When I first meet Kay Garner, she has been living for months out of a hospital, when she should be at home. The 27-year-old had a spinal injury in September 2017 that left her paralysed. After 12 weeks recovering in a spinal unit in Salisbury, she was due to be discharged in January, but because of a lack of accessible homes for disabled people, she has become a “bedblocker”: well enough to leave hospital, but with nowhere suitable to go. The private rented two-storey terraced house she shared with her boyfriend, Ryan Waters, before the accident is unusable with her new wheelchair – “I can’t even get inside,” she says – and her council can’t find social housing that is accessible to her.

The hospital has become Garner’s makeshift home. The nurses are kind, but she can only see friends and family during visiting hours; no one is allowed in past 8pm. “That’s not normal life,” she says. Meanwhile, since the couple have ended their rental agreement in the hope of getting an accessible property together, Waters is being housed by the council in Premier Inns, shipped from one to the next, from week to week. Garner has lived with him for four years and says not spending nights together is “horrible … You realise that all you are to the council, is a number, a statistic and your mental wellbeing means nothing to the people higher up.”

It needed intervention from her local MP to place her on the priority housing list (the council told her that because she gave up her rented house, she was technically “voluntarily homeless”). But once on the list, she discovered the few adapted bungalows available have an age requirement of 55-plus. “They even said if a 55-year-old able-bodied person were to bid, they would have priority over me. It felt like discrimination,” she says. Over five months, Garner and her partner won four bungalows by bidding, but “all got taken off me as I was too young”.

Garner had to be moved to a community hospital in Helston, Cornwall because the spinal unit needed her bed. With no suitable property on the council’s books, she was told she would have to take the drastic step of going into a residential home for the elderly. “It was a nice building – but not for a 27-year-old,” she says. “I’m so upset about this decision as I could be stuck there for months, even years.”

A few weeks later, Garner, who has been supported by the Spinal Injuries Association, emails me with news of a reprieve.

The council has found her a bungalow, but it will need multiple adaptations: a front and rear ramp, widened doorways and a wet room. She is relieved, but clearly affected by the stress. “It’s scary, constantly living in fear of the next move – care homes, change of hospitals – all because I didn’t have somewhere to move to.”

Ezra Stripe at home after moving from an inaccessible private rental property in Manchester. Photograph: Christopher Thomond/The Guardian

The housing predicament faced by millennials in Britain is well documented, but Garner’s experience points to a hidden facet of the crisis: if you are a disabled millennial, the task isn’t to find affordable, secure housing, but often to find any home at all. Overall, there are 1.8 million disabled people struggling to find accessible housing, according to research by the London School of Economics (LSE) for the charity Papworth Trust in 2016, with young disabled people looking for their first home facing a particularly tough climate.

“Our helpline regularly receives calls from disabled people unable to find suitable accommodation, or stuck in substandard and unsuitable homes,” says Phil Talbot, head of communications at disability charity Scope. “Disabled people tell us they are struggling to find appropriate and accessible social housing. Adapted private properties are also hard to come by.”

For millennials dubbed “generation rent”, the housing crisis has in many ways been characterised by the explosion in private rentals; research by the Housing and Finance Institute shows 6 million more people are living in short-term rented housing than 15 years ago. The gulf between rising rents and squeezed wages means this is difficult for many renters, but it is particularly damaging if you have a disability. The Equality and Human Rights Commission recently warned of the “nightmare” shortage of private rental housing suitable for disabled people, with 93% of 8.5m rental properties in the UK found to be inaccessible.

Ezra Stripe, who uses a wheelchair part-time due to fibromyalgia and hypermobility syndrome, has been living in an inaccessible private rental in Manchester with wife, Josie, and their four-year-old son for the past year. There is a large step at the front entrance; Stripe’s electric wheelchair is battered from repeatedly having to ram at it to get in and out the house. It’s no better inside. Stripe can walk up the stairs by leaning on handrails, but there is only one and if Josie isn’t there for support, Stripe is in danger of falling. There is often no way to get to the only bathroom upstairs, or their bedroom containing an adapted bed. Instead, Stripe has to sleep on the sofa, with a bottle to urinate in as a makeshift toilet.

It’s an inhumane way to live but because the house is a private rental, the family has no right to adaptations – including protection measures for when Stripe self-harms. “My wife contacted the letting agents and asked if we could fit a small lock to one of the cupboard doors so she could put all the sharps in there, but was refused.”

Stripe’s predicament illustrates the catch-22 of renting privately when disabled: the vast majority of properties need adaptations to be accessible, but because you are renting, you can’t have them. On top of this, disabled people who rely on social security to pay the rent are often turned down by private landlords: in 2017, only 18-20% of private landlords accepted tenants who pay with the local housing allowance (LHA), compared to 46% in 2010-11, something which it is feared will worsen further with the rollout of universal credit. A new report by Shelter and the National Housing Federation (NHF) reveals discrimination by letting agents against housing benefit tenants is rife, with women and disabled people especially affected (people who receive disability benefits are three times more likely to need a housing benefit top-up).

Stripe is searching for a more accessible home but says they are turned down repeatedly. “People continually refuse to acknowledge us, stop replying when they find out I’m disabled, or point-blank turn us down because of it.” In the past, this has resulted in homelessness; Stripe and the family slept on the floor of a friend’s study for six weeks before getting their current property. It was so uncomfortable that only morphine kept it “from being agonising”.

'How have we got​ to a point where it isn’t possible to find suitable housing for a disabled person?'

