Hooptedoodle #100 – The Price of Self-Respect?

I had sort of hoped that my 100^th Hooptedoodle might be a bit more festive than this, but I had a strange, rather disturbing day yesterday, and I’m still wondering about it. This is not intended as a whinge, nor a sad story of any kind, really, but it contains some elements which seem to be symptomatic of how society works nowadays, and that causes me some disquiet.

Once again, it involves the situation of my mother. My mum is elderly, and she is disabled. She had polio as a child, and – though she recovered – she now suffers from what has become known as Post-Polio Syndrome, which is paralysis caused by progressive degradation of the nerves which were affected by the polio all those years ago. It’s OK – it’s a fact of life, and my mum isn’t given to feeling sorry for herself, so we all just get on with it. To supplement what we can do for her directly, we have arranged for her to have a carer visit every day, and this works wonderfully well. The carer (let’s call her Paula) is a marvelous woman – before she retired, she helped to look after my late sister (who was mentally handicapped), and she and my mother became great friends. They have a private arrangement which works perfectly. Paula comes in for a couple of hours each day during the week, and an hour a day at weekends. Mum pays Paula for her time and her expertise, which is only right and proper. With additional visits and outings organized by the family, we try to ensure that my mum doesn’t lack for either care or interest, and we recently installed a stair lift in her house, which has proved to be a great thing, and has given her control of her own home again. So it works, but all of this obviously isn’t cheap. That’s how it is.

The local County Council did some valuable ergonomic and safety work – putting in grab handles and leveling door thresholds and generally making her house suitable for a wheelchair, and we were also notified that she might qualify for some financial assistance from the Council. So we were encouraged to apply for it – every little bit helps, as I’m sure my grandmother - or was it Tesco? - used to say.

My understanding of these things is not great, but it seems that, if a disabled person resides in a particular county, the local authority has some obligation to assist them, to ensure that their quality of life is acceptable. This may involve putting people in an institution or a home of some sort, or it may result in sending out care-workers and specialists employed by the authority to help these residents, or it might provide specialist equipment. Or, in these days of reduced budgets, there is a direct payment alternative, whereby the disabled person makes their own arrangements for care, in their own home, and the authority makes some financial contribution to help with this. This has a number of advantages, not least being that it is cheaper for the local authority and gives the client more independence. Excellent.

Yesterday my mum got a visit from the keeper of the Council’s purse strings, to sort out the details for a regular direct payment which had already been agreed in principle. Since I have Power of Attorney over my mother’s affairs, both financial and welfare-related, I was there with my official notebook.

The lady from the council (let’s call her Fiona) and I instantly recognized each other as trouble. She recognized me as an awkward beggar who might have the odd opinion, and I recognized her as one of a generation of people with degrees in political correctness and regulatory compliance who gradually took over the Human Resources world and made life frustrating in my last few years at work. These people are astonishing – in the unlikely event of their accidentally allowing something to happen, it will not be their fault, whatever it is.

Fiona told us the following:

1. An informal relationship between my mother and her friend is not good enough. Since their agreement requires that Paula is told when and where to work, a formal contract of employment is required. The Council’s legal people will advise us. 
2. If the Council is contributing to care costs, Paula is not allowed to be self-employed. The Council will even oversee her relationship with the tax authorities.
3. Further, she will have to replace her current professional certification with the new (post 2011) PVG registration (in compliance with the new Protecting Vulnerable Groups scheme - this will cost her some £70), and the Council will not proceed with any agreement until they know what her new PVG number is.
4. Further, since she is now an employee, she should be entitled to holiday and sickness pay.
5. Further, since my mother will now be an employer, she will require to take out employer’s liability insurance (about £135 per annum) – the Council can advise. This will, naturally, require someone to come and completely check my mother’s house, its wiring, the state of the stairs, the lighting, the cable on the kettle, etc.
6. Further, a stand-alone bank account will have to be set up to record every penny spent on care – the Council will require a paper monthly statement from this account. They will also require a very detailed paper return of all care-related activities and expenditure – every month. How some of their poor old, demented clients handle this is a matter of interest.
7. Further, all payments to Paula must be made through the Council’s own direct salary system, which they will set up for us if we (which means I) go to their office to discuss it with them. I may not pay Paula by online transfer from a bank account of my own choice, which has been the arrangement to date.
8. Any decisions, changes or problems, and any debates about what Paula may or may not be asked to do must be referred to my mother’s Care Manager at the Council, whose decision will be final.
9. This whole wonderful edifice, by the way, is known as the county Centre for Inclusive Living’s “Independent Living Service”. At this point, I could feel a loud snort coming on. It begs a few serious questions about definitions of Independent, Service and even of Living.

I had a quick consultation with my mum, and with Paula, and I responded to Fiona-from-the-Council thus:

1. The proposed amount of financial aid is rather less than £50 a week. While this would be gratefully received, it represents approximately one-fifth of the total outlay on care that we already have in place, and to change everything in the way proposed is an extreme example of a tail wagging a dog. 
2. The relationship between these two ladies, who have been close friends for years, is very important, and it would be changed in a very unfortunate way by introducing any form of contract of employment – completely inappropriate. All the spin-offs from such a contract – insurance, holiday pay, external vetting and control of payments – are non-starters.
3. The degree of restriction, regulation and general interference, and the amount of administrative grunt, are unacceptable. These arrangements may well work perfectly for clients who are very hard up, or who require the use of agencies, but it does not fit with my mother’s situation.
4. Thank you for your time and for the offer, but we shall decline it. The money on offer is not worth the hassle and the bureaucratic oppression.

We did not tell her to stick it in her ear, but it was a close call. I believe that Fiona has never been rejected in this manner before, and she was very visibly shaken. She insisted on passing us the papers she had already completed, and she said to my mum that, if she changed her mind in the future, here were the details for reference.

My mum replied that, since she is 88, there isn’t really a lot of future for this to happen in.

I’m not sure how I feel about it. There is something in there about the value of self-respect, of independence, of freedom from bureaucratic control. I am convinced we are better off without the Council’s contribution, thank you very much, though I don’t expect that either they or that nice Mr Cameron will trouble to thank us for saving them some expense.