hairdressing 3 days a week.

Going from 2 full time wages to 1 is hard, but it can be done, and is done by many around the world eveyr day...

But when you have a child that is born with a disability, that totally changes the scenario. Suddenly your plan for you to go back to work after 1 year is changed to going back in 3 years, 5 years, possibly never depending on how much care is requried for your child.

Most experts agree the welfare system is underfunded and tortuously complex. There are an estimated 165,300 children with severe or profound disabilities in Australia, yet their families typically receive just $105 in benefits a fortnight, plus a lump sum of $1000 a year.

Families with reduced income and the extra expenses of having a disabled child often find it hard to make ends meet.

Im not ungrateful for the $105 a fortnight I receive from the government, but I do feel that it is a bit of a joke that you receive such a small amount considering some of the things that parents of disabled children have to pay for, such as the below and alot of this is done on one wage
  • Modifications to your car or home as the child gets older
  • Medication
  • Therapy equipment
  • Peadiatric or specialist services
  • Aids & Equipment (If the costs are not fully covered by the health care system. Which most times it is not and you are left with a large gap)
  • Private therapy, if you they wait is too long for government funded therapy
I would love to hear others thoughts on this...


  1. I totally agree. While I appreciate the $105 per fortnight the Govt do provide, it's not enough to help cover the ongoing costs of raising a child with special needs.

    We all obviously need alot more help.

    I also never envisaged not returning to work this long after, but also didn't know I was having a child with special needs either...if only they could live a day in the shoes of someone who cares for someone with special needs, they might have an skerrick of an idea and grow a heart?

  2. This is interesting. Norrah gets medical assistance through our govt so - her medical bills are paid for (except for win the doctor does not work with the govts insurance carrier) but other than that we do not get any funds to help with the additional costs.

    $105 every 2 weeks sounds nice if it is in additional to medical expenses but - I can also see that we do use so much more to take care of our little ones.

  3. really hope everything turn out to be good for you guys! happy new year Mel! kisses to beautiful Ellie!

  4. Yeah that money for Carer's allowance doesn't go far.
    I am back at work, and thank goodness I am. Ryley's meds alone cost $200 a month, which is where that Carer's money goes. Not to mention continence products (although you do get $500 a year from the govt help with that).
    Plus we see some of his doctors privately and that costs a fortune too.

    Part of the problem is that everything costs so much, and you are often paying for things for extended amounts of time (ie. nappies). It would be great if, say, I could go to a shop and buy a bigger stroller for Ryley so I could get him around. But I can't! I have to go through a specialised equipment service who then have to ensure all the parts are on the wheelchair, and it ends up costing you thousands of dollars (which of course no one has lying around the place).

    Maybe if the govt put a but more into funding bodies like Aids and Equipment, then that would ease some of the burden. I pay my tax like most people and would prefer to see those dollars going to people that need it (and not some stupid scuplture in the middle of the city).

  5. Oh I am so with you on this one! I cry often because of our financial state! I worked part time but made more than my husband at the time Jasmine was born and planned on returning to work when Jasmine was one! WELL there is just no way I can do that! I have no one that I could leave Jasmine with because of her needs and high behaviors so here we sit on one income! Its VERY hard! We struggle a lot and its not fair!

  6. I don't really know how our money in the states compares to yours, but I'm sure it's equally "not enough". It's so hard ... and it seems like anything that gets labeled "special needs equipment" or "adaptive" means they can charge insane amounts for it. It is hard ... like you, I planned on going back to work after having children. I am thrilled to stay home now, but it would be easier on us financially if I was able to work.