Guest Blog - Not A Bedtime Story - by Tirza Waisel

 By Tirza Waisel,

Back in September I was put in touch with two very angry carers, who had frustrating experiences with Barnet social services, and wanted to start an action group. The person who had brought us together knew me from my activism in Barnet Alliance for Public Services, and asked me to help them set the group up. That's how I met some of Barnet's heroes, three of which have been guest bloggers here in the recent months, and the journey of CADDSS – the Campaign Against Destruction of Disabled Support Services - began. Along the way, others have joined us, some of them people with disabilities and some family carers, and this has been my biggest personal gain: I've met some truly amazing people and am privileged to work along them in CADDSS.

However, the part of collating the evidence which is the basis of the CADDSS campaign really gets me down. I stopped counting the times it had brought me to frustration, rage and tears.

Let me tell you now a bit about one aspect of our work that is keeping me awake at night, The Fairer Contribution Policy.

John [all the names were changed] is a highly skilled middle aged tradesman.  He had travelled the world and worked all over it in his trade, until an accident at work injured his back and turned him severely disabled. John was persuaded by his social worker to accept his Personal Budget, the money spent by social services on providing his personal care, in the form of Direct Payment. This means that social services are putting the money they approved for John's care costs in a designated bank account, from which he pays his care worker's salary, after paying the The Disability Syndicate the charges for managing his affairs as an employer.

When I first spoke with John he was desperate as the council simply clawed back money from his Direct Payments account as his 'contribution towards his care costs' according to the 'Fairer Contribution Policy' ('Fairer', mind! oh, how I love this “laundry of words”...). Now John could not afford to pay his care worker for the 1 hour in the morning to get out of bed, wash & dress + a bit of cleaning and cooking, and half an hour in the evening to get into bed. He now employed his care worker only for 3 hours a week.

'So, how do you you get out of bed in the days she doesn't come?', I asked John, 'I try to crawl out of bed, but in most cases I fall, then manage to get up slowly using the zimmer frame for support', was the answer.

This got me straight on the phone to Social Care Direct, explaining my concern that this seemed a severe case of being put at great risk due to care charges and the failure of the council to carry out their duty of care. I asked for John's needs to be assessed again now, with the reduced support he gets.

It turned out that John, like many other intelligent and capable people, couldn't face the Financial-assessment form and sent it back with crucial information about his outgoings which are related to his disability (what is called 'disability related expenses') missing, so the Financial Assessment department concluded he has a lot of money...

These outgoings includes paying for things most of us do for ourselves as we go along: shopping, going to the barber, laundry, etc, which John has to pay separately to different people. Being disabled means needing help and having to rely on other people; if you are living on your own with no family, you normally have to pay people to help you with these.

My phone call yielded some quick fruit and John's 'contribution' was somewhat reduced, so now he can afford to employ his care worker 1 hour in the morning every day. However, this is still short of covering all his needs. The implication of this shortfall is that he stays in bed-clothes all day, as he has no one to help him into bed at night and cannot dress/undress by himself; when he has to go out for appointments, his care worker who is also a friend of John's, comes to help him voluntarily, in her own time.

Over the next few weeks I kept chasing the matter with the Financial Assessment Team and with the duty social work team, till one Friday afternoon I got on the other end of the line a social worker who was almost crying with frustration. He explained that John is indeed on the waiting list for re-assessment, along with 69 other service users...

We are aware that the pressure on adults social workers in Barnet from their team managers, themselves under pressure from top management and the councillors in charge, to turn over cases quickly is such, that those team leaders are forced to assign to their staff unrealistic number of cases that they know will never get to be seen. The criteria for getting the desired assessment of needs is by urgency. So, for instance, a member of CADDSS who recently had a severe fall as a result of trying to do something that his care worker would normally do, and found himself in A&E, will probably get a better place in the queue for the social worker now.

