Tuesday, February 01, 2011

Good news

This post is not wedding related. And truth be known, I feel guilty about posting it at a time when cuts and reforms are playing merry hell with the lives of so many of my disabled friends.

I appear to have won at Social Services, and now I don't know what to do with my good fortune.

As part of Steve going back to work, I've been reassessed. Steve's new job involves a much longer commute as well as regular trips further afield, and that in turn means that there's less expectation on him to provide my care.

This is going to get complicated so first I have to explain about Direct Payments.

Direct Payments are paid into a bank account in my name and I am the only person who can access that account and distribute the money. All contracts are between me and the PAs or agencies who I choose to employ. This gives me control over my care. To give a simple example, I could decide to skip showering on a Thursday in order to 'carry over' enough time for a long bubble-bath on Friday.

What I can't do is take the money and spend it all on sweeties and computer games. Social Services closely monitor the account to make sure that it is only spent on items and services approved in my Care Plan. I can't invest it, and it doesn't even count as my money on my tax return. And once it's gone, it's gone - if I have long bubble baths every day for a fortnight and then realise there's no money left in the account to pay the agency for the rest of the month, that's entirely my problem and my responsibility.

Supposedly this reduces the admin costs for Social Services as they are no longer the first point of contact and no longer have to manage the carers or negotiate with agencies. They identify needs and then supply the money. Choosing the best way to spend the money to meet those needs is no longer anything they have to worry about.

So I've been identified as needing 45 minutes of help with personal care each weekday. I have some interviews (sales pitches) with agencies this week and hopefully something will be set up soon. Once it's set up, there's also scope for us to call in an agency carer should I need one when Steve's away from home for longer periods - even if we had to add the extra money privately, the 'account' would be in place.

They've also changed my social care. Previously I got money for the stated purpose of employing a PA for three hours a week to help me do "out and about" things I needed help with. This was about £30 per week - most of it for the wages of the PA, the rest to cover specified necessities like Employer's Liability Insurance, placing job adverts when I need to hire a new PA, that kind of thing.

Now, my assessment says I am at risk of social isolation (the internet doesn't count, who knew) and therefore eligible for two days per week of "daytime opportunities", but thankfully identifies that it would be inappropriate to send me to a daycare centre for two days per week. So what Social Services are doing, is taking the money they would spend on my daycare centre place, and giving it to me as a Direct Payment. It is rather more than £30.

We've identified that I will continue to employ my PA for three hours each week as a baseline, but after that, it's looking a bit blank, because I simply can't think of much to do.

This is apparently an indicator that I have already become used to social exclusion.

I don't just have to use it on PA wages. For instance I asked if I could use it for taxi fares to go to a knitting group or to a friend's house, situations where I don't need a PA sitting right there with me for two hours, but I need someone to make sure I get safely there and back. Apparently I can, as long as I get a receipt, and keep a log of the purpose of the journey (which must be 'social').

The best and worst of this system is that there's no list of approved uses. There couldn't be, because there's so many different things a person could do. I have to think of something I'd like to do, and then find out how much it costs, and then they'll tell me whether I can use my Direct Payments account for all, none, or some of those costs.

It's also a bit experimental. My Independent Living advisor tells me I'm the only person on her caseload so far with this setup. So no clues from that direction.

Ideas, anybody? So far all I've got is an Action Point of going to the library on Wednesday to see what clubs and groups and things are running in the area.


rachelcreative said...

Great news indeed! And a good problem to have I think.

It's kind of a personal decision how you want to be social. And I guess it's difficult sometimes to schedule a lot of social stuff when you're working because part of the problem is having the energy wellness resources to participate.

How about assistance in you catering for social things at your place? Like help with organising a regular dinner party, or family dinner or book group at yours or whatever - rather than the emphasis being on going OUT all the time?

Trips to cinema, theatre, gigs, art galleries - perhaps with a 'carer' or with friends but with paid assistance to get there so your mates don't feel put on.

Visits to library or maybe swimming pool with assistance perhaps?

I don't know if this is helpful or even what you meant when you asked for suggestions. But I did want to thank you for the blog post as you've given me something to think about whether I can be brave enough to face the assessment and the prospect of employing people to help me out (the employing bit sounds so scary). Thanks for the idea - I've sent my hubbie some reading!

Mary said...

Oh, definitely a good problem to have! I'm thrilled that the system is doing what it's supposed to and I really want to make the most of a rare opportunity.

I had ideas like swimming and maybe even horse riding but it's the old spoons budget again - can I justify knackering myself out for the day and compromising my ability to work and do housework and stuff by doing such a frivolous activity? I have to try and get my head around the idea that socialisation and relaxation aren't frivolous, they're actually quite important, part of my overall health, important enough that my access to them is (for now) enshrined in law and budgeted for by the council.

