Direct Payments and NHS Continuing Health Care

The Deputy Minister’s update statement on the Welsh Independent Living Grant[1] (WILG) is particularly welcome because it acknowledges the risk to the independence,choice and control of disabled people in Wales unless the Welsh Government enables people in receipt of either a Joint Package of care funded by the Local Authority and Local Health Board or NHS Continuing Health Care to receive a Direct Payment.

This risk to independence has been known to Welsh Government for some considerable time,[2] has been identified in a ‘direct payment note’ on Rhydian Social Welfare Law in Wales and highlighted as a risk in a paper on the Closure of the Welsh Living Grant that was offered as evidence to the Petitions Committee dealing with the Save WILG.

While it is heartening that the Deputy Minister ‘has instructed her officials to undertake a review of the Direct Payments and CHC interface’ one could argue that this is very late in the day. It would be hard to convince disabled people and their carers that setting up a system that enables them to have meaningful and personal control over key elements of their care package will compromise the principles of a public service NHS. The time is ripe to redress this lacuna which has this potential to derail Welsh Governement commitments and aspirations for disabled people in Wales.

Recipients of the WILG require immediately the confidence that they can continue to retain the right to have personal assistants of their choosing irrespective of whether the funding from the LHB is a proportion of the cost of the care and support package or whether it is a NHS CHC funding arrangement.

There are those people who are not previous recipients of the WILG but who are fearful that their future is in the hands of local government and local health board officers who erroneously believe that Direct Payments cannnot be facilitated.They require an unambiguous statement from Wesh Government that all Local Authorities in Wales and all Local Health Boards are required to facilitate a joint package of care through a Direct Payment as set out in Continuing NHS Healthcare: The National Framework for Implementation in Wales[3].

In the absence of legislative change Independent User Trusts(IUTs) should be offered to disabled people and facilitated by the Local Health Board, to enable a person who has become eligible for NHS CHC to consider this option and its suitability for his/ her circumstances.

While we await a successful conclusion of the review set up by the Minister, there needs to be measures in place to enable disabled people in Wales to achieve their personal outcomes and maintain their independence. Welsh Government commitments and aspirations to Social Model of Disability is currently being shown to be hollow when the level of physical impairment and health related needs determine whether a disabled person in Wales can have control of their care and support arrangements through a Direct Payment.

Local Authorities and Local Health Boards need practice directions from Government and training in this matter if we are to avoid further human rights infringements in Wales.

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[1] Julie Morgan AM, Deputy Minister for Health and Social Services Written Statement: Welsh Independent Living Grant (WILG) – Update on Independent Care Assessments (Welsh Government 13 February 2020)
[2] See for example letter Welsh Government Director of Social Services and Integration dated 10 February 2016.
[3] Welsh Government Continuing NHS Healthcare: The National Framework for Implementation in Wales (2014).

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Photograph of ‘Adar gwyllt Tryweryn’ by Richard Jones -@lluniaurich

The Queen’s Speech

Social care reform

My ministers will seek cross-party consensus on proposals for long term reform of social care. They will ensure that the social care system provides everyone with the dignity and security they deserve and that no one who needs care has to sell their home to pay for it.”[1]

 

There is already a duty to promote dignity and security (Care Act 2014 section 1); already a right not to have to sell your home in order to pay for care (ie a deferred payment – Care Act 2014 sections 34-36); and the last time a Government tried to seek a cross-party consensus on sensible proposals for reform (2010), they were torpedoed by the party of the current Government.[2]

 

Principle

Necessary social care support should be provided free at the point of need.  All the arguments for (and against) a free at the point of need NHS apply with equal force to social care.  ‘Free at the point of need’ social care was the reform recommended by the 1999 Royal Commission.[3] For a recent update on the feasibility of this approach – see the 2019 report of the Institute for Public Policy Research. [4]

 

Provision

The New Economics Foundation (NEF) has published an important paper entitled Ownership in Social Care.[5]  It highlights a key social care reform challenge – namely:

to move away from short-termist, cost-driven competitive tendering towards public-social partnerships between the state and diverse, decentralised providers with ownership structures that enable people to have a greater stake and control over the care that is provided.

