Friday, November 30, 2007

Wordploy by the WP

The Washington Post has published the winning submissions to its yearly contest, in which readers are asked to supply alternate meanings for common words.

And the winners are:

1. coffee , n. the person upon whom one coughs.
2. flabbergasted , adj. appalled by discovering how much weight one has gained.
3. abdicate , v. to give up all hope of ever having a flat stomach.
4. esplanade , v. to attempt an explanation while drunk.
5. willy-nilly , adj. impotent.
6. negligent , adj. absentmindedly answering the door when wearing only a nightgown.
7. lymph , v. to walk with a lisp.
8. gargoyle , n. olive-flavored mouthwash.
9. flatulence , n. emergency vehicle that picks up someone who has been run over by a steamroller.
10. balderdash , n. a rapidly receding hairline.
11. testicle , n. a humorous question on an exam.
12. rectitude , n. the formal, dignified bearing adopted by proctologists.13. pokemon , n. a Rastafarian proctologist.
14. oyster , n. a person who sprinkles his conversation with Yiddishisms.
15. Frisbeetarianism , n. the belief that, after death, the soul flies up onto the roof and gets stuck there.
16. circumvent , n. an opening in the front of boxer shorts worn by Jewish men.

Direct Payments...policy at odds with the law

In December 2006, a Social Care Officer assessed Mum as needing 24 hour support, 7 days a week. The review was prompted by the Community Psychiatric Nurse owing to Mum’s deterioration since her last formal review in 2004 when she was discharged from the local Royal Infirmary.

The CPN and Community Care suggested that we look at Direct Payments as a means to help provide the support and care that would enable Mum to stay at home. Her experience with institutionalized care has been traumatic. Everyone involved in her welfare (me, (PoA & Welfare Guardian), CPN, GP, Social Care Officer, OT) agrees that she is best cared for at home and that the attendant risks ( etc) are minimal/contained.

In May-June, a meeting was held to review the DP option and it was decided that we were met the criteria and therefore should apply. Present at the meeting were the CPN, Social Care Officer, P & K Community Care Planning Officer. The DP Co-ordinator/Facilitator was due to attend but couldn't as she was on long term sick leave.

I put together a team based on my input and the services of a nurse and carers hired privately. The nurse agreed to cover 4 x 24 hr periods (4 days), with cover provided both by her and by a colleague, similarly qualified. The remainder of the time would be covered by me and by carers who were on PAYE rolls elsewhere but who had sufficient free time to take up self-employment.

In August, I emailed Home Care for a progress report and for advice on the next step. It emerged that the Social Worker had been transferred to a new department, the head of Home Care local office was off on extended sick leave, ditto the Direct Payments co-ordinator. No-one was in charge and Mum's case had not been reassigned. After two months, it was taken up again by a new Social Case Officer and a stand-in replaced the DP Co-ordinator.

In November, the Community Psychiatric Nurse asked for an update but heard nothing. However, Home Care did indicate that perhaps they would reassess need. The CPN’s view is that there is little point since the care is unlikely to be less or different than it was before.

The care required is supervised companion care for someone who is mentally unable to live life normally, taking normal decisions and actions. Mum is not bedridden, though she walks with difficulty, and her medical care is minimal (administration of 3-4 tablets a day). She needs help with dressing, washing, toileting, eating, drinking, going to bed at a normal time, being as active as possible, being taken out/socializing, and being encourage to retain communication skills.

Direct Payments provides an advisory service to assist carers to set up and administer the scheme. While they are helpful, LA policy seems to be at odds with the law. One of the big issues is whether to employ carers or whether to enlist them as self-employed personal care assistants. That requires each person to be registered with HMRC as self-employed and accordingly pay NI2 contributions. HMRC’s view (and they are becoming v picky about DP employment) is that “The case law tests normally indicate that a care worker who looks after a client in the client’s own home is likely to be an employee”. Sterner still - they warn that it is for the Inland Revenue to determine who is and isn't a self-employed carer - not the client, nor the carer.

DP says that there is no problem recruiting people to care for Mum and registering them as self-employed. They advised putting a card in the local supermarket as the best way to recruit carers since there is a need to have a team composed of about 6 carers to cover for sick-leave. According to DP rules, each must be registered as self-employed and disclosure-checked. Understandable. Laudable, even. But who for a pittance, will register, pay NI and be disclosure-checked for a part-time, maybe job?

Having found someone who is able to care for Mum and having trialled 4-5 periods of care that has been paid for privately, we were anxious to keep the same “team” in place. Dementia care is very different from caring for someone who has cancer – the dementia sufferer has no understanding of why strangers are in their house or apparently “caring”, therefore qualifications on paper are not enough.

DP says that the maximum award to which we would be entitled is £ 407, based on the average cost of residential care (£600 p/w) minus the average contribution paid by clients. For self-employed carers, they will contribute £12/hour, for employed PAYE carers around £ 11/hour.

The rate of pay, that we have negotiated with the nurse is much less per hour for 24 hour care, based on the fact that the sleepover, is mostly an undisturbed night. DP has agreed in principle with the proposed schedule of 4 x 24 hour periods and they are happy with the arrangements for the remaining 3 days of the week. But according to Scotland’s Personal Assistant & Employers' Network (an advisory body reporting to the Scottish Executive), tthe arrangement would contravene minimum pay legislation and working hours because each tranche of cover is over 24 hours. Despite the fact that there are many private carers who provide care in situ (for example for respite care), SPAEN says that to work for 48 hours is against the law and almost certainly disqualifies the carers for working for other clients thereby also disqualifying them from s/employed status.

