Bri­tain’s hid­den scan­dal: the dis­abled peo­ple trapped in their own homes

The Guardian Australia - - Opinion - Frances Ryan

When Louise re­gained con­scious­ness on the bath­room floor last month, she woke up wedged be­tween her wheelchair and the toi­let. The blood on the tiles told her she’d had another seizure. “I could see the red,” she ex­plains. The size of the room – so small she’s not able to shut the door against the toi­let when her wheelchair is in it – meant she’d hit her head on the fall down.

Louise’s or­deal on that bath­room floor lasted a cou­ple of hours but it’s a snapshot of how she’s been liv­ing for months. The 33-year-old has mul­ti­ple health is­sues – a heart con­di­tion, re­nal prob­lems and epilepsy – but for the last four months has been housed in a dan­ger­ously in­ac­ces­si­ble coun­cil bun­ga­low in Mil­ton Keynes.

On top of its tiny size, the bath­room has no grab bars – the ba­sic adap­ta­tion that would let a dis­abled per­son move safely. To get back into her wheelchair in or­der to reach her phone to call for help, Louise had to yank her­self up from the floor by her arms, de­spite be­ing con­cussed.

But things get worse still. When the am­bu­lance came, Louise’s worry wasn’t the blood from her head but how she’d even be able to get to the hospi­tal: there is no way for Louise and her wheelchair to get in and out of her home. Go to the front or back door of the bun­ga­low and you’re greeted by a large step – a steep drop – and no ramp in sight. To get Louise to the hospi­tal to have her head in­jury checked, the paramedics had to put her on a stretcher and carry her over the step.

This is Bri­tain’s in­ac­ces­si­ble hous­ing scan­dal: dis­abled peo­ple in­jured in their own homes and house­bound. Louise puts it bru­tally: “It’s like [be­ing] a trapped an­i­mal.”

Theresa May’s pledge to build af­ford­able hous­ing last week was quickly dis­missed as an empty prom­ise. But the deficit in Bri­tain’s ac­ces­si­ble homes for dis­abled peo­ple was, as ever, not even worth a men­tion. There are now 1.8 mil­lion dis­abled peo­ple in Eng­land strug­gling to find ac­ces­si­ble hous­ing, ac­cord­ing to re­search by the Lon­don School of Eco­nom­ics, with dis­abil­ity groups re­port­ing par­ents fall­ing down con­crete stairs as they strug­gle to move their dis­abled chil­dren, or wheelchair users stuck in top-floor flats.

Un­til this sum­mer, Louise had been get­ting by liv­ing in her mum’s house, but when her health got worse, the makeshift ac­cess be­came im­pos­si­ble: for years, the only way for Louise to get down the stairs from her bed­room was by bump­ing on her bot­tom, one step at a time. The bun­ga­low was meant to be a tem­po­rary so­lu­tion. It had a hoist set up – vi­tal to help Louise move – as well as a hospi­tal bed fit­ted with an emer­gency alarm. But there was no adapted bath­room – that’s no wet room, no space for a wheelchair or bars – or even a way for Louise to get in and out of the front door.

Mil­ton Keynes coun­cil says that it was the hospi­tal oc­cu­pa­tional ther­apy team that car­ried out the ini­tial in­spec­tion be­fore as­sign­ing the prop­erty to Louise and that at that stage, it didn’t high­light any ac­cess is­sues. But one con­ver­sa­tion with Louise sit­ting in her wheelchair makes it clear that this place may as well be an as­sault course.

The kitchen is tiny, big enough to get a wheelchair in but not to turn around or move. The bath­room is taken up by a bath – use­less given Louise’s ac­cess­bil­ity and seizures (“My con­sul­tant says if I have a seizure [in the bath], I could drown”). With­out a wet room, Louise’s only way to keep clean is to do a strip wash twice a day: a sponge, soap and bowl. To wash her hair, she sits in her wheelchair and hangs her neck over the bath as her mum – cur­rently do­ing “ev­ery­thing” for Louise – stretches the show­er­head to reach her.

That’s the added strain: Louise has no so­cial care in place to help her wash, dress or cook meals. She can­celled the orig­i­nal car­ers sent by the coun­cil – she tells me that male car­ers would of­ten turn up to help her dress, or she would be given a bed pan rather than help in the bath­room – and is ap­ply­ing for di­rect pay­ments: the sys­tem that is meant to give dis­abled peo­ple the right to choose their own care. But she’s been told this could take months to come through. (The coun­cil says the di­rect pay­ments process is still be­ing fol­lowed but if and when it’s agreed, it should take two to three weeks to set up.)

Liv­ing like this is the def­i­ni­tion of be­ing stuck. Since mov­ing into the bun­ga­low in June, Louise has only been out­side five times: each a visit to a doc­tor, phys­i­cally car­ried out by am­bu­lance staff. The ordinary parts of life – a friend wheel­ing her round the shops to look at hand­bags, or go­ing for a cof­fee with her mum – have been taken from her. “I have to stay in. Per­ma­nently,” she says.

When I ask the coun­cil if there’s any­where else to place Louise, they say they have no other wheelchairac­ces­si­ble ac­com­mo­da­tion avail­able and are “un­able to pre­dict when some­thing will be avail­able”. They’re not alone. The na­tion’s gut­ted so­cial hous­ing stock is rou­tinely leav­ing coun­cils with no ac­ces­si­ble hous­ing for dis­abled ten­ants, with wheelchair users up and down the coun­try stuck in un­safe ac­com­mo­da­tion or holed up for months in a ho­tel room.

In des­per­a­tion the other night, Louise found her­self brows­ing Right­move – a fu­tile search for an af­ford­able and ac­ces­si­ble pri­vate rental. Be­fore ill­ness struck, Louise was earn­ing a de­cent wage at John Lewis but now her only in­come is her dis­abil­ity ben­e­fits: noth­ing close to what she’d need for mar­ket rent. “They’re about £900 a month round here,” she says. “I’d have about a ten­ner a month to live on.”

A week af­ter I first speak to Louise the coun­cil says adap­ta­tions, in­clud­ing a per­ma­nent ramp to the front door and a wet room, have now been ap­proved and that all ef­forts are be­ing made. But they can­not say ei­ther when the work will start or how long it will take. Louise has been told by a sur­veyor that the ramp is a “mas­sive job”: a zigzag ramp go­ing back and forth over the steep slope.

In the mean­time, the clos­est Louise can get to the out­side world is see­ing it through glass. “I can go by the win­dow and get in some sun,” she tells me.

She has been un­well over the week­end – the stress makes her heart con­di­tion worse – but hasn’t been to the doc­tor be­cause she phys­i­cally can’t get out. Louise ad­mits she’s thought about writ­ing to the prime min­is­ter in the hope some­one will lis­ten to her. “That’s how bad it is,” she says. “I’m in hell.”

• Frances Ryan writes the Guardian’s Hard­work­ing Bri­tain se­ries

‘Louise has been told by a sur­veyor that the ramp is a ‘mas­sive job’: a zigzag ramp go­ing back and forth over the steep slope.’ Pho­to­graph: Alamy Stock Photo

Liv­ing with dis­abil­i­ties un­der aus­ter­ity: 'You're treated worse than a farm an­i­mal' - video

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