Your Letters - July 2010

Personalisation: the sugar pill of cost cutting

I'm glad Peter White hasn't swallowed the line on personalisation pushed by its supporters ("Pete's Place: Chickens coming home to roost", Disability Now, April 2010).

Like Peter, I've attended "visioning days", with the promise that these events would tell us all we need to know about personalisation. They didn't.

We've been asked to believe that, with personalisation, we can ask for anything that will improve our lives and it will be given. The reality is that personalisation is being brought in to reduce the cost of care provision and save councils money.

Individuals ("customers" in personalisation-speak) needing care may be able to make their own choice, but the funding will be awarded on the basis of assessment and points.

I've heard rumours that individuals will be issued with a directory that lists all the available services and options, presumably accompanied by the number of points needed to purchase them (anyone remember Green Shield stamps?) - not ideal for anyone who has difficulty dealing with large amounts of text or understanding social services jargon.

And if customers will be expected to make their own choices from the directory, they'll need to be able to compare and evaluate the available options, as well as work out which service, equipment or care provider will be of most benefit to them, and calculate the cost - not easy to do without experience or knowledge of different services.

As a social worker who works with visually-impaired people, I don't claim to know what's best for anyone, and I always stress to my clients that they're free to turn down any equipment I demonstrate to them or service I offer them, and that I'm there only to tell them what's out there - it's their choice.

If, as has been implied, the social worker's role begins and ends with the assessment, there must be an advocacy service, preferably made up of workers with specialist knowledge of disability, and already installed prior to the start of personalisation, to offer advice and guidance.

The ethos of personalisation also assumes that customers accept their circumstances and are realistic about their present and long-term needs. Those of us who've grown up with a disability are self-aware, accept that there are areas in life that cause us problems, and have a good idea of what would make life easier.

But for people who've just acquired a disability, choices aren't that simple. It can often take time to accept that a disability is permanent, and be realistic about its implications. I've met people who expect that in a few weeks' time, after a bit of rehab, they'll be fully independent and problem free, while others lapse into depression and are unable to see themselves coping, now
or in the future.

Personalisation, as it has been presented so far, doesn't allow for emotional adjustment or changes in acceptance.

I fear that personalisation is a poorly thought-out, quick-fit solution to the rising cost of providing adequate care and support to older and disabled people, and I worry - not for the sake of keeping my job - that "customers" not given enough specialist guidance and emotional support are at risk of making inappropriate choices that affect their future wellbeing.

Trish Talbot, by email

Dignity in Dying coexists with disability rights

Andy Rickell, ("Never mind the quality ... value the life", Disability Now, May 2010) claims: "The Dignity in Dying brigade aggressively talk up traditional negative stereotypes of disabled people to promote assisted suicide."

Dignity in Dying doesn't support assisted suicide for disabled people who aren't dying. We focus on the quality of death of dying adults in the final weeks and days of their life. We try to ensure they can have a good death rather than prematurely ending their life.

To suggest we use negative stereotypes to further our campaign undermines the integrity of all those fighting to change the law.

Disability rights activists such as Lord Ashley and Lord Low have long been supporters and the public profile of campaigners like Debbie Purdy has only, in my view, promoted positive images of disabled people.

The campaign premise is choice and autonomy, just like the disability rights movement. I assure your readers it's quite possible to support disability rights and assisted dying for terminally ill adults.

Emily Halsall, Dignity in Dying, London W1

Cut VAT on car fuel

I agree with Helen Smith ("The case for a fuel rebate", Disability Now, June 2010) about the need for a rebate on one's fuel or at least the need to zero-rate the VAT element. I get all my spares and repairs done without paying VAT so why should I pay VAT on the fuel needed to run it?

When Dawn Primarolo was Treasury Secretary I was instrumental in getting the rules changed on cars adapted to carry a disabled person. Previously the rules were that you either had to sit in your wheelchair or be carried on a stretcher in your car for it to qualify for zero-rating. After numerous letters explaining that I was being discriminated against because I could transfer from my chair to a seat, the rules were suddenly changed to what we have today.

I was one of the first in the North East to purchase a new car VAT free and had to tell the salesman at the garage how to zero-rate it. I've even produced my own Revenue & Customs form for the garage that does my servicing. If more people wrote to their MPs, we might get something done. So come on, get writing!

Denis Shaw, Grosmont, Whitby

A girl's best friend

Having followed your WebWatch section, I'd like to say that my computer is one thing I wouldn't be without, as it's my window to the world.

As someone with cerebral palsy, I can't write or speak normally and therefore find letter writing and speaking on the phone difficult, but with a computer the world is at my fingers because, for example, I can keep in touch with friends by email, go shopping, find out whatever I wish from the web and keep a photo album.

So many elderly people say they could never use a computer or worry that if they had one they might break it. To be honest I don't see how, as I've found that there's always a way of putting things right. My sister is 86 and I'm 82 and we use one on a regular basis for a hundred-and-one things and find it a great help.

Because of my disability I can't always hit the right key so I've bought a key guard that can be removed in two seconds when some one else wants to use the computer. I never handle the mouse as I can't control it, but by switching on the numeric pad I can type what I like.

So to everyone who hasn't yet tried using a computer, I urge them to have a go. It's really not as painful as it looks.

Vera Dean, Wallingford, Surrey, by email