Respite, Disability and Personal Budgets.

Rivan Vincent has been prominent in the news over the last day or so.  She has a six year old daughter, Celyn, who has quadriplegic cerebral palsy and epilepsy. In the face of additional respite services being denied to her, she expressed her frustration on a Mumsnet forum stating she had asked social services to take her daughter into care because she could not cope anymore.

From this forum post, a campaign was generated which has led to coverage in many national papers.  The Mail, The Guardian, The Telegraph, the Mirror, The Independent,  – they all cover the story.

All, quite rightly broadening the debate to concentrate on the wider issue of access to respite for those who care for people (particularly children) with disabilities has had welcome ‘column space’ in the news agenda.

I really hope that Ms Vincent does receive the additional support she needs and it is possible she will due to the intervention of the Prime Minister in her case.

What I hope, far more, is that the debate is continued and that it is not only Ms Vincent, and not only the carers of children with disabilities that benefit from this flash of publicity.

I am concerned that the government have batted back criticism of their promises to promote respite by claiming that they are pushing extra money into these services.

An extra £800m apparently. Not ring-fenced. Going to local authorities. So in effect, it is money that is going to be swallowed up with other care costs and the government can claim the moral high ground – but pushing an additional £800 million into respite care while taking hundreds of millions of pounds from local authorities in other areas doesn’t really cut mustard, so to speak.

I wonder how long it will take for the government to blame local authorities for not providing care services. Not too long.

The Telegraph leader which urges us not to blame Downing Street for these matters

South Gloucestershire council, not Downing Street, has declined Mrs Vincent’s request. No doubt its social services budget has been cut – but is there no money to be saved elsewhere? The council’s website is heavy with the jargon of environmentalism and diversity. Perhaps its “equalities team” could be slimmed down to free up money for Celyn. And perhaps other local authorities should start dismantling similar initiatives before cutting front-line services and putting the blame on the Government.

So we see the rub. It is the council that is spending things on anything that isn’t ‘front-line’ that is ‘to blame’ for the current situation.

For me, it’s important this opportunity isn’t lost to create more interest and focus on the role that carers play not just carers of children with disabilities but all carers. If the government really wanted to help more broadly, they could look at the insult which is Carers Allowance. That would put more money in the hands of carers.

The problem is that for every Celyn who has public focus, there are hundreds of thousands who don’t have the same media access and spotlight. Saying that it is important that this becomes and remains an issue in the public consciousness.

The fact is, it comes down to money. Better care costs.

It also seems almost woefully ironic that in the face of cuts to Disability Living Allowance and Employment and Support Allowance, the government seems to have found a conscience for disabled children.

Cameron would be as good to remember that children grow up and continue to need support and continue to face higher costs of living than people who do not have disabilities.

There’s an article on the  Guardian’s website from the mother of a disabled child, who writes, in the context of her frustration about the process of assessment by social workers

Instead of strangers with clipboards, the first stage in an assessment could be made by the disabled person themselves. My daughter could have been asked to keep a detailed diary of what she did and what she needed help with. It needn’t be written down; it could be recorded or dictated. This would allow her to paint a rich portrait of her teenage life, which includes going out to see The King’s Speech with friends, as well as someone helping her on and off the toilet.

This baffled me because that is exactly what is and has been happening through the roll out of personal budgets and self-assessment questionnaires. People DO write their own assessments now. They shouldn’t need to be written. They can be recorded, drawn, dictated – that is what we were promised in theory.  This is exactly what the Putting People First agenda should be doing and encouraging – instead of generating a whole new pile of forms.

This week I had to have a couple of support plans for users of  Personal Budgets approved. They were both for older adults with dementia who unfortunately were not able to take as full a role in the decision process as would be ideal due to a lack of understanding, however, I spoke extensively to family members and gained a good feel for the situations at hand and provided advice as to what I felt might be useful.

Family members while involved felt confused by some of the details so I tried to simplify as much as I could.

Infuriated by the paperwork, I pushed my ‘forms’ to one side and wrote out the support plan that we had discussed extensively on just a plain piece of paper. I was frustrated by the level of repetition that was expected of me.

After all, I remember training I had been on about wonderfully creative support plans and all the nodding and smiling about that’s what we should be using. Let’s work in new ways and break out of local authority mentality.

I took my ‘new style’ paperwork which involved just free form writing. No questions answered.  No exposition about what could or could not be done.  My manager thought I was having a joke with her and I responded, no, I hadn’t filled out ‘x’ form or ‘y’ form. This was the support plan that I was presenting.  They nodded and agreed.  Then told me to copy out all the information into one of the local authority forms.

