Extended Family Care

In Labour's first term, the Royal Commission on Long-Term Care called for all personal social care to be made free to the patient. Eight years on, the state only pays for the care of people with assets less than £12,000, with many elderly people having to sell their homes to pay for care.

Given the observations made by David Willetts a month ago about intergenerational solidarity and older people being reluctant to borrow against their accumulated wealth, perhaps it is a good thing that people should need to liquidise some of their assets in retirement. After all, we do not want the state merely to take on more financial responsibility for our care, unnecessarily increasing the burden placed on the tax-payer, do we?

And yet, if we continue to develop our political vision (or "big idea" as the BBC chose to call it this morning) that values the family, perhaps we should welcome government proposals to scrap means-testing for long term care of elderly and disabled people as long overdue. For, the present system is clearly unsustainable, overly-complex and unfair. However, once again, this is not simply a question of economics but also social capital. Figures published last month by the University of Leeds for Carers UK value the unpaid support provided by carers at £87 billion a year — more than the annual total spent on the NHS and more than four times the amount spent on social care services by local authorities each year. This sum represents a vast network of extended family relationships and other friendships that would be lost if the state made any attempt to assume the same responsibility for care.

I remember when my parents moved a few years ago to be closer to my sister and her family, they attempted to arrange for my great-aunt to be moved to a care home nearer to their new home. However, they were told they would be required to pay the difference in the residential care funding provided by the two counties' social services as the county where my aunt had previously paid council tax would be responsible for funding her care but that their level of provision was lower than where my parents wished to move her. As a consequence, rather than living close to her extended family, with all the benefits that would bring such as more frequent visits from her family, my aunt lives two hours from the rest of us.

Given the rising challenge posed by our changing demographics and ageing population, surely government should be encouraging families, even through tax breaks or tax credits, to stay together and should be looking to maximise independence and choice for people being cared for and their carers.

A Question Of Convenience

As with the over-medication of children and euthanasia, I find myself asking to what extent convenience is the driving factor behind the request of Alison Thorpe, the mother who has asked doctors to give her 15-year-old daughter Katie a hysterectomy to stop her from starting menstruation — on the basis that Katie suffers from cerebral palsy and "would be confused by periods and they would cause her indignity."

If Mrs Thorpe's doctors are granted legal approval, a dangerous and disturbing precedent will have been set. And if anyone has difficulty understanding why that might be so, perhaps it's time to re-read Ken Kesey's "One Flew Over the Cuckoo's Nest" (or to re-watch the 1975 film starring Jack Nicholson)

Undignifying Research?

The Independent reports that Britain's top scientists are calling on the Government to lift a ban on the use of embryos created from human eggs and animal sperm.

In actual fact, the Academy of Medical Sciences report, Inter-species embryos, does not go as far as making any such explicit call. It simply notes, "The reasons for banning the creation of hybrid embryos for in vitro experimental use, while permitting research involving other types of human embryo incorporating animal material, are not clear to us, but we are not aware of any current scientific reasons to create such entities," adding elsewhere, "However, given the speed of this field of research, the emergence of scientifically valid reasons in the future cannot be ruled out."

Somewhat ironically, though, in making their case for proceeding with research on other kinds of hybrid and chimeric embryos, they use an argument that could equally undermine respect afforded to people who are disabled or elderly. For they argue that human "dignity arises from the qualities possessed by a creature, rather than species membership per se." Explaining their point in more detail, they state:

"We judge it unlikely that ‘human dignity’, a phrase used to emphasise the special moral status and importance of human beings, derives simply from species membership. If the concept of ‘human dignity’ has content, it is because there are factors of form, function or behaviour that confer such dignity or command respect. Either hybrid creatures would also possess these factors or they would not. If they do possess these factors, they would also have a specific type of dignity analogous or identical to human dignity that other creatures lack; if not, they would not."

However, they do not define what these mystic "factors of form, function or behaviour" are. If we can justify excluding human rights from individuals who because of their immaturity lack certain undefined "factors of form, function or behaviour," then what is to prevent us from excluding those same rights from individuals who because of physical or mental impairment also lack those same factors?

