Age Discrimination and Language – or why I don’t like ‘The Elderly’.

What is age besides a classification? When do we become old? What language is used in relation to people who reach certain points in their life cycle. Does a child become an adult at 18?  Legally perhaps but in a sense these are rough brush strokes which relate in very different ways to different people.  When do we stop being ‘young’ and start being ‘middle aged’? When do you move towards being ‘old’?

Wise Ones

maureenshaugnessy@flickr
I’ve had growing feeling over the past years really, that our society does not value older people. Just yesterday, I received a wonderful application form from a potential student social worker. It was a positive picture of a hardworking and ethically sound potential practitioner. It warmed my heart.

But the student, although careful to detail their work with people with disabilities and children with special needs, felt that it was entirely appropriate to comment alongside this that they had worked with ‘the elderly’.

I presume this wasn’t discussed or mentioned by tutors at the university but it made me wonder how ‘the elderly’ has become more acceptable than ‘the disabled’.

I will put my hand up at any accusation of oversensitivity. I am acutely aware of the importance of language vis a vis power.  I am also aware that language shapes thoughts and reflects thought processes. If that makes me politically correct, I am proud to reclaim that label as a badge of honour.

Maybe in a society that needs to compartmentalise obsessively, it becomes more important to define someone by their age rather than their humanity but it also made me question what we mean by ‘elderly’ or ‘older people’.

Are we merely describing someone who has reached a certain age? I have worked in older adults services for a long time and some have called themselves ‘older adults’ and others ‘over 65s’ teams as a way of providing a context of age.

I read so many stories in the papers about the ‘problem’ of an ageing society and the costs of managing more dementia in society and it saddens me that age becomes another negative label and a problem for the wage-earning society to ‘deal with’. Perhaps that is the key to the perceptions that we have.

It’s natural that our perceptions of age and what ‘old’ is change with time as we and our parents, colleagues and friends move into ‘older age’ and it becomes less of an us and them type discourse and it becomes more personal.

I wonder why we, why society demands we differentiate between disabilities which are ‘age related’ and conclude that it is predominantly a cost issue. Social Security is determined by how economically productive someone is or could potentially be and when someone is past ‘working age’ their needs for social interaction and stimulation must automatically decrease?

Where is the ‘personalisation’ in the determination of Disability Living Allowance as opposed to Attendance Allowance. Look at the differences in those names.

Disability LIVING Allowance is paid to adults of working age (and children). Attendance Allowance is paid to those who are over 65. To be ‘attended to’ or ‘dealt with’. Not to live. Independent Living Fund monies were always restricted to those up to 65 (ok, now they are being wound down but the idea behind them was age-biased).

I wonder how much the Equality legislation will help? Perhaps it will but mostly I will only notice a difference when I stop seeing the ‘problem’ of an ageing population referred to and blame being assigned to people on the basis of their age.

As for me, I’m still deciding whether to raise the language issue with the potential student in their first interview with me or whether it might be something that needs some time to work on..

‘The Elderly’ No, I don’t like that. Not at all.

Elaine McDonald, Kensington and Chelsea and Dignity

Yesterday, the High Court ruled in the case of R (on the application of McDonald)  v Royal Borough of Kensington and Chelsea. This was a further appeal by McDonald against a previous decision at a lower court.

Elaine McDonald is 68 year old woman who worked as a ballerina in her younger days. The press seems to be a little fixated on her former career, and she does have a more glamorous background than many who come to rely heavily on social care so perhaps it is no surprise. Ms McDonald suffered from a debilitating stroke in 1999 and had a further fall in 2006 which led to very poor mobility.  Although not medically incontinent, she required assistance to use the commode during the night.  She had been provided with overnight support to meet her assessed needs related to continence during the night however Kensington and Chelsea were suggesting that this need could be met by substituting this assistance with the provision of continence pads during the night which would, by their nature, demand that Ms McDonald remain in these pads until carers could come in the morning and at intervals to ‘change’ her.

sulle punte

frabattista @ flickr

I wasn’t surprised by the decision by the High Court because there are precedents that led the access of local authorities to resources to be a factor in relation to the provision of services.

In my own working experience, it is impossible to access any kind of home care support overnight except in some very specific cases where there is very high need support and even then, it is much much more likely to be provided to younger adults with physical disabilities. I can count on the fingers of one hand the amounts of times I’ve come across local authority funded overnight support in the last 10+ years of practice.

Sometimes I have to take a step back from what I regard as ‘normal’ practice to understand the outrage at this decision. I realise how I become attuned to ‘local authority’ think and ‘budgetary’ think and that’s quite an uncomfortable thought.

We get used to applying different definitions of ‘dignity’ and what is acceptable because we are aware of the thousands of Ms McDonalds that require support and the existence of a  finite resource. So do you support the Ms McDonalds and assist them to provide a fuller and more dignified life at home or do you provide 8 Ms Smiths with respite care over the year. These are the realities of the decisions and it shouldn’t have to be so.