I did because if I hadn’t the services might not have been provided in the same way and to be honest, it didn’t take me too long but it is indicative of the type of way that people have been working for so long.  This happened to me two days ago.

Local authorities have had lots of ring-fenced money to promote the shift to personal budgets. I think some of the focus and project management has been aimed at wasting as much of that money as possible.

We are left with systems that are barely shadows of what they could have been. Sure, they work fantastically for some people but the rest have to pick up the dregs that are left behind.

Hopeful thoughts  for the day.

a) It’s Friday

b) Ms Vincent’s desperation and plight will lead to greater insight and better services for all disabled adults and children and their carers.

13 thoughts on “Respite, Disability and Personal Budgets.

  1. Pingback: Respite, Disability and Personal Budgets. - Fighting Monsters - Member blogs - Social Work Blog - Carespace from Community Care

  2. My son has a similar disability to Celyn Vincent – quadraplegic, epilepsy, gastrostomy, oxygen, non verbal, wheelchair etc. There are more of us around than you’d imagine (see Prof. Jim Mansell’s report done for DoH , ‘Raising our Sights’ ). We went through the same process of minimal support and only got a decent service after massive battles when he was almost 20.
    It was wrong then and it’s wrong now. His care is suddenly under review because it is expensive. The review is being done by Health & Social Services – we asked the Social Worker to see it before it goes to panel and so far have been refused. (I suspect this may be illegal.) Our review is being done via the tick boxes – thank you for trying to do a more realistic one.
    PS We’re not eligible for Carers Allowance as we are retired (State pension excludes you – it stopped at 60, though the care didn’t.)

  3. Once again a great post from yourself.

    Regarding the provision of care, family carers aren’t some optional extra to be added on as an afterthought. Our society would not function without the care currently provided by unpaid carers and the consistent refusal by Governments to improve Carers lives has ripple effects throughout Social Services and the NHS. Precious few people receive the actual support they need and so many carers are just not receiving vital services and support.

    As regards carers allowance, Carers seem to have been completely forgotten as benefits are changed around them The recent government consultations – both ‘Refresh Carers Strategy’ and ‘21st Century Welfare’ – failed to address the issue of Carers Allowance. Ruling all financial considerations out of both these enquiries severely compromised what they can achieve.

    Please take a look at this . I hope you could offer some words of support.

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  5. I propose a kafka scale, like Beaufort and Richter, of how an authority turns something that is clear and simple and beautiful into something horrible and expensive.

    On respite I have had several fascinating discussions about who is respite for – a critical point – and is a holiday respite.


    • Clive, that is so so true. The beautiful thing dies as the computer does not like it. As funding getrs tighter process becomes more3 complicated. Fact.

  6. “Cameron would be as good to remember that children grow up and continue to need support and continue to face higher costs of living than people who do not have disabilities.”

    Oh my Gosh. Really? Are you sure? Maybe it would be better if we just let them all die in their cribs and then we wouldn’t have to worry about them every again. (Sorry, it’s Friday and my bitter, sarcastic, evil twin has taken over. Hope I don’t have to see any clients today)

  7. We lost “self assessment” ages ago. Unpleasant DLA like forms now have to be fed into the ever hungry computer. “personalisation” has become another highly controlled bureaucratic process.

  8. Having been involved with self assessment in the past, the overwhelming issue with it is getting good info from people.

    It may seem good, letting people write diaries and tell things in their own words, but the major, major problem is that this then privileges the articulate.

    The only way around this is to use a lot more closed questions, but this stops people putting things in their own words.

    Combining the two may seem like a solution, but then you have a huge form.

  9. Thanks all.
    Carolyn, yeah, it’s pretty depressing.
    Mary – that’s what makes me so angry.
    cg – yes, that’s a problem – there’s no reason the questions can’t be asked though – they just don’t have to physically be on a large form with tick-boxes. I can add information to a diary etc but the thought of tick boxes gets me riled! I just want to write free text!

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  11. I noticed that recently a family in a very similar position to Riven tried to use human rights law to get more support for their daughter. They had in fact already placed their daughter in a care home, because (they said) the council had failed to offer a credible support plan to care for her at home – which they wanted to do. They attempted to argue that because they couldn’t afford the care to bring their daughter home, she wasn’t ‘free to leave’ and was thus deprived of her liberty. If the judge had found this, the courts may have been compelled to make the same finding for other families (like Riven’s), which in turn would have required that either the courts authorise them being deprived of their liberty or they force the council’s to pay for the support they need at home… It’s not a huge surprise that the judge found she wasn’t deprived of her liberty, but it does seem a shame. It’s one more legal mechanism carers won’t be able to use to get the support they need to keep families together.

    If you want more info on the case, I’ve blogged about it here:

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