Extra care housing: ‘just in time’ systems are for cars not care

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.[1]

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[2]). 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.[3] 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.[4]

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:[5] 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.

[1] See generally J Payne & J Mills Extra Care Housing: Technical Brief (Housing Learning & Improvement Network 2014).
[2] C Holland et al Collaborative Research between Aston Research Centre for Healthy Ageing and the ExtraCare Charitable Trust (Aston University 2015) and A Netten et al Improving housing with care choices for older people (PSSRU Kent 2011).
[3] Current funding (2018 – 2021) amounts to £125 m – see Homes England The Care and Support Specialised Housing Fund (CASSH) (2018).
[4] For an excellent ‘must read’ paper written from the perspective of care workers see for example, L.J.B. Hayes ‘Work-time Technology and Unpaid Labour in Paid Care Work: A Socio-legal Analysis of Employment Contracts and Electronic Monitoring’ (chapter 9) in Sian Beynon-Jones & Emily Grabham (eds) Law and Time (Routledge 2018) pp. 179-195.
[5] Lee Humber uses this analogy when critically analysing the use of remotely operated ‘motion detector’ systems for monitoring adults in need – see Lee Humber ‘Neoliberalism and the crisis in health and social care’ International Socialism: A quarterly Review of Socialist theory Issue: 155, 29 June 2017 at http://isj.org.uk/neoliberalism-and-the-crisis-in-health-and-social-care/#footnote-10080-65-backlink accessed 18 May 2019.

Post-19 education transport costs

In a recent and important report,[1] the ombudsman has held that the transport needs of an adult in education are relevant considerations when assessing his (and his carer’s) social care needs. Citing the Statutory Guidance to the Care Act 2014 (para 16.22) he noted that local authorities should consider the importance of full-time programmes for young people aged 16 and over to ‘allow parents to remain in employment full time’.

The ombudsman also held that the council’s transport policy for adults was unlawful. The report is impressive in setting out with considerable clarity the relevant education and social care law, namely:

  1. Section 508F of the Education Act 1996 requires local authorities to make transport arrangements they consider “necessary” (or that the Secretary of State directs) to facilitate the attendance of relevant young adults at institutions where the local authority has secured the provision of education for the adult concerned. Relevant young adult means an adult who is under 25 years old for whom an EHC plan is maintained.[2]
  2. When a council finds it is “necessary” to provide transport for the young adult under section 508F, then the transport must be free of charge.[3]
  3. If a local authority does not consider it “necessary” to provide transport under section 508F it may still choose to pay some or all of the reasonable travel costs under section 508F(8) or as social care provision under the Care Act.

As the report makes clear, from the outset, the Council made it difficult for the parent to apply for transport funding for her adult son. All manner of devices to were deployed to deflect the claim – for example: by not providing an application form; by stating that her request for help was not a ‘formal application for funding’; by not admitting to any appeals process; by misstating what the law required; and by asking her for details of her income (which was irrelevant as her son was an adult).

The council’s policy was that ‘save for exceptional circumstances’ it would not provide post-19 transport funding – and that it was the parent’s responsibility to arrange transport for her son.   As the ombudsman’s report noted (at para 104):

The law says that if the Council considers it is necessary for an adult who is over 19 to have transport provision then this must be provided. It does not say that it will only do so if there are exceptional or special circumstances, which is what the Council’s policy currently says. The language the Council uses in its policy gives the impression a person’s circumstances must be such that he/she not only ‘needs’ assistance, but their circumstances are exceptional, which indicates they must be different to other people who have similar needs. That is not what the law says. This is fault.

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[1] Complaint no 17 017 296 against Birmingham City Council, 3 April 2019.
[2] The Children and Families Act 2014, section 82.
[3] Education Act 1996 section 508F(4).

Charging for social care changes

The Welsh Government has made uprating changes to the social care charging rules – which have now taken effect. The head-line changes are increases to:

  • the maximum non-residential care charge to £90 per week;
  • the residential care capital limit to £50,000; and
  • to the residential care personal expense allowance to £29.50 per week.
The Part 4 and 5 Code of Practice (Charging and Financial Assessment) has also been updated (to reflect the amended regulations). For further details click here.

 

Photograph of ‘Caenarfon Castle’ by Richard Jones -@lluniaurich
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Legal Aid closure

At the end of 2018 the BBC reported on the decimation of legal aid – with Wales a prime example.  TA Law of Swansea has now announced its withdrawal from legal aid.  It appears there may now only be two firms authorised to provide community care legal aid in the whole of Wales.

Measuring the Mountain

A Welsh Government funded research report into ‘What Really Matters in Social Care to Individuals in Wales’ can be accessed by clicking here. It contains some interesting material and a pie diagram (page 58) that suggests that the impact of the 2014 has not been ‘transformative’.

