Reach Out, April 2016, isue 103

Personal Stories
Know your child’s funding package. It’s easy to file paperwork
away once you’re done with your yearly planning meeting and
think, well that’s that done for another year. Needs change,
priorities differ, children develop. Remember you can ask for a
plan review at any time. Liam had $3000 worth of funding a year
for continence aids at one stage, $1100 of which was for adult
diapers. He didn’t even use adult diapers, so we diverted these
funds elsewhere. On the other hand, don’t be in too much of a
hurry to let go of funding if there’s a chance your child will need
it in the future, it’s always worth keeping the worst-case scenario
in mind. In our plan reviews, we’ve mostly been successful in accessing
the services Liam needs, although we have had one plan
revision declined.
So you think you’re already good at filling out forms? Service
providers and planning coordinators can only see the bare
minimum of information you provide about your child to the
NDIS. They will want to get exactly as clear an idea about him or
her as the NDIS did at your planning meetings, so be prepared
to repeat yourself a lot. The time spent writing or talking about
your child will be enormously helpful in getting their supports
just right. Even once supports are in place, keep the information
coming. I never stop talking about Liam to all of his providers.
I’m always chatting or emailing, I send photos of the things
we’ve been doing, and assemble little photo albums that travel
around with him. In return, I often receive texts or emails from
his carers with photos or videos of what he’s been up to that day.
He has round the clock care in his brand new unit
from a wonderful team of carers, who value him as a
unique person and celebrate his achievements
Check online regularly to keep track of what has been spent.
NDIS can provide you with an activation code. Be aware that
service providers can see the funding details around the portfolio.
Potentially there is a risk they will ‘up the ante’ if they can
see extra funding hasn’t been used, especially if they want the
business for themselves. Liam’s Coordinator of Supports is careful
to check what has been billed is correct. Note that you don’t
necessarily have to use all the funding in a particular line. You
won’t lose funding the following year – although if you haven’t
used it all you may wish to review it.
Ask questions. Ask a lot of questions.
And take someone with you to meetings.
I can’t tell you how many times
I was in meetings with planners and
coordinators and didn’t understand
half of what they were saying. Now,
I’m not the world’s most thick-headed
person, but I’m sure I’m not the only
parent who has sat there thinking “what on earth have they
just said?” instead of stopping and saying, “No, I’m afraid I
don’t understand. Please explain what you mean in layman’s
terms.” I spent a lot of time feeling ashamed of myself, and that
I should know the answer if only I’d read the paperwork properly,
and what would they think if I asked such a silly question?
There are no silly questions, only silly people. Like me. Luckily,
my husband isn’t, and wasn’t too shy to ask for clarification
when it was needed.
Talk to providers about your vision for your child. Tell
them all about him or her, send pictures, relate anecdotes,
swap favourite recipes. Take them along to doctor’s or
dentist’s appointments with your child if you can (it’s
good preparation if they have to do this themselves in the
future). Give them the opportunity to participate in the
journey of a real person, a person with foibles, with likes
and dislikes, with pets and family photos whose favourite
colour is blue and who likes to sniff people to work out
if they’re OK to hang out with. Everyone seeks meaning
in the work they do, and carers do one of the world’s
most challenging jobs in my opinion. So involve them,
let them know how they’re valued and how meaningful
their work is to you and your child.
“So many of our dreams at first seem impossible, then
they seem improbable, and then, when we summon the
will, they soon become inevitable.” Christopher Reeve
Good luck with your adventure!
16
Reach
Out
APRIL 2016 ISSUE 103