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When Joy lost control over her left wrist after fracturing it in 2019, she knew she would lose her independence if she couldn’t get a home adaptation done.

With the whole right side of Joy’s body already being paralysed due to hemiplegia, the loss of the use of her left wrist meant she could no longer carry out personal care tasks without adapted facilities or help from a carer.

Joy had previously paid from her own pocket to have her shower made accessible, so it was using her non-adapted toilet that now presented the main challenge.

Eager to avoid having carers support her with her toileting over the long term, Joy contacted the council in the summer of 2019 to request an urgent assessment for an adapted loo.

While Joy waited, every day that passed was a day in which she was denied privacy when undertaking the most personal of self-care tasks.

Joy expected some delays because of the Covid-19 pandemic, but she could never have dreamed that four years would pass before her new toilet would finally be installed.

“The overall process has been very traumatic for me. Since I asked for the toilet to be put in, it’s been around four years and the work they have done is just temporary. There’s a piece missing and I can’t flush it. Until they come back it’s not done properly,” said Joy.

“Having been through the wait for an OT (occupational therapist) assessment, been assessed by an OT, having had the grant approved and the building specifications done, it should have been a walk in the park, but Camden Council stopped it,” she added.

Every day that passed was a day in which she was denied privacy when undertaking the most personal of self-care tasks.

As the leaseholder of an ex-council property, Joy needed permission from her landlord, Camden Council, for the works to be carried out. It took years for the Town Hall to give the green light.

Joy is not the only Disabled person to have faced significant delays and frustrations with housing adaptations.

Only 9% of homes in England are built with basic accessibility features, such as a downstairs toilets and level access, meaning the demand for home adaptations is great.

But according to the Bureau of Investigative Journalism many disabled people have to wait months just to be assessed for an adaptation to their home, and years to get the work done.

These waits can result in terrible hardship — lack of cooking or showering — or even people being unable to live in their own home until it can be made accessible.

Only 9% of homes in England are built with basic accessibility features

Disabled leaseholders, home-owners and private renters can apply via their councils for a means-tested Disabled Facilities Grant (DFG) to fund adaptations to their houses or flats.

In June 2016 Foundations, the national body for DFGs and Home Improvement Agencies,  claimed DFGs had helped more than 40,000 disabled people a year to live in more accessible housing since the grant was started in 1989.

Applications for DFG-funded housing adaptations involve five stages. After people have requested an adaptation and had an OT assess their needs and make a referral to the housing department, they must then submit a DFG application to the council.

Statutory rules state councils then have a further six months to approve grant applications (or reject them) and an additional 12 months to complete the building works.

The whole DFG process- from contacting your council to completing the building work –  can take a long time and some councils are performing far worse than others.

The Bureau of Investigative Journalism has shared information with CDA about the lengths of time disabled people who have applied for DFGs are having to wait to get home adaptations done.

At the time their information was published, in England those waiting longest for the whole process to be completed were in Southend-on-Sea – where the time taken from first contact with the council to completion of the adaptation was an average of more than two years.

The next was Maidstone at an average completion time of 22 months. Hertsmere had an average completion time of 21 months, Southwark and Dover had a completion time of 20 months.

Camden failed in three out of four recent years to complete working within 80 working day – the time limit recommended by Foundations.

Camden was unable to provide the Bureau information about three out of five stages of the DFG applications process, so it is not possible to say how long the whole process takes here.

But the Council’s reply to the Bureau reveals it failed in three out of four recent years to meet Foundations’ recommended time-limit of 80 working days to complete building works once a local authority has formally approved a grant.

Carrying out the home adaptations took Camden an average of 125 working days in 2018/19, 145 days in 2019/20, 84 days in 2020/21 and 65 in 21/22.

However, Camden comfortably met the more generous statutory time-limit for completing this leg of the process, which is 12 months.

The council also revealed how long it takes to support someone to complete a DFG application (stage 3) once it has received a referral for a case from an Occupational Therapist.

Applicants in Camden had to wait an average of 100 working days for the grant application completion stage in 2018/19, 137 days in 2019/2020; 77 days in 2020/2021 and 49 days in 2021/22.

Darren Wilsher, the council’s Private Sector Housing Service Manager, spoke to CDA about the length of time it takes for DFG-funded building works to be completed in the borough.

He said: “The date we use for completed works is when we receive the final paperwork to pay the grant and not necessarily the date the works were completed which can often be several weeks after works have been completed – however we are looking into ways we can capture the actual completion date moving forward.”

Wilsher added: “It’s also worth noting that most applications for adaption works are for tenants living in Housing Associations who use their own contractors. We have little control over the time taken for them to carry out works, however we are working with Housing Associations to improve this process.”

In the case of Joy, more than three years passed before her application was approved, in October 2022, and a further nine months went by before her adaptation was completed.

But not everyone in Camden has had such a negative experience with DFG applications.

Anna Alston, who uses a wheelchair and lives in a housing association property, told CDA she was pleased overall with the process.

“Whilst my usual carer was on holiday, new carers came in and insisted that I needed a ceiling hoist installed because I only had a standing hoist and they were concerned about damaging their backs,” said Anna.

In Anna’s case it took eight weeks for her application to be completed and then approved once her OT had made a referral to the council and a further eight weeks before the works were undertaken – by a man, she says, who worked from 7am to 8pm non-stop.

Anna said: “Overall, the process was good for me but not good for the company who installed the ceiling hoist as they didn’t get paid on time.”

She added: “Also, I had another issue with Camden council a year later when the hoist needed to be serviced. It appeared that Camden hadn’t put in the guarantee resulting in the company seeking money from me for the yearly service. I then had to contact Camden council who eventually sorted it out.”

Disabled people living in council accommodation usually go through a different process when requesting funding for home adaptations, with council landlords being expected to use the local authority Housing Revenue Account (HRA) to pay for their tenants’ adaptations.

“Overall, the process was good for me,” Anna Alston – talking about her DFG-funded adaptation.

CDA doesn’t have information on the experiences of Camden-based Disabled council tenants who need home adaptations but we spoke to one Islington council tenant, Emma*, who told us she was unsatisfied with the changes made to her home for her daughter.

At the age of seven, Emma’s daughter, Brenda*, lost her mobility and became reliant on a wheelchair due to the sudden onset of a condition called dystonia. Emma soon applied for adaptations to be made to their two-story home because their toilet and bathroom were upstairs, meaning Brenda had to be continually carried up and down their stairs.

However, the council’s OT determined that only non-fixed facilities should be put in place because of the possibility that Brenda would recover from her condition at some point in the future.

Emma told CDA: “So we were given a commode (portable toilet), which had to sit in the living room, a bath aid, which was a board that sat at the front of the bath to help her get in and out, and they provided a portable fold up wheelchair ramp for outside the house. These were the only adaptations that were given to us.”

She added: “The whole process was disheartening and disappointing. My daughter had to suffer the indignity of having to go to the toilet in our living room. This was humiliating and hard for us as a family. Life could have been made so much easier for her with her disability if a downstairs toilet had been provided.”

The availability of accessible housing is a major equality issue. Besides being more able to make use of their own homes and domestic facilities, Disabled people living in adapted homes are four times more likely to be in employment than disabled people without accessible flats or houses.

*These names have been changed.