Extra care housing is a good idea. In practice however it looks to be failing all but the wealthy. This ‘post’ describes the idea behind extra care housing schemes and the challenges they face. It concludes with an incredibly insightful account by an extra care housing resident.
Extra care housing is a term applied to specialised housing for older people. Although such housing schemes can take various forms, their key features are: that residents live in their own self-contained flats (historically a mix of rented and leasehold properties); that these are designed to be accessible; that there is support available, including an emergency alarm, a warden and generally a care and support team; and there are communal facilities such as a restaurant, activity rooms, a laundry etc.
Research demonstrates that extra care housing offers significant cost benefits for individuals and the state (particularly in terms of savings to NHS and to social services budgets). It appears however that local authority commissioning arrangements are having an adverse impact on the viability of many schemes, as are reductions in grant funding from central government. The problem being that instead of co-funding a care and support team capable of responding to needs flexibly – authorities are only funding specific time restricted interventions for eligible residents – often via care assistants on low hourly wages / zero hours contracts.
The wealthy can, of course, have access to a dedicated good quality care and support service. As the account below makes clear, a crucial ‘quality’ factor is the availability of care and support when the person needs it: people may have good and bad days, may want to go to bed later in the summer than the winter, may not always be able to predict to the nearest 15 minutes when they will need to go the toilet and so on. For the system to work, therefore, there must be flexibility with carers ‘on call’ at all times and inevitably this means that there will be slack time when the carers are not actively caring – but available should an unforeseen need arise. Such a model is person centred, delivers quality care and (as the above research strongly indicates) provides significant cost saving for the NHS and local authorities. There will, however be an additional cost for the actual extra care housing scheme – in the funding of the ‘slack time’. If it is a commercial business (and most are) then the cost will have to be paid by the ‘self-funding’ home owners and/or the council responsible for those with eligible needs. With austerity economics, as noted above, most councils are only prepared to fund the bare minimum of support and only in pre-specified time limited interventions. The consequence is indignity, distress and pain for people reliant on social services funding and increased expenditure by the state when their health deteriorates and they require more expensive care in terms of acute hospital care, nursing and residential care.
The business model that operates in practice is one that can best be described as a ‘just in time’ system: a model that works well for some car assembly lines. Nothing is paid for until it is needed, nothing is kept in reserve and nothing pauses – ‘just in time’ clockwork for the utterly predictable. People are not objects: their needs are unpredictable and varied, and as the account below makes clear, disabled people’s needs for care and support fluctuate and yet when they arise, the need is often ‘immediate’.
Extra care housing ~ a resident’s perspective
The thing that attracted me to the extra care flat was its specification, its view and its location. It was not cheap (it is shared ownership). Once I started to buy my share I was surprised how expensive the additional admin fees were (over and above the purchase price).
The development is run as a business and with a timetable: it is very ‘organisation conscious’ – but this has never been a good thing for social care. I was surprised how commercial extra care housing is and how much everything costs: if you want a light bulb put in and don’t have a friend to do it – you have to pay the maintenance person £15 to put it in. You first have to put in a request, you then have to wait until they have time and they won’t do it until you have paid in advance – which creates a slightly unpleasant atmosphere.
The interesting thing about personal care is that I like the idea of having the carer on the premises – but the thing I was most astonished by was how the front line carers were so friendly and human and it was the managers that are much tougher. The carers are subject to a mish-mash of contracts. Some have zero hours contracts and some have basic contracts. The pay is, I think, very low and the younger ones are on the minimum wage. This has meant that there has been a fair turnover as the demand varies in the building, as some people get better / need less care and this makes the carers angry as the work dries up – as they need the money. There is also a problem about not getting paid at the right time (sometimes a week or so late). Sometimes the management will call carers at 6am and expect them to be in by 6.30am – and because they are hard up they will do it. They get angry when they work from 6am – 9am and then suddenly there is no work and they then have to sit around until 12 before they next have work (and pay).
I have five short care visits timetabled for specified times from early in the morning to my bedtime. When I moved to the flat I had to state a bedtime and I was only able to have a specified time as all the other slots were taken. I used to moan about this and get an extension if I was lucky – and then in the hot summer I didn’t want to go to bed at that time but I was told it was ‘take it or leave it’. I managed to get it moved to a time that was too late but it was the only choice and preferable to [the too early time. However, as it was the last bedtime slot it meant that I had often to wait an additional 30 or 45 minutes as the carers would often be running late and getting / behind by that time.
