For dis­abled chil­dren in poverty, this Christ­mas is straight out of Dick­ens

The Guardian Australia - - Opinion - Frances Ryan • Frances Ryan is a Guardian colum­nist

Eight-year-old Fin­ley has al­ways had things tough. He has autism and a bowel con­di­tion, and is scared by crowds and noise. Fin­ley’s mum, Lisa, is dis­abled and does the best she can, but the costs are colos­sal. Fin­ley’s spe­cial nap­pies alone cost £60 a month. Since Lisa be­came too ill to work, so­cial se­cu­rity has been their life­line – from spe­cial­ist food to keep Fin­ley healthy to ther­apy toys to make him less anx­ious.

Then uni­ver­sal credit came in. The in­built six-week wait stopped the fam­ily’s only in­come – “[It] left me with lit­er­ally no money in that time,” Lisa says – and her ben­e­fits now vary month to month.

What’s more, un­der uni­ver­sal credit, dis­abled kids like Fin­ley are see­ing their child dis­abil­ity pay­ment cut in half – that’s a loss of more than £1,750 a year – and Lisa has had to start us­ing her own dis­abil­ity ben­e­fits to top up Fin­ley’s.

The fam­ily car re­cently broke down and they were house­bound as they saved to fix it. Respite care for Fin­ley – a pre­cious breather for both him and Lisa – has ended. Even Christ­mas has to be ra­tioned.

“We’ve had to limit Fin­ley’s ex­pec­ta­tions about Christ­mas, say­ing that Santa will bring one or two presents this year,” Lisa says. “We’re not tak­ing him to see Santa in the runup to Christ­mas be­cause we can’t af­ford it.”

You’d be for­given for think­ing this was some sort of Scrooge-like par­ody of so-“wel­fare re­form”: wealthy Con­ser­va­tive min­is­ters with­hold­ing Christ­mas presents from sick and dis­abled kids. But Fin­ley’s case is bru­tally com­mon: 40% of dis­abled chil­dren are now so poor they’re go­ing with­out Christ­mas and birth­day presents, ac­cord­ing to re­search out this week by the char­ity Con­tact into the cost of child­hood dis­abil­ity. Read through Con­tact’s study and it shows un­flinch­ingly the re­al­ity for Bri­tain’s dis­abled chil­dren, where aus­ter­ity has cut so deep that a quar­ter of fam­i­lies with kids with dis­abil­i­ties are skip­ping meals, while al­most seven in 10 are go­ing with­out new clothes.

The study shows many dis­abled chil­dren are even go­ing with­out hospi­tal ap­point­ments and be­com­ing sicker as a re­sult – like Fin­ley, they need to see a doc­tor but their par­ents are too poor to af­ford the trans­port to get there.

The crit­i­cal un­der­fund­ing of Bri­tain’s dis­abled peo­ple is now well doc­u­mented. But the mal­treat­ment of dis­abled chil­dren is rarely dis­cussed – a sort of na­tional se­cret too shame­ful to ad­mit. A cock­tail of cuts and long­stand­ing in­equal­i­ties is see­ing fam­i­lies with dis­abled kids fac­ing wide­spread hard­ship, plac­ing enor­mous stress on par­ents and rob­bing vul­ner­a­ble chil­dren of their health, se­cu­rity and com­fort.

Across the board, dis­abled kids are be­ing hard­est hit by aus­ter­ity, from los­ing pay­ments un­der uni­ver­sal credit and the clo­sure of respite cen­tres, to the cri­sis in spe­cial ed­u­ca­tional needs. The char­ity Scope is now so con­cerned that it is cur­rently call­ing on the gov­ern­ment to in­tro­duce the first ever min­is­ter for dis­abled chil­dren and fam­i­lies.

It emerged this month that thou­sands of dis­abled chil­dren’s lives are at risk af­ter be­ing de­nied vi­tal equip­ment by cash-strapped coun­cils. The char­ity Newlife found more than eight in 10 lo­cal au­thor­i­ties were us­ing un­law­ful “blan­ket bans” for dis­abled chil­dren – where coun­cils ra­tion shrink­ing bud­gets by re­fus­ing to pro­vide equip­ment such as wheel­chairs or walk­ing frames in any cir­cum­stances, ir­re­spec­tive of the child’s med­i­cal need.

This strain is only set to mount in the com­ing years: by 2021, the Equal­ity and Hu­man Rights Com­mis­sion cal­cu­lates all house­holds with a dis­abled child and a dis­abled adult will shoul­der losses of more than £6,500 a year.

It is the def­i­ni­tion of a safety net gone wrong, in which the very group in so­ci­ety that most needs to be nur­tured and cared for is be­ing dis­carded and harmed. As one par­ent strug­gling to pay the bills put it to Con­tact: “Ben­e­fits should be there to help peo­ple, not make us feel like scroungers and thieves. We’re miss­ing qual­ity time with our ter­mi­nally ill child, all be­cause of money.”

The gov­ern­ment is not so much turn­ing a blind eye to this suf­fer­ing as turn­ing it into a photo-op. As need goes up this win­ter, the Christ­mas sea­son is see­ing a trend of Con­ser­va­tive MPs pos­ing at food banks; the lat­est be­ing the for­mer Brexit sec­re­tary Do­minic Raab. The nerve of this is stag­ger­ing, as if a crim­i­nal re­turn­ing to the scene of a crime, but it shows clearly how the most night­mar­ish of things – say, a dis­abled chil­dren go­ing hun­gry – can em­bed it­self into re­al­ity.

The rhetoric that has so suc­cess­fully scape­goated dis­abled adults in re­cent years – that we are fak­ers, scroungers, leeches – can­not, even by its most zealot crit­ics, be lev­elled at dis­abled chil­dren. In­stead, such a so­cial cri­sis takes hold through a com­bi­na­tion of dis­con­nect and nor­mal­i­sa­tion. Politi­cians pub­licly lament the sad sight of “strug­gling” fam­i­lies at food banks while pre­tend­ing no one has no­ticed that their poli­cies caused it. The pub­lic can put a pound in a chil­dren’s char­ity tin while vot­ing in gov­ern­ments that cut fund­ing for dis­abled kids.

There is a time in ev­ery so­ci­ety where we have to make an ac­tive choice for some­thing bet­ter – to chal­lenge politi­cians who dare to bal­ance bud­gets on the backs of the poor and dis­abled. It is not a fes­tive cliché to sug­gest Bri­tain needs to re­find its com­pas­sion and fund a wel­fare state with care at its heart. Oth­er­wise, no one is safe. Not even dis­abled chil­dren.

Pho­to­graph: Alamy

‘The very group in so­ci­ety that most needs to be nur­tured and cared for is be­ing dis­carded and harmed.’

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