Yesterday, time stood still while I watched the Doncaster Primary School Principal, Sierra's teacher and another staff member read through 7-8 different wads of paperwork, all with several highlighted sections outlining how the school are not able to meet Sierra's needs. Their answer is to send her to a "special school"; everything Shane and I have stood for slipping through my fingers and all I could do was listen and hear them fully. The bottom line is that we have not had the money to pay $300 per week, for bi-weekly $150 appointments for Speech and Language, Physiotherapy and Occupational Therapists to go into the school and train the school aides. The CPEC (Cerebral Palsy Education Centre) advocate that came with us to the appointment has worked for years in special schools. For several years she has helped integrate children, like Sierra, into mainstream schools and firmly believes Sierra is intelligent and perfectly capable of being in mainstream school. But without funding, she cannot remain there. A line in the sand has been drawn. Shane and I have until Tuesday to work out an acceptable solution.
I have called a meeting with some of Sierra's Angels tomorrow to discuss a possible fundraising campaign to raise £25K annually by having people contribute a monthly donation.
Last year I pulled out all the stops and went for all the public funding I could find. Shane was fatigued and after years of people suggesting, "There must be something that the government can give you?!" and asking, "Well isn't that funded by the government or something?" I went for it and I exhausted every funding body I could find in Australia and filled in every funding application I could find in Victoria to give Shane, Sierra and I a better quality of life. It helped with the funding of some respite and a couple of pieces of equipment.
We were also allocated the level 6 (maximum) funding for school, and were accepted on the disability support register with the government (money we won't see for years because we have to wait for someone to pass away to get allocated their amount and at the high rate that Sierra needs only 3% of people ever get allocated at all.....straight from the mouth of the DHS government representative himself).
It had to be done and if I hadn't gone full out in this direction, we wouldn't have found our incredible carer Melissa. And Sierra would not be in mainstream school.
On the other hand, it had a significant impact on my health and nearly cost me my job with the hours I dedicated to making it all happen.
Shane and I are exhausted and with a huge appreciation for the incredible generosity of everyone who has contributed to Sierra's quality of life!
Currently we have no further physiotherapy, speech and language, occupational therapy appointments booked to help the aides in school with how to help Sierra learn, sit safely, avoid contractures and sores from sitting all day, changing her and supporting her using her communication book and computer due to no further funding availability. Unbelievably there is virtually NO funding available for kids between 7-13 years old. In addition, there are the O/S trips to train our carers and work with the UK physiotherapist who creates a home physiotherapy program and to visit the European doctors (all who provide additional input or therapy that we have not found here).
I had believed that if I actually did the work and approached all those funding bodies that people said "must be out there" and went to the government and actually lodged the DSR, I would not have to come back to my friends and family again.
It breaks my heart that with everything that people have given us over and over again that we don't have what we need.
One of the initiatives that a Sierra Angel came up with once was a £10 a month scheme. On reflection it is by far the best idea overall. I have approximately 15 people who contribute in this way. This has benefitted us is that when Sierra and I do the O/S trips there has been money in the UK account to pay for the physiotherapist and other appointments. I am now proposing we extend this initiative to cover all of Sierra's therapy.
Why I like this initiative the most is because it's sustainable and if someone asked me to participate in this way I know I would if I believed in the cause.
If you are willing to help or ask others to do this you will see at the bottom of this blog my account details for both Australia and the UK. Any annual, monthly or weekly amounts will be greatly appreciated.
My target is £25K annually because it really does take that and more.
That's just over 200 people at £10 per month.