Help to host things at home is an interesting idea, though, that one hadn't even occurred to me.

Helen said...

Hi: long time lurker here, not sure if I've posted before. It's so nice to hear you be able to actually say something positive about the benefits system for once!

Anyway, fwiw from a total stranger, I think rachelcreative's ideas are great. Also: Do you have a laptop? Are there any good internet cafes in your area, the kind with good coffee and nice sofas? I know that I will often go to a cafe even if I'd only be doing the same things I'd be doing at home, because it gets me out the house and there *is* a social element, you never know who you might get chatting to. And at an internet cafe it's socially unremarkable to be there on your own, and you've got a chance of interacting with people your own age, which is going to be a problem with daytime activities otherwise.

My only other thought is further education classes of some kind. Can you spend the money on course fees as well as things like taxi fares?

Anyway, I hope this isn't too weird coming from someone you don't actually know, and I hope you manage to find something fun to do.

Mary said...

Hi Helen! It's always good to hear from people.

I have no ideas about local internet cafes but it's definitely another idea that's worth looking into.

Adult education was one of the things I asked about and one of the things they were unsure of. If I were on means-tested benefits or unemployed it would be fairly easy to get the fees at least partly paid or waived, but Steve's earnings mean we aren't considered to be poverty-stricken and the fact I'm self-employed means a qualification can't be said to potentially lead to a job. They're looking into it for me but I'm not hopeful.

rachelcreative said...

Another thing that occurs to me is networking events that would be good for social interaction and work too.

For instance if there is a Social Media Cafe monthly meeting in a city near you and getting assistance to get there. When the Birmingham one started I went a few times and it was really useful. Fun to meet twitter people in real life and also I generated some work from it too.

There may be other networking opportunites that may be good for business too?

Little Miss Adventure said...

I know it depends on spoons, but would a taxi to a hydrotherapy pool be enjoyable and a good use of time/money?

I'm sure if you found the right riding school, they would appreciate that your situation might mean that you can't make it on the day.

Mary said...

Networking events scare the bejesus out of me, to be honest. It was four months before my Prince's Trust meetings stopped having a laxative effect.

Hydrotherapy is an interesting idea. I know when I was doing swimming with my PA under my original setup, they got a bit funny about whether something was for social benefit or therapeutic benefit as therapy was supposed to be NHS-funded even though I'm not eligible for that sort of thing on the NHS.

Achelois said...

I just cannot remember if I have even posted on your blog previously for which I apologise. I must say it is so refreshing to read a 'good news' benefits story at the present time. I am definitely social isolated because of my condition. Although I do drive i am often unable to do so because of pain etc. I admit to not even having the first idea of how to get the assistance you write of. I get dla but that is the only benefit I claim. I love to say I knit and last year took it up after many years having knitted as a child (you know the thing - blanket squares) so I knit badly but I seem to be knitting only in my head this winter. My hands being somewhat uncoperative. I have been trying to pluck up the courage to go to a knit and knatter club held at our local library weekly for about a month now but just cannot pluck up the courage. Worried that my knitting is too rubbish and because of my condition I don't actually get to 'do' much so would be boring! I am afraid I would get stressed at the thought of having to go out to 'do' something and also the knock on effect of tiredness although I admit I do not get out enough. So am struggling a little on ideas I am afraid. I shall be interested to read on what you finally decide on and what works out etc. In the meantime, good luck with it all.

Mary said...

Hi Achelois

The bad news is that I think it can be a bit of a postcode lottery to get help from Social Services. Back home, I was told there was no point applying, I moved over here, my new GP gave me a number to ring to arrange my first assessment as a matter of course.

The good news is, the assessments were pretty simple. The social workers I've encountered do seem to be more about trying to get clients what help they can, than about being 'gatekeepers'.

Currently if you get a care package you *have* to be offered the option of a Direct Payment if you're deemed capable of understanding it and managing it. If you can understand and manage it with assistance, that assistance should be provided.

Do try and do the knitting group thing. I've never been to one where people compared their projects in terms of skill - in fact the usual thing to do seems to be to bring something quite simple so that you can actually talk to people instead of hunching up with an intricate lace project and snapping "shut up! I'm counting!"

I happily admit that some nights I've gone to knitting group and hardly said anything. It's still nice to be in a group of other people and well worth a try.

Katie said...

Just seen this. Fabulous news all round, congratulations.

Don't feel guilty. At Christmas I won at Access to Work big style, and I have no idea how. I feel bad for the people who've lost, but in a way that makes it even more outrageous if I don't use the support I've been awarded.

You've got it, use it. Pub, knitting, Discworld appreciation group? Cupcake baking? I'm only half joking, my best mate is doing a cupcake class.


Enjoy it