The transition from primary to high school is a big step. Now throw into the mix new friends, new location, new demands on homework, a new
teenager as well as a disability, and you have a child under considerable pressure.
Just like primary school, Daniel has had a teacher’s aide with him in order to push him around in the wheelchair, scribe for him during lessons, assist him with practical tests, etc. There was, however, one thing that we did not count on – his desire to be independent.
Until Daniel started raising this topic with us I took my moments of solitude for granted.
That is, how many times have you said to yourself, I just need time to myself?
, then acted upon that thought and promptly taken yourself away somewhere so you could just chill
.As a young boy, Daniel has always had mum and dad with him and never knew any different. As his body changes, however, so have his needs and wants – one of which is to have time alone.
We realised, as Daniel is now exploring his early teenage years he is wanting to have time with his peers without having an adult around all the time to bear witness to every action and intention that he has. He wants to talk to his friends using school yard language
without the fear of being corrected or perhaps even reported back to the teachers or school executive by the teachers aides.
How would you feel if you had a person with you ALL THE TIME. All day? Everyday?
Daniel summed it up nicely. He said, I feel like I don’t have any privacy
. My little boy is growing up and as parents it is critical that we respect his development.
We had a meeting with the school to discuss ways in which we can maintain Daniel’s safety at school while, at the same time, provide latitude for him to have time with his friends. We came up with several ideas which so far have worked very well:
Penny is dropping Daniel at school earlier so that his friends get to play with him one on one for a little while before his teacher’s aides arrive (there is school yard supervision, however, nothing that directly impinges on Daniel’s privacy).
At lunch time, after feeding him, the teacher’s aides are taking their own break and allowing him time with his peers.
The teachers have advised they will look at ways Daniel can perform tasks in the classroom by himself so that the teacher’s aides are called upon only when required.
But the main crux of this blog post is a suggestion that came from one of the teachers. Can we get Daniel an electric wheelchair so that he can be independently mobile?
. Everyone in the room (the other teachers) nodded in agreement and then looked at us expectantly as if that was our action item
to take away and put in place.
What is amazing is, not only the costs involved in such a simple decision, but the cascading impact of that decision. Let me explain.
Penny and I are not new to the topic of providing an electric wheelchair for Daniel and investigated it about a year ago. At the moment we have a station wagon (estate car for my US readers) and we lift Daniel’s wheelchair in and out of the back of the car by hand. Daniel simply rides in the back seat of the car as a normal passenger so the purchase of an electric wheelchair has several implications:
it costs around $15,000 (AUD)
- it requires access to power points to be recharged at both/each location
- it weighs more than my wife and I can physically lift into a car (particularly with our backs in such a mess!)
- the size of the wheelchair requires we purchase a replacement car in order to hold the wheelchair ($50,000 – $70,000 AUD)
- we then need to have the car modified in order to allow the wheelchair to be driven, or lifted, into the car ($30,000).
So while we agree in principal that providing Daniel with an electric wheelchair is an excellent idea to assist in the development of his independence and self esteem, it also comes at a significant price tag of around $95,000 – $115,000. This is currently far beyond our reach.
We did however find a second hand Toyota Tarago at the beginning of 2009 that had been converted for wheelchair access. It was perfect for our needs, however, with the car being 6 years old, odometer at 180,000 kms and a price tag still around $62,000 it was not a sensible purchase.
I would be interested to know from my readers of the resources available to us when it comes to disabled access vehicles, conversions, second hand vehicles, etc.
Also, I would be interested to know what happened to you when you purchased your vehicle – what should I look out for?
Rodney Clarke Welcome to the Hey Dad blog … my name is Rodney Clarke and I suppose I qualify for the Hey Dad blog page for one major reason … I'm a dad! 
My oh my. It’s a never ending drip of money eh? We’ve got a chair for our daughter. PADP would not supply it, so we bought it. And the car. And the ramps. And we modified the house… We’re only one suburb up from you guys i think, so feel free to come and have a look at the “cheap” not-converted Tarago option.
Also, can the school not provice more stuff electronically? I do question the need for an aide to scribe for a child in this day and age… With the smartboards, there is really no excuse. And there is heaps of other stuff out there (electronic readers, ebooks, presentation software, and nifty applications to make iPods very handy for kids with disabilities.
Feel free to email me on heikefabig at bigpond dot com
Email me on heikefabig@bigpond.com and we can organise that you come and see our car setup. No need to modify the car if Daniel can travel in the car.
Definitely a power wheel chair requires another $200K in housing modification, van purchase/modification etc. Sent us broke. But it enables real independence from boring adults (all adults are boring to teenagers). We took the decision some time ago to replace human aides wherever possible with technology, so power chair, laptop and software to do schoolwork without a scribe, kids to help with lunchbox etc. In short, a “normal” teenage life without another adult impinging. It’s not at all easy to manage but it does enhance capacity for independence – and that’s really important. Good luck with your decision-making with Daniel’s growing indepence.
Dear Rodney
i used to know Daniel long ago when Conductive EDU was just starting in AUS. Daniel is a fine young man and his determination is a national inspiration.
i know how it feels i too had to fight for mobility rights at my school and let me tell you it pays off to teach your child to be their own advocate. but it’s more than that at your local high school the disabled are a dying breed.
we as members of Public education have a social mandate to defend our mobility rights
I think independence is important. I know of kids who leave their powerchair at school and others who use subsidised taxi transport to and from school in the chair (their parents not having accessible vehicles).
I live in a different state where the powerchair was partially subsidised for my son. I think our contribution was just under $4K. We have a VW bus because we have four kids plus the powerchair. We haven’t got the bus modified yet because it is my view that my son is better off travelling in his own car seat rather then the 100kg powerchair. We have a crane hydraulic lift that picks up the chair and puts it in the back of the vehicle. The cost secondhand was around $2K. May be an option depending on the station wagon and whether you can get a powerchair with a back that folds down.
Good luck.
When my twin were to start school they had no wheelchairs, we were making do with Twin prams. They were assessed for Electric Wheelchairs considering the fact that two adults would be required to push the manual wheelchairs. Finally when applications were put for funding it was hard as the total cost was $25000.00 We were on pins, then a miracle happened in December 2006 there was a promotion at Roseland Centro ‘Miracles do happen’ and we won a cheque of $10,000.00 towards purchase of the wheelchairs. Variety funded one wheelchair. Julian and Joanne used hired manual wheelchairs for the first 4mths in school.
They get the DET special transport for school. So they were using their wheelchairs only for school. It was getting very tough as we were literally grounded, not able to go out much and most of the time lifting them in and out of our family car. We tried hard to get some funding support, we were informed that Variety Club does support funding for the modification of the vehicle to a limit of $13,000/- but since they funded the wheelchair we were not eligible for another 2yrs. Finally we managed to get $4000.00 ($2000/- for each for Julian and Joanne)from DADHC towards the modification.
It was tough finding a vehicle suitable for 2 wheelchairs. When searching for secondhand vehicles on http://e-bility.com/classifieds/vehicles.php (a good site for modified vehicles) and the Trading post, we came across a Toyota Hiace Van (private sale) in the Trading post. It was an ex-DADHC van fully modified complete with the hoist, 87000km for $31000.00 We jumped at the opportunity and decided to purchase the vehicle, we used the $4000.00 towards the purchase and informed DADHC accordingly.