Have you ever looked at someone in a wheelchair and wondered what happens to them if that wheelchair breaks? Until I had my girls (who need wheelchairs) this never entered my head. I thought these people would have spares or would have access to hire equipment. And then when my girls got their wheelchairs the OT tried to tell me that wheelchairs rarely break. Well the joke was on me.
Two weeks ago my youngest daughters wheelchair broke. And it was then that I realised how bad the system was.
Firstly I was lucky to get a hire wheelchair to suit her needs from the independent living centre 1.5 hours away. This was at a cost of $70. While this might not seem like much to most people, it is a lot when you are on a pension.
After sorting out a hire wheelchair I then had the hassle of getting repairs authorised. I found out this has to go through the local Government OT. Something that our town was lacking at the moment because the OT left in April and has yet to be replaced. Finally, after many tears, they authorised our private autism OT to do the paperwork. I finally thought I was getting somewhere but I was wrong.
It took two weeks for the repair place to get back to the OT. And the news was not good. They did not believe that we had the wheelchair we stated we have (despite having paperwork and the model on the wheelchair to prove it). So the OT decided to get them to call me directly.
Yesterday they called me and I was almost in tears by the end of it. They need to see the wheelchair. This is understandable. But they wanted me to bring it in on Friday and no amount of “that is impossible” made them understand that this week was not doable for me.
You see, I do not have the luxury of just going off on a 1.5 hour drive even when the girls are in school. Because of the nature of their special needs, I have to be on standby in case they have seizures. To go anywhere during the week means I have to make sure that my sister, dad or mother can pick my girls up if anything happens to them. The few times I threw caution to the wind, I was called because they were sick and had to hightail back 1.5 hours. This is the one week that no one is on hand to help.
Then there is the additional issue that I have to drive the girls to therapy at 10am. Therapy goes until 12pm and then I have to be back in the town I live in (which is an hour from their therapy place) for MORE therapy. Skipping the therapy that is an hour away means it costs me money. Skipping the therapy in town means no speech therapy for a month as that is all I can get from the local government speech therapist as she is so run off her skull.
After twenty minutes of them telling me I should rearrange my girls schedules of therapy to suit them they FINALLY offered to send a mobile technician out to me at the therapy centre. This I am grateful for but it was a struggle to get there.
So the wheelchair will be looked at on Friday. But then they have to order in the part from Germany and then fit it so we are looking at another 6 weeks before the wheelchair is fixed.
The stress now? I have to give the hire wheelchair back in 2 weeks and I cannot have it for the 6 more weeks it will take to fix the wheelchair.
So the dilemma is now that I have to find something that will support my daughter enough to last 6 weeks while on a pension.
I will also have to look at a spare for my other daughter because her wheelchair is now looking like it needs repairs because the OT ordered the wrong parts for it before she left (this is just one of a huge list of stuff ups she made).
So it looks like I will have to find about $350 for a deposit on a dobuggy and a wallaby from doability and then pay the rest off. These wheelchairs are not ideal for my daughters because they do not tilt back, but they are all I can afford that will be big enough and have harnesses to offer them torso support. Just simple fold up wheelchairs are not enough. But I don’t have the $10,000 to buy the same wheelchairs they have.
This got me thinking about how inadequate the system is.
Most people can get funding for ONE mobility equipment (and often not all of it is funded). Yet the Government gives little thought to what happens to the person when these break, malfunction or they outgrow them. And my story proves that hiring appropriate equipment for the duration required is not always something that can happen. I believe that here should be funding out there for either a spare mobility equipment even if it is not as good as the other one they have. Or at least adequate access to hire equipment that are at affordable prices (or even funded) for the duration required. Because not having a wheelchair or walker for someone that requires it is like taking away their legs.
I have heard the same issue arising for prosthetic equipment. Could you imagine having a prosthetic limb and having it break. And not being able to get another one? If it was a leg then you would most likely need a wheelchair to hire which is not easy if you are a child. And not always readily available or affordable.
Then there is also the gross lack of therapy providers. We used to have more up here. Much more. But then the Government decided we had too many and took them away and made less therapists cover MORE areas. This is why my children went from having fortnightly speech therapy to monthly speech therapy. And why I drive an hour weekly and pay for a private OT. There is must so little services available through the Government and I hear that this will get worse.
And don’t get me started on respite. I cannot access it because I am rural and my children are under 16.
Or the fact that I save the Government about $600-800 per day by looking after my children myself and not putting them in a home. But I am expected to live on $600 a fortnight Carer Payment (Yes I can work on it but only 25 hours per week INCLUDING travel….and i cant do that because of my girls illness and the fact I need to be available to them all the time-I do not have a choice here unless I want to give up my children which I will never do). Aged people have the same issue. They are expected to live on so little. I would like to see politicians live on what they expect us to live on. Even minimum wage would be a darn sight better. But a lot of us parents (and there are a LOT out there) make it work because our children’s health is so important to us.
The disability sector is grossly underfunded, and people are suffering. Especially when equipment breaks and there is little access to alternative arrangements while it is being fixed. Yet unless you are suffering it personally you often do not sit back and think how these people are affected. I know the Government does not give much thought to it because they keep taking things away. The Disability Care Plan/National Disability Insurance Scheme will not change much….yes they make it sound so good on paper but at the end of the day we will not be much better off (if we are at all) than what we are now.
So when you see a person in a wheelchair or using a walker….take a minute to contemplate how hard life can be if this was taken away….and if its hard for you to imagine….imagine what would happen if someone took your legs away for a day
Posted by clarebear1983, 28th August 2013