Downs With Ups

As promised, here is my third and final rant about the bureaucracy around my daughter’s financial future and the plans my partner and I need to make in order to assure her comfort, health and happiness.  Previously, I’ve outlined the administrative and legal changes that happen when Poppet becomes an adult and how precarious her financial situation will be, without some clever and thoughtful planning.

Thank you for sticking with me, thus far.  I know that a lot of this doesn’t really apply to most people.  This is one of the reasons why I’m grateful you’re reading this.

So, here goes my last rant…

• Like everyone else, my partner and I each need to have a will.  However, there is a significant difference, in that we will need to nominate two people who will take on the role of ensuring Poppet’s security for the future and our wills will need to outline how we see the estate being managed in terms of the four trust options I mentioned in Rant Two, namely:  i) an account-based death benefits pension, ii) an accommodation fund, iii) an all needs protective trust, or iv) a special disability trust.

We need to select two executors, who are open to taking on the complicated responsibility of administering our wills.  I’m hoping like crazy that we have at least two friends or relatives who would be open down the track, to make important decisions on our behalf.  These special people will be required to consider issues such as, who would be the best guardian for Poppet?  Who’d be the best administrator for her estate?  What are Poppet’s circumstances and which trust would be the best for her?  These will be important decisions and I’d hate to think our executors would feel as if they’re being handed a poisoned chalice or that it would be too burdensome, for there really isn’t any other option.

• Obviously, our wills need to cover our deaths, but also Poppet’s, for her wishes will not be legally valid.

This is something I don’t need to worry about yet, but it is something we’ll need to cover, down the track and it will require great sensitivity and patience.  Do I try to include as many of Poppet’s requests as to what she wants to happen after she’s gone, or do I simply make assumptions about what she values?  I wonder at which point I involve her in her own will making, remembering that she may not grasp any of the concepts.

• In order to determine how to best manage Poppet’s entitlements, Centrelink will need to receive a copy of our wills.

How do I feel about this faceless agency having a copy of one of my most personal documents?  Really angry, actually.  I start to question the whole circus.  Why is there such a convoluted and complex process regarding the financial arrangements for people with an intellectual disability?

In 2003, around 3% of the population of Australia had an intellectual disability[1].  What would be the total pool of money managed on behalf of these people and how would it compare to the costs associated with law firms, agencies and governments controlling, policing and managing all the rules around such finances?  Is this a case of overkill?  Absolutely.  Shit.  As if the challenges we face, the emotions and the uncertainty aren’t enough to fill our plates.

I hope I don’t sound as if I’m begrudging Poppet, for this is hardly the case.  I’m simply stating the facts as I see them and what we’ll encounter in the future.  The reason I’m so grumpy about all this is quite simple.  I love Poppet dearly, like any parent loves their child, and only wish for her a future that is free from harm, manipulation and abuse and one that is full of happiness and health.  When I consider the impersonal bureaucracy involved in her care though, after I’m gone, I can’t guarantee these outcomes and I’m certainly not confident leaving the responsibility to the ‘sausage factory’.

When Allan Swan was finishing the session, ‘Wills and Estate Planning and Children with a Disability’, my head was swimming and I felt overwhelmed.  He said something though, that brought a tear to my eye and caused me to pause and reflect.

He said, “Firstly, before you look into any of this, I want you to pat yourself on the back.  You really are the Australians of the Year.”  Thank you Allan for your sensitivity, generosity and wisdom.

My next post will be dedicated to one of my subscribers who has a two-year old son, who just happens to have an extra chromosome, just like Poppet.  I’ll be taking a trip down memory lane and I hope you can join me.

[1] AIHW (Australian Institute of Health and Welfare) 2008. Disability in Australia: intellectual disability.

Bulletin no. 67. Cat. no. AUS 110. Canberra: AIHW.