OR….more to the point, should I???
Out of the blue, late last week I got a phone call about a funding application that we had put in about 18 months ago for speech therapy for BC. It was with a community based organisation.
To be honest, I’d pretty much given up on anything coming from it ages ago and forgotten all about it.
BUT it appears that we’ve finally reached the top of their very long waiting list and we are now eligible for 3 months funding for his speech therapy. Great!
The case manager offered to come out to our home, which she did yesterday.
She was lovely and took a shine to BC straight away. He was on his very best behaviour. He was playing while I spoke with her, but clearly had one ear on the conversation the whole time. When I mentioned his second skin suit, he lifted up his top to show her the cute Spiderman design. When I mentioned his PODD communication book, he brought it to me and said “I’ve got something to say”. When I talked about his improving walking skills, he stood and took a few steps across the room. One thing I can always say about him – BC definitely knows when it’s a good time to please an audience ;-).
I spoke with the case manager about the voice output device we want to get for BC – the one that costs $15,000 and we have to secure funding for. She said she had an idea and would call me later.
And she did. She rang late yesterday afternoon to tell me she had someone who could help arrange all the funds that we needed for the device. She said she was SURE they would be able to help.
She also said she could foresee ways of funding a further Second Skin suit when he needs it and continued speech therapy funding.
Now, I am thrilled. Really. Can’t believe that after years of us having to seek high and low for funding for various things, that suddenly I am being told there is money and people available who want to make everything easier for us.
Part of me thinks that I should just count my blessings – because after all, this is the way it SHOULD be.
But the other part is refusing to believe it could possibly be true – for the simple reason that it just sounds too GOOD to be true.
I am going to reserve my judgement on whether or not we have found a Fairy Godmother until we’re a bit further down the track and I know a bit more about. I want to believe we’ve found one! I really do!
The one thing that my discussion with the case manager has made me realise, yet again, is just how much simpler things SHOULD be. It shouldn’t be a matter of us just having tapped into the right organisation (and finally making it to the top of a long waiting list). Access to this sort of assistance should be readily available and parents should not need to work their way ‘Through the Maze’ as the ACD (Association for Children with a Disability) booklet is so aptly named.
I am not complaining, honestly! It’s wonderful and I am incredible grateful, but I hope for a future where the maze is totally bulldozed and there’s just a clear, simple path towards access to equipment and services for all who need them, with pretty flowers planted on either side…. or is that just another fairy tale?