DWP and MoJ unlawful inaction

Legal research by the International Disability Law Clinic at the School of Law, Leeds University concludes that the Government’s policy of not installing audio recording equipment for all Personal Independence Payment (PIP) assessments and at all Social Security and Child Support Tribunal venues is unlawful.

Key messages from the report (attached) include:

  • The policy has a disparate and an adverse impact on disabled people, and lacks objective justification;
  • The Department of Work and Pensions’ (DWP) delay in honouring its commitment to put in place recording equipment at every mandatory medical assessment for a PIP, constitutes a breach of the Government’s obligations under the Equality Act 2010, the European Convention on Human Rights Article 6 and the UN Convention on the Rights of Persons with Disabilities Article 13 – as well as its public law obligations;
  • The Ministry of Justice’s (MoJ) failure to assess (or indeed to acknowledge) the harm that results from the absence of recording equipment at SSCS Tribunal hearings – constitutes a breach of the Government’s obligations under the Equality Act 2010, the European Convention on Human Rights Article 6 and the UN Convention on the Rights of Persons with Disabilities Article 13 – as well as its public law obligations;
  • These failures by the DWP and the MoJ are causing significant and predictable harm to disabled people and would appear to be actionable by way of a judicial review in the High Court;
  • The research underpinning this report includes a Freedom of Information Request to the Ministry of Justice (Appendix A below) which reveals that:
    • there are no SSCS Tribunal venues in London with recording equipment;
    • only 91 (out of 161) hearing centres in England, Wales and Scotland have recording equipment;
    • the cost of installing recording equipment is about £1,000 per venue and that the annual maintenance cost is approximately £15.00.

For a copy of the report, click here and for the disability news service coverage of the findings click here.

Disabled Facilities Grants (DFGs) and social care responsibilities

An important ombudsman report[1] has just been published that reaffirms that:

  1. social services authorities have duties under the Care Act 2014 to ensure that necessary home adaptations are provided and that this ‘responsibility cannot be passed on to another organisation’
  2. when it is appropriate for a person to apply for a Disabled Facilities Grant (DFG) then the social services authority must act speedily to facilitate this and its duty does not end ‘until the needs are met’ (para 8);
  3. the target timescales detailed in the 2013 Homes Adaptations Consortium statutory guidance[2] are a relevant benchmark for assessing whether a local authority has acted reasonably. As the ombudsman states:

15. The guidance gives target timescales for dealing with cases at each of the three stages. For Stage One, it recommends 95% of urgent cases are completed within 5 working days and 95% of non-urgent cases within 20 working days. An urgent case is defined as a situation where the disabled person cannot be discharged from hospital or cannot access essential facilities within the home. A case is defined as non-urgent if the person cannot use the home fully but can access the toilet and bathing facilities.

16. The guidance recommends the total time to complete all three stages should be no more than 55 working days for urgent cases and 150 working days for non-urgent cases.

 

The report concerns a mother who had had a stroke which meant, among other things, that she could only walk short distances indoors by supporting herself on furniture or using a crutch – and that she had some continence needs.  She lived with her three children (all under 18) in a housing association property.

As the bathroom was on the first floor and her impairments largely confined her to the ground floor, this meant she had to use a commode (which one of her children emptied twice daily) and she had to strip-wash at the kitchen sink using a perching stool.  Her children also helped prepare meals and do the housework / kitchen work, and one was responsible for bathing the youngest child.

The Adult Social Care team was asked to assess the mother’s need for support (as a disabled parent) but nothing was put in place (in terms of support for the family / young carers) for 7 months.

The initial assessment also identified an urgent need for adaptations.  The social services Occupational Therapy (OT) assessment in relation to this need was not, however, sent to the Housing Association or to the District Council (to process a DFG application) for 22 months after first contact. Having done this, the social services authority then closed her case.

