Steve and Asha were invited to a friends today so steve could learn to knit, he is very pleased with his progress on this front. They also went to get my meds from the pharmacists, its good not feeling sick for a while, though my stomach is still sore. Asha is very excited about her trip tomorrow.

We were also visited by a lovely friend, who calls in when she is up this way, its always beautiful to see her, and i really appreciate her kindness to us all. Those chats keep me strong, at times. Its such an isolating illness.

My main carer has been off for a week, the cover has worked very hard to try and make things as easy as possible for us all, she really has risen to a difficult challenge well, and deserves to be very proud of herself. It will be good to have my main carer back tomorrow, just because she is quiet, and less bustley, but the council carers are trying there best to meet my very complex needs. Next week we start training up a new girl, to replace my 25 th carer, in the last 25 months, hopefully that turn around will slow down generally now though….we will see;)

Had another letter about my esa….. Sigh… Wonder which bit of ‘cannot make or take phone calls…’ oh to be well again.

So why has today been so hectic? Well i finally fell asleep at gone half 6 this morning, having had massive sickness and body temp fluctuations in the night. My carer came and changed me this morning, and my prescription is still in the back of the pharmacy van, which has broken down.. This is essential medication! After over 12 months of asking, were finally getting medical waste bags, which means, our wheelie bin wont be full of my continence pads any more, yes i am double y incontinent due to ME . My gp took away with him a copy of ‘ voices from the shadows’ on tuesday, its an excellent video on the true impact of severe ME on human life. We got a phone call to say friends are coming to visit. I can normally only manage a short visit, and when people live so far away..its hard to ask them to visit. It really does me good when they come though, and asha loves the company.

Asha has had a tough two years, but she has coped very well, thanks to having a brilliant father, us having a few very good friends, and a home edd group who have constantly offered her support and a safe place to play. She is involved with the young carers now, and on saturday, is looking forwards to a trip to the zoo. On tuesday she starts her manderin lessons. And this friday is off to visit some friends with steve. She has played at home for a lot of the last two years, but she is happy, and although at times, weve considered school or flexi school for her, she has flatly refused such ideas.

She has recently been delving through beanos, and harry potter videos, like a child possed, luckily for us, a large second hand dealer, has kept up our trade relationship, and weve managed to get hold of old beanos at a reasonable price to satisfy her hunger! She also went through a massive myths buster obsession and was fascinated by the victorian era for a while.

We have also had a few long journeys to home edd activities, which all take there toll on me, but we are getting slowly better..Asha enjoyed another party yesterday and is continuing to enjoy her new friends. We have been to see some of them at a CAMP and were having a fabulous time as a family right now..

I just wish i wasnt as ill…

Thursday 27 August 2009

Dear Hywel Williams,

I am writing to you over the current green paper, on disability and
social care. In it there are plans to hand over the money given out in
Attendance Allowance and possibly DLA.. to local councils, and for them
to use the money to provide the services.

As often the amount given in A.A / DLA is far less than the council
could buy the services in for, and the impact this would have on
families, and vulnerable people would be devastating, I urge you to act
on this.

The DLA care could not pay for the amount of care my husband provides
me with. 24 hour care, 7 days a week.

If we lost the income of the DLA care, we would not be able to afford
to heat our home, to the level I need, I would not be able to maintain
my independence, or live at home with my daughter as the council would
not provide us with oil and wood for heating, as part of a care need!

Currently my husband tenders to my most personal care needs, and i
would lose my dignity if I were to be expected to have these needs
tendered to by another person, indeed it would cause difficulties
within our family, as my young daughter would find this confusing.

This suggestion that they are going to hand over the money from the
most vulnerable and poor section of society.. the elderly and disabled
to the local government for care, is outdated, and goes against the
independence which we are lead to believe that those with disabilities
have a right too!

Please also could you ask for an explanation of why such unclear terms
were used in the green paper when people’s future is at stake and they
are supposedly being consulted with.