Perhaps that’s why I’m less surprised by the McDonald ruling and less surprised by it.

There are though horrendous inequities in our system of the provision of social care. Where Ms McDonald in Kensington and Chelsea may be receiving a vastly different service from a parallel Ms McDonald in Newham.  I would venture a guess that there are thousands of potentially very similar cases to Ms McDonald bubbling under the surface ‘in the system’ but because they are not ex-Prima ballerinas and don’t have the will, way and means to bring cases and involve solicitors, we will never know about them.

If anything is, quite literally, the ‘dirty secret’ of social care and health care provision particularly for older adults, it is this.

We have different standards of what we class as being ‘dignified’ for ourselves as for others. What might class as dignity to an older adult has less value and invites less spending to an equivalent younger adult with exactly the same care needs. Those who shout loudest get the most – as far as care is concerned and as far as public interest is concerned.  The shame and pity of the ‘personalisation’ agenda and the flawed implementation of personal budgets in social care have exacerbated this problem further rather than provided a channel to allow for a more equitable system of care delivery.

It sometimes feel cruel and harsh, because it is a cruel and harsh system that it perpetuated by discriminatory systems. Would the warehouse-style very large residential and nursing care homes with 100+ beds be acceptable for younger adults with similar care needs? I don’t think so.   I don’t mean to imply that every large care home is bad and every small care home is good. That isn’t the case. It’s about a fundamental reassessment of what is acceptable in the provision of care for older people in our society.

Lucy at The Small Places covers the issue of dignity through caselaw, in an excellent, thorough and educational post.

I make no apology for my less erudite post and thoughts.  The more I work and the more I reflect, the more interplay I see between the basic conceits of ethics and ethical judgement in the role that I play as a part of this system that condones this mealy mouthed interpretation of human rights merely on the basis of cost and resourcing issues.

It is accepted because our society is inherently ageist. We don’t want to think or pay for the care of older people. We care more about our collective inheritances and potential house prices than the more collective thoughts about where the boundaries of an acceptable level of care and dignity lie.

If anything, this has impressed on  me the importance of constant reflection on my practice and my work. I can advocate to an extent, from within the system, for the dignity of those like Ms McDonald and I try to. Some I win and some I lose but as long as I make my voice heard through every step of the process I can help to feed the voices ‘from the front line’ back to the more senior managers.

I make judgements and I am the mouthpiece of the local authority. I am an employee but the second that I become complacent, the  moment I stop reflecting on the effects the decisions I make have and the instant that I join that local authority ‘group think’, I lose my ethical compass and my professional judgement.

I talk a lot about important qualities of social workers and social care workers. Respect, empathy and to that I’d add advocacy. It might not always be seen in the internal battles that we fight, but we have to try to fight so as not to accept a ‘normal’ that is defined on the bank balance sheets of the local authority accountants.

Saving DLA

It looks like Andy Burnham, the Secretary of State for Health, has ruled out any use of DLA (Disability Living Allowance) to fund a ‘national care service’. DLA is one of the few non-means tested benefits that is provided to people aged under 65 who have ongoing mental or physical health difficulties over a long term.

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There have been campaigns to protect DLA and Attendance Allowance (the equivalent benefit for over 65s) but, worryingly, no mention has been made about Attendance Allowance and I can’t help thinking this is either because it is proving too expensive or that those who receive it have quieter voices to engage when shouting.

It was suggested earlier in the year that funding for a more comprehensive and ‘fairer’ system of paying for care would leave DLA at risk however this might have proved to be just too politically sensitive at a time when it has been to be fair game to pick on benefits for those who are sick.

I remain concerned about the lack of commenting on Attendance Allowance though. Already those who are over 65 receive less in payment for exactly the same presentations of disabilities as those under 65 and it remains one of the more obvious ‘age discriminations’ in the ‘system’. We are told that the costs would escalate if the same criteria and funding were applied to those under 65 as those over 65 but it becomes something of a game and a reason for more inequities across the board.

If someone applies for DLA before their 65th birthday they retain the higher rated allowances for the rest of their lives whereas if they wait and claim one day after their 65th birthday, the receive the lower Attendance Allowance for life.

I remember one woman I worked with whose daughter was furious that she was only advised to claim a month or two after her 65th birthday, meaning she had lost out on the higher ‘lifetime benefit’ she would have had under DLA. We are advised to recommend making applications for these benefits as soon as we become involved but often this is after 65.

I hope very much that the differences between treatment of Disability Living Allowance and Attendance Allowance will be addressed. Especially as, in the same speech, Burnham vowed to abolish age discrimination in the Health Service.

Elderspeak

I admit, I had no idea what ‘Elderspeak’  term meant until I read this article in the Telegraph.