On the night shift, there are just two carers working – and they have to do some ironing as well. If there is an emergency then someone may have to wait for an hour – before they can pull someone off their routine.
So if I need to go to the toilet at a time other than your specified time – there is nothing that can be done unless I am lucky and the supervisor will try and help – but often they won’t try. They will say ‘it is not an emergency if you soil yourself (you don’t die)’ – this happens quite a lot. One night the water bottle I was using for drinks leaked and I was wet all over. I rang and they said that is not an emergency. Later on I called again and argued but they said it was not an emergency.
You are always taking things up with the carers who can’t do anything about this – as it is the supervisors and you never get to see them. If you want to make changes to the care arrangements they always seem to go completely awry. This is because they have not got enough people –and so have to take someone from one job to fit in: there is no leeway – in fact they often don’t have enough time to do their work. There are certain supervisors who will never help while others will try.
I have been in situation of agony wanting to get to the toilet and the supervisor has refused (saying all the cares ae at a training event) and I have had to wait 2 hours – and then my carer comes at the usual time and says why didn’t you call – we were only sitting around. There is very poor communication between staff supervisors and residents and no one ever knows what is happening until about five minutes before it does. When you get to my age and you need to open your bowels you cannot sit around and wait – say it is 3pm and the next call due at 6pm. One afternoon I had this need I rang and they said ‘no’ and I pleaded as I was also waiting for the doctor. Eventually after an hour and a half the doctor came and I was in a complete state and although I was ringing – time and time again – and they refused. The doctor called out loudly when I was on the phone saying she could not manage and miraculously two care assistants came almost immediately. The doctor was appalled but I don’t think she did anything about it. This also happens when I go to hospital – as you don’t get assistance there so I have to wait until I come back to go to the toilet. But if I have missed my call time (because I was at hospital) then I have to wait until my next booked slot – and I just can’t wait but they refuse to help. On one occasion I was in this position and was left in a wheelchair wet for a long time. Although a friend who saw this complained – and also complained to the Quality Commission I think, and I have never heard anything back about this.
One of the things that really troubles me is that they never listen. It is very easy when you are dealing with lots of old people with different abilities to dismiss them and to think that they don’t understand and ignore what they have said. They are in such a hurry and if you have a condition such as mine – then you can’t speak or do anything quickly – they simply don’t have the time. They will tell you sometimes when they answer a bit sharper – ‘don’t waste time talking as we have got to get on with this’. They will come in and immediately want you to do things – because they have such little time ‘chop chop chop’ – to brush your teeth, put in your eye drops and sit on the bed pan all at the same time and they will stand over you and say ‘have you finished … have you finished’. It make you so stressed and you end up in an argument with them and then they defend themselves saying we can’t help it we have got to go to other people and there are other people than you and Tom, Dick and Harry down the corridor will be very upset if we don’t come soon. I say I am not responsible for them and I then get told that I am.
If people came late – you don’t get your full amount of time – but they have no choice as they can’t be in the same place at the same time. My care has to finish here at the same time as they have to help someone three blocks away – so they have to shave of 5 mins here and there.
I don’t think people understand neurological conditions – but they don’t realise how it affects the things they are trying to do – so when they say ‘hurry up … hurry up’ I can’t cope.
I don’t like it when they talk over your head ‘has she had a bath’ …’is she wanting a shower’.
What I’d like them to understand is the use of language and talking over you – the issue of treating you as 80 and not 8 – and people that think they know more about your condition than you.
One of the things about language is the things they write in the book such as ‘she refused to have a bath / shower’ – but I didn’t – I simply said I don’t think I need one today –that is really different.
Some of the problems with extra care housing is that they are short of money and don’t want to pay the staff, so they skimp on employing enough staff and the pressure on the staff gets transferred onto the residents. Residents have been disappointed by quite a few things and therefore the management gets under pressure. They have fallen out with the residents over the facilities – the poor restaurant food as there is no proper kitchen. Part of the reason for living here was the idea that if I didn’t want to cook one day I could get a meal at the restaurant but this is no longer an option due to the lack of adequate quality / lack of imagination. They did a survey of the food quality and we had no information about the results for months and then when it fed back nothing was done. The lack of an adequate community bar / restaurant means there is not a social space – which is a particular problem for people who live on their own.