Building for the Future’s CEO and Founder Jane Holmes recently spoke on BBC Radio Berkshire about the issues that parents of disabled children face day-to-day and how those issues are being made worse by the current cost of living crisis.
She explained to Phil Kennedy on his drive-time show on February 2nd how Building for the Future is responding to the crisis.
“According to Scope’s study in 2019 it costs nearly £7,000 a year more to raise a disabled child than an average child so you can imagine how much that has been compounded with the cost of living crisis.
“So as well as offering a warm space for these families who are struggling in a lot of cases to make ends meet especially at the moment it is also a way of bringing families together and parents being able to access that very important parent-to-parent support.
“There is also a carer crisis – it is very, very difficult even when there is money in place there just aren’t carers there – that’s very, very isolating for families so being able to bring them together is really important.”
Later that week Jane was invited back live on air to discuss the issue further on the Sarah Walker Show.
Sarah played a soundbite from a campaigning mum called Suzanne who said that during the current cost of living crisis she faces many daily battles such as ‘whether we turn the lights on, whether I turn the washing machine on’.
Suzanne said the repercussions of money worries and lack of support was putting a strain on the family unit.
Sarah Walker asked Jane: ‘I’m guessing that Suzanne is not alone in feeling this way? ‘
“No she absolutely isn’t alone,” said Jane.
“We recently did a survey among parents whose children attend our play centre in Wokingham and we’ve heard similar things from families in the Wokingham borough and surrounding areas.”
Sarah then asked Jane if the rising cost of living crisis has contributed to the pressures families are facing. ‘Is that ultimately what is pushing people over the edge?’
“I think it’s compounded things, certainly,” added Jane.
“Families of disabled children are already struggling and then the cost of living on top of this is just making things absolutely possible.
“And with the stress of hospital strikes, nurses strikes, ambulance strikes (which very many of our families need on a regular basis) the cost of living carer shortages – that’s another problem.
“It's unbearable for families at the moment. It’s really, really unbearable.”
Looking for a solution, Sarah asked Jane if more funding would help families of disabled children.
“Of course that’s helpful. That’s always been the case for families of disabled children, it’s always put more pressure on the family’s finances, but there has been one governmental disaster after another that’s compounded things.
“So yes - we do need more funding and most families do.
“We’ve been reading updates from the local councillors saying they are looking at adult social care funding – does that mean that more cuts are going to be made?
“It’s all a bit sort of threatening, we just don’t know. It’s making us feel very uneasy, so you know more money is needed, more support is needed, more understanding less fighting would be good.”
Jane and Sarah then talked about the current care crisis and the concerns for the mental health of parent carers coping under the strain. Sarah really wanted to get to the bottom of how families’ situations can be improved and asked Jane just what can be done.
“If the fight was taken away – if we had people coming to us saying ‘how can we help you, what can we do?’ rather than us having to constantly fight, constantly chase, constantly battle that would be a big start.
“To make us feel like we are valued and disabled children and young people are valued members of the community rather than a nuisance would be a huge start.”