In finding multiple instances of maladministration, the ombudsman noted:

  • For more than two years, Ms X has not been able to make proper use of her home. She cannot access essential bathing and toileting facilities. She has no privacy because she is sleeping on a sofa in the living room (para 63);
  • Ms X’s inability to access essential bathing and toileting facilities put her in the category of urgent need according to the definition in the non-statutory guidance (para 65);
  • Closing the file before the Council knew her assessed needs had been met, was maladministration (para 68);
  • There had been inadequate liaison / information sharing with the District Council and the Housing Association (para 69);

 

The remedy recommended by the ombudsman included an apology, a payment of £3,600 ‘to recognise the significant distress, inconvenience and loss of dignity and independence caused by its delay’; and for the local authority to draw up a protocol for effective joint working with its District Councils and registered social landlords – to ensure home adaptations for tenants are planned and delivered in a timely way.

[1] Complaint no 18 003 223 against Norfolk County Council 4 March 2019.
[2] Homes Adaptations Consortium Home adaptations for disabled people: a detailed guide to related legislation, guidance and good practice (2013).

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).

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.

NHS CHC and supine council leaders

The number of people eligible for NHS Continuing Healthcare funding (CHC) in England has fallen – again. The most recent figures[1] have just been published and show that in the last quarter there were 54,754 people assessed as eligible for support – a reduction of 1,150 over the last quarter.  Four years ago there were 63,000[2] people eligible – and since then the number has fallen by 8,246: a staggering 13%.

The situation is, in fact, even worse: since 2014 the NHS has shed 7,268 over-night beds.[3]  However, even if one ignores this loss, the impact on these reductions (on patients, families and councils) is dramatic.  If one simply focuses on social services authorities and if one assumes that they only have to fund 50% of those no longer eligible for NHS CHC[4] – it will cost each one each year on average more than £1 million.  If one includes the impact of the beds shed by the NHS, the cost is significantly more.

In 2000 the English Government accepted that it had ‘too few hospital beds per head of population compared with most other health systems’[5] and in 2013 the former Department of Health National Clinical Director for Older People’s Services said that it was fanciful to expect significant reductions in the numbers of older people in hospitals.[6] Nevertheless this is exactly what has occurred – and the figures (detailed above) are dramatic.

In the face of the unprecedented central government funding cuts that councils are experiencing, one would have expected their senior officers and members to be more than a little vocal about this highly inappropriate example of cost shunting – and yet there is not even a perceptible whimper.  What is it about local authority leaders that make them so willing to reduce care and support packages and to hike the care charges for disabled people and yet be so supine when it comes to the NHS?

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[1] See NHS England Statistical Press Notice NHS Continuing Healthcare and NHS-funded Nursing Care data Q3 2018-19
[2] NHS Digital NHS Continuing Care Activity Statistics 2014-15
[3] NHS England Bed Availability and Occupancy Data – Overnight (KH03).
[4] About 50% of care home places are funded by social services – see LaingBuisson, Care of older people. UK market report. Twenty-seventh edition, 2015.  Although more recent publically available data is unavailable it appears that there has been little change – see T Jarrett Social care: care home market – structure, issues, and cross-subsidisation (England) Briefing Paper Number 8003, (House of Commons Library 2018).
[5] Secretary of State for Health The NHS Plan 2000 Cm 4818-I (The Stationery Office 2000) – which proposed an extra NHS 7000 beds in the following four years.
[6] The phrase used by Professor David Oliver was ‘absolute la la land’ – see S Calkin Ex-older people’s tsar criticises out of hospital obsession Health Services Journal 11 March 2013.

Staying in a care home when savings spent

What can be done when a resident, who has self funded their care home runs out of money: having spent their savings on paying for their care home?

Although councils have a duty to undertake assessments of all ‘adults in need’, people with savings above £23,250 will not generally[1] get funding support from their council when they move into a care home.

Often they (or their families) will have taken great care over their choice of care home: one that ‘feels right’ – for example because it is friendly, in the right location, has a good Care Quality Commission (CQC) rating and so on.  They may then live in the home for considerable period of time and eventually their savings may get to the stage that they have dwindled to little more than £23,250.  At that stage they are entitled to approach the council for funding support.

