Benjamin James: Fighting to adapt your home to meet your needs | Policy blog

Benjamin James, 28, is a Habinteg Insight Group campaigner, patient advocate and peer researcher supporting the Duchenne Muscular Dystrophy community. He is a wheelchair user, and below, he shares his experience of navigating the Disabled Facilities Grants process to fund adaptations to his home.

Moving home is challenging for anyone. This is especially true when you live with a progressive condition like Duchenne Muscular Dystrophy (DMD) and need to find a home that can be adapted to meet your needs.

My family and I moved into our home around 15 years ago, and, shortly after, we applied for a Disabled Facilities Grant (DFG) to fund adaptations including widened doorways, ramps, a wet room, and powered doors.

The delays had real consequences. I was away at university when some essential adaptations were not yet in place, making my home inaccessible. We had to involve our local MP to get things moving, including applying for a top-up grant, which caused further delays. Even then, not all funds from the top-up grant were used to complete the work to provide access, via a ramp to our garden, another oversight in the DFG process.

The choice of builders and how the work was carried out also felt restrictive. Attempts to get independent quotes from the builders were met with silence or a lack of understanding. Ultimately, we used a council-appointed builder. Although our home is now adapted, the process could have been much smoother with greater consideration given to future needs. This would have saved a great deal of time, money, and unnecessary stress. Too often, it also felt as though having a home that is both functional and attractive wasn’t something we were entitled to, when in reality everyone deserves a home that supports their needs and feels like a place to truly live.

Meeting changing needs

Even today, the shortage of accessible and adaptable homes means many disabled people cannot move to meet their changing needs.

Our experience shows that DFGs are essential, but they are only part of the solution. The government’s current consultation on DFG funding allocation is a start, but it only addresses distribution, not the broader challenges people face when accessing adaptations. A more comprehensive review is needed, one that involves DFG recipients and their families and designs a system that is fair, simpler, and responsive to both current and future needs.

Accessible housing is not a luxury, it’s a right. For people like me, having a home that meets evolving needs is crucial for independence, dignity, and quality of life. In the 15 years I’ve been in my home, little has changed, and the lack of accessible housing continues to place unnecessary stress and mental burden on families and local authorities. Without grants like the DFG, many of us would be unable to live safely at home.

Over the next decade, we need to ensure that all new homes are built to the M4(2) accessible and adaptable standard as a baseline, with a proportion of homes meeting M4(3) wheelchair user standards. Adaptations should consider progressive conditions, not just immediate requirements. This will reduce delays, save public money, and give disabled people a genuine chance to live independently in a home that works for them.

Accessible homes are not just functional — they are essential. It’s time for policy and practice to reflect that.