Caring and sharing: challenges, costs and questions of dignity

In 1999 Mary had a stroke, leaving her permanently paralysed down one side. She was 75. She had worked as a school secretary for most of her life and had seldom been in hospital. Mary’s daughter Alison moved her mother into a private residential home with an outstanding local reputation, where the costs of her 24-hour care were paid for by money raised by the sale of Mary’s small retirement flat. 

Mary lived a further 17 years and was visited by Alison most days. Within ten years, Mary’s assets had fallen below the threshold for self-funding. Alison applied to the local authority which took over the funding of her mother’s care. Because her mother was a long-term resident, the home ‘waived’ the difference (around £400 per week) between its charge and the sum provided by the local authority. The policy of this particular home meant that Mary (unlike many others in similar circumstances) was able to remain in familiar surroundings until she died.

The story of Mary and Alison is the kind of narrative that concerns Dr Brian Sloan, a legal scholar whose background lies mainly within family law and the law of succession. Sloan is currently an Early Career Research Fellow at CRASSH where he is looking at adult social care and property rights within the context of the changes being introduced as the Care Act of 2014 is given effect in England.

“My interest in the topic stems in part from the fact that discussions about social care touch on so many disciplines,” says Sloan. “The questions raised can be looked at from a wide range of viewpoints – historical, cultural and anthropological, and philosophical as well as legal. Society faces a huge challenge in devising a system that’s sustainable and apportions financial burdens in a way that is considered fair.”

Sloan is one of the first legal scholars to be looking at the 2014 Care Act and property rights in relation to the right to peaceful enjoyment of possessions as set out in the European Convention on Human Rights. In doing so, he is building on his previous work on ‘informal’ care (provided by family and friends), much of which is contained in his monograph Informal Carers and Private Law (Hart Publishing, 2013).

“The relationship between adult social care and property rights is a largely neglected area of the law despite its implications for millions of people,” says Sloan. “I suppose there is a natural reluctance to address what seems a rather less than jolly subject – and families often confront issues about payment for care and inheritance during a period of crisis, which might weaken their position.”

The population is ageing: it is projected that by 2035 almost a quarter of the UK population will be aged 65 or over. The question of who should pay for the care of the frail and the vulnerable, whether the individual or the state, is being hotly debated.  In terms of practicalities, much of the discussion centres on the relationship between healthcare (broadly free at the point of delivery by the NHS) and social care (which is means-tested).

The difference between the two systems, healthcare and social care, is not widely understood among the population. The blurring of the boundaries between the two can result in decisions that appear arbitrary. As a recent report from the King’s Fund pointed out , ‘people with conditions that can involve very similar burdens – cancer and advanced dementia, for example – end up making very different contributions to the cost of their care’. 

The difference in contributions arises from the distinction made between the two conditions: while cancer is regarded as largely a health problem, dementia is regarded largely as a matter for social care.  The cost of that social care – such as help with dressing and feeding – will be apportioned between the local authority and the individual on the basis of an individual’s assets. These assets can include the individual’s home, depending upon who else is living there.

In essence, the National Health Act 2006 imposes a duty on a clinical commissioning group to provide health care services to patients to such extent as it considers necessary to meet all reasonable requirements.  Before the Care Act, however, the social care system was governed by a confusing patchwork of legislation that, for example, imposed arbitrary distinctions between residential and other types of care.  It also left particular local authorities with a large amount of discretion, much of which was governed by principles contained in mere guidance rather than in legislation.

The 2014 Care Act consolidates, updates and clarifies earlier legislation covering the provision of adult social care, including the matter of financial responsibilities. For example, it will make changes to the criteria used for means-testing in making decisions about the provision of care. At present people with assets over £23,250 are broadly ineligible for state support and will often need to fund their own care. The Care Act will ultimately raise this threshold to £118,000 (where an individual’s home is included in the assessment). The level below which people are entitled to free care is due to be raised from £14,250 to £17,000.

A cap will be introduced which will, for the first time, limit the lifetime care costs that an individual will have to bear. The cap is expected to be £72,000 and will be adjusted annually to account for inflation. This figure will relate to actual care costs only.  ‘General living costs’, either in a domestic or residential setting, will not count towards the cap. For this reason among others, the number of people benefiting from the cap is likely to be less than 20% of the elderly population. “The cap will provide an important element of reassurance,” says Sloan, “but its overall impact will be quite limited.”

