Fighting for an accessible home
We spoke to Angela, who told us how difficult it can be to get an accessible home. She explained why the Disabled Facilities Grant (DFG) needs to be more generous and fully fund people with high needs.
It took many years before we could get an accessible home.
My husband, Terence, began using a wheelchair full-time in 2007. He’d caught a dangerous staph infection while we were working abroad, which caused severe damage to his spinal cord.
The hospital also found kidney cancer and had to remove his right kidney. Terence was immunocompromised, which meant he had a reduced ability to fight infections and other diseases - putting him at high risk if he became ill.
The long battle for an accessible home
For several years, from 2010 to 2019, we lived in extra-care housing - also known as assisted living. These are self-contained homes among a group of similar properties that are more accessible than standard homes. Some even have limited care support.
Unfortunately, the wetroom bathroom was far too small to wash properly, and Terence had to wash out of a bowl. The lounge had no space to manoeuvre his powerchair, and the bedroom could not store all the bulky care equipment.
The tipping point came in 2014 when a fatal fire broke out in the flat opposite. The fire trapped us in our first floor flat, with smoke billowing under the door.
We soon stepped up our search for a new home closer to our family.
There were no suitable accessible houses on council waiting lists at all. There are very few new houses that meet the Building Regulations for a ‘wheelchair accessible dwelling’. Even if they do, the minimum dimensions of rooms, stated in the regulations, are still too small for anyone who, like Terence, uses a large powerchair.
Our new bungalow
After the fire, we worked with Partners Foundation for the next five years to finance our move to a new home. In 2019 they secured enough funding to buy a bungalow in Spalding. We applied for a DFG to adapt the property. We moved in on 15 July 2019.
While it was all so much better than our previous flat, and we were able to learn to live with shortcomings, it’s not like our difficulties ended with getting the DFG. There were various screw-ups from the builders, for one thing. More importantly, we needed more funding to meet Terence’s needs than the DFG could give us.
The maximum DFG grant must be higher
The maximum amount for a DFG is not sufficient for someone with complex needs. The maximum grant in England is £30,000, and even with Terence’s needs, we couldn’t get the full amount.
There were not enough funds to install an automatic door opener on the front door, nor to make the garden fully accessible, nor to do anything to adapt the kitchen. The Partners Foundation had to sink in another £30,000, having already bought the house, so that Terence could have an accessible home. In this, we were lucky.
In England, the upper limit has remained stuck at £30,000 since 2008 and has not risen with inflation. It is £36,000 in Wales and £25,000 in Northern Ireland. There is a different scheme in Scotland. These upper limits must increase – in real terms – if we want proper support for disabled people.
What we needed from an accessible home
Some of the things we needed included:
- Level access throughout the bungalow (even raised door-strips caused pain for Terence).
- A bedroom big enough to accommodate a single bed for each of us. For Terence - an electric, height-adjustable bed, a ceiling-track hoist, room to move his powerchair, shower trolley etc.
- A separate bathroom for visitors and me. During coronavirus, I felt vindicated in asking for this because Terence was immunocompromised.
- A wetroom bathroom with level access shower and shower trolley.
- A space that can take a ‘tilt table’ (medical plinth that can raise to a standing position) for essential physiotherapy.
- Living space with enough room so that a wheelchair user can move without bumping into furniture.
- Extra-wide doorways, and an automatic door opener for the front door.
- Access to the garden.
In the end, it took us a very long time to find a home that could be adapted for our needs.
We did not get long enough together in our new home. Terence developed throat cancer and passed away in early June 2020.
I hope this article will help other disabled people with high needs. I hope the government and local authorities will see the need for change: we need a bigger Disabled Facilities Grant and more wheelchair accessible homes.