Two months later, Stripe gets in touch to tell me they have found a new house with a downstairs bathroom. It took an exhausting search; a row of 100 properties lined up on a spreadsheet. Still, there are problems. There have been faulty electrics and on one occasion they were affected for 36 hours, “so all our food was ruined”. Stripe’s medication needs to be kept cool in the fridge. It says something about the lack of options for disabled renters that, despite these problems, the family are relieved to even have this home. “For a private rental, we really lucked out.”

The effects of not having an accessible home can be profound. Research by Leonard Cheshire found the housing crisis is “severely limiting” disabled people’s independence; four in 10 disabled adults with mobility problems who have struggled to find accessible homes said the experience had a negative impact on their physical and mental health. It also reduces the chances of achieving life goals like a family or career – the odds of which are already stacked against young disabled people. Stripe, for example, wants to adopt another child, but can’t until they have a large enough accessible property.

For freelance consultant James Lee, 31, an inaccessible home is affecting his ability to earn a living. He uses a wheelchair due to spinal muscular atrophy and has lived in a two-bedroom housing association flat in London with his partner, Melissa and their two young children for a decade. To get into the property, there are two heavy firedoors (one of them Lee’s front door), which Lee can’t open alone. It has left him living with a military type rota: he says his family have to “fit their lives around my working schedule” so someone is home to open the door when he gets home. While other millennials develop their careers, Lee has had to stop taking new clients and is considering pulling out of existing work, “to ease the pressure on my family”.

The size of the cramped flat is putting pressure on the growing family. The second bedroom is used to store Lee’s shower chair, a power chair for work, and a manual backup chair, leaving all four of the family to sleep in one bedroom – a bed for Lee and his partner, and another squashed in for the toddlers. Lee has been assessed by an occupational therapist as needing a hoist to transfer from his wheelchair but there’s no space. Instead, Melissa has to lift him alone, “which is potentially damaging for her back,” he says.

Despite this, the council refuses to let him apply for three-bedroom properties as his children are of the same sex and under 10 years of age. Even if Lee was eligible, an accessible social home is like gold dust: “This is a borough that has seen a staggering surge of housing development with thousands of new homes being built, yet in this fiscal year only five category A/B accessible properties have been made available to local residents.”

Reduced social housing stock, coupled with a lack of accessible homes being built, are seeing disabled people like Lee languish on council lists. The EHRC recently found the average waiting time for an accessible home is over two years, with many housed in dangerously unsuitable homes in the meantime. One twentysomething I spoke to had been housed on a fourth-floor flat with no lift despite using a wheelchair, and had been bidding on accessible properties only to come back 50th on the list. He was stuck in his flat for a year before the council moved him this summer.

The dearth in housing options for young disabled people attracts little attention. Research into millennials’ housing problems rarely includes disabled people, while studies into the issue of inaccessible homes tend not to look at the unique issue of young disabled people starting out in life. Politicians often ignore it, largely failing to plan for accessible housing at all; the EHRC reports that many local authorities in England, Scotland and Wales haven’t collected data or planned for the future, even though it is estimated that demand for wheelchair-accessible homes alone will rise by 80% by 2023. “Something clearly needs to change,” Talbot at Scope says. “Government and local authority needs to step up and ensure affordable and appropriate housing is available to everyone.”

It’s hard not to think that cultural attitudes towards disability aren’t playing a part in this – that there’s an assumption that disabled millennials don’t want to leave their parents’ home and build an independent life like everyone else.

At 28, Chase Petterson is desperate to move out of her childhood bedroom in Hampshire. Petterson has Asperger’s syndrome, severe sensory processing disorder and Hypermobile Ehlers-Danlos syndrome (EDS). Her health is deteriorating because of the inaccessibility of her parents’ semi-detached house. Because EDS affects her joints and balance, her legs routinely give way as she tries to walk down the stairs. Sometimes, her bones dislocate or she trips and slams into the wall. “It’s terrifying,” she says. “Every single day starts with having to face a flight of stairs.” At the same time, her sensory condition makes her acutely sensitive to noise – even the sound of her neighbours through the wall can be “torture” – and her body responds by being in a constant state of fight or flight. “I never feel safe and never have enough energy for anything,” she says. “It’s all taken up trying to cope with where I live.”

Renting is unviable as she relies heavily on stability – she knows a private landlord could ask her to move out at any time and because her disabilities prevent her earning a regular income, she worries about relying on social security to pay the rent. She has recently lost one of her disability benefits and has to go to a tribunal to appeal. “The precariousness of benefit eligibility over recent years has shown just how easily you can be removed from a home,” she says.

Her only option is buying, but she is priced out: a bungalow costs around £600,000 in her neighbourhood and she can’t move to a cheaper area as she needs to be near her support networks. While millennials generally struggle to get on the housing ladder due to unaffordable deposits – the average is now £20,000, rising to £80,000 in London – it can be further out of reach for the young and disabled who are more likely to be in low-paid work, rely on benefits, or require a more expensive property.

Petterson says she cries when she thinks about her housing situation. “How have we got to a point where it isn’t possible to find suitable housing for a disabled person?” she says. “I’m facing a future of never getting better because of never having somewhere suitable to live, and I don’t get how that situation has arisen in this day and age.”

In Cornwall, Garner is settling into her new bungalow and waiting for each adaptation to be approved. In the meantime, without a wet room, she has to resort to babywipes and flannels to keep clean. To wash her hair, she sits on a chair and hangs her head over the bathroom sink. “My boyfriend stands in the bath holding the showerhead,” she says. It’s hard not to think about the struggle it has taken for her to get here and what she still has to fight for. Garner and the thousands of young disabled like her just want their own home, like anyone else.