And so the waiting lists are extended, and hence the new scare I heard of lately, the new risk exposed: a service user told me he was pushed to borrow money in the grey market to pay for his care costs, as his little savings which he had used to pay for his personal care dwindled. How much interest he pays? He didn't know. How long will it take him to repay it? He forgot to ask - he was just so relieved that he has some money to pay for his care for a little longer...

All these are called in the professional jargon 'safeguarding issues'. When vulnerable people are exposed to risks of physical harm, psychological stress and potential exploitation, it is the role of social services to protect them. Who will protect them when it is the policies of social services themselves that are the cause of these safeguarding concerns?!

Back to John - what can I tell you? This saga is still going on.

Promises and phone calls come and go, workers from organisations to which the services were outsourced contact John then disappear, even a real social worker left a message promising a needs assessment on John's answer-phone, then vanished without leaving a trace (before carrying the assessment, needless to say).

Once, a floating support worker from the outsourced service visited, but he wanted to hear that everything is OK and kept looking at his watch (poor guy was probably under pressure to fit an unrealistic number of home visits in a day), so John fell for him and didn't feel comfortable to bother him with everything that WASN'T ok.

These are just examples. Such stories are numerous and are just the tip of the iceberg, no doubt.

You may think these are extreme cases, and other people, like Barbara, who cannot afford any more to go out for a café from time to time or visit friends, as she cannot afford to bring a bunch of flowers and doesn't like to come empty handed, or Mary who feels depressed because she can't buy her grandchildren the small gifts she used to be able to spoil them with, are just moaning. But they both feel very frustrated with 'councillors who think I should be stuck between four walls just because I am old and disabled'. And frankly speaking  – I don't think that being able to maintain these small normal life pleasures of social and family engagements is too much to ask for.

Personal Budgets and the Direct Payments of them, are part of the Personalisation Agenda, brought in by the New Labour government. 'Personalisation means thinking about public services and social care in a different way – starting with the person and their individual circumstances rather than the service', according to a definition by the Social Care Institute for Excellence, SCIE. Sounds good, right? I was really enthusiastic about it at the time.

Well, the problem is that not long after Personalization was rolled in, it became apparent that this wonderful ethos of giving disabled people 'choice and control' over their care, over their lives, boils down to the format of funding the care. It was an easy way to transfer the responsibility for organising and providing the care services to the people who need them, so that councils can tell disabled people 'we gave you the money to care for yourself, now it is your problem how you do it', rather than retaining the responsibility to provide the care to vulnerable people, on our behalf as a society.

Now with the economic crisis and the cuts – disabled people are simply too easy a target for clawing money and councillors just couldn't resist the temptation. It seems as if the people in the top of Adults Social Services and the councillors in charge of the Fairer Contribution Policy are aware that even very capable people find the Financial Assessment forms daunting and won't fill them, or won't fill them correctly; even the advisers in some of the charities that are meant to help people fill them are not entirely clear how to do it. But instead of sending a staff member to every service user to help them fill the form with the best interests of the user in mind, they take the easy route and conclude that anyone who didn't fill the form can afford to pay for their care. Thus, the very people we entrusted with ensuring the quality of life of those of us who are disabled, are the ones bringing on despair and risk to vulnerable people's health and well-being.

One question that remains unanswered is who determines what circumstances should attract services? Who defines a person's needs?

The questions we have been asking time and again in Cabinet Resource Committee and Overview & Scrutiny meetings all went back to asking just that: how will you, the council, who holds the ultimate duty of care towards vulnerable people in the borough, decide what needs are to be funded and which needs are 'luxury'? What guarantees do we have that disabled people's quality of life will not be compromised when only their very basic needs are taken care of? The answers turned out to be empty reassurances that this would never happen.

To my horror, since I started interviewing people as part of our CADDSS work, I discover that in reality even the basic needs of disabled people in Barnet are neglected.

[To be continued]

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* Tirza Waisel is an active member of Barnet Alliance for Public Services, and a member and facilitator of the action group CADDSS, the Campaign Against Destruction of Disabled Support Services - Guest blogs are always welcome at the Barnet Eye