Tuesday, May 15, 2012

Is this a poison apple I see before me?

I see in todays 'news' that the government is to push Personalization and reduce statementing of children.  These are not news, but I do find them worrying.

Reducing the number of children with a statement may seem innocuous.  But what it means in practice is that education authorities will no longer be obliged to provide the support services they currently do to many children with moderate disabilities.  It's a cost cutting measure.

Making Personalization, and it's close bedfellow Direct Payments, the main aim seems to put parents in charge. But our own experience of how Personalization is in fact being implemented by councils is that it is actually being used to cut costs rather than put families in charge.  Contrary to public perception, the money can't be used for anything - only for specified things - not always the most appropriate ones.  It also puts the organization and admin. load onto carers without paying for it.  It also allows councils to provide no money for 'unmet need' i.e. the care provided free by family carers (whether or not they get carers allowance, which pensionable carers don't).  It is good for some people, but they can get it anyway.  It doesn't work for everyone - if a person has no family care network, they have no voice and are thrown back on an uninterested local authority.  Underfunded, like Care in the Community, it's being used to cut costs.

These announcements are cynical PR exercises which in fact disguise more cuts by the back door.  They sound good - and if done properly with enough funding, like anything else, they might well work.  But the money is being cut.  And the money provides services.  No matter what administrative process you use to distribute it.

Snow White's poison apple comes to mind.  There'd be a cartoon in this, if the press hadn't bought into the PR message.

Saturday, May 12, 2012

Change happens

Life is gradually changing for us.  We're no longer carers and it's just beginning to dawn on us.  We miss our son enormously and there are reminders everywhere - and I don't mind them at all.  Bereavement has been difficult - surprise, surprise.  But it's put into perspective how I view all the other carers and disabled people I know.

I always did have respect for them, but as 'one of the gang' that respect was a little tempered by inevitable comparisons between us and them.  I now have some idea of the gulf between carers and those without a caring responsibility.  It isn't just the sheer hard work and time consumption, it's also the continuing mental stress and closed focus you're forced to live with.  Not having to do all the care, and not having to keep one ear open for the problem phone call, is very odd when you've lived with it for almost 30 years.

We've had a sort of (unwelcome) release.  People with disabilities have no prospect of that and still have to get on with living.  Their carers have the ongoing uncertainty and prospect of a demanding role with probably their own deteriorating health and capacity.  The respect both are due is massive.  They rarely get it.

  • I'm afraid I don't find the sentimentalism of 'aren't they wonderful' very helpful.  
  • I find the TV makeovers installing disabled bathrooms demeaning - when there is government funding but it's cash limited so that only a tiny proportion of those who need it, get it.  
  • I object to the media insisting that disabled people and their carers have to be either victims or heroes.  They are real, ordinary people coping with extraordinary circumstances.  We can do something about the circumstances - and just praising them isn't what's needed.  What's needed is real services, real access.
  • Accepting charity (as we've had to do in the past) is not nice - we are grateful, but we shouldn't have to be.

Respect the disabled.  Respect the carer.  But do it practically - make sure your taxes get used well.

In honesty, I'm not a carer any more.  But I do have the responsibility to do my best by them.  I will continue to  fight for their rights and against the systems idiocies.  Whether I'll continue in anonymity as Ned Ludd (as I no longer need to) is another matter.  And it doesn't matter.  There will be a few weeks intermission while I do something involved in 'getting a life'.  After that I'll decide whether to carry on as Ned or come out of the closet and concentrate my efforts in public.