Jane Holmes Blog: Paying for equipment is tough, but what is the answer?By Jane Holmes
January 11, 2013
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
One of the best things about running a charity for families with disabled children is that meet and make friends with so many new people, many of whom face the same kinds of challenges that we do.
Of course, as soon as we get together, whether face-to-face on even online, the conversation inevitably and quickly turns to those challenges.
At the moment, the biggest problem seems to be the sourcing of equipment for physically disabled children.
One friend, not from this area, has two severely disabled children. She has had funding refused for outside seating.
That means that she is unable to take her children out at all unless she carries them, puts them in inappropriate seating or fund raises for a wheelchair or specialist buggy for them.
They need special seating indoors which, granted, has been funded but that means they do not qualify for specialist seating for outside.
So, alongside caring for her two children, she is busy organising fund raising drives so that she can actually take them outside safely.
Other friends, local this time, had to buy a wheelchair for their son out of their own money because the Wheelchair Service managed to break the existing chair that they had provided.
Nobody would disagree that this is absolutely outrageous.
My own daughter was provided with a manual wheelchair, but refused a power-base. At the age of 11 she wants to be independent and is desperate, she says, to 'run'.
That too has been refused because you are not entitled to a powered wheelchair until you are an independent user. Bit difficult when you have never had the chance to practise. So we too are trying to get the money together to fund essential equipment for our daughter.
I know equipment is expensive and that there are charities which exist to help families provide wheelchairs for their children. However, there are long waiting lists, extensive means testing and often contribution is provided towards the amount needed.
In families where only one parent can work, due to caring responsibilities, it is very tough. But what is the answer?