In fact, the hours worked are a matter for negotiation between the provider and recipient. The nurse is not “on duty” 24 hours a day since Mum’s pattern of care is that she sleeps at 8.00 at night, and rarely gets up before 9-10 am. There is a bedroom provided for use by the nurse. But SPAEN reason that were anything to happen, it would be the nurse who is responsible and that we could end up in an employment tribunal.

More controversial still, is the view held by Carers UK, the Disabled Living Foundation and the National Centre for Independent Living – all agencies whom carers are encouraged to contact for free advice re DPs – that the local authority is failing in its obligation to provide free personal care and is acting in contravention of the 1990 Single Shared Assessment Act (?) in constructing an award that is arrived at artificially.

The agencies argue that if Mum was assessed as needing 24 hour care by the Social Services, we should be awarded a sum that is much more realistic in terms of setting up care in situ. Based on the agencies’ own figures and commercial market rates, that works out at around £ 1200 per week (day care + sleepover rates of around £ 80 a night). No LA will pay such a large sum to an individual – so there seems little point in arguing the toss.

But you have to ask: what are carer’s rights?

In addition, SAEN say that the public liability policies recommended by Direct Payments don't stand up to muster if the carers aren't properly registered. And if the carers are self-employed, apparently they should be registered with the Care Commission. No mention of this in the Direct Payment guidelines that I've seen. Alternatively, we should secure the services of an agency - but agencies charge £ 14-15 per hour for carers who are far less qualified than the nurses. These are charges that would cripple the £ 400 award and render the whole completely unworkable.

Direct Payments has asked for disclosure checks or sight of existing. I have a disclosure check in place, so too do two other carers. Disclosure Scotland says that the self-employed do not have the right to ask for their own disclosure checks. Direct Payments says that an Enhanced Disclosure check suffices – SPAEN says that it is place (not person) specific – therefore each worker needs one.

I have no idea what we are entitled to, whether the Local Authority is acting appropriately or not. I have asked for copies for Mum’s assessment and mine, as principal carer, but nothing has been forthcoming. I think I’m entitled to a copy by law but I have no idea.

I suspect the Social Care Officer and the DP stand-in has no real idea either how to implement Direct Payments for personal care. Not their fault, since they are all new to the post and new to the case. I’m pretty certain that their remit is to carry out LA policy cost-effectively but we are all ignorant of what is required by law. But I have a legal and filial duty to sort out care – and at this rate, Mum will be dead before we reach first base.

Currently, Mum receives 1hr 30 mins of free personal care a day.

LiveActive....but only if you can tick the box

A week or two ago, I gave a presentation to the Pinky Chickenbutts, a new post created by the LA in their wisdom since they did away with the old post (which did much the same thing) in the "Quality" reforms of 2004. I spoke about the role of carers, like me, who have carer creep. Gradually the business of caring obliterates everything else that you do in the rest of your life. Not poor Mum's fault. If she were cognisant, she would be appalled.

So in a Bold Move, and recalling the lovely days when I trotted off to the gym each lunchtime and started the mornings with a 4 mile run or 50 lap swim, I called the local leisure centre to enquire about membership of Spectrum. It's a fabulous project that gives all members complementary access to any number of facilities in the LIve Active scheme. All to do with getting every Pinky Chickenbutt off its butt and strutting its stuff. But as membership is £25 a month, it's a bit beyond the carer's wallet. There is a concessionary rate of £15 a month for those who can haul in their disabled/impaired dependent - or for those living on benefit or income support but nothing for those of us who occasionally earn more than £80 a week and therefore are disqualified from any kind of support.

Tom came to the rescue. "Since you don't fit into these categories, let me call HO and see if we can do something else" he said. Dear good kind Tom. The world should be full of Toms. Tom called back - "If you can prove that you are a carer, we can offer you the concession". "Would a doctor's note be OK, or something from the Community Psychiatric Nurse or Community Care?" I asked. "Sounds good to me," said Tom.

In euphoric mode, I emailed AlzScot to see if we could put it in our newsletter so that all carers could benefit. And as I am at war with HMRC and Home Care over Direct Payments, it was good to have something to celebrate. Letters came in from the Sunbeams in Community Care and the CPN testifying to my dutifulitudiness as a carer, so armed with these and the application form to join Spectrum, I made my smiley way to the centre.

"I'm really sorry" said Tom. "Stella in Marketing says she can't do anything until April next year. They've recognised that you're an Untapped Market Opportunity though and we do want to do something."

Poor Tom. Yesterday, I had told him that he had made my day. Today, he felt really bad. But at least I'm a UMO, so that's something isn't it?

Back to sit on my pinky chickenbutt then.....

Thursday, November 08, 2007

Got to laff

Home Care, in their wisdom, are now dispatching carers (sorry, SCOs - Social Care Officers) from another office 15 miles away because apparently, there are none left in our neck of the woods! Met one poor soul this morning with a very puzzled Mum. SCO Robertson* had neither case history, nor meds, and diddlysquat idea of what was required. (You could have felled an ether equivalent of the Amazon, with the number of profiles and updates that I have emailed to TPTP). All she had was a name, a keysafe number and an address in a place that she didn't know and for which there is no streetmap. Laff, dear Reader, this is Caring.

Meantime, LGP returned happy and contented from her excursion to Edinburgh only to turf our supper in the loo! It had been defrosting in the sink in one of those freezer bags but LGP couldn't work this one out. Next you know, there are carrots in our bathroom. Asked if I would accompany her while she drove to the happening places so that she wouldn't be imprisoned in the house. Ye Gads.

Mr. Mac the gardener put in an appearance yesterday. Mum was delighted and skipped girlishly from the conservatory to the backdoor. Mr Mac had a sort of hounded look about him, but he definitely has potential as a mantlepiece man. (Aunty W's term for collectible men, of whom she has a goodly number!)

Mum accused Mary of winking at him. "I'm all right there", said Mum.

And so you are, Mum. So you are.