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“Applying for housing adaptations is a minefield”

Karen has had to find her way around the system of applying for housing adaptations for her son who lives with Duchenne muscular dystrophy. She shares how in their recent move they managed to get the adaptations they needed, although it was a difficult experience. And she gives advice to other families going through the Disabled Facilities Grant (DFG) process.

A boy in a wheelchair in a new room

My family and I lived for ten years in a perfectly adapted house in Lincolnshire with my partner and his children. My son has Duchenne and was a teenager at the time, so he relied on a lot of adaptations and equipment to function. We bought a new build property before a lot of the infrastructure had been put in place, so the builders used us as a learning exercise. Everyone was really helpful and wanted to make the house perfect for my son – we even had wheelchair races in the rooms to check turning circles.

At the end of the build, we had a downstairs bedroom with a ceiling track hoist going through to the bathroom which had great bathing facilities. But when the relationship with my partner broke down a few years ago, we had to sell that property and start again. The process was very different this time round.

A ‘fully accessible’ house isn’t always what it should be

The property we moved into was advertised as fully accessible, so I just thought we’d need to put a hoist in. It wasn’t until we moved in that we discovered how inaccessible it was.

The downstairs wet room had been built with the floor gradient going the wrong way, so instead of the water running down into the drain it flooded outside the bathroom. We had to rip the whole room out and start again. As it was the only accessible bathroom in the house, we had to move out for a couple of days to a hotel that had no equipment for disabled people. It was a nightmare as we had to take so much with us including a mobile hoist and shower chair.

The house had been designed so a lift could be installed in the hallway allowing a wheelchair user to get upstairs. But when the engineers came to install it, the dimensions in the floor plan were wrong which meant we had to have the lift in the living room as the hallway was too small.

The wait to apply for a Disabled Facilities Grant

The biggest issue with the housing adaptations process is that you can’t apply for a Disabled Facilities Grant until you’re already living in the property. With the long waiting list and the Covid pandemic, it took around 18 months before any building work started.

” My son had to sleep in the living room, being transferred with a manual hoist for a year- and-a-half.”

It was amazing for him when he could finally see his bedroom after 18 months and have some privacy, but it shouldn’t have taken so long.

I also had a battle about the equipment we needed installed. Local authorities say that any equipment you’ve had for more than five years can’t be moved to a new house. They wanted to charge me almost £15,000 to replace everything, which I couldn’t afford. I managed to find a few clauses in the legislation around the DFG grant and a compromise was eventually agreed. They paid for the hoists, and I was allowed to take my son’s bidet toilet and specialist platform bath to the new house.

We ran into a problem with the house being in a listed/conservation area. My son needed to be able to access the house via an automatic front door entry system, so he could enter and leave the house independently. However, it was stated in the contract that front doors had to be the same across all houses in the street. I wasn’t able to win this battle, which means my son has no way of getting out of the house on his own in an emergency. There’s almost always someone in the house with him, but it’s still not ideal and doesn’t encourage his independence.

My advice for housing adaptations

The most important thing when applying for housing adaptation grants is to get supporting letters and ongoing involvement from healthcare professionals who understand your child’s/your needs. We’re very fortunate to have a great team of physiotherapists and occupational therapists who continued to support my son when we transitioned to adult services. They were essential in moving the adaptations process forward with the local authorities and ensuring my son got the equipment he needs.

“Waiting lists for adaptations are long in many areas and local authorities are underfunded, so knowing your rights and what you’re entitled to is essential. Knowledge is definitely power in this case.”

Read up about the DFG process in your area and find out the details of the property you’re thinking of purchasing. We learnt the hard way that ‘accessible property’ is a subjective term.

You can find information about housing and adaptations here. Alternatively, contact our helpline team on 0800 652 6352 or

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