‘I have to shower at the gym’ – disabled people waiting for simple home changes

On a cold and wet evening, Sam Lewis walks to her local gym for a shower. It is a painful and slow journey, using a walking stick.

The 34-year-old’s rheumatoid arthritis means she risks falling when climbing into the bath in her flat. Simple changes such as grab rails or a walk-in shower would make it safer, but two councils have failed to assess her in her rented homes.

Disabled and elderly residents can be entitled to funding – whether homeowners, private renters or housing association tenants – for changes ranging from stairlifts and accessible bathrooms, to structural extensions.

Funding housing adaptations can save money long-term by reducing the need for social care and alleviating the burden on the NHS.

In England, 95% of routine adaptations should take no longer than six months – the government says – with all but the most complex jobs completed within nine months.

But the average completion time has risen 18% over the past five years, figures obtained by the BBC show.

It now stands at 357 days in areas of England, Wales and Northern Ireland where work is overseen by a single council, or in Northern Ireland’s case – the Housing Executive.

Northern Ireland has the worst delays, with average adaptations taking nearly two-and-a-half years to complete.

Scotland has a different funding model – so is not comparable in terms of data.

Sam, a private renter in London, says she has never seen a fully accessible property available during online searches.

The three flats she has rented have all had showers over baths. But when her condition is at its worst, her legs are too stiff to lift over the side.

“I feel very anxious about slipping,” says Sam, who has previously sustained injuries from falls.

If she cannot climb into the bath, but can manage the walk, Sam showers at her local gym. She says she has made the journey just to shower 150 times in four years.

“It has a really negative impact on your self-image and your time,” she says.

It is more than four years since she says she first applied for help, while in her first rental. Councils should carry out a “person-centred” assessment to identify whether individuals qualify. Landlords cannot refuse an adaptation without good reason.

Without the adaptations, Sam worries her debilitative condition will become worse, more quickly. This would make staying in work increasingly difficult.

There is a push by the government to get disabled people into employment, she says, but it feels like “no-one’s there to help” reduce the barriers.

The system is under strain, say housing adaptation experts and councils. Demand will only intensify in the coming years – they say – with the elderly population growing and an already apparent rise in complex cases involving children with special needs.

There are still cases ongoing after five years or more in at least 21 local council areas of England and Wales – the BBC has found. Some 240 of 317 authorities responded to our Freedom of Information requests.

In Staffordshire, seven-year-old Emilia has a rare genetic condition called PTEN hamartoma tumour syndrome. She has a learning disability, hypermobility, is doubly incontinent, and is more susceptible to cancers.

If she climbed the stairs alone, to reach the bathroom or her bedroom, she would fall.

Her mum Claire has damage to her spine, yet has to prop her daughter up with every step – risking paralysis if she bears too much weight.

“I’m always frightened [if my back gives way] that we’re going to end down at the bottom of the stairs,” she says.

Claire’s spinal injury means she isn’t able to help Emilia into a stairlift and so, in July 2022, the family – who are Housing Association tenants – were assessed as requiring an extension for a downstairs bedroom and shower room.

“Months and months went by when nobody [at the council] would answer the phone,” says Claire.

The maximum amount councils can provide under the Disabled Facilities Grant in England, set by government, is £30,000. This is means-tested for adults, but not for children, and is currently under review.

In Claire and Emilia’s case, the estimated cost of the extension is £60,000, which they believe caused the delays. “It’s all about money,” she says.

If councils have enough money in their home adaptations budget they can choose to provide extra funding, but not all do. Social services can provide financial assistance too.

Two-and-a-half years on, building work is set to begin soon.

Newcastle-under-Lyme Borough Council said this was a “complex case” and that it had needed to “resolve additional funding and get the necessary permissions to extend the property”.

It says it is working to reduce delays. Other councils are taking steps too.

In Gloucestershire, NHS occupational therapist Neil Withnell is working with six local authorities to speed up cases – training additional staff for assessments and providing extra funding for people on lower incomes.

Adaptations, he says, can be “life-changing”.

England’s adaption system is now being expanded, increasing by £86m to £711m, aimed at allowing 7,800 more people to access support.

But the Local Government Association, which speaks for local councils, says the extra funding “does not tackle the underlying issues”, amid rising demand, a shortage of occupational therapists to carry out assessments and wider funding pressures.

The government told the BBC that while “many councils” in England are meeting legal requirements, “delays are unacceptable”.

Disability campaigners say the government must now take action to help private tenants, like Sam.

Ten councils did not complete a single adaptation for a private renter last year, data obtained by the BBC has found. Official figures show 16% of working-age disabled people live in privately-rented homes.

One of Sam’s previous local authorities, Ealing, carried out more than 1,300 home adaptations between April 2019 and March 2023, yet only three were for private tenants.

“I’m not surprised at all” says Sam, who believes many will fear being evicted by a landlord for even asking for an adaptation.

The government says its forthcoming Renters’ Rights Bill in England will allow tenants to challenge landlords who refuse adaptations without fear of retaliatory eviction.

Ealing Council said “all Disabled Facilities Grant applications are assessed on merit and eligibility”.

Having recently moved to a new area, Sam is applying for an adaptation for a third time. The council have been in touch. “I’m feeling quietly positive,” she says.