Another key change is the introduction of universal deferred payment agreements (DPAs). Hitherto available only on a discretionary basis, a DPA allows payment of social care costs to be deferred (effectively via a secured loan) until a certain point, such as the death of the care recipient or the sale of his/her home. Local authorities will be effectively obliged to offer DPAs to adults whose needs are met in a care home and have no more than £23,250 in assets excluding the value of their home.

Sloan explains: “DPAs are designed to prevent people from having to sell their homes during their own lives in order to pay for their care, and that is laudable.  For a family and succession lawyer like me, however, it is significant that property subject to the charge will probably still be sold after death to pay for the care.  This will affect the putative inheritance of the care recipient’s family members, who may have suffered disadvantages in the course of providing informal care.”

The Care Act has been broadly welcomed. However, as Sloan points out, many aspects of it are shrouded in complexity and controversy. “Its statutory “well-being” principle does not appear to require any particular action to be taken in a specific circumstance and, despite useful clarification of the law, it is not likely to produce a widespread change to practice in a system that characterised by stretched resources. It is also likely that many people will have to pay a considerable sum towards care costs even once the new scheme is implemented,” he says.

For generations, concepts of property and family have been deeply entwined. Familial relationships are often cemented (or fractured) by assumptions (often unspoken) about inheritance of property. In the past, the elderly were typically cared for by an unmarried daughter who forsook other possibilities. The tacit understanding behind the arrangement might have been that the daughter would inherit the family home or at least sufficient funds to keep a roof over her head for her own lifetime.

Today’s societal structures are such that most women work outside the home, families are often geographically dispersed, and old-fashioned notions of ‘duty’ have shifted. The price of paid-for care is so great that many older people find that the costs they incur in being looked after (for example, in a residential home) eat into their assets and, in many instances, mean that (like Mary) they are unable to pass on their properties to their chosen successors.

Assessment for financial accountability for social care costs depends on ownership of assets. So what would have happened if Mary had given her flat to her daughter Alison before she had a stroke?  Would Mary’s care costs have been covered in part by her local authority?  The answer is likely to have been no: the value of the disposed property would have been taken into account at the time of assessment, even if the transfer of assets had occurred several years earlier.

In the course of his research Sloan has been looking at cases in which an individual has disposed of property with the result that his or her assets fell below the threshold for care contributions. In cases where local authorities have contested the figures submitted during assessment, a number of courts have found in favour of the local authority, holding (among other things) that the regulations covered ‘any transfer made at any time’ so long as it was undertaken for the purpose of decreasing the amount an individual might have to pay for his or her care.

The provision of care on a national scale is a balancing act between needs and resources. We are often reminded that human dignity should be at the centre of debates on how best to care for people. The ‘system’, however, often appears to fail in safeguarding that dignity. In considering the provision of adult social care within the framework of the European Convention on Human Rights, Sloan also looks beyond property to explore questions related to the right to respect for private life.

In 2011, former ballet dancer Elaine McDonald pursued her fight for home-based community care right through the UK courts to the European Court of Human Rights. McDonald suffered a stroke that severely limited her mobility, meaning that she could access a commode only with help. Her need to urinate several times a night required the provision of a night-time carer. Her local authority proposed that she used incontinence pads in order to save annual costs of about £22,000.  McDonald was not incontinent and her lawyer argued that the proposal was ‘an intolerable affront to her dignity’.

The European Court of Human Rights was prepared to accept the possibility that the proposed reduction in the level of care provided to McDonald did interfere in principle with her right to respect for her private life (under Article 8 of the Convention). At the same time, however, the Court found that the interference was largely justified.  It was ‘satisfied that the national courts adequately balanced the applicant's personal interests against the more general interest of the competent public authority in carrying out its social responsibility of provision of care to the community at large’.

“In a sense, Elaine McDonald’s case highlights the limits of the Care Act,” says Sloan. “While the Act does clarify the legal framework, it is unlikely that a local authority would be prevented from taking a similar decision in the future.  The Act also does more than the previous law to protect the property rights of care recipients, which is beneficial to them and their would-be heirs.  It should be remembered, however, that if this apparent reduction in liability causes the system to be even more under-resourced, this could lead to local authorities treating more of those who cannot afford to fund their own care in the way that McDonald was treated.”

Sloan will be presenting some preliminary conclusions from his research at a number of conferences in the near future.