Not infrequently they are then told that their care home is too expensive and that they will either have to move to one that is less expensive (ie one whose fees are at a level the council is prepared to pay) or that they will have to get someone to ‘top up the difference’: the difference between the current care home fees and the fees the council is prepared to pay.

This is not how a council should respond.

The law requires that the council must first assess exactly what the resident’s care and support needs are.   This assessment must be ‘person centred’ and will include, in addition to the routine care that homes provide, a consideration of whether they have any special care needs that can’t be met by ‘standard’ homes; whether there is a locational element to their need (ie to be close to family or friends- ie to prevent isolation / loneliness); whether continuity of care is important (because the resident reacts badly to change or is simply too frail to be moved safely) and so on.  Only once such an assessment has been completed can the council discuss whether a move to an alternative care home (or a ‘topping up’ arrangement) is needed.

If someone has lived in a care home for many years and is (for example) in their mid 90’s, the default position must be that they should not be moved: that their needs require them to remain where they are. In such a case (unless the council has clear evidence to rebut this presumption) the council will have to fund their existing home.  It cannot require them to move or seek a ‘topping up arrangement’.

A 2015 ombudsman’s focus report ‘Counting the cost of care: the council’s role in informing public choices about care home’ provided the following case example

When Magda moved to a care home her assets were more than the threshold limit of £23,250 and so she had to pay for her own care.

Her care home charged £800 a week. Her daughter Julia alerted the council when her capital fell below £23,250 – the level at which she might be entitled to council funding

However, the council said Magda was still a self-funder as her weekly income of £550 a week was enough to cover the cost of a placement at an affordable rate of £525 a week, but this did not take account of the fact the care home was charging Magda £800 a week. Julia asked whether her mother could be moved to another care home.

Magda’s medical consultant advised against moving her, but it was another four months before the council assessed her needs and accepted she could not be moved and agreed to pay the additional costs of the placement (minus Magda’s contribution) and backdated this for four months to when Julia first told the council of her change in circumstances.

We agreed with the council’s remedy and asked the council to apologise to Julia and pay her £200 to acknowledge the trouble to which it had put her.

The problem described in this note may occur for a variety of reasons. A 2018 ombudsman’s report[2] concerned a resident who ceased to be eligible for NHS Continuing Healthcare funding (where the NHS had paid for a home at a rate higher that the council was prepared to pay).  A 2014 ombudsman’s report[3] concerned a decision by a council to reduce the amount it was prepared to fund for care home placements – as a result a resident (funded by the council) was asked to pay a ‘top up’ to remain in her care home.

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[1] There are exceptions – if for example they are unable to arrange the care home contract themselves (or with the help of a willing third party) or if they take up a deferred payment arrangement – an entitlement not considered in this note but for a note on such an arrangement click here.
[2] Complaint no 17 005 594 against Knowsley MBC, 2 February 2018.
[3] Complaint no 12 019 862 against Tameside MBC, 24 September 2014.

Can you cope?

It’s a simple question – yes or no?

If you are a parent of a disabled child – it is a question, when asked by a social worker, that you may dread.  If you say ‘yes’ you are at significant risk of having your support cut.  If you say ‘no’ your child is clearly at risk.  Instead of addressing this by providing extra support – it appears that some families are being threatened (explicitly or tangentially) with the ‘safeguarding’ process.

Writing over 20 years ago the late, great and delightful Ken Simons noted how many families were fearful of complaining or asking for more help because of implicit threats of this kind (in his research – the withdrawal of services if a request for additional help was made).  In his view it did not ‘take many incidents of this sort to undermine the confidence of families, particularly when they are coupled with what appears to be a worrying lack of commitment on the part of social services’.  He then cited an interviewee: “They will not commit themselves in any shape or form until there is a crisis”.[1]

In my work, I am coming across more and more families with disabled children who are experiencing implicit threats of this kind.  It appears, however, that for some their predicament is even worse.

