While people are pleased to leave hospital or rehab, after a traumatic injury, they may return to a home that is no longer accessible in different ways. This, combined with the extreme tiredness people often experience at this stage, could make life difficult for people and their families.
Catherine said that her husband was euphoric when he came home, but he became depressed for...
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Age at interview: 57
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Initially he had he the euphoria of coming home and being at home, discharged, and the children were really pleased to see him as well. But it didn’t take very long for him to get depressed and he was also having angry outbursts, particularly at the children, like if they left a toy in the way of his wheelchair or something, it would be something minor and he’d just go over the top in telling them off. He was on a lot of drugs. So he wasn’t really totally compos mentis he was sleeping a lot of the day. My daughter has come out with a couple of things that have been said. She doesn’t say very much, but one of the things she said was, “When the surgeons cut my Dad’s leg off, they also took away all his happiness.” That was how she felt. Actually now cannot actually remember him before the accident, just like me taking out photographs and showing what he was like and things like that.
With the help of family, and specialist services, like occupational therapy, some people’s homes were adapted ready for them to return to after hospital. This was not the case for everyone and sometimes people were not able to return to their homes. For example, some people had lived in second floor flats that were no longer accessible once they became wheelchair users. Other people stayed with extended family until their homes had been adapted. This can be done with help from professionals, including occupational therapists and physiotherapists, who can make recommendations for the things people may need. People often found this help invaluable, but some had negative experiences, such as wrong measurements being taken for wheelchairs.
Adaptations people discussed included widening doorways to make room for wheelchairs, and installing handrails and stair-lifts to help people get around in their homes. Sometimes kitchens were made wider and more accessible, ground floors were levelled and bathrooms converted into wet-rooms. People used bath-boards and stools to get into the bath or shower. However, it was not always possible to adapt the entire property. Bill reflected on how he had been happy in his home “but it was different when you then had to put wheelchairs and disability into that environment.”
Nick funded adaptations to make his three-storey house accessible, which included installing a...
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Age at interview: 49
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What modifications did you have to make to it?
Well we live in a town house, so it’s a ground floor, first floor and second floor. So we managed to have a lift installed, which allowed me to use and ground and first floors, not the top floor. So I can’t get to my children’s bedrooms, which are at the top of the house. But I have, I have a hospital bed, but it’s in the same bedroom as my wife, so I’m in the same bedroom as my wife.
So, in addition to the lift, we’ve had all the floors in the house levelled at least on the ground and the first floors, so that I can wheel myself around. We’ve had the bathroom converted into a wet room so I can, I can transfer into a shower chair and then wheel myself into the bathroom to have a shower and then wheel myself out again. And we’ve had the basins modified so that I can wheel up to them and get my legs underneath the basin and, to wash my face and brush my teeth, and shave and that kind of thing. And we’ve had, or I’ve mentioned that we had a slope up to the pavement or we’ve managed to have the path raised so that the gradient is lowered so that I can get out more easily. We’ve had some decking put in the back garden so that I can wheel out of the kitchen straight out into the garden. And we’ve had the garage converted into a gym. So I’ve mentioned the exercise machine. So we’ve got somewhere I can go for exercise.
Then how did you finance all the changes?
Well I was in a fortunate enough position to be able to finance that myself, but there are charities who will help. I think there’s an issue with timing though because they all require you to submit applications which then get referred to an approval body. And so I think you have to know what you want, and have the time to be able to submit your application. And then obviously for a major works you need to get the builders in, so that can all take a very long time. And for a lot of people that means, as I say, going to some kind of interim institution between hospital and home and I really didn’t want to do that, because, as I said, I’d been in hospital for 15 months and I think everybody felt that it was important that I went home, and didn’t spend any more time in institutions.
Adapting the home can take a long time. People had to be assessed to find out what they needed, funding for the changes had to be found and the work itself also took time. Some people were able to pay for the modifications themselves, but others got help from local authorities. There were delays in adapting homes because organisations disagreed over who should pay. Some people had to change the way they lived in their homes while waiting for adaptations. Downstairs living rooms became bedrooms and people had to wash in their kitchens. This was thought to be unhygienic and inappropriate for other members of their families to have to live with.
