Well what a week we have had with services being cut. Sucks big time, but as always we will get there.
Best to explain it all, as it is hard to understand.
Ryan has funding from 3 different areas.
1. Family support package. This is a fixed amount from Disability Services Qld and the amount we took out of their hands for managing and put into the hands of Muscular Dystrophy Qld. This pays for 2 hours a night personal care, out of home respite and help with a cleaner fortnightly, to do the things I can't. This amount is $22,000 per year. MDAQ gets between 5 to 8 percent for helping us manage this (the more I do the less it is). With the charge for carers at $40 an hour, there isn't a lot of room for movement. This amount never increases and the amount of services it gave us when we first got it 7 years ago was double what we get now.
2. HACC funding. This gave us 2 overnights a week, but at a reduced cost and we had to pay the difference out of our own pockets. This is Federal Government and funding has been reduced to half, so we lose 1 night a week overnight care. This is not guaranteed and can go at any time. The full cost of the overnight shift we are losing is $382.50, so not an option to even pay the full amount without selling a body part.
3. Post School funding. This is to help Ryan get out into society, access his job agency and has been used for helping him do his photography course and helped with other access. This is an amount of hours. Due to weeks when we have been away or Ryan in respite or cancelled shifts, Ryan had an abundance of hours. So much so that instead of 30 hours a month, he could get 46 hours a month. So it helped with him accessing sport and another day a week to help with appointments etc for him. Ryan's case worker for this lot of support, didn't realize it was running low or in fact that it had gone over until now. So all of a sudden it is now back to 30 hours.
On top of this, there is respite at Montrose which was 4 nights a month. Due to increase of people accessing the service, for the next 6 months, Ryan will only be able to access it twice.
So in total, what we were getting was 7 overnight shifts, 12 personal care shifts, 7 days to access community and 4 out of home respite shifts a month.
What it will now be a month is 3 overnight shifts, 12 personal care shifts, 3 days to access community and the 4 out of home shifts in August and November.
Confused yet? As you can see, nothing is straight forward. When there is an increase in charges, it will all change again. MDAQ are our advocate with DSQ, but as you can see we don't just deal with them. Due to having some savings that we have been able to carry over for a once off, we can use it to pay for a carer when we have something on. So for example we have a wedding to go to and am looking at a 9 hour shift @ $51 an hour.
Our funding does not have any provision for equipment in it. MDAQ are trying to get a new bed for Ryan, as his keeps breaking down.
We were offered 2 x 5 hours days out of home respite by DSQ, but the place it was offered at was 1.5 hour drive from here. So 3 hours travel of a morning and again of an afternoon. Apart from the fact that Ryan is not up to that much of a drive a day, is 6 hours travel for 5 hours break realistic? I think not. I also think it was a token offer, knowing that it was unsuitable.
With regards to the new disability care that the federal government has brought in. I don't know how that will help or hinder us. It won't be in Qld until 2016 and the more I read about it, the more confused I am. There just doesn't seem to be any clear guides as to how it works and what help you get.
All of this is nothing new. Each year this is what we have to deal with. You seem to get ahead one step then 2 back. After 7 years I should be use to it. The sad thing is, that while I can only pray that we didn't have to go through this every year. I know that it will only stop when Ryan is no longer with us and we don't need it any more.
So I just keep fighting it all and let off steam in here and facebook when I can. I know it is hard for some to understand and I hope this explains it all a bit better. We are lucky that we get help, but it has not been from just luck. It has been from me being a bloody bulldog and fighting for it. I will continue to do that and if people think that is just me whinging, then the unfriend button is up on the right.