BBC Radio Gloucester has aired two programmes[2] which recount how families who have asked their council for more help (and/or made a complaint about social services failings) have then been accused of fabricating the extent of their child’s illness / impairment (FII[3]).  The families, are being supported by the local Parent and Carer Alliance C.I.C.

The BBC has had expert advice to say that it would be expected that a county the size of Gloucestershire would have one case of FII every 2 years[4] – but the programme has heard from over 12 families who claim to have been accused of this (after requesting help / complaining).

A recent ‘post’ by the 2 tired and a toddler blog[5] included details of a survey it had undertaken (and which received 113 respondents).  The blog accepts the methodological limitations of the survey but its findings are troubling.  Overall, 33% of those responding surveyed had been threatened with child protection proceedings and 30% were threatened with the removal of their children (ten councils are named in the survey).  The blog considers that a ‘significant point’ was that in 30% of the cases the local authority action followed a request by the family for help, and of these:

  • 25% were threatened with child protection proceedings;
  • 32% were threatened with removal of children;
  • 41% were directly accused of FII;
  • 66% were indirectly accused of FII (concerns raised for seeking 2nd opinion seeking diagnosis or knowing medical terminology for example).

The blog notes (a point echoed in the testimonies of families interviewed by BBC Radio Gloucester) that ‘only parents who have been accused of fabricated and induced illness can really say how far reaching and completely devastating these accusations are’.

Click here to access the survey details.

For a resource note concerning the misuse by local authorities of their ‘protection’ powers click here.

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[1] Ken Simons I’m not complaining, but … (Joseph Rowntree Foundation 1995) p.34
[2] BBC Radio Gloucester 10th December 2018 Mark Cummins programme at https://www.bbc.co.uk/programmes/p06rr4t5 at 2:07:27 and 11th December 2018 at https://www.bbc.co.uk/sounds/play/p06rr56rat 2:20:17. 
[3] Fabricated and induced illness.
[4] BBC Radio Gloucester 11th December 2018 Mark Cummins programme at https://www.bbc.co.uk/sounds/play/p06rr56r at 2:23:40. 
[5] A blog that focuses on the needs of people with Ehlers Danlos Syndrome (a connective tissue disorder).

Elaine McDonald

It is reported that Elaine McDonald has died.  She was by all accounts an extraordinary person and I hope she is remembered for this and her brilliance as a ballerina.  I did not know her personally, but sadly her name will forever be linked in my mind with injustice, indignity and indifference.

Rhydian Fôn James wrote a brilliant letter to BASW concerning her dreadful Supreme Court judgment and its likely implications, and sadly his fears have proved to be correct.  I (like many others) simply managed to write an angry paper about  it.  Elaine’s case was a litmus test: a measure of how civilised a society we really are. It is a test that the Royal Borough of Kensington & Chelsea and our judicial system failed.

For a wonderful tribute to Elaine McDonald see Ally Writes blog Fragments from a Half Life ‘Our Butterfly Has Flown’- click here.

 

Personal Budgets: the tail and the dog

The law is clear: a disabled or older person’s eligible needs must be met, either by the council arranging the services or by providing a direct payment sufficient to enable these needs to be purchased.

Although councils are required to tell people what their care support needs ‘cost’ – ie the amount of their personal budget[1] this figure must always be enough to meet their eligible needs.  This means that the assessment of eligible needs comes first and the calculation of what the cost is of meeting these needs (ie the personal budget) comes second: the dog wags its tail (and not vice versa).

Some councils tell individuals that they have been allocated an ‘indicative budget’ of a specified sum.  This amount is sometimes calculated using a computer algorithm known as a RAS (Resource Allocation System).[2] In general a person in this position might be advised to tell the council that she / he is not interested in what their indicative budget is – that they want their eligible needs met (as the law requires).  To repeat the point – their eligible needs must be met and the council must pay enough to ensure this happens. Of course if the person wants to have a direct payment to cover some or all of their needs – then this payment must itself be sufficient to cover the eligible need.

