‘It’s hard to watch your child struggle. All you can do is chase peo­ple’

As coun­cil bud­gets are slashed, des­per­ate par­ents speak to Michael Sav­age about their ex­haust­ing bat­tle in the courts to pro­tect the for­got­ten vic­tims – their chil­dren

The Observer - - News -

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.

“Car­ing for Hope is stress­ful at the best of times,” says Ro­den, one of a group of car­ers to launch a le­gal chal­lenge heard in court last month against pro­posed cuts to spe­cial ed­u­ca­tional needs fund­ing in Hack­ney, east Lon­don. “Hope came to me when I was 57. I’m 62 this year. All this is heap­ing a lot more pressure on us. It grinds you down. There’s so much go­ing through my head that I’ve been for­get­ting sim­ple things. You spread your­self thin and some­thing has to give. But we can do it.”

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 sud- denly, or col­lapse. Thomp­son’s ap­pli­ca­tion for sup­port was re­jected four times be­fore she re­ceived help – a bat­tle that lasted 10 years.

“I couldn’t live with my­self know­ing I didn’t try one last time,” she says. “Un­for­tu­nately, many chil­dren have fallen through the net. That af­fects men­tal and phys­i­cal health. With Sade, it has af­fected her.”

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-yearold son Kian, who has autism, hy­per­mo­bil­ity, dys­praxia and at­ten­tion deficit hy­per­ac­tiv­ity dis­or­der. Af­ter years of cam­paign­ing, she is aware of the toll on her fam­ily. “All my money and inheritance went on my son’s ed­u­ca­tion – on the bat­tle,” she says. “The peo­ple who have missed out the most are my other two chil­dren. I try to make up for it now, but my el­dest son is an adult and he missed out on a lot of my time. The im­pact is mas­sive.”

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.

Hack­ney coun­cil­lor Chris Kennedy in­sists ev­ery­one is “on the same side”, but adds that the court case “doesn’t ad­dress the fun­da­men­tal is­sues that have led to coun­cils up and down the coun­try fac­ing bank­ruptcy in their ef­forts to fund one of the most im­por-

‘All my money went on my son’s ed­u­ca­tion – on the bat­tle. The im­pact on the whole fam­ily is mas­sive’

Ali­cia McColl, Sur­rey

tant ser­vices they pro­vide”. Sur­rey county coun­cil said it was fac­ing “huge fi­nan­cial pressure” and that it was wrong to de­scribe the £21m sav­ing as a cut “be­cause we haven’t made or even pro­posed cuts to ser­vices”.

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.

They point to 2014 changes de­signed to give “greater con­trol and choice” to par­ents, which raised ex­pec­ta­tions about the sup­port avail­able and in­creased the le­gal re­spon­si­bil­i­ties of coun­cils. How­ever, the new sys­tem was not matched with the nec­es­sary fund­ing. With schools also un­der pressure to keep costs down and im­prove results, some are find­ing ways of re­mov­ing SEND pupils from their rolls, or not accepting them in the first place.

That of­ten leads to even higher costs for coun­cils. Par­ents re­alised that some kind of na­tional ac­tion was needed. A le­gal case has been launched against the govern­ment, with cam­paign­ers ar­gu­ing that it is sim­ply not pro­vid­ing suf­fi­cient fund­ing. 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.

“The peo­ple who get for­got­ten are the chil­dren. For chil­dren like my son, when their needs are not met at school, it has a knock-on im­pact on them. It leads to chil­dren hav­ing break­downs – why would you al­low a child to go through that?”

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.”

For Mary Rid­dell, who has fought her coun­cil in Birm­ing­ham over the sup­port given to her nine-year-old daugh­ter Dakota, it is sim­ply about try­ing to be heard.

“We’ve had to fight every step of the way,” she says. “It is hard to watch your child struggle and all you can do is chase the peo­ple who are meant to be help­ing you – and know­ing their hands are tied.

“I’m not hold­ing out any hopes that they will in­stantly say, ‘here’s lots and lots of money’. But I would like them to take no­tice and un­der­stand what kind of ef­fect th­ese cuts are hav­ing.”

TOPMary Rid­dell and her daugh­ter Dakota, aged nine.ABOVE John Ro­den with his grand­daugh­ter, five-year-old Hope.LEFT Bene­dict McFin­ni­gan, 14, and his younger brother Brian.

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