One Day They Will Come For You

Thanks to Hampshire Centre for Independent Living for this article giving a short history of means tested charging for social care services…… 

Back in 1990 my friend Mark, Chairman of the local Coalition of Disabled People, started a campaign to resist the introduction of means tested charging for services to older people.  Many of us though sympathetic to the organisation only half-heartedly supported this campaign. ‘It is only old people in nursing homes’ we thought. Mark was adamant that even though this did not affect most of us, nonetheless it had to be opposed because it was wrong to discriminate in such a manner. Besides, he said, one day the policy might come to include us. 

In our ignorance we thought the proposals sounded reasonable.  After all we secretly reasoned. these were elderly people now in ‘care’, probably beyond active life.  Surely it was reasonable to ask them to contribute to the cost of their well being?  The sums were not punitive, mere pocket money.  Research amongst them had found support even though the researchers admitted that many were incapable of understanding the questions let alone giving a reasoned answer. 

The subsequent history is simple. Mark led the coalition in challenging the local authority.  The first measure was to ask for wider consultation amongst the disability community.  The local government commissioned further research which they said again gave majority support for their proposals.  Indeed the local authority did this exercise twice, each time conducting the ‘survey’, each time compiling the results, each time gaining the answer they wanted. 

The local authority ‘survey’ was loaded.  Mark and the coalition were convinced that ‘turkeys do not vote for Christmas’.  They never have and they never will.  Local politicians know that given a choice voters support parties who reduce taxes.  Is it really likely that disabled people are going to say they want to pay for services?  That they are happy to pay a ‘disability tax’? Ah but the authority asked cunning questions:

Do you think we should help as many people as we can? Yes/No 

Do you agree that those who can afford to should contribute towards the cost of their service? Yes/No 

Yes of course we should help as many people as we can.

Yes of course rich people should contribute towards the cost of their service.

Never mind the research, Mark was right, the means testing and charging policy for social care services was wrong in principle.  It was wrong because it is discriminatory.  Furthermore Mark has been proved right in saying that this policy would one day affect us all.

Another reason why people thought the practice acceptable was that the sums involved were of pocket money proportions.  A tickle rather than a fatal stabbing.  But Mark was wise and saw that the introduction of this policy was the thin edge of a wedge At the time none of us had personal experience of being charged for social services. 

We did not know about the financial assessment process.  A violation, a degrading and humiliating experience, a laying bare of ones life, an enforced exposing of all ones personal income and expenditure to a previously unknown apparatchik who records every detail ‘for the office’ and decides whether or not we are judged able to contribute to the cost of our care.  The threshold being the national ‘subsistence level plus 25%’, any monies above this must be used to buy your own care or pay the local authority ‘charge’ per hour.

Turn to 2006. At regular intervals over the intervening years the means testing and charging policy has been reviewed and each time history is repeated, the result has been to broaden the scope and depth of the practice.  First it was just elderly people in nursing homes and only pocket money, now it affects all disabled people, all people using services and the sums can be anything up to £385 per week. 

So what is the point of this history? Simple.  The policy was introduced in a reasonable manner.  It appeared harmless, only affecting one small group, old people in the nursing homes.  The sums involved were of pocket money proportions.  It all seemed harmless, tolerable, acceptable.  And besides all that it did not include us. Over time the scope and depth of the policy has deepened and widened such that at the end of 16 years all disabled people are significantly affected.  What we thought was nothing to do with us now bites us all and bites hard.

That is the background.  That is the history.  Those are the facts.   Anybody anywhere in Europe who believes that the means tested charging policy is acceptable as long as the practice is ‘fair and reasonable’ needs to look to England and see that not only is the policy discriminatory, its application is punitive and far from fair and reasonable.  It is a hidden tax on impairment, a cancer secretly eating its way through our society and ‘no one’ speaks out against it until it bites them. 

Ask not for whom the bell tolls, It tolls for thee’  (John Donne)


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