By Debbie le Quesne

Knowledge – the key to getting what disabled deserve

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Sourcing help for disabled love-ones and friends can sometimes be a bumpy ride – with everything from sentimental mush to the inaccessible clinical out there on bookshelves.

As an association we often take inquiries, so I was thrilled to read of a book that has been penned by the mother of a severely disabled child. It charts her own experiences in a matter-of-fact way, tells of her misery and fury, confesses to suicidal thoughts, a long period of depression and damage to her marriage.

It’s raw, not glossed over with sentiment, does not read like a terrible magazine heartbreak story and it helpful on may platforms.

The work was inspired after Jane Raca gave birth to James at 24 weeks. He was diagnosed with severe disabilities.

In a Guardian online article, Jane says she was moved to start writing by a huge sense of injustice.

Alongside the gripping human account of bringing up a disabled child is a searingly angry portrayal of the state’s failure to support her family properly in the years following his birth.

Disability campaigner Rosa Monckton writes in the book’s forward saying it “should be required reading for every MP, for every person in a local authority who has anything to do with providing services for disabled children, and for any doctor or nurse charged with their care”.

Birmingham City Council comes under fire as she recalls that when she and her husband were trying to come to terms with their son’s diagnosis, they had to begin battling against a system, “which is not only complex but which seems designed to thwart [people] to save money”.

She is campaigning for all parents of disabled children to be immediately allocated a highly trained keyworker, who will be on hand to help and to co-ordinate all the services they need – social care, health and education.

I find it remarkable that this woman is a lawyer and despite her learning, still struggled to get the results she needed.

The article quotes: “We had a particularly bad experience, but I think it’s not that uncommon. Our local authority has a bad reputation, but this is going on all over the country.”

She recounts her prolonged campaign to get respite care (which no one had told her she was entitled to), and later to get funding to send her son to a residential school.

Almost every encounter with a social worker appears to conclude with an agreement that help will be given, but is swiftly followed by the observation that “nothing happened” – a phrase that recurs throughout the book.

There appears to be an unspoken, unwritten edict where cash crisis councils rely on the ignorance to help balance book. If someone needing care, or their carers do not identify need, it cannot be met by a statutory obligation. The book goes into much more detail.

We must, at all costs, remain intellectually sharp and not allow a culture which relies on applicants’ lack of knowledge about their rights to help shore up a financially struggling social system.

Jane is quoted: “If central government has legislated to make life better for disabled children, but you’ve got local authorities without enough money that are bending every rule in the book to try to avoid fulfilling their statutory duties, then that’s not on. Don’t pretend we’re going to support our disabled children if we’re not.”

Standing Up for James is available from the standingupforjames.co.uk website.


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