The reforms of social care that took effect in 1993 may have been intended to privatise social care but at least they spoke of a ‘mixed economy’:[6] a mixture of public and private care provision.  In the succeeding years the ‘public’ element has dwindled to the point that (as the NEF report makes clear) social care services in England are almost entirely outsourced – very often to ‘chain companies with an ownership model that concentrates power among shareholders’.[7]

One hears so much about the innovation of private businesses – but in reality in this sector it has been the innovation of debt and tax leverage, offshoring and ‘sweating the labour’ – in terms of wage reductions, zero hours contracts and electronic monitoring.[8]  NEF characterises social care in much of England as ‘extractive’ – driving inequality through low-paid, insecure jobs, and putting downward pressure on the quality of care.   Low wages, poor terms and conditions result in high staff turnover which is almost three times higher for private providers than public ones.[9] One of the most often heard complaints by disabled people and their families about the quality of care concerns constant changes in the care assistants delivering the care.

NEF presents an alternative vision – ‘shifting to more co-operative models in which services are owned and run by employees and / or people receiving support and their families’ and where there is a ‘much more significant role for local authorities, as public bodies that are democratically accountable to their local communities’.  Social care funding should benefit the local economy: should support secure, decent, well-paid work with the profits remaining locally – supporting disabled people, the providers of care and in consequence the local economy itself.  The NEF report is important and deserves reading / adopting.[10]

 

Paying for it

The Labour Government’s 2010 proposals to raise extra social care funding via an increase in inheritance tax represented (and continues to represent) a sensible way of finding additional funds needed to cover a long-term care settlement.  The funding required is relatively modest (an increase of less than 1 per cent of total government expenditure[11]) – and pales into the far distance the moment one hears mention of HS2.  It should also be remembered that 20 years ago Scotland embarked on a programme to make social care free at the point of need and this has proved to be a generally popular policy.  20 years ago a Royal Commission also came up with the same suggestion.[12]

Funding some of the additional costs through the medium of inheritance tax has the merit of pooling risk among those with significant estates and avoids the current system which Andrew Dilnot (who chaired one of the formal social care funding reviews – in 2011[13]) has condemned as ‘the most pernicious means-test in the whole of the British welfare state’.[14] Although there is much hype about inheritance tax being the UK’s most hated tax[15] one has to wonder if this has any basis (or any rational basis).  Taxing the dead seems to be a more attractive option than the alternatives and it is a tax that only kicks in for individual estates over £325,000 (and £650,000 for a married couple[16]) and even then the beneficiary retains 60% of the surplus.

And to close – a quiz question. 

“How many estates pay inheritance tax each year?” See footnote for the answer.[17]

 

For previous posting on social care reform see:

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[1] Prime Minister’s Office The Queen’s Speech 2019 19 December 2019  p.37
[2] Nicholas Watt Spectre of ‘death tax’ haunts Andy Burnham’s care revolution Guardian 30 Mar 2010.
[3] The Royal Commission on Long Term Care With Respect to Old Age: Long Term Care Rights and Responsibilities [Chairman: Professor Sir Stewart Sutherland] Cm 4192-I  (The Stationery Office 1999)
[4] Harry Quilter-Pinner and Dean Hochlaf Social Care: Free at the Point of Need (Institute for Public Policy Research 2019) p.4 and only marginally more expensive (£2 billion in 2030) than the Conservative party’s 2017 election pledge of a cap and floor system.
[5] Daniel Button and Sarah Bedford Ownership in Social Care (New Economics Foundation 2020).
[6] Department of Health Caring for People: Community Care in the Next Decade and Beyond Cm 849 (Stationery Office 1989).
[7] See for example D Burns et al Where does the money go? Financialised chains and the crisis in residential care CRESC Public Interest Report March 2016.
[8] See for example UNISON Suffering along at home: A UNISON report on the lack of time in our homecare system (2017) and 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.
[9] J Dromey and D Hochlaf Fair Care: A workforce strategy for social care (IPPR 2018).
[10] As does Reclaim Social Care Taking Private Social Care Provision Back into the Public Sector (2019).
[11] Harry Quilter-Pinner and Dean Hochlaf Social Care: Free at the Point of Need (Institute for Public Policy Research 2019) p.4. and only marginally more expensive (£2 billion in 2030) than the Conservative party’s 2017 election pledge of a cap and floor system. There would of course be substantial savings to the NHS budget – see ADASS Sort out social care, for all, once and for all (ADASS 2019) points out that investment in social care reduces pressures on the NHS due to the preventative nature of much of the work of care as well as benefiting the economy.
[12] The Royal Commission on Long Term Care With Respect to Old Age: Long Term Care Rights and Responsibilities [Chairman: Professor Sir Stewart Sutherland] Cm 4192-I  (The Stationery Office 1999)
[13] Commission on Funding of Care and Support Fairer Care Funding (2011).
[14] Amelia Hill Social care reviewer condemns UK system and calls for new tax Guardian 6th April 2017.
[15] See for example E Agyemang  Inheritance tax: what does the future hold? Financial Times July 11 2019.
[16] If the first person to die leaves their entire estate to their partner.
[17] Very few people are currently within the scope of Inheritance Tax, with fewer than 25,000 estates being liable each year. This is less than 5% of all deaths, even though ten times as many estates need to complete and submit forms (out of 590,000 deaths) – see Office of Tax Simplification Inheritance Tax Review –second report: Simplifying the design of Inheritance Tax July 2019 p.4.

