Downs With Ups

This is the second instalment of my rant, regarding the circus around will and estate planning for adults with an intellectual disability.  In my previous post, I spoke about how I’ll need to apply to become both the guardian and administrator for Poppet, when she turns 18 and that our relationship will become something that’s governed by the Victorian Civil and Administrative Tribunal.

In this post, I’m going to talk about how Poppet’s inheritance will need to be managed carefully, in order for her to remain legally eligible for government support.  Here goes.

• Apart from being assets tested as an adult, Poppet may also be significantly disadvantaged if she were to inherit any assets.  For example, she may miss out on a health care card, a disability pension, the loss of eligibility for accommodation and care programs and the loss of eligibility for supported employment.

The agency that determines all this is Centrelink, which will fundamentally keep tabs on all Poppet’s financial matters.  Interestingly, Poppet doesn’t have the capacity to understand the value of money and it’s unlikely she’ll have the capacity to earn more than a few hundred dollars each month.  Yet the Government’s policies in this area assume she will have the wherewithal to rip off the system and sees the need to apply stringent financial testing such as the assets test.

• At the age of 16, we will need to have Poppet assessed by Centrelink, to determine her ‘classification’.  Sixteen is a good age to do this, as she may be eligible to start receiving a disability pension, (and we still have the energy to fight a decision made by the bureaucrats, if we believe it’s incorrect).

Again Centrelink is involved here, which uses the following classifications to determine ‘disability’: severe, moderate, episodic and unable to work in unsupported employment.  Funnily enough, Down syndrome isn’t automatically assessed as ‘severe’, because it’s believed to be on a spectrum.

In order for Poppet to receive the most support, she needs to be classified as ‘severe’.  This starts the internal tug of war that begins whenever a bureaucracy is involved in my daughter’s welfare.

On the one hand, we hope for her to have as many resources as she needs, so, in this case we would want her to be labelled ‘severely’ disabled.  On the other hand, we’ll be hoping like crazy that she’s not labelled thus, because we’ve committed time and money and effort helping her over the years, to get to where she is today.  Not to mention all the effort she has put into her life to learn and become skilled.

And don’t you just love the language of the labels?  In fact, don’t you just love the language of this aspect of parenting a child with an intellectual disability?  I find it insulting, confusing and demeaning.

• There are four ways Poppet can legally access our estate so that she can also remain eligible for those benefits I mentioned earlier.  These are: i) an account-based death benefits pension, ii) an accommodation fund, iii) an all needs protective trust, or iv) a special disability trust. 

Each one of these would need to be set up on behalf of Poppet, after we die.  This isn’t the same for average families.  If they set up a trust, it’s to make money for their kids, or hide it from the Australian Taxation Office.  It’s not to ensure that their child has a roof over their heads for the rest of their days, or that they receive the proper medical attention they need.  Why is it so much more difficult for us to look after our child’s future, honestly and within the law?

• Each of those four approaches has its own governing rules, as well as its own disadvantages and benefits.  I won’t go into these right now, but I think the titles give you an idea as to what they’re largely about. 

How much will it cost to set up the best will, do you think?  Before Poppet was born, it cost me around $300 for a vanilla-flavoured will.  Add to this a whole lot of complexity with trusts and the like, and I reckon I’m looking at hundreds more, and this is just so that I can stay within the law, within the bureaucratic parameters set for me by government departments.  Perhaps I could apply for a grant of some sort, to assist me cover the costs of such an exercise.  Sorry, I’m being sarcastic now.

Well, that’s it for my second rant.  It’s pretty heavy going, I know.  Thank you for staying with me.  If your mind isn’t spinning now, just wait until my next post and we can spin out together.