Emma* was lucky enough to buy her own home in Bristol back in 2015. But this is when things started going wrong.

“Out of nowhere, I got a spinal injury and needed to use a wheelchair,” she tells the Cable. “I had literally just bought the house.” She has a genetic condition called Ehlers Danlos Syndrome: “It’s progressive, so I knew at some point I’d end up using a wheelchair, but I thought it would happen much later in life.”

When she gradually became unable to use her bathroom upstairs, she applied for the Disabled Facilities Grant – government money to make her home accessible. And so began what Emma describes as a deeply distressing process that lasted years and left her to sleep, wash and use the toilet in her living room until the adaptations were made. And today, six years on, she says the matter still isn’t fully resolved.

Emma is one of thousands of Disabled people across the UK who have had to suffer while waiting long periods for their homes to be made accessible. People up and down the country are waiting months just to be assessed and years for the building work to be completed, an investigation by the Bureau of Investigative Journalism has found.

“I felt really powerless. The process needs to be more transparent, and the people who are having the work done need to have more of a voice”

The Disabled Facilities Grant (DFG) is funded by central government but administered by local councils. Up to £30,000 is available in England for adaptations to make someone’s home accessible, and then councils can add extra funding if they want to. A Disabled person contacts the council, who sends an occupational therapist (OT) to assess the person’s needs. The council must approve the proposed adaptations before a formal application is made and the building work can begin.

In Bristol, it has taken an average of five months to get the assessment and complete the application, and nine months for the work to be completed since 2018, according to data released under freedom of information laws. But these times don’t include waiting for an OT assessment, because unlike many councils, Bristol City Council did not provide this data. Anecdotal evidence suggests this is often a cause of delays, amid a shortage of OTs.

The most recent data for 2021/22 shows even longer waiting times – nearly six months for the application process, and a total of more than 10 months for work to be completed.

People in Bristol have told the Cable about the stress of navigating this bureaucratic nightmare while waiting years for the process to be completed. Local disability rights groups said there was a desperate lack of accessible housing in the city, not enough information about how the scheme worked, and waiting times for OT assessments so long that people have given up on getting the changes they need to live properly.

The council said the long waits were down to a backlog caused by increased demand, a shortage of qualified OTs and the pandemic, but that more staff had been hired and the assessment centre is being reopened to speed up the process.

‘Bureaucracy and lack of humanity’

“I’m thankful that the money is there, it’s so needed, but it was just a mess,” Emma tells the Cable. “The whole process was really distressing and at the end of it, I needed to get counselling because it was so stressful and difficult. And the work is not even finished.

“My quality of life is a lot better now, I have a wet room, I’m really thankful for it, but it’s how many years now and it’s still not fixed, it’s still not right. I still find it really upsetting when I think about what happened and the way I was treated.”

Emma now has a bathroom downstairs which means she no longer has to wash in her living room. But two years after the building stopped, she is still raising issues that need addressing but getting no response from the council. She claims that in case of a fire in her home, she wouldn’t be able to get out the backdoor in her wheelchair, because that work wasn’t completed. She also says the £60,000 didn’t need to be spent and could have been used more wisely.

Early on in the process, she had to wait more than a year between her OT assessment and her funding application being completed, in part because the council lost her file, she says. Once the building work finally began, she says she ended up temporarily homeless because builders knocked through a wall in her kitchen two weeks earlier than planned. “I came home one day and my whole house was full of dust,” she says. “I was homeless and had to call my social worker for emergency accommodation. It was a real nightmare.

“I don’t want to sound ungrateful because I couldn’t have afforded the work, but it’s still really frustrating to end up with something that has issues now and the council won’t resolve them or reply to my emails.”

Emma isn’t the only person who has told the Cable about the impact of this process on their mental and physical wellbeing. Anna* has a severe chronic illness and is a full-time wheelchair user. She first applied for a DFG in January 2020 before moving house a month later, but delays to the process meant she couldn’t use her wheelchair indoors, and was left mostly bedbound and unable to fully care for herself and her daughter. When she first moved in, she spent weeks crawling up the stairs until she couldn’t manage it anymore and bought a stairlift herself.

The pandemic striking in March 2020 was an obvious cause of some of the delays, but Anna says the bigger factor was a shortage of OTs. She had to wait 10 months for an OT assessment, 15 months for the application to be processed, and the work is still being completed, more than two years after she started the process. Only after making complaints and chasing delayed payments is she nearly at the end of the road.

