Contribution towards care

[Guest]

Hi Just wondered if anyone knew about anyone with MND who has has been assessed for contributing towards care.

My partner recieves Employment Support Allowance and Higher Rate Care ,
He has MND , he has no use of his arms , extremely limited use of his legs.
A woman from the council came out , wanting to see how much he pays towards rent, water, electric and gas . Did he have to pay for any eqipment - well not at the minute as the OT had him an electric chair and bed brought free of charge. She would not take into account a weekly food bill, taxis whereever he needs to go to the doctors , or visit someone . Phone bill , tv licence , credit for his mobile , and the list goes on was not taken into account . She said none of that was essential and all she wanted to know was rent , gas elec wa\ter
The next day she assessed him as having to make a contribution and sent a social care payment card - to use at the Post Office , he has to pay 84.60 per week out of his money . I think this is diabolical , this is more than he recieves in DLA high rate care which is 77.45 and with the mobility componant altogether DLA is 138 a week approx. Does anyone know if this is right please .

thankyou karen

[roy]

Hi Karen,

I have to say I am no expert in these matters, like many on the forum it comes as a shock filling in forests of forms and fighting for scraps,
I however did get some really good advice from the carers assosiation in oxford who put in in touch with a benefit advisor who called to my house,the lady who I saw had previously worked for the inland revenue and was a great help to me, I know some of the of the good people on the forum have been given good information from the CAB and indeed from MND helpline.

best wishes.

Roy.

[pete]

Hi Karen,

Like Roy said you need an advisor to visit you who knows the benefit system, We are now paying the price for the thousands who claim benefits ,without any justification, You read about them everyday in the press on the TV, but very little after saying the scroungers have been made to repay it , You and your partner fit into the bracket of Valid cases and therefore you will be scruitinised , unlike the very competent liars and cheats who drain the system dry ,

AS for the lady from the council , appeal , and keep doing so ,they work for you ,and as such ,have a duty of care to do , dont give in ,and fight them , lets hope you get your rights and life gets a bit easier for you both, I think anyone who has found themselves being disabled will only to well know how utterly degraded it makes you feel ,being treated by some one who is supposed to help you ,and only makes matters worse , Good luck and wish you well .

regards
pete

[MikeFD]

Hi Karen,

Please contact MND Connect about this, they will be able to advise you of any appeals process and put you in touch with your Regional Care Development Adviser who should also be able to help. The MND Connect telephone number is 08457 626262 or you can email them at [email protected]. (Details are also available from the MND Connect tab at the top of this page).

Good luck with everything,

Mike.

[iwontgivein]

not all are scroungers!!!

maybe the DLA is meant to be used for what it stands for..

Just because some like myself have MND, why should it boil down to the government paying out more when most with MND get a lot more money than what you call "scroungers" when DLA is for that. plus many have other illnesses including terminal ones

OMG, some people are just so bitter

get used to it, there was scroungers as you put it since the beginning of the benefit system, i think all should be means tested..

its not the governments or anyone else fault that some have MND

[magic]

The last message was very harsh.nI am currently being means tested alongside my husband who has MND. I am 60 year old and am facing retirement as a full time care and a futxure of financial hardship as my small but needed savings will be used towards adaptations. I have never used the term scrounger towards anyone who receives benefits and have marched to help secure people's rights. I still feel My husband's DLA is used to enhance his life and make life manageable as I watch the love of my life fail.
Magic

[magic]

The last message was very harsh.nI am currently being means tested alongside my husband who has MND. I am 60 year old and am facing retirement as