Finally please could you let me know what the party’s policy on this
matter is.

Yours sincerely,

V……….

A government green paper has revealed proposals to stop paying ‘disability benefits, for example, attendance allowance’’ and hand the cash over to social services instead.

Under the plan, current claimants would have their disability benefits converted to a ‘personal budget’ administered by local authorities and used to pay for services – not to spend as they wish.

Once the green paper consultation period ends in 100 days time, if an almighty row has not been raised, it is likely that both major political parties will see the lack of outrage as a green light to end both DLA and AA.

We’re looking for a minimum of 1,000 claimants, carers and support workers to join our campaign to save these benefits from being abolished.

http://www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cuts

However I have always been told its illegal. well :-

http://www.retellrecorders.co.uk/legal/home.htm

Happy times are ahead, as my trusty tape recorder is about to come out :d

Vicki xx

Welcome again to the world of waste. In this new edition of The Bumper Book, Matthew Elliott and Lee Rotherham have unearthed a staggering £101 billion of government misspending – all paid for by you, the taxpayer.

But perhaps more usefully, the government could cut the tax burden of every household by over £4,000 a year.

Mind blowing isn’t it?

Here are just a few examples of where all of that money has gone:

* £280,000 on a conference addressed by Blair and Brown on value for money in the public services.
* £400 million on ‘cost control’ for the Olympic Games.
* £3 million by tax inspectors at HM Revenue and Customs on flights, including £2.1 million on flights to Scotland.
* Over £16 million on the creation and upkeep of VIP lounges in Heathrow and Gatwick despite the fact they are not government-owned.
* £100,000 on assessing whether £400,000 reportedly spent on modern art for seven hospitals was money well spent.

tax payers alliance

The problem? We dont have enough money to cover the deposit we need. Because of the DWP and us going bankrupt we need to have 6 months rent up front.

Donations to our pay pall accepted.

ARCH MEMBERS’ HELP NEEDED

You will probably have heard that the launch of the Contactpoint database – the index of all children and young people in England – has again been delayed because of security concerns.

A major difficulty has arisen in ‘shielding’ records on the system. Because the security of Contactpoint cannot be guaranteed, the records of some children will be hidden. This applies to those escaping domestic violence, to children whose whereabouts need to be kept secret following adoption/fostering or because their family is in witness protection, and also to children of public figures.

Unfortunately the government did not make plans to ‘shield’ children’s records as soon as they were put on the national database, instead leaving it to local authorities to apply shielding once they had joined the scheme – a process that will take place gradually over many months. This would leave some especially vulnerable children’s records open. The full story appeared in the Guardian: http://www.guardian.co.uk/education/2008/sep/02/schools.children1

THIS IS WHAT WE ARE ASKING YOU TO DO:

We want as many ARCH members as possible – ‘all of you’ would be fantastic – to contact your local authority children’s services to ask them the following:

(a)        When will the local authority actually join Contactpoint? The government has set out ‘deployment slots’. Which one is your local authority in?

(b)        What are the arrangements for ‘shielding’? How does a family go about applying to have their children’s records shielded?

(c)        Can the local authority guarantee that shielding will be applied as soon as a child’s record is put on the national Contactpoint database – even if the LA is not joining for several months?

(d)        How will people in the area be told that they need to apply for shielding? Not all vulnerable children will be known already to the local authority – people don’t tend to ring them up to say “Hi, I’m running away from a violent partner and I’ve just moved into your area!”

(e)        Will young people be told how to apply for shielding on their own behalf?  What happens, for instance, about girls escaping forced marriage? Can they get their records shielded as a matter of urgency?

Please can you get as many answers as possible, and then email me with the results: terri@…

It’s really very important that we find out quickly what is going on at local level.

Thanks,

Terri

Terri Dowty

Director

Action on Rights for Children

www.arch-ed.org

www.archrights.wordpress.com

020 8558 9317