Trapped: the growing number of disabled people unable to leave their homes

In Brighton and Hove, Robert Carver’s wheelchair sits empty at the bottom of a flight of stairs. Carver is a tetraplegic as a result of a degenerative neurological disease – he is unable to move any of his limbs other than his lower left arm – but for the last five years, he has been living in a second-floor council attic flat with no lift access. It means that not only does he have no way to get his wheelchair into his home but, in order to get himself in and out of the flat, he has to be physically pulled up two flights of narrow stairs by his personal assistant. “I’m dragged around like a piece of meat,” says Carver, 33.

It can take him almost two hours to get out of the flat for hospital appointments and the process is also dangerous. Carver’s disability means he has not got the strength in his back to hold himself up – in his words, he “just flops” – which means, as his assistant tries to pull him carefully, Carver often falls down the stairs. “I’ve smashed my shoulder, knee, face. Every part of my body. I’ve sprained my wrist, had gashes on my head,” he says. “I can’t feel my legs, so I can’t feel what damage I’ve done there.”

For several years, he has campaigned to be re-housed by his local council. Brighton and Hove council says it has explored three alternatives with Carver: it has offered two wheelchair-accessible properties that Carver turned down (Carver states his medical team instructed him to do so because of the poor condition of both properties) and a third – a bungalow with steps – that Carver bid on himself, but the council withdrew on inspection because it wasn’t suitable for adaptation. Carver worries that because he has turned down its offers, the council will no longer help him with his housing needs. Refusing accommodation that the local authority thinks is suitable could mean that the council no longer has to help.“I’ve jumped through every hoop you can imagine to get them to understand,” he says.

Carver is already struggling at home because he only receives 64 hours a week care from Brighton & Hove council. Carver says this is despite his occupational therapist, GP and neuro-psychiatrist consultant stating that he needs 24/7 care.As a result, Carver is often alone for 14 hours overnight with no way to have a drink, change his continence pads, or even get into bed – but with no way to get his wheelchair up the stairs, he can neither get around the flat nor leave it. “I’m trapped,” he says.

Carver’s experience represents a crisis of housing for disabled people in this country. Research published last year by the London School of Economics for the Papworth Trust and Habinteg Housing Association found that 1.8 million disabled people in England are struggling to find accessible housing. And the latest accessibility statistics from the English Housing Survey show less than one in 10 homes in Englandare fully accessible, including for wheelchair users.

“Many families with disabled children and young adults are living in completely unsuitable and dangerous housing – and the situation is only getting worse,” says William Davis, chief executive of disability charity Ataxia-Telangiectasia. “One of our mothers in south London fell down a flight of concrete steps from her flat, carrying her son’s wheelchair. Another family in the Midlands had to wait so long for their council to agree to adapt their home for their disabled daughter that she died while waiting.”

The charity says the shortage of adapted housing stock has reached the point that virtually none is ever available. This lack of accessible homes is due both to a lack of suitable housing being built and difficulties obtaining funding from cash-strapped councils for adaptations to make existing homes suitable for disabled people. Local authorities are responsible for providing disabled facilities grants (DFGs) to help disabled people meet the cost of adapting a property, up to a maximum of £30,000. Charities say those grants are becoming much harder to get.

As a result, Ed Holloway, executive director of services and support at the MS Society, says that although people can apply for grants from local authorities to adapt their homes, he is seeing “more people apply for MS Society grants because their council won’t cover all, or part of, the costs”.

Kay Atkins, family support manager at A-T Society, says that it’s a situation that’s getting “worse and worse”. “Since councils are building less social housing themselves, they’re increasingly outsourcing housing management to housing associations, but this often results in neither the council nor housing association accepting responsibility for adapting the properties,” she says. “We constantly get sent from one to the other – like ping-pong. Then, if adaptations ever are agreed, they always cost more than the £30,000 upper limit so there’s a funding problem to go through.”

When Lisa and John Noscoe’s home in Widnes, Cheshire became inaccessible for their sons Jake and Max, who both have Ataxia-Telangiectasia – a life-limiting, progressive condition that causes mobility and immune problems – they were stuck: they could not afford to upgrade to a bungalow and their existing house was unsuitable to adapt. “Halton borough council said the only way to get help was to sell [and apply for social housing],” says Lisa, 37. But with no suitable social housing available, after they sold the house in 2015 they found themselves with little alternative but to rent a property that was not adapted for disabled people and with no downstairs toilet that meant nine-year-old Jake had to use a commode.

So last year, they accepted a standard three-bedroom house from the council – in the same close as Lisa’s mum – on the understanding that adaptations would be put in place. But six months later, they are still without either an internal lift or outside ramps.

Five-year-old Max gets upstairs on all fours but Jake – now 11 and reliant on a wheelchair – has to be carried upstairs by his dad. When John, 43, is not there, Jake has to try and get down the stairs on his bottom. “He’s too heavy for me to carry,” says Lisa. “There’s only a foot difference between us.” Jake is due to get an NHS power wheelchair soon and Lisa worries that if the ramps are not built in time, “the wheelchair will turn up and Jake won’t be able to get it in the door”.

Back in Brighton and Hove, Carver has been told that an NHS programme that would help him keep some movement in his torso will not accept him while he lives in his current flat because – with his body taking the strain of being dragged upstairs – there would be little point. “I haven’t got chance to fight my condition because I’m spending all my time fighting ‘them’,” he says. “[I’m] literally a prisoner.”

A spokesman for Brighton & Hove city council says: “Despite the many allegations to the contrary, we are doing all we can to find Mr Carver accommodation appropriate to his needs … There is an acute shortage of affordable housing in the city, with demand far outstripping supply. Properties suitable for wheelchair users rarely become available. We have over 100 other people on our waiting list in a similar situation to Mr Carver. It will always take longer for people to find suitable accommodation when they decline particular buildings or areas of the city.” We are currently building a range of new housing that is easily accessible and adaptable to meet residents’ changing needs, with over 10% being designed especially for households with a wheelchair user. However, numbers remain limited and the majority of our older stock is unsuitable for adaptation due to location and/or original build specification. We understand that Mr Carver is in contact with the ombudsman with regard to his particular case, and we look forward to the outcome of any investigation.”

On Carver’s care package, he says: “The latest assessment of Mr Carver’s care needs was completed in January and took into account all the latest written medical evidence. We understand this is now with the Local Government Ombudsman.”

A spokeswoman for Halton borough council says: “This is a complex case. The council has been working with the social landlord, Halton Housing Trust, to urgently resolve it, and the matter will be settled shortly.”