Destination Unknown?

Last week a report named 'Destination Unknown: Summer 2012' was released detailing 2 years of research regarding the cumulative affects of welfare reform on 6 households. The report was written by Claudia Wood for the Demos* project: 'The Disability in Austerity'.

A day doesn't seem to go by without newspaper articles featuring some aspect or other of welfare reform, from Cameron's housing benefit reforms announced yesterday, to debates about what and for whom universal benefits should pay for. As the Demos research demonstrates however, disabled claimants are particularly vulnerable because many claim more than one benefit and use more services, added to which there is much uncertainty about further cuts in the future, hence the title of the report: 'Destination Unknown'.

The amount of income the featured households have already lost ranges from £410.61 to a massive £2066.67) (Wood Claudia, 2012 Destination Unknown: June 2012, Demos p.87), which has had a considerable impact; at the lower end, even losing just under £9 per week could mean the difference between staying afloat financially or getting into debt with utilities. The research also stresses the human cost – the increase in depression, anxiety and fear that claimants suffered as a result. One of disabled contributors Albert - who among other things is at risk of losing his home - said: ‘It’s a worry – all the time – not having enough money to survive.’ (p.53).

Other factors concern the cost of social care for service users. Most local authorities have increased the amount service users pay or reduced care package hours. Grants for disability adaptations and equipment are increasingly hard to access, and even when the application is successful, the delivery of equipment and the commencement of building work for adaptations are delayed, with families needing to make repeated requests for these things over long periods of time. The family of Aisha in the report provide a good example of just that. Aisha - who suffers from cerebral palsy, quadriplegia, and epilepsy - was still waiting for a standing frame 9 months after the initial assessment, her support worker's hours were reduced due to lack of funding, physiotherapy that she had once a month was reduced to just 3 sessions per year, and the family had to fight the local authority in order to obtain a hoist that worked properly (p.43,44). Along with many other pressures - personal as well as financial - it's not surprising that Aisha's mother needed treatment for anxiety and depression, and although this had eased recently she said: ' The turmoil over the past year ‘has [had] such a profound effect, symptoms could still re-establish… and still do, in some respects’ (p.45).

There are other examples in my own neighborhood. One local woman, Tracy, who is prescribed various medications for chronic arthritis, asthma, and a heart condition (including morphine for the pain), was recently turned down for Disability Living Allowance despite the fact that the multiple conditions she suffers from had deteriorated, compared with previously successful claims on lesser medical grounds. She also has to pay more for her house due to the government cutting the amount of interest they will pay on mortgages. After paying the mortgage, utility bills, and a crisis loan used to fix a faulty boiler, this has effectively left her with £12 per week for food, cleaning products, and personal items.

Tracy is now chronically depressed, and no wonder considering that a few weeks ago she said that her whole week's food budget would stretch to 'bread or butter', but not both. Friends are helping her out at present. They have taken over the cost of running her car, which she cannot manage without because she can barely walk a few meters without being out of breath. They also provide her with some meals each week, but she is unsure how long she will be able to rely on their support.  

The way that welfare reform has affected me is slightly different, but I have still suffered a considerable loss in income. I had a financial assessment for my care package in May 2011, and it was decided that I had to pay the local authority £2774.88 per annum for my care, which they had previously provided free whilst I was still able to work. They have 'clawed back' the whole of the care element of Disability Living Allowance, and some of the Disability Premium that is part of Employment Support Allowance (The article points out that only 3 authorities UK wide do not take DLA into consideration any more when assessing a service user's contribution p.18).

The issue that is often overlooked when taking into consideration as to whether local authorities should 'claw back' the care element of DLA (so that is it exclusively used to pay carers), is that disabled people have other care needs not directly associated with personal care but for which the care element was supposed to be used for. So for example, people need more heating because they are at home all day, and they need to employ people to do things outside a care remit (gardening, extra cleaning, windows cleaned, odd jobs etc.). Although local authorities are supposed to take these things into account, you need to provide receipts. Unfortunately. since it was my first assessment I didn't know about that, so I was not able to produce many on the day of the assessment. It leads you to a 'catch 22' situation: after the assessment you can't afford to pay anyone for work or for anything else that the local authority would have deducted from your weekly contribution, hence your next assessment will reveal that you have no extra costs at all. At no time was I previously provided with the information I needed about this, and there must be many others in a similar situation.

