I had been on the housing register for a year when a doctor sat me down to tell me I had cancer. My daughter May is severely disabled, which is why we were on the housing register.
Money worries have been central to living with disability and illness for my family. When my doctor told me I had cancer, the first thought I had shouldn’t have been that I would lose my home. But I knew that this kind of illness could be more than just physically devastating; it can be expensive.
I knew how costly petrol and parking at hospitals were when you had to do it every day for medical reasons (not to mention a life eating out of coffee shops). These extravagances were especially hard when I had to take a major pay cut to care for my daughter. As if this wasn’t bad enough, two years earlier, we’d moved into a more expensive flat so that we wouldn’t have to carry May up four storeys to get into our home. Even that was a first-floor flat with several sets of stairs to negotiate – not a great long-term solution. With reluctance, I had put our names down on the housing register; the only way, we were told by May’s social worker, to find accessible housing.
There has been much criticism of the housing bill, especially the extension of right to buy and the forced sell-off of social housing stock. But very little vitriol has been directed at the “pay to stay” scheme.
My husband is a teacher and earns just over the £40,000 higher-earner threshold for London. From 2017, George Osborne wants us to pay market rate for our home. While I’ve been on my three-year cancer holiday, I’ve been unable to return to work as a teacher and so I collected employment and support allowance (which, incidentally, Osborne is cutting by nearly 30%). My daughter is so cognitively and physically impaired she will never work or pay taxes. She can’t even sit, or throw an arm around our necks when we carry her up the stairs.
Because that’s what we had to do. For six years, we left her wheelchair in the boot of our car. We carried her from her car seat, along the walk, up six steps to our front door, unlocked both deadbolts while holding her, up the step into the front hallway, around the corner and up four more steps, turn and up 10 more, unlock the door to our first-floor flat, encounter one more set of internal stairs to our front room and a further set if we wanted to take her up to her bedroom.
May has epilepsy, too, so on top of everything else, she sometimes had a fit while I carried her – a dangerous situation for a child and a mother already weakened by cancer.
There is almost no housing for disabled people, so it took three years on the housing register before we were offered a home. The charity Leonard Cheshire calls it a “crisis”. Their research shows millions of people need accessible housing in the UK, but only 4% find it easily.
There are many reasons for this. Landlords are reluctant to invest in making their homes accessible. A combination of health issues and lack of income mean people like us can’t get a mortgage and adapt a house to our needs. In our case, even if we were approved for a mortgage on my husband’s salary, cancer and disability ate up the deposit we were saving.
A month ago, we moved into an accessible, new-build house on a Peabody Estate. We love it, but it isn’t perfect. The government will have to invest thousands to put in a lift and a hoist to carry May from her chair into the bath. But we get to wheel her straight in. We don’t have to carry her everywhere she goes. To say it has transformed our lives is an understatement.
A year from now our lives will be a lot less certain. If “pay to stay” comes in, our rent will go up to an estimated £2,549/month - the average market rate for a three-bed home in Herne Hill, London where we live. That is £30,588 a year, three-quarters of my husband’s pre-tax salary, and double the rent we paid when we lived just down the road.
Purchasing the home using right to buy isn’t an option either. The highest discount on offer to social housing tenants, £103,000, will barely offset the £874,000 average price of a three-bed property in Herne Hill. Of course, there’s also that little issue that banks don’t much like to give mortgages to people with cancer.
Given the lack of adapted housing across the country, disabled and ill people like us depend on social housing to provide accessible accommodation. There is no place for us to go to. There is no accessible house to move into. We waited three years for this home. It was the first we were offered, and we would have been crazy not to accept it. Furthermore, what kind of economic sense does it make for the government to spend thousands to adapt our home and then throw that investment away by forcing us out?
We will fight to stay. We will do what any parent across the country would: whatever it takes to protect our daughter. My husband is a teacher at an inner London school. Can London afford to lose another teacher? If it comes to it, we may have to make that choice. I never want to worry about dropping May down a flight of stairs again.
The government keeps repeating its refrain about wanting to incentivise people to work. It talks about sensible policies that benefit working people. It wants to help disabled people become more independent. The outcome of its policies will be quite the opposite.