NHS Continuing Healthcare (CHC) and transitions into adulthood

Young people who are receiving NHS Continuing Care (and their families) are inevitably anxious to know what their care and support arrangements will be once they become 18.  Not infrequently there will be concern about losing a suitable placement because of uncertainty about eligibility for adult NHS CHC funding.  In some cases it appears that families are told that nothing can be agreed until the young person becomes 18.  This is wrong.

The 2018 Adult Framework (paras 331-349) and the [truly dreadful] 2016 Children and Young People’s Framework (paras 116-117) contain clear guidance as to what should happen with transitions of this kind.

Para 341 of the 2018 Adult Framework states (for example) that as soon as practicable after the 17th birthday, eligibility for adult NHS CHC should be determined in principle by the relevant CCG, so that, wherever applicable, effective packages of care can be commissioned in time for the individual’s 18th birthday.

The 2016 Children and Young People’s Framework provides guidance on the process by which the healthcare services young people are receiving, continue as the move into adulthood.[1]  It advises that future entitlement to adult NHS CHC ‘should be clarified as early as possible in the transition planning process, especially if the young person’s needs are likely to remain at a similar level until adulthood’ and this should be done ‘at a suitable point when aged 16-17’ (para 116).  At para 117 it then provides a three stage process that should be followed:

  • At 14 years of age, the young person should be brought to the attention of the CCG as likely to need an assessment for NHS Continuing Healthcare.
  • At 16 -17 years of age, screening for NHS Continuing Healthcare should be undertaken using the adult screening tool, and an agreement in principle that the young person has a primary health need, and is therefore likely to need NHS Continuing Healthcare .
  • At 18 years of age, full transition to adult NHS Continuing Healthcare or to universal and specialist health services should have been made, except in instances where this is not appropriate.

Importantly it advises that when the young person is 16 eligibility for NHS CHC should be determined in principle ‘so that, wherever applicable, effective packages of care can be commissioned in time’ for their 18th birthday (or later, if it is agreed that it is more appropriate for responsibility to be transferred then)’ (para 120).

Although the NHS Clinical Commissioning Group (CCG) responsible for ensuring these transitional arrangements occur will generally be the one for which the young person’s GP is a member, 2012 NHS regulations[2] stipulate that this will not be the case if the young person is in accommodation commissioned by another CCG (alone or jointly with a local authority).

It follows that in every case the CCG should determine – well before the 18th birthday – whether the young person is, in principle, eligible so that effective packages of care can be commissioned in time for the 18th birthday. If a social services authority is contributing to the package of care, then there is a duty on it to undertake a transitional assessment – and the process is explained in the ‘Disabled Children: A Legal Handbook[3] at para 10.22.

Social care legislation provides for a relatively sophisticated transitional planning scheme (eg Care Act 2014 ss 58 – 59 and Children Act 1989 s17ZH).  Although this level of detail is lacking for the NHS – as a matter of ‘public law’ CCGs must have internal arrangements (and inter-authority arrangements) that ensure that the young person continues to have appropriate care when they become 18 and that they and their family do not have to endure uncertainty / anxiety in the years leading up to the 18th birthday.  If there is uncertainty as to whether the person will be eligible for NHS CHC funding when 18, then the CCG and social services should agree on what would be an appropriate package – even if they are unable to agree who should fund it.  The law requires in such cases that one of them then ‘grasps the nettle’ and secures the support, before (if necessary) entering into protracted negotiations with the other on liability for the care costs.[4]  If there is delay or a failure to act, then a joint complaint should be made.  This can be done using the precedent letter 2 of the Cerebra Accessing Public Services Toolkit page 30.[5]

A 2013 ombudsman’s complaint[6] concerned a young man in ‘transition’.  He was due to be 18 in November 2011 but the NHS transition process only started in April 2010 when he was 16.  Given the complexity of the young man’s needs, the Ombudsman considered that this was too short a period and to amount to maladministration.

Of course in any transition there will also need to be an updated parent carer assessment – both under Children Act 1989 s17ZD and under the transitional arrangements – for which see ‘Disabled Children: A Legal Handbook[7] at para 10.38.

For an earlier ‘post’ about the general approach to be taken in relation to transitions – click here.

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[1] DDCSF & DH Guidance (2008) Transition: moving on well – A good practice guide. DCSF and DH (2007) A transition guide for all services: key information for professionals about the transition process for disabled young people and see also Department for Education Special educational needs and disability code of practice: 0 to 25 years (2014) para 8.56.
[2] The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 SI 2996 reg 5.
[3] Accessible at https://councilfordisabledchildren.org.uk/help-resources/resources/disabled-children-legal-handbook-2nd-edition.
[4] See for example complaint no 96/C/3868 against Calderdale MBC, 24 November 1998 para 30
[5] Accessible at https://www.cerebra.org.uk/help-and-information/guides-for-parents/problem-solving-toolkit/
[6] Public Services Ombudsman for Wales Report on complaint No. 201201350 against Aneurin Bevan Health Board, 30th April 2013.
[7] Accessible at https://councilfordisabledchildren.org.uk/help-resources/resources/disabled-children-legal-handbook-2nd-edition.