Disabled and older people have a right to a proper assessment[3] undertaken by a skilled person designated by the social services department, who must identify what the person’s ‘needs’ are for social care support (including equipment etc).  In deciding which ‘needs’ are eligible for support, the assessments must ignore any support provided by a carer. The eligible needs must be detailed in an intelligible way and the disabled person must be given a copy of this and an opportunity to explain which parts are not agreed (in which case an attempt at resolution should be undertaken).   A care and support plan must then be drawn up specifying how the eligible needs will be met.

The care and support plan must describe not only what needs the person has (in qualitative terms) but must also quantify these – eg how often the person needs help, when, where, how and who will provide this support – ie by one or more people with specific skills etc.  The person’s personal budget that then results must be sufficient to enable these eligible needs to be provided.  The courts and ombudsmen have said that councils must be able to explain how this has been calculated – and that this must relate to the assessment (ie not to some generalised ‘indicative amount’).[4]

So, for example, if a person has been assessed as eligible for care and support during the day (eg because his or her carers are not willing or able to provide this at such times) then the council must arrange for the care and support at such times.  It can do this by arranging such support itself or by commissioning a third party agency to provide the care. If the disabled person or his or her family / friends are willing to arrange this care – then the council must provide sufficient funds (by way of a direct payment) to enable care support of a suitable quality to be purchased to meet this need: the council cannot specify some arbitrary figure (ie an ‘indicative amount’ or a ‘RAS’) – the figure must be demonstrably sufficient to purchase the ‘assessed needs’ of the disabled person.  As the Statutory Guidance to the Care Act makes clear (para 10.27) – councils’ finances are relevant when they decide how to meet the eligible needs ‘but not whether those needs are met’ adding that councils should ‘not set arbitrary upper limits on the costs [they are] willing to pay to meet needs through certain routes’.

One might ask what the point is of a personal budget: a question posed by many academic writers.[5]  I have answered this question in the following terms:[6]

Personal budgets are an ideological construct – the basis of which is that commodification is a good thing and that providing more than 1.3 million people[7] with details of how much their care package costs is a cost-effective exercise that improves the quality of their care.[8] It is not something that is done for NHS patients, and the evidence as to its effectiveness is far from promising.[9]

 

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[1] Care Act 2014 section25(1)(e).
[2] The research suggests that such figures are almost always incorrect – see, for example, C Slasberg, P Beresford and P Schofield, ‘The increasing evidence of how self-directed support is failing to deliver personal budgets and personalisation’ in Research, Policy and Planning(2013) 30(2), 91-105 and L Series and L Clements, ‘Putting the cart before the horse: resource allocation systems and community care’ in Journal of Social Welfare and Family Law(2013) 35 (2), pp207–226.
[3] Almost invariably a ‘face to face’ assessment – seesee Luke Clements Community Care and the Law 6th para 3.95 and National Institute of Health and Care Excellence (NICE) guidance  People’s experience in adult social care services: improving the experience of care and support for people using adult social care services NICE guideline [NG86] (2018) para 1.3.5.
[4] R (KM) v Cambridgeshire CC  [2012] UKSC 23 para 28 and see also local government ombudsman reports on Complaint No. 16 016 273 against Derbyshire CC 19 March 2018 and Complaint no 13 006 400 against Cornwall Council, 26 February 2015.
[5] See for example Sarah Carr  ‘Personalisation, participation and policy construction: a critique of influences and understandings’ in Beresford Critical and radical debates in social work (Policy Press 2014)  27 – 33. 
[6] Luke Clements Community Care and the Law (2017) 6th ed para 10.04
[7] A significant proportion of whom have limited mental capacity, inadequate advocacy support, limited experience of making social care choices, and not infrequently encounter the system when in crisis.
[8] For details of the policy origins of personal budgets, see Luke Clements, ‘Individual budgets and irrational exuberance’ in (2009) 11 CCLR 413–430.
[9] See, for example, Richard Titmuss, The gift relationship,George Allen & Unwin, 1970.