John slept in the living room for nearly two years and used a commode to go to the toilet until...
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And so before when you were down here [in the living room] and you didn’t have the stair lift how did you manage with things like washing and going to the toilet?
Oh it was a pain. I used to wash at the sink in the kitchen. I used to go to the toilet. I’d have to put my splints on to go to the toilet. I couldn’t get upstairs. I used to have to put my splints on to go to the toilet, but before that they had, before that they gave me a commode, just a cheap commode really – not like nothing you’d get in the hospital because it was just what they send you home with if you like – which was really not hygienic. Because if I’d got to go to the toilet, I have to go in the kitchen because of my daughter and I complained about it. I said, “Because it’s a food prep area. And you’re making me go to toilet in my kitchen.” I said, “How unhygienic is that?” I said, “You have it. You do it.” So they got the toilet done for me.
They put handrails [in the toilet]. And I can go in there with my splints and the Zimmer frame, turn round and back up to the toilet with the hand rails, holding the sink and hand rail. And I’ve got a frame round the toilet that helps me to sit down and I’ve got an extension on the toilet pan, so as I don’t go too far down and I can’t get up.
There is financial help available for adapting homes through the Disabled Facilities Grant (see ‘Resources
’ section), which is means tested.
The Disabled Facilities Grant finances modifications to people’s homes. It can be a long process...
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Age at interview: 42
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So if you were to make modifications you would have to pay for them yourself?
I personally would because I have my own money; I work and so on. You can get access to Disabled Facilities Grant, which is a means tested. Roughly, they may have changed the recent guidelines, but about £30,000 and you can get roughly on a grant. As I said its means tested, so obviously your needs have to dictate. But yeah, they’ll put in things like wet rooms and you know basic kitchen access and access to and from the building. So it’s a good grant scheme and it’s there to help people out that don’t have the money necessarily to pay for it. And it means you don’t have to move, because if you acquire a disability and you’ve had a family home for ten, twenty, thirty years, you don’t want to move, it’s a great way of staying where you are, rather than having to uproot, move out and start all over again.
Retrospective renovation often is dearer than say building from scratch so it does involve a lot of money. And the DFG [Disabled Facilities Grant] is a good way of staying where you are, but I believe it can be a fairly slow process to make happen. So it’s often something you have to get on to fairly quickly to start doing, when you’re already just dealing with disability itself, may be you’re in hospital. So it’s quite a lot to think about at first. But yes, again it’s all money. Being disabled’s expensive. And any money you can get that minimises it will make your life a lot easier. So there are stuff in place. And if you can’t get help from the State then go to the charities, use the charities that are involved in the spinal world and utilise those. They’re there to help to. Different charities do different things. And if you don’t have the means then you’d go and find where is available to make life easier. It’s all about knocking the edges off when you’ve got a disability, just making things a bit easier. You can’t change your circumstance, but you can adjust and work around it.
Making the area outside their properties accessible was also important. Simon said he rented a flat that was accessible by lifts and ramps, and had a covered car park that was “safe, dry and secure”. Other people added ramps and decking outside.
Some people did not need to modify their homes after injury and others deliberately chose not to. Their homes were already sufficiently accessible, they found new places to live that needed no modifications or they just did not want to adapt their homes. Improvisation was recommended to find out, through a process of “trial and error”, what was needed to make homes accessible (Dave). Jack said it was not possible for occupational therapists to anticipate every possible scenario so “you have to figure it out on your own” while minimising risk. People’s ability to get around their homes changed over time as they got used to living with their injuries. There were also other family members to consider in thinking about the level of adaptation or change.
Simon rents a flat that isn’t what he regards as an accessible property, but prefers to make his...