Consequently, this winter, probably like many others in my situation, I haven't been able to light the sitting room fire until tea-time (I have coal-fired central heating and never thought of saving the weekly coal receipts), and I've not been able to afford someone to attend to the garden as often or do any odd jobs (garden maintenance is a condition of my tenancy). I also can't save very much, so if I need a new washer soon (which I do), I will have to get into debt using an expensive credit card. In combination with increased care costs I face having to pay £100 every four weeks from next April for the 'bedroom tax', reduced council tax benefit, and possible loss/reduction of benefits as I am migrated onto Universal Credit. Disabled people claiming UC and the new Personal Independence Payment, also face the stress of continual reassessment and the possibility that the DWP will refer them to an 'open ended' work programme.

Alongside the factors mentioned above, and other knock-on effects too numerous to go into detail here like 'disability hate crime' and the media's culpability by disseminating incorrect and misleading information, it is no wonder that some disabled people have considered suicide as the only way out, and unfortunately there is evidence that some have already done so. I was convinced at one point 2 years ago - after extensively researching welfare reform and it's implications for me - that there was no other option for me. I have lived in abject poverty before during the 80s, when within a period of a few years, the Conservative government scrapped housing benefit for working people, introduced water charges via privatisation, and poll tax. As a result, we could hardly afford to eat, we couldn't afford heating, our electricity kept being cut off, we all had painful chilblains during the winter, constant chest infections, no money to replace worn out shoes, even soap and other necessary things were hard to afford. In the end, we had to obtain credit just to live, and I still owe the money for that: I can't go through it again; my sick body won't withstand it.

I have been through C.B.T. Twice in the last 2 years, and I'm currently having anxiety therapy –  though I fail to see how my mind can be trained to be content and happy about the prospect of becoming homeless and/or living in abject poverty. A counsellor from therapy sessions I attended a few years back said that I should look into the sky and imagine that each cloud was a thing causing my depression, and then I was to watch it float away. I thought at the time, 'Yes: I shall name each cloud: 'Breakfast', 'Lunch' and 'Dinner', and wave goodbye to them', because I couldn't afford to eat that day. In comparison with some of the families in the report though things haven't been too bad for me; I'm just trying to focus on the good things in my life as much as possible, but it's the uncertainty that casts a dark shadow over you, knowing that bit by bit the government is chipping away the foundations of a lifestyle that once provided a modicum of stability, dignity and security. 

Could wider family help out in these situations? The report noted that: 'Some disabled households began resorting to charity and family support in the absence of state help, but how these often proved short term fixes rather than sustainable solutions' (p.77). Yes, I like others have had offers of help, with my family and friends offering to make up the difference in rent once the 'bedroom tax' is levied, and help with payments toward utility bills. People are going to have to be very careful when considering whether to accept help though. The DWP 'Decision Maker's' guidance notes are very complicated regarding this, and depending on personal circumstances, decision makers could reduce a benefit by dividing the amount received by 52 weeks; people could be much worse off as a result.

There is some help out there nonetheless. Claimants are generally only allowed to access charitable trust grants for help with utility bills, certain other charitable payments, and food-banks. These payments do not affect benefit income, which is one good thing at least, but it smacks of government withdrawing from their finacial obligations toward the poor and vulnerable, and many people would rather suffer than approach charities for help because of the stigma involved.

Yes, if ever there was a perfect poverty trap a government could devise for disabled people, welfare reform and cuts in services are it. As 'Unknown Destination' concludes:

  'But do we know – do we have even the faintest idea – how many people will suffer from all four of these budget-driven changes, and what this will do to their household income and quality of life? Until the Government is able to answer such questions, and start thinking abou the cumulative household impact of reform rather than each in isolation, the human cost of the austerity measures will remain overlooked and policy will be all the worse for it.' (p.91)

As the study noted, the 'destination' was 'unknown' to some disabled people, but I think that many of us now realise that the journey's end will not be pleasant, with even more welfare cuts in the future to contend with. It will in fact become a humanitarian disaster in our own country, and by the time this government, or any subsequent government, recognises this, it will be too late; the damage to the lives of millions of vulnerable people will be complete: most of it will be irrevocable.

Clarebelz 27th June 2012

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