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NHS Personal Health Budgets: new rights and new guidance

NHS England has issued new guidance to coincide with the extension[1] of the right to a Personal Health Budget (PHB) to cover people eligible for section 117 Mental Health Act 1983 after-care support as well as for people in need of wheelchair services.  These new rights came into force on 2 December 2019.  The 27 page guidance (NHS England Personalised Care:  Guidance on the legal rights to have personal health budgets and personal wheelchair budgets (2019)) can be accessed by clicking here.

A right to have a PHB (which can be paid as Direct Payments) now exists in England for:

  • Adults eligible for NHS Continuing Healthcare funding (NHS CHC);
  • People eligible for after-care services under section 117 of the Mental Health Act 1983;
  • People assessed as in need of a wheelchair (for more than short-term use); and
  • Children and young people eligible for NHS funded continuing care.

The guidance states that there are six key features of a PHB ‘that ensure people experience the best outcomes possible’.  These are that a person should:

Be central in developing their personalised care and support plan and agree who is involved;

  • Be able to agree the health and wellbeing outcomes (and learning outcomes for children and young people with education, health and care plans) they want to achieve, in dialogue with relevant health, education and social care professionals;
  • Know upfront an indication of how much money they have available for healthcare and support;
  • Have enough money in the budget to meet the health and wellbeing needs and outcomes agreed in the personalised care and support plan;
  • Have the option to manage the money as a direct payment, a notional budget, a third-party budget or a mix of these approaches;
  • Be able to use the money to meet their outcomes in ways and at times that make sense to them, as agreed in their personalised care and support plan.

 

Importantly the guidance stresses that

Any agreed budget must be sufficient to ensure the health and wellbeing outcomes required for a person can be realistically met. For example, if a CCG decides, when planning a personal health budget, to release money based on a monetary valuation of a person’s expected quantity of continence products as would have been provided by the NHS, they must be satisfied that this amount is sufficient to enable the purchase of the products in the open retail market so as to meet someone’s identified continence needs. An exception to this is the provision of wheelchairs. For personal wheelchair budgets holders, this right to have does not affect the existing ability to add to the cost of the wheelchair of their choice.

The guidance concerning the working of the new scheme for wheelchairs is brief – but includes (page 16):

For personal wheelchair budgets the amount in the budget should be based upon what it would cost the NHS to meet the person’s assessed postural and mobility needs via the wheelchair service currently commissioned by their CCG. The introduction of personal wheelchair budgets builds upon the existing regulatory framework which enables people to contribute to the cost of a wheelchair. For people who have additional health and social care needs, the personal wheelchair budget can be pooled with funding from other statutory services (if this is agreed as meeting the person’s assessed needs by all services and is cost effective). With personal wheelchair budgets, people can also choose to access non-statutory funding that may be available via voluntary, charitable organisations both nationally and locally.

