‘I’m 48, I shouldn’t be living in a care home’

On 24 February, 2018, Chris Smith woke up and couldn’t feel his legs.

It’s a day etched in his memory, one in which his whole life changed. It’s also the reason he is now living in a care home for the elderly – aged just 48.

Once in hospital, Chris had been told he had an infection in his spine. The spinal cord injury led to paralysis in his lower body and legs, and means he is now a full-time wheelchair user.

The care home he lives in should have been a stopgap until he was found a fully wheelchair-accessible property, Chris told the BBC.

Instead, he spent the last five years in a room meant for someone at the end of their life, with no idea when he’ll have a home of his own.

Chris’s care home is in Rugby, about 10 miles away from where he grew up in Coventry.

He says he lives a “completely sedative life” away from his family and friends.

“I don’t live here, I exist,” he says.

Before his injury, Chris says “there wasn’t a minute in my life that I was on my own”.

Now, he says his elderly parents have only managed to visit him a few times. He has made a couple of trips to see friends, but it costs up to £120 in an accessible taxi.

Chris doesn’t need 24-hour care, and says he could live an independent life in an accessible property. Since arriving at the care home he says he’s only been offered one property to move to – but it wasn’t wheelchair accessible.

Coventry City Council says Chris is now on their housing priority system and will be notified if he is shortlisted for a property.

The District Councils Network (DCN), which represents 169 councils across England, says disabled people are being failed by the planning system and that too little accessible housing is being built.

The DCN is calling for the government to reform planning rules to give housing authorities new powers to ensure developers build enough accessible homes.

Hannah Dalton, from the DCN, says the need for quality and accessible accommodation “urgently needs to be reviewed and addressed”. She says between 8% and 10% of homes should be accessible.

Emma Donaldson says she spent eight years on a council housing list until she finally accepted a bungalow meant for residents aged over 55.

Emma is 37, and says it was important to her that she got to move in with her partner.

She says she would often get “disheartened” when homes did become available but were unsuitable for her wheelchair, with some even having steps to the front door.

The bungalow is not classed as wheelchair-accessible, but because it has a ramp leading to the front door and a wet-room, Emma says it just about works for the couple.

For Emma and her partner Wes, the benefits reach far beyond accessibility.

“I’ve got so much more independence, and we’re stronger as a couple,” she says.

“We’ve been able to foster a dog, we’ve joined a community over the road at the pub and made friends out of it.”

Emma will need to make adaptations so that she can get around the house more easily, but says it is a long process.

Funding for adaptations is available through the Disabled Facilities Grant (DFG). Disabled people are able to claim up to £30,000 – a figure that has remained the same since 2008. Ministers have said they will review the cap.

Four years ago, the Conservative government consulted on plans to make all new housing meet greater standards of accessibility, but they were never implemented.

The plans would require all new build homes to meet the adaptable homes standard, meaning they are step-free, and offer wheelchair access into all the rooms.

Even in these properties, however, wheelchair users would need to make greater adaptations. They are more suited to housing that meets the wheelchair-accessible standard, which either have all the adaptations in place already or can be easily adapted with features like a through-floor lift.

New survey data, shared with the BBC by disability charity Contact, shows a third of families with a disabled child live in a home that does not meet the needs of the child.

The survey of 4,262 families with disabled children across the UK found that 22% felt their home was dangerous because of unsuitable stairs, while 20% cited poor wheelchair access to get in or around property.

Nathalie Cain’s daughter Penny has a rare genetic condition which means she has no sense of danger.

Penny has previously fallen down the stairs as a result of a habit of sometimes leaning forward as she walks. Nathalie says she is “terrified” it will happen again, especially as Penny grows bigger and stronger.

Nathalie says she feels “trapped in a house that is unsafe for my daughter to live in”.

She says the family would be better off in a home with level access, but they have not been able to secure a bungalow yet.

The government has committed to a plan to build 1.5m homes over the next five years, but disability rights campaigners say there is very little detail when it comes to plans for accessible homes.

The Spinal Injuries Association, along with Disability Rights UK and Aspire, are calling on government to ensure 10% of these new homes are fully wheelchair-accessible.

The government points to planning rules which say councils must consider the needs of disabled people when planning new homes.

A government spokesperson said “everyone should be able to access to a home that is suitable for them and meets their needs”. They said the government would be setting out their policies on accessible new build housing “shortly”.

But for now, the future remains uncertain for Chris.

He is hoping to get an accessible home closer to his friends and family in the new year. However this is only a temporary solution as it’s being organised for him by a charity.

He says his care home room is as comfortable as he can make it. But he still struggles with the loneliness of his “solitary life”.

Standard homes – Current national standards, in place since 2015, require new-build homes to offer wheelchair access into the property and into entrance-level rooms. But these rooms may still be too small to be usable and those on other floors may still be inaccessible

Adaptable homes – these are step-free, more spacious and may offer limited wheelchair access, but will likely require costly adaptations, such as a level access shower. Space may still be limited for genuine wheelchair access

Wheelchair accessible – these are either fully accessible (usually only social rent) or easily adaptable at the point of purchase or occupation