#1803 Thursday 3 May

The Australian news has in recent times had many articles about the problems that people experience with the NDIS (National Disability Insurance Scheme).  The most recent spoke of the fact that for 80% of people on the scheme, it has been a positive experience ... but for some people it has not been a good experience.  ......  and of course many of these people have major disabilities and the problems have a much greater impact for them   ..... the problem would perhaps be a much smaller issue if they weren't disabled! 

Fortunately for us we are in the 80% ..... we went from a scenario where Kaylia was not eligible for any assistance at all ..... to a scenario where she is able to purchase weekly therapy as well as a subsidy of her daily care costs.  While we ponder this, we also ponder the long term situation for Kaylia ...... what about 20 years time ..... 30 years time!  Kaylia is very unlikely to ever be able to live independently ..... so we need to plan for her care when we are no longer around.

The image of her being a number in a government facility is a very painful picture.

There isn't anyone in our family who is able or interested in caring for her when she is middle-aged....  we had a faint hope that some-one in our aupair family might share in this role .... but as time goes on, this seems less likely all the time.  So we are left with.....????

#1802 Monday 30 April

One day to go..... School tomorrow.  She's very excited..... and I'm almost sighing with relief.  I would be if it were already 10am tomorrow!  There's a limit to how many drives around the block you can do.... Kaylia just wants a while in the car.... she doesn't mind where the car goes.  We've just got home from a drive round Darlington and it was sufficient for her.  Now she's running round the house..... very happy.

She loves to hear the precise detail of getting to school..... each minute step..... from getting out of bed..... through to arriving school.  I guess that this sort of replaces imagination for her.