Picked my first eatable plant this week!
One thing I've learnt about life, is the world around us doesn't follow the script we write. In someways I've felt my script and ndis plan tested this week. The way I hoped my funding would work in the case of an emergency failed. Its now scrabbling to find a new plan.
I live with the challenges of epilepsy, and the last 12 months has seen my stability decline, although just recently things are looking up. This was on thing that excited me about the ndis and my core funding, the knowledge I no longer needed to take risks and wheelie out and about on my own.
So I guess being instructed my provider to jump in a cab has alarmed me, In my neck of the woods the super moon seemed to be playing havoc with my script. Two dangers collided with my questions ' how to get from A to B safely?'
Seizure are more likely to occur when I am exhausted, so needing cab a too and from physio in the heat of summer concerned me. However more alarming was being instructed by my provider to catch a cab home from trip to the ED. Illness is another risk factor that makes me pron to seziures.
My provider does not ask my workers to drive their own cars, so I rely on taxis. This alone added stress. Before I signed my agreement I was told this would change. I have known for some time the service provider was not suited to me needs and I had been endeavouring in make changes. The wheels of red tape turn slowly. However it seems everyone else was ready to move this week. I did not plan a ride in the ambulance.
This is an event beyond my control, I can not ask for additional support before I know it is needed. I one thing I wanted under the ndis was an end to fitting into a schedule. I do acknowledge my increase health needs collided with the resignation of two of my support staff this week and my coordinator have spent the week reassigning my shifts and this needed to happen for a number of other clients as well.
The balancing act isn't always easy and my guess is I wasn't the only clients whose week didn't go according to script. A sound plan has an emergency plan. The is one thing that frightens about forming my own team, what happens when the next time a blue moon occurs?
I guess with the upheaval of rearranging my roster, in the back of my mind was . . .the additional support needed next week to install my exhibition. What unexpected curve balls await me. Then I remember this is why we as artists belong to a community and art organisations. My support of others affords me an SOS when I needed.
So on a more positive note how to I arrange my back up plan so my artwork arrives at the gallery, it is safety installed and I can be there on opening night to saver the completion of 18 moths work and planning, I am thank you the ndis has a more flexible system to draw on support when my work load is at it peak.
Sure there are many challenges ahead, pit holes in the road I'm yet to encounter, but its just a case of hoping everything runs smoothly, but planning for the worst.
I have never been so thankful knowing my friends have got my back. In sharing my week of curve balls, I hope this assists you in planning for the things that will go wrong and discuss with your provider(s) what additional plans may be able to be put in place. Hopefully I'll be able to share my solutions with you soon!
The count down to opening night has begun!
Drawing Point Gallery
203 Brisbane St, Ipswich
Opening Night 9th February @ 6 pm