[tri-med] PADP

----- Original Message -----
From: "Richard Carlick"
> Matilda has been on the PADP wait list for 12 months - I've given up.  I
> feel they are hopeless - or is it just the Central Coast?

I have been lucky and never had to wait for anything - not even Alex's
$18,000 monitor. I simply put in my order whenever I need anything and it
magically arrives. Usually within a week. Faxed off my order for nappies and
a new pulse ox probe today. Still waiting for the 8 foot extension lead for
the pulse ox - but thats a supply problem.

When I requested Alex's convaid cruiser (special needs stroller - we don't
actually use a wheelchair as yet, and hopefully never) it was here within a
fortnight of them getting the script. Even our first request for the C-PAP
wasn't delayed really. They tried to argue that it was outside guidelines,
the CNC rang them and said that Alex could not leave the hospital until he
had it, that was the Friday and the C-PAP turned up on the Monday...........
Syringes and such I simply go and collect when I need them.

My trick was to send them a thankyou letter after their first supply (the
C-PAP) with a picture of Alex. The co-ordinator phoned me and said WOW - in
20 years that was their first thankyou. They have been on my Christmas list
ever since - with a new pic of Alex of course :-) (nothing better than
giving a human face to those numbers) and I have never had to wait.

Alex gets nappies, all his probes (probably a few thousand dollars worth a
year), all his Bi-PAP needs, gastrostomy needs, alcohol wipes (large and
small), barrier wipes, micropore, syringes etc etc.

But I do admit that it depends on your local hospital, the demand and their
budget. Sutherland Hospital (which is our local PADP) doesn't seem too bad,
though I understand that the new co-ordinator is a little more fussy, plus
their are now extra demands because of the restructuring as of this year.

Some have longer waiting lists unfortunately, how long depends on when in
the budget year you apply. But as an OT I have never seen more than a 12
month wait for a first wheelchair, and four years for subsequent ones for
kids (I think its 6 for adults) Even so they should have given you a wait
time, offered you a compromise (the usual for wheelchairs is that you pay
part) and of course there is always the complaint process.

The complaint process isn't all that intimidating actually - having just
fought them over oxygen (was outside PADP guidelines). Because PADP is
administered via your local hospital the initial complaint is through your
CEO. If that fails there is always the Department of Health who dole out the
budgets. There is also a PADP watchdog group - the bulk of the members are
older quads and paras on disability pensions, but they do do some good work.
They were certainly instrumental in helping to get the means test lifted off
kids equipment.

We have accessed private charities - eg Rotary and Lions. My first requests
usually go to Variety Club. They have never said no to Alex either. But I
only ask them for things we can't get any other way, besides after Rotary
getting Alex to the US I think they and our local community have done a lot
more than their fair share......... and I never know when I may need them
again.

Just as a final thought - if you think the wait on PADP is long - wait till
you meet the technology waiting list at school - arghhhhhhhhh. Again it
depends greatly on how much they love you (or fear you <evil grin>) and how
much of the budget is left when you apply........ I have been told to expect
a 12 month wait for Alex's alphasmart - we shall see..............  Capital
works is usually better - but its still at least 12 months. You apply and it
takes 6 months for approval, then you have to wait on the capital works
contractors to actually do the work. The ramps, clinic (for the tube
feedings) and disabled parking spot at Alex's school took 18 months from
start to finish. Then we had to wait 6 months for the teachers aid to get
into a training program to use the g-tube.... (I could not teach them - they
had to have departmental training) life is such fun :-)))) Start planning
for Matilda to attend school at least 12 months before she starts despite
what they tell you!!!

"We must not allow other people's limited perceptions to define us."
- Virginia Satir -

Keep Looking for Rainbows!!!
   _--_|\
 /Karen\
 \_.--._ /
         v  Mum to Alex (8, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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