Conversely, if human rights are rightly extended to the physically disabled, the mentally impaired, and individuals in a persistent vegetative state, and if "human" rights are even to be extended to great apes and robots, on the basis of "the qualities possessed by a creature" though they do not even share "species membership" with us, then how can we justify excluding those same rights from individuals who because of their immaturity lack certain undefined "factors of form, function or behaviour"? Or, to encroach on the abortion debate, at what point of maturity do embryos acquire the necessary "factors of form, function or behaviour" to merit their protection from needless destruction? At present, the creation and use of human embryos for research is not permitted beyond 14 days in vitro. In order to be consistent, should the time frame allowed for human embryo research be extended to 24 weeks to match that for abortions, should the time frame for abortions be reduced to 14 days to match that for in vitro experiments, or should some other compromise be reached?

Equally Discriminating

I realise this post risks being somewhat controversial but, never one to sweep issues under the carpet, here goes...

The primary school governing body that I'm a part of spent this morning discussing the Disability Equality Duty, which requires schools to take a more proactive, explicit and comprehensive approach to promoting disability equality and eliminating discrimination not only among disabled pupils, but disabled staff, parents, and other users of the school. As with much rights-based anti-discrimination legislation, I was left with a feeling that we ought to be promoting equal rights for all, not singling out any particular minority groups, however worthy their individual causes or however strong their claims—be they disabled, homosexual, women, Muslim, Asian ... or, dare I echo The Blunderer, even white, middle-class, heterosexual, Christian men(!)

For a start, not all minorities are easily defined. It seems even the male/female distinction is not as simple in these enlightened days as one might used to have thought. When it comes to disability, this is especially true. The Disability Discrimination Act 1995 defines a disabled person as someone who has "a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities." For the sake of entitlement to employment rights, this seems to encompass a multitude of people who wouldn't normally dream of describing themselves as disabled, including those suffering from asthma, severe allergies, and back problems. Indeed, a report from the Cabinet Office two years ago, Improving the Life Chances of Disabled People, indicated that an estimated 11 million adults and 772,000 children in the UK are disabled — equating to 24% of the adult population and 7% of all children. Yet, employers are in no position to assess an individual's overall level of relative disadvantage, so no wonder many of them are put off by the politically correct language of disability. I know one employer who took on two disabled applicants for positions, knowing full well that the applicants wouldn't be able to do the jobs they were applying for and even posed a potential health and safety hazard, but didn't feel able to turn the applicants down out of fear that they would be accused of discrimination ... In both cases the disabled workers quickly realised they were not made for the jobs and moved on, but it needn't have turned out that way.

Others claim that "a disabled person is not disabled by their impairments but by a society that does not provide the environment to allow equality." So, depending on who you listen to, either we're all disabled or nobody is disabled, it's just we're all prejudiced. However, perhaps this route has greater potential. A universalised disability right could be incorporated into more general equality legislation. An example of this can be seen in Norway, where employers are bound by the Work Environment Act to provide employees with a safe environment at work and the scope for personal and vocational development and self-determination. Guidance to the Act suggests that the general regulations regarding the design of the working environment are of particular benefit to disabled people, but no definition of disability is provided. Thus people with a disability (however one wishes to define that) are provided for, but so is everyone else, thus eliminating the need for individuals to prove their disability status if they are to exercise their rights and also reducing the danger of discrimination—positive or negative.

I suggest that this would be a fairer way forward for everyone, for we are all individuals and nobody's identity should be defined by their membership of or exclusion from any class or category. Instead of responding to the complaints and grievances, be they real or perceived, of minority groups, anti-discrimination measures should focus on positive duties to introduce equality measures. As the Shadow Attorney General wrote in Reclaiming our civil liberties, in the current issue of The Difference, making the case for a modern, British Bill of Rights: "'Rights' and 'liberties' will no longer be a tool for those striving for special privileges but a protector of all and a reminder of the duties that we all owe to each other."