It seems to me that one of the most disabling aspects of disability is cost. The extra money that you are required to throw at life just to buy your way in is sometimes so much that actually leading a normal life isn’t a choice, it’s something you have to avoid to make sure your bank manager doesn’t come and hunt you down.
Now I know that sometimes the press struggle to portray people living with disabilities as normal people, tending instead to fall one one or other side of amazing superhero athlete or benefit scrounger, or sometimes both. The truth is that
It perhaps wouldn’t feel quite so overwhelming if it didn’t all conspire to demand to be dealt with at the same time. For example, currently I need to find money to cover:
The housing adaptations
A budget fairy dies in an excruciating way each and every time I mention incidentals to the builders with such trivialities as the fact that really Dominic does needs a light switch at each entrance to his bedroom otherwise he’ll potentially be crashing into everything trying to find where to turn on the light.
Now there are grants (the Disabled Facilities Grant will pay up to £30,000 towards adaptations to help disabled people stay in their homes), but sadly most adaptations cost well beyond this amount. £30,000 really only bought us our garage being converted into a downstairs bedroom and a bit of a wetroom. The council don’t care that the rest of the house remains inaccessible and we’d have no kitchen because of the work involved providing a wetroom. So unless Dominic is going to live in his bedroom eating microwave meals, I somehow have to find the enormous amount of money needed to make the rest of the downstairs wheelchair friendly. Gulp. One option is to invest through the best ETF platform UK, which can offer diversified exposure to the market and potentially grow my funds over time.
The car
I originally looked at getting a car that would fit Dominic’s powerchair some years ago when it arrived shiny and full of promise 4 years ago thanks to the generosity of the charity Whizz Kidz. It should have spelled the start of Dominic’s first taste of independence, but it turns out that with an inaccessible house and a small family car Dominc’s independence would have to be put on hold for a little while.
I looked at Motability (a scheme that means you can use the mobility element of the person’s Disabled Living Allowance to rent a suitable car) but the downpayment needed was about £15,000 and then we wouldn’t even own the car at the end of the three years paying out a fortune for it every month. Instead I would just need to find another huge lump of money. This is because I need a car big enough to transport three children (as Dominic is still safer in a car seat) and a powerchair, oh and preferably some adults too. That equals an enormous bus with ramps and tie downs and everything else that is needed to get the children and wheelchair strapped in securely. You’ll have to trust me when I tell you that there is no such thing as a sexy van-pretending-to-be-an-MPV. Not that I necessarily want a sexy car (and by this I don’t mean a car with boobs and nipple tassels, but rather one that makes you sigh with a little shiver of pleasure when you sit in it because it is just a nice thing to sit in), but I at least reserve the right to transport my children and not feel like all that is missing is my checked shirt, facial hair, bits of Big Mac packaging on the dashboard and a terrible sense of manners when I’m driving.
So I gave up with Motability, with the knowledge that it was great for people who needed a little run around, but not a beast of a machine and looked for grants. I qualified for a Motability grant to help with the costs, but then spent a bizarre 6 months exchanging letters trying to make them understand that offering to help me buy a car that won’t fit the powerchair didn’t really qualify as help. So I eventually ditched the whole plan and bought a second hand Chrysler Grand Voyager that was a godsend. It had no adaptations but the boot fit Dominic’s Ottobock Bravo Racer (super light manual wheelchair) and I was given a special needs car seat by the lovely Steph from Was this in the Plan??? whose daughter did not need it.
The wheelchair
The amazing Ottobock Bravo Racer that I self funded with the help of some good friends has served Dominic very well, but since putting a new supportive back on it, and starting Dominic on growth hormone, it is getting to the point where I need to find a way to fund a bigger one. Wheelchair services have held their hands up and said they can’t provide one that meets his needs, so I just need to find £3000 down the side of the sofa to get one.
