Jane Holmes: Feeling the pinch but setting Kitty freeBy Jane Holmes
May 03, 2012
Jane Holmes is chief executive of Wokingham-based charity Building for the Future which provides support and activities for disabled children. She set up the charity after her daughter Kitty was born with severe cerebral palsy.
There has been a lot of publicity about government cuts, particularly how they affect the vulnerable, which of course includes disabled children.
Locally, I've really noticed the pinch.
Whether because of cuts or in anticipation of them, the NHS particularly seems to be seriously watching the pennies.
Equipment has rarely been handed over on a plate, but no amount of fighting is helping at the moment, so it seems.
Wheelchair Service's refusal to fund a powered wheelchair base for my daughter on the grounds of safety, while at the same time recommending we apply to charities for funding, is a case in point.
Try as I might, I can't work out how a charity funded wheelchair could be any safer than an NHS funded one. So I hope I will be forgiven for drawing the conclusion that safety is not the actual issue here.
In our case, I have ended up buying a powered wheelchair on Ebay for £350 just so that my daughter can enjoy the freedom and independence she craves and deserves sooner rather than later.
In order to apply for charity funding for a new chair, you are assessed and then placed on a waiting list.
In many cases this stands at well over a year. Even if you are then successful, you will only get part of what you need.
The rest needs to come from fundraising or other charities. So, my daughter will learn to drive a powered wheelchair with a seating system that doesn't fully support her. This will have a negative effect on her posture and her hand function and may even put her at risk of needing surgery in the future.
But as a parent, what would you do? Your child is desperate to get moving.
So do you wait a year or two until you can scrape the money together or do you provide what you can so that they are able to truly grow, so that they can explore the world, have some independence and metaphorically speaking, stand on their own two feet?
Isn't that what growing up is all about?