Three stories about wheelchairs.
The week ahead holds great hope: three drawn out dramas could possibly be resolved. (Number 3 is the best, so read on….)
I had a terrific little power wheelchair a couple of years ago which I bought after research and consultation with an Occupational Therapist. Small, and purely for use around the home, its primary virtue was that it had enough space under the seat to accomodate the ventilator with which I breath much to the time. Under-seat space on power wheelchairs is vanishingly rare, but I found a chair that perfectly accommodated one of my breathing/battery ‘rigs’. I purchased second hand, and sadly the little chair developed a motor problem after about 9 months, and it has been sitting in the corner of the garage for almost two years now. A single motor/gearbox unit is worth more than I paid for the whole chair. In October last year the NDIS agreed to fund a replacement, and a quote and supplier were lined up. But having approved the funding, some tiny dot was apparently missing on some form or other, and the funds were not released. With numerous phone calls, you probably know how it goes, it took a mere three months for the missing dot to be discovered, and the funds were released conveniently on the Friday before Christmas: effectively the last trading day of 2018. By the time the company that had been paid for the wheelchair actually place the order in January, all Australian stock had apparently been sold, and the chair could not be delivered. It was to be March. Then it was to be April. May (apparently) is far more promising and last week they said, “next week (maybe)”.
Cracks in the rims of my wonderful, hi-tech manual wheelchair began appearing late last year. Towards the end of February the cracks became so serious that both wheels were well out of alignment, and a disaster seemed imminent. With great reluctance I dusted of Bugger, the faithful but vastly inferior hospital-grade wheelchair which I bought second hand in 2010. For the first few days using this heavy, ancient chair I wondered if an active life could possibly continue, and the intimidation and fear was overwhelming. But life did roll on. The cracks, by the way, are probably a legacy of using solid tyres rather than the more forgiving pneumatic inner tubes, for those who take an interest in such things. New wheels cost $1000.00. Per side! So I consulted with a mechanic and we ordered the rims alone from America. After many weeks they finally arrived, and of course were the wrong ones. A “picking error” was the verdict. The second set arrived late last week, so that’s a mere 10 weeks after the first order was placed. And, all going well, the good chair will be back on the road this week!
I tell these two stories for a purpose, and not just to have a whinge. This is exactly how things in the disability sector play out, time after time. In our contact with families in Special Education, my Favourite Wife and I have seen many children wait far longer than this. It can take well over a year, even two years, for an ungently needed wheelchair to be approved and provided, by which time the child has grown and the prescribed chair is much less than optimal. In the “able” world nobody would put up with such delays and, sad to say, such ineptitude. But in the disability sector the choices are far narrower, contracts tie you to single providers, and a host of other factors produce a mediocrity that is hard to tolerate. This is a rant, yes, but I am ranting on behalf of host of others. I’m ranting on behalf of people who don’t have the ability to self-advocate; and on behalf of parents whose lives are already stretched beyond imagining and who must also put up with endless, intractable problems with funding and supply.
With that out of the way…
Over 9 years I have made four applications to become a volunteer pastoral visitor in our local hospitals, and this week I am accompanying the Health Service Chaplain to a neighbouring town to visit a facility that currently has no pastoral care. I have been in a truly excellent training programme over the past three weeks, and now, finally, I’m approved and ready to start. I made my fourth (and final!) application to become a volunteer visitor last year, at the same time that I returned to woodwind playing on the strength of a remarkable change in medication. My first application, 9 years ago, failed on the grounds that I had just missed the mandatory training programme that was only held annually, which is fair enough. Attempts 2 and 3 were made to a different Chaplain in the Health Service, and both failed on the astonishing grounds that he considered a wheelchair “unsuitable” in a hospital setting. But his reign “came to pass”, and the new Chaplain is welcoming and altogether good.
A big week ahead!
I have decided to no longer link my blog posts to Facebook, for reasons I will soon write about here. As a result I believe Rejoice! is now only read by a handful of people, down from the heady days when it was read by many hundreds each week. But I’m still here, and would still love to hear from you!