Apparently it is

defined by researchers as overly caring, controlling and infantilising communication – bears many similar traits to “baby talk”, including simplified grammar and vocabulary and overly intimate endearments.

Maybe it’s just the circles that I move in but it’s not something I’ve come across a great deal. I can’t imagine myself ever calling someone I work with ‘sweetie’ or ‘dear’. But I can’t imagine myself saying that to anyone at all – let alone someone I was actually employed to work with as a professional!

image zappowbang at flickr

According to a study quoted in the newspaper article

such verbal ageism can harm longevity by delivering a self-fulfilling message that older people are incompetent, frail and feeble, sending them into a negative downward spiral, researchers say.

This is where the study makes much more sense to me. Language is enormously influential. It harbours the attitudes that we hold dear and sometimes it is a ‘looking glass to the soul’ where we might not necessarily want it to be.  By talking to adults in child-like terms we are indicating that we somehow have less respect for their capacity to understand and perhaps to the decisions that they make. It is not only patronising but it indicates clearly that we are making assumptions about someone else’s’ ability to understand.

I have to say that I don’t use babytalk either. I personally find that children respond better when they are not patronised so the same thing holds true. Except children are more likely to have a family member speak up for them if they feel the treatment they are receiving is not appropriate.

The study in question is described further in The New York Times.

a long-term survey of 660 people over age 50 in a small Ohio town, published in 2002, found that those who had positive perceptions of aging lived an average of 7.5 years longer, a bigger increase than that associated with exercising or not smoking. The findings held up even when the researchers controlled for differences in the participants’ health conditions.

In those terms it is very difficult to ignore. It isn’t just about the words that escape from the mouth as much as the effect that they have. I have to say, as well, there are some people who call EVERYONE dear, love and sweetie, regardless of whether they are 6 or 96. That’s not really the point though. I see it more as an issue about people who modify not only their attitude but their language specifically when they are working with older adults.

There may or may not be cognitive impairment but that doesn’t entitle a person to less respect. Language can be simplified without being overfamiliar or condescending. And it does matter. If it makes someone feel that they have less validity as an individual, it is a part of the process of stripping away the humanity that is there.

The  Telegraph article finishes with the insight of one of the respondents to the study saying

“But I believe that the people who heap these endearments upon us are reacting to their own fears of ageing in a youth-oriented culture. My advice, darlings – get over it.”

Which says it a lot better than I could have.

image pamelaadam at Flickr

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Legislating for Equality

Details regarding the new Equality Bill were announced last Thursday. The Bill seems to be an attempt to consolidate existing legislation related to discrimination – a seemingly uncontentious issue – however combined with this are some new proposals which seem to be garnering attention in different ways.

Community Care unsurprisingly, considering the target audience (social care workers, predominantly) , highlights the inclusion of outlawing age discrimination and the implications that that could have on the provision of social and health care for the elderly population.

EVERYLIFEMODERN EVERYDAYLIFEMODERN @ Flickr

It has long been the case that less money has been assigned to older people’s care services when compared to that of younger adults. The same levels of funding and flexibility are not allowed in the provisions of care for the elderly and it has long been an area that I, personally, have had issue with. Conversely, an equality of service can lead to a massive increase in budgets for the elderly – or a massive drop in budgets for younger adults – which, in my own cynical way, I see as being more likely.

As the article points out

‘While age discrimination is outlawed in employment, it is currently the only equality dimension – the others are belief and religion, disability, gender, race and sexual orientation – where discrimination is legal in the provision of goods and services.

The duty on the public sector will put age on a par with race, disability and gender.’

So this has the potential to be ground-breaking legislation – but I have to retain a healthy dose of scepticism because some of the financial considerations about providing an equality of service could be massive. Still, I shouldn’t be too churlish – this is exactly what I’d been waiting for in the services for many years. Hopefully, it will mean that assessments can be truly needs-based rather than having to be divided and considered on the basis of the age of the person concerned.

Ironically, at the moment, I am working with a woman with early onset dementia (because our team, although basically working with over 65s, does work with people diagnosed with early onset dementia due to the expertise in dementia that is held) – she is in her 50s and because the structure of some of the budgets that are held by the department and the provision of services are geared around over 65s, it seems to be an abnormal challenge to the system to coordinate the funding for her care.

Adult CMHTs push it back to the Older Persons’ CMHT  – who push it back to the younger adults services. And so on (the pushing, by the way, is being done by the financial managers rather than the practitioners!).

The lack of flexibility when it comes to budget-holding is thunderous – to the detriment of the provision of service – well, actually it is to the detriment of the provider of the service as we went ahead and arranged a service for her according to her need – it is just now that the different financial departments are actually refusing to pay the bills that the problem  has arisen. She, herself, is fortunately oblivious to the pushing and shoving behind the scenes.