I recall the first time I was asked the question ‘Do you want tie-downs?’
“What? What are tie-downs?”, I asked, puzzled.
“Tie-downs are these little metal things that attached to your wheel-chair but means that you can be strapped into a wheel-chair accessible vehicle.”, responded our OT (occupational therapist). “Don’t worry, you can always add them later.”, she quickly added.
For her first wheel chair we didn’t see the need, I mean she was so small and we only had a sedan so we were happy that we could take the wheel chair apart and put it in our boot. Oh how naïve we were.
NDIS was still looming at the time and there was a lot of uncertainty around what would be in an out. Like a lot of other special needs parents, I started to look at the different funding options as well as my daughters current and future needs to see how best to utilise what was available.
She has GMFCS V which basically means she can’t walk and is completely immobile. At the time she was still about 3 years old and in a car seat so we thought we were doing ok. She also had a bingo evolution standard issue through MASS (Medical AIDS Subsidy scheme in Qld) for her postural support as she also has zero head control.
When it came to going out we would wheel her to the car, take her out of her wheel chair, put her in the car seat, then take the chair apart (in two pieces) put it in the boot and fold down the wheels and put that in the boot. It was a bit of or puzzle in our sedan and often it would scratch the inside of the boot. This left little boot space which was ok for short trips and we didn’t notice the difference until I was pregnant with our second child. However when I was pregnant lifting and carrying became harder so I would leave this to my husband. The after number two came along we kept just making do. Going out became a chore and quite the expedition.
So it might be a surprise to you that we thought we were doing ok. We made do and got used to it. So the only reason we decided to take the plunge to getting a modified vehicle was because NDIS was around the corner (back in 2015), I had heard about the possibility of transport being cut so thought we should look at getting it now rather than later and just see if it’s for us, there would still be a large gap but something we were considering.
We were also looking into options for school and found that in order for her to take the accessible bus to school (which an amazing door to door pick up) she would need these mysterious “tie-downs”. It took months, as it always does to put the application in, wait for the funding to come through and then get the provider to arrange for it to happen.
Finally they dropped it off at our house, and I looked at it and asked, “where are they?”.
“They’re there.”, said the equipment provider, pointing to the little black metal circles attached to the side of her chair.
“Is that all? How does it work?”.
They then explained how you can attached the restraint to the tie-downs when she’s in the vehicle.
So we put the started exploring options for a wheelchair accessible vehicle.
Firstly we talked extensively with our allied health team of OTs to look at different options and narrow down what would be good for us. We looked at the fine print with the Vehicle Subsidy Scheme VOSS that was available to us at the time, and found we could get partial funding for
- An exhibiting modified vehicle
- Buy a new car and get it modified.
We submitted our application for VOSS and was surprised how quick it was to be deemed eligible and the people in that team were so nice they called to explain the whole process all within a week. If only the rest was so simple.
We took our time and came up with our must have requirements.
- Must have a passenger seat next to the wheel chair (I had the dream of being able to feed my daughter whilst we were driving)
- Wanted to be able to have at least 5 seats left so we could bring the grandparents or friends along if needed.
- Considerations for her projected total growth height when seated in a wheelchair. Fun fact: when you are 2 years old you are approx half the size you will be when you are an adult. We also looked at both parents for max height. This determined the minimum height in the car.
- Type of access to the car – ramp or lift. After talking to a few people and considering the pros and cons (ramps are usually manual, can get dirty, would take time and effort to pull out, I may not be strong enough, and often need the floor to be lowered which is a greater expense) so I decided it would be much better to go with a lift.
Based on this we were looking at one of the big people movers and of the few that were on the market that could fit a lift, we whittled down to a VW Multivan or a Mercedes Valente. I had considered the Mercedes Sprinter however at 2351mm height it would fit into any shopping centre carpark. We had also ruled out a few brands based on reputation for quality and maintenance.
We test drove the VW first and found it handled really well and felt like a normal car. I really liked the Mercedes Valente, however looking at the height of the vehicle 1890mm it was slightly shorter than the VW Multivan which came in at 1970mm. Both would fit under most shopping centres. So based on this the Mercedes was my preference. But beggars can’t be choosers and my husband managed to find a VW Multivan second-hand on sale with low kms.
The next stage was to choose the modifications. So the good thing with the VW Multivan is that it is really easy to modify as there are tracks on the bottom of the van that allow you to slide the bench seat and 2 captain chairs in and out.
I had done my research and found that most modifications would take the bench seat out leaving only 3 seats plus the wheelchair effectively turning a 7 seater into a 3+1 seater. I had a clear idea of the layout I wanted and was told this is not something usually done (to even just have a seat next to the wheelchair user). I was pretty adamant about this so kept asking and had a number of back and forth conversations for quotes with a number of providers.
I stumbled upon this preferred configuration based on a VW forum I heard that someone had reversed the bench seat successfully. So I wrote to a few places that modify vehicles to see if they could accommodate this. I had done a quote with a layout with someone and here’s what I had actually sent back to them to see if they could do it.
My idea was to turn the bench seat backwards and then have another captain seat on the right of the vehicle. Talking to another there was doubt about the safety because of the modification that had to be done it was not tested. To me riding backwards seems much safer. They recommend babies to be in rear-facing car seats for as long as possible, so surely riding backwards is the safest. They agreed to do this modification, but had to cut the bench seat to fit it in the position, which essentially ‘fixed’ it in this position.
Starting out we thought that getting an accessible vehicle was an unnecessary expense and if it wasn’t for the funding available we probably wouldn’t have considered it. It took some time for the whole triplicate contract to go back and forth at each stage to release money, to confirm the modifications were done, to have it signed off by the OT and it was all quite confusing who we were waiting for and was more drawn out than it needed to be. But in the end it was worth it.
This has changed our lives.
It’s been a number of years since we have done this and not sure how NDIS has changed things. But having this accessible vehicle has made a world of difference. I immediately noticed that we were going out more because even the thought of having to fold up her old pram made me think twice about leaving the house. But with the accessible vehicle it is pretty simple to get her in and out and it means she gets to explore and be part of the community more. Having the bench seat there means that we still have full use to put our groceries, makeshift nappy change table, additional storage under it for our spare nappies, wipes, snacks. We also have the space for extra people join us for trips (eg the grandparents and friends) which makes things simpler when you are going somewhere together rather than taking multiple cars.
Further more it has opened up our eyes to travelling by road. Previously we had continued our love of travel by air, but with the kids found it to be cumbersome having to go through security each time, folding, carrying our immobile daughter through security.
I’m glad I persisted with the configuration I chose, as having a seat next to her means I can feed her in the car and has enabled us to do our annual road trip from Brisbane to Sydney in one go. It takes quite some time to feed her normally so this means that I can slowly feed her but we don’t lose any time with stops. We pack the car in the morning and spend the whole day in the car, packed to the brim. I pass food and entertainment to everyone and can still manage to feed and attend to my daughters needs throughout the whole trip. It has meant we do one stop half way for drive through and toilet, we don’t need to stop every few hours and can get there in one day on a tank of fuel. This has turned out to be the cheaper and easier travel option particularly for our family of 4 and means we don’t need to hire a car or workout how to bring or hire car seats or other equipment whilst we are at our destination. We also can bring our daughter’s wheelchair as it is her seat that she is strapped in and and it means we have an accessible vehicle that she can use.
Who knew that getting ‘tie-downs’ would free us to go out more.
Super Needs Mum 