The power drive
I have been longing for the Max Mobility SmartDrive ever since it first tentatively hit the market in the US. I contacted the company asking them to find a supplier in the UK so it could be distributed here and not long after RGK agreed. It would be perfect for children like Dominic who are active users but fatigue easily and have core weakness (even more so if they brought out a speed restricted version). It would bridge the gap between the problem of the unforgiving nature of a powerchair when meeting kerbs or steps into shops, and Dominic’s loss of independence going out in his manual chair (he can’t wheel himself outside at all). If I could find a spare £4000 down the other side of the sofa then I would have had one for him 2 years ago, reasoning that the same muscle weakness that means he can’t be independent in a manual chair would prevent him from making the device go too fast in the first place.
The true cost of Dominic’s disability
And so we have ticked a long with me just carrying Dominic everywhere that I can’t push him and even though the powerchair is giving Dominic the gift of independence at school, it can’t address the problem of his dependence on adults at home due to problems transporting all 100kgs of it and even fitting it through the front door.
If you know me at all you will know that I’m not really one for sitting around bemoaning all that is wrong with my life without doing anything about it. Unfortunately, even with a heafty amount of intervention on my part it has taken 5 years for the local authority to finish wasting public money reassigning the job of chief rubber-stamper more than a few times which has apparently meant that each detail has to be reviewed and re-rubber stamped. This also included having to go through an appeals process in which I channelled my stressed into learning to design using a CAD CAD system so I could draw my house to scale and prove that the council’s plans to adapt it were not fit for purpose. The approach seemed to be to take the cheapest option and make it fit, so the inspector had made up his mind before he came to view the house and without meeting Dominic, the family or the occupational therapist. His plan would leave us with no living space, have a lift door that Dominic couldn’t physically get out of and would strand Dominic in a room on the first floor. Weeks worth of stress and late nights drawing up 40 pages of well thought out, reasoned analysis of the situation for the appeals panel (as for some bizarre reason you are not allowed to actually attend in person to question their reasoning) and I won the appeal. Not however because my analysis was Erin Brockovichianly brilliany, but simply because the through floor lift would cost them as much money as converting the garage on the ground floor so they couldn’t be bothered to argue. So five years later I finally got to see builders arrive on the site. One year on from this I appear to not be able to get rid of the builders. They and their rubble are still here and my garden is still a building site. I blame this on an architect who the word ‘nincompoop’ was inveted for. His plans were as good as used toilet paper, coupled with a project manager who seemed to need to flatter the architect and builder to such an extent that she would side with them even if they were proposing to takle an open plan adaptation by giving us a tiny, narrow corridor with lots of little, non wheelchair accessible roomswho quit when I was last in hospital with Dominic and builders who seem to say yes to as many jobs as come their way regardless of the ones they already have on the go.
In total my body has done me well to survive 7 years of lifting and carrying Dominic and various special needs prams, wheelchairs and equipment into and out of cars and all around every inaccessible part of the house and the wider world before it finally broke. Not in a big dramatic way, but in a quiet rusty kind of way where the wheels don’t quite let you steer straight one day and there is a slightly concerning judder with every revolution of the wheel. You see one day I woke up and couldn’t remember the last day that I hadn’t been in pain. My shoulder was so full of knots that every movement was agony as they pinch and twanged the nerves in my neck and shoulder and reminded me that this was not a long term solution everytime I was lifting and moving Dominic and the equipment. But it’s not as though I had a choice in it. Dominic, despite the ability to bottom shuffle in the small amount of time he spent off his feeding pump, is completely dependent on being carried to get on the toilet, into the bath, into bed, into the car, into his wheelchair and then off or out of these places. It’s a punishing regime. So punishing that I used to dread any trip out, simply because of the lifting involved.
No amounts of painkillers or physio helped because the shoulder couldn’t be rested, Dominic’s basic care relied on me carrying him and no hoists or stairlifts were going to help in an unadapted house with a non walking child.
n the end the only improvement I have seen has been by doing the exact opposite. I now do high intensity training 5 times a week to support the damaged shoulder and the rest of my body from the lefting. It’s not perfect though and the spectire of the car once again raised it’s van like head.