“I have chronic illness and my health is much worse than when I first started,” she says. “I’ve spent the last six months pretty much in my bed because people have been working here. I’ve lost lots of muscle mass. There’s an impact on mental health as well.

“I feel like I’m someone who is pretty organised, but I’m still having these difficulties. Someone else hasn’t got a hope in hell. If you can’t articulate your needs, you’re not going to get the assessment you need. It’s so flawed at every stage. It only works if you can advocate for yourself.”

She received £60,000 in total. “It’s a huge amount of money and I’m really thankful,” she says. “But the bureaucracy and lack of humanity made it an awful experience that has had an impact on me and my child.

“It has been an at times devastating experience for my mental and physical health. I don’t use that word lightly. It’s not just an emotional reaction. It impacted me physically.

“This has been my experience for nearly two years. I know I’m not alone in that, which is kind of heartbreaking, I know there’s other people struggling to access their bathroom and toilet.”

Laura Welti, who is the manager of Bristol Disability Equality Forum, had to wait three years to get her DFG work completed, although this was 15 years ago now. “What I know from people, who were raising issues pre lockdown, it was not unusual to wait six months to even get your application looked at,” she says.

“The other problem that I know people are facing is that the max amount for the DFG has not kept up with the cost of doing the work. When I got the DFG in around 2007, it was £30k, which is the same amount as now. There’s a big requirement for the government to change that sum.” (Councils can add up to £30k on top of the government grant)

She says that maintenance costs are also overlooked by the grant. After her five-year warranty ran out, her step lift broke down. She couldn’t afford to fix it so had it replaced by a ramp. “It was a complete and utter waste of money and materials.”

Council cuts and delayed improvements

Welti says councils can only do so much without extra support from the government.”The loss of income for local authorities means they have fewer OTs. As well as being financially strapped, they just don’t have the capacity they used to have.”

She has concerns for the post-pandemic future: “There is a worry that Long Covid could become like Chronic Fatigue Syndrome (CFS). So there might be a sudden influx of people who need adaptations. Disabled people are people who have been most affected by Covid.”

A spokesperson for Bristol Reclaim Independent Living said: “The desperate lack of accessible housing in Bristol means some people don’t have the same basic choices as non-Disabled people about where they live.

“There are Disabled people waiting years for OT assessments for adaptations.”

They added there was very little local accessible information about DFGs, what adaptations are possible and how the process works, and that the council should do more to directly involve people with lived experience in designing and improving access to services.

“There are people struggling in inaccessible and unsafe homes in Bristol. This has a very real impact on people’s physical and mental health,” they added.

“We know people who have given up waiting for adaptations.”

The government has committed additional funding of £570 million to the DFG in 2022/23 and 2023/24, but there have been calls for more action to be taken.

Fazilet Hadi, head of policy at Disability Rights UK said the Bureau’s findings painted a “dismal and unacceptable picture of a failing housing adaptation service”. She said previous commitments to improve the effectiveness of the DFG process were not translating into action quickly enough.

“Central and local government need to work with Disabled people to develop a streamlined process that is fit for purpose,” she said. “There needs to be clear accountability and performance monitoring, so that the new investment delivers an improved housing adaptations service, which puts the needs of Disabled people first.

“The current delays in the system are having a devastating impact on the lives of Disabled people and their families. Most people take bathing, cooking and other everyday activities for granted, yet we are making Disabled people wait months and years for basic changes to our homes, which would enable us to live independently and safely.”

A council spokesperson said “Delays in processing Disabled Facilities Grant applications are being experienced in many local authorities across the country. This is due to a backlog created by growing demand for assistance coinciding with a reduced workforce, a shortage of qualified occupational therapists and the capacity impacts of contractors furloughing their workforce during the pandemic.

“In addition, the WE Care assessment centre has been closed since March 2021 and home visits were challenging as many residents seeking assistance during the pandemic were shielding.

“We understand the frustration that increased waiting times is causing and we are taking all the necessary steps to reduce delays and improve services for residents. We have recruited additional staff to help clear the backlog, with two new occupational therapists and two surveyors joining the team. A new framework contract with additional contractors to install adaptations is starting this month. 

“The WE Care assessment centre will be reopening mid-April and we are providing more detailed information to residents in our published process guide that highlights the services offered by Bristol City Council. These actions will help further reduce delays in processing DFG applications.”

For people like Emma, the system can’t change soon enough. “I felt really powerless,” she says. “The process needs to be more transparent, and the people who are having the work done need to have more of a voice.”