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Age at interview: 42
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I currently live in a flat in London that isn’t what I would class as accessible flat. It’s a private rented flat. I’ve made it as accessible as I can. Use all the bottom cupboards in the kitchen. I’ve got six bath boards over my bath, which turns it into an accessible shower. Because it’s not an accessible wet room or anything like. So I just had to improvise there. Standard pressure relieving mattress on me bed, so I’ve got a Tempura mattress on my bed. Kitchen, the cupboards underneath aren’t ripped out underneath like they would be or should be, but again it’s a rented flat so I can’t do that. Ramp out to balcony, fourth floor so there’s a lift. Always have a mobile phone attached to me in case something goes wrong. Car park’s covered. Safe, dry, secure. So, but they’re all things that I can cope with now, being seventeen years injured rather than one year post-injury and having a greater need for things to be accessible. So I’ve learnt to improvise through lots of travelling, and being caught out and knowing what I can get away with, and what I can’t get away with. So my flat isn’t what I would call accessible, but I’ve made it accessible. So I do okay. I’m all right in that respect. But better to have an accessible kitchen, accessible bathroom; makes your life a lot easier. You know, removing all, you know, making everything step free. Step free access so that you can get around in a chair wherever. If you can have an adapted place it’s far easier, but everyone’s housing needs are different, but you know, I live in London so it has unique impact on housing. I don’t want to mention how much my rent is. It’s quite scary. But I live in Greenwich and I live in a really nice area so I’m quite lucky. But I work, so you get what you earn and spend it quite quickly. So I’m, I’m lucky, but the more you can make your house adapted that’s not to say that you turn your house into a hospital so that everything looks white and clinical and you know, looks kind of accessible.
You can make yourself quite accessible, you know, subtly, you know, so that someone wouldn’t even know that your house is adapted. That’s not to say that I’m ashamed of being disabled; it’s just that I want the aesthetic to look subtle and nice. So at the moment my flat is absolutely fine. But I’ll be in it another year or two and then I’ll probably decide to buy.
Right and when you buy you make your home accessible in whatever way you choose?
Yes. When I put roots down, it will be money I spend that I won’t want to have move for five or ten years after it, because the cost of adaptations can be expensive. You don’t want to spend all that money and then move two years later, because it’s like money that you won’t necessarily get back in the market value of property
Jack does not feel disabled so he does not want his house to look like a 'disabled-friendly house...
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When you were discharged you came home here to your family home, did somebody have to sort of help you out with things?
Occupational therapist – so she came once; wasn't a particularly good experience. She got some measurements wrong for my wheelchair. That I would say is pretty bad. That was a pretty bad experience actually because we got home – and we live in a house that had no adaptations whatsoever for somebody with an above knee amputation. So we literally had to improvise. So it was stuff like buying a step-ladder to help me on the way up to the bed. Because the wheelchair didn't fit upstairs, using an office chair upstairs to get from bed to toilet to bathroom, etc. I couldn't have a shower for the first month because we had to order a bath board so I could sit on the bath, which I still use to this day. Stuff like that. There's a lot of improvisation. So I would say, don't rely on your occupational therapist or anyone. Don't rely on anyone to help you just, a bit of thought. As long as you feel safe; obviously you've got to think about safety. That was the biggest issue doing everything, getting everything done safely and minimising the risk of further injury. So long as you're making the correct risk assessments as to whatever you're doing in your house, just improvise.
And did you have to put any rails in or anything?
No, there is nothing in our house except a bath board. Everything else is as it was.
Is that significant for you? Is that important for you that there wasn't anything permanently put in?
Yeah definitely I didn't want to live in a house that was for a disabled person because I'm not disabled. I don't have that feeling and I still don't want that. Like we're going to get our shower and stuff done and I've made it quite clear to everyone, like Mum and Dad and everyone that I don't want something that resembles like a disabled friendly bathroom. I want it to look as normal as possible. So it'll have a shower cubicle and then like a classy seat that's kind of built into the wall as opposed to a fold out chair with a rail kind of thing. I don't want that. As long as for me personally, as long as I can have the option to sit down when I'm showering I'm fine. I don't want a blatantly obviously disabled friendly house. I just don’t want it yeah. You want it to be your home. For me it's more like a, it's a pride thing. Just because I have that whole ‘I'm not disabled mentality or grey area’, I think, I don't want that in the house either or any home that I move out of into, I don't want any of that. I'll just get a bungalow – no stairs then, that's what I'll do.
Before they could afford to buy properties, people often rented and were unable to make all the modifications they wanted in the way they liked. Homeowners worried that any adaptations they made would potentially reduce the market value of the property. On the other hand, one benefit to adaptations and modifications was a reduction in Council Tax.
Last reviewed October 2015.