 

And at page 17:

For personal wheelchair budgets, manual, powered chairs and specialist buggies are included. CCGs need to consider repair and maintenance and how this will either be supported by existing services or made available as part of a personal wheelchair budget. CCGs need to consider specialist seating and pressure-relieving equipment as it remains a statutory duty to provide these, either as part of a personal wheelchair budget or via existing commissioned services. Decisions on how these are provided will need to be made locally on a case by case basis, based on clinical assessments.

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[1] By amendment of the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012, reg 32A.

NHS Continuing Healthcare statistics

The latest NHS CHC statistics for England show a small increase in overall numbers of people eligible for funding – up from 55,872 at the end of June to 57,016 in September (the figure stood was 63,000 in December 2014). Fast-track funding is now almost 36% of this total.

During the same period the number of NHS overnight beds in England fell by 1,396 to 127,225 (the figure was 134,573 in December 2014).

This means that in the last five years the number of people eligible for NHS CHC has fallen by 5,984 (9.5%) and the number of NHS beds has fallen by 7,348 (5.5%).

Caring for our future

The Health, Social Care and Sport Committee of the National Assembly for Wales has published a report on its ‘inquiry into the impact of the Social Services and Well-being (Wales) Act 2014 in relation to carers’.  The report has 31 recommendations – including the requirement for ‘a clear action plan’ to address ‘the failings of implementation’.  For the full report, click here.

Unacceptable delay:

Complaints procedures for disabled children and their families

The Cerebra Legal Entitlements and Problem-Solving (LEaP) Research Project at Leeds University has published a report concerning serious (and systemic) failings in the way that a number of English councils investigate children’s social service complaints.

Key findings included:

  1. The current complaints’ regime rewards councils that maintain dysfunctional systems, as the penalties for poor behaviour are either minimal or non-existent.
  2. Central Government and the ombudsman’s guidance fail to give emphasis to the fact that delay, when it impacts on the life of a child, is to be treated as damaging and requiring a special response.
  3. The current complaints system discriminates against children and families with low incomes and / or poor support networks.
  4. In over 60% of the cases where the ombudsman found fault with the council’s complaint handling his office remitted the complaint back to the council without a recommendation for compensation for the delay – despite the average time (from the initial complaint to the ombudsman’s report) being 345 days. In the remainder of cases, where compensation was recommended, the average time amounted to 572 days and the average compensation was 30p per day.

Recommendations include:

  • The relevant guidance should formally recognise that delay in relation to children’s services complaints is a substantive harm, for which there is a presumption that appropriate compensation should be paid.
  • The Secretary of State should demonstrate a willingness to use his default powers to require recalcitrant authorities to exercise their functions in a way that complies with the law.

The full report (including a Summary) can be accessed by clicking here.

 

Anniversary quotes

Two quotes: one published a year ago and the other 175 years ago.

14 million people, a fifth of the population, live in poverty. Four million of these are more than 50% below the poverty line and 1.5 million are destitute, unable to afford basic essentials. The widely respected Institute for Fiscal Studies predicts a 7% rise in child poverty between 2015 and 2022, and various sources predict child poverty rates of as high as 40%. For almost one in every two children to be poor in twenty-first century Britain is not just a disgrace, but a social calamity and an economic disaster, all rolled into one.

(Statement on Visit to the United Kingdom, by Professor Philip Alston, London, 16 November 2018)

Two nations between whom there is no intercourse and no sympathy; who are as ignorant of each other’s habits, thoughts, and feelings, as if they were dwellers in different zones, or inhabitants of different planets. The rich and the poor.

(Benjamin Disraeli Sybil, or The Two Nations 1845)

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Two quotes – one a decade after the Poor Law Amendment Act 1834 formalised the misery of workhouses: the ‘most sustained attempt to impose ideological dogma, in defiance of the evidence of human need’ (to quote EP Thompson[1]) and the other a decade after the introduction of (to quote Theresia Degener[2]) the ‘human catastrophe’ of austerity economics.

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[1]    E P Thompson, The Making of the English Working Class, Penguin, 1991, p295.
[2] Professor Theresia Degener, former Chair of the United Nations Committee on the Rights of Persons with Disabilities and Professor of Law and Disability Studies (Protestant University of Applied Sciences, RWL, Germany).