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(UK) Special needs parents continue to struggle to get any help for their kids

Nov 10, 2018, Guardian: ‘It’s hard to watch your child struggle. All you can do is chase people’ https://www.theguardian.com/education/2018/nov/10/its-hard-to-watch-your-child-struggle-all-you-can-do-is-chase-people As a former bouncer working in north London nightclubs, John Roden thought he knew a thing or two about stressful situations. But taking on the care of his five-year-old granddaughter Hope brought his greatest confrontation. Hope is disabled, and her rare condition means she cannot walk unaided and communicates using a form of sign language. … When the council announced proposals that could cut spending by more than £300,000 over the next academic year, Roden was among those who agreed to take on the fight. Like many parents looking after a child with special educational needs and disabilities (SEND), Roden describes an exhausting fight to secure the best support. Fellow Hackney campaigner Dana Thompson’s daughter, Sade, 16, has narcolepsy and cataplexy, conditions that can cause her to fall asleep suddenly, or collapse. Thompson’s application for support was rejected four times before she received help – a battle that lasted 10 years…. As councils nationwide face budget pressures that threaten them with bankruptcy, some are having to consider cuts to SEND funding that they would never have contemplated just a few years ago. Yet their desperation to balance the books has run up against the desperation of parents determined to secure support for their children. The clash is now being played out in court actions across England. Alicia McColl is among the parents taking action against Surrey county council’s proposal for a £21m cut in its SEND budget. She has been battling for the right support for her 14-year-old son Kian, who has autism, hypermobility, dyspraxia and attention deficit hyperactivity disorder. … Hopes have been raised by the success of a case in Bristol in the summer, in which a judge ruled that the council had unlawfully cut its SEND budget by £5m. Other campaigns are being drawn up in areas including Portsmouth, Gloucestershire and Sussex. … So what is causing the system to creak? The trouble, according to experts and council insiders, is that funding cuts have combined with recent education reforms to create a system loaded against councils – forcing them into cuts and legal battles with parents…. ….Among the parents in the group is Lorraine Heugh, who has faced cuts in funding for the care given to her son Nico, 15, who has autism and anxiety. “We had to go down the legal road and in the end they did supply the funding,” she says. “It didn’t stop there. The following September we had the same problem again. Now we’re in a situation where they have given a little bit of funding, but cut by half. … Kirsty McFinnigan, from North Yorkshire, got involved through social media. After fighting for resources for her son Benedict, 14, she joined the legal battle out of “sheer and utter desperation”. “There’s too many people in this position,” she says. “My son is 14. I’m going to ultimately have to answer to him about why he didn’t get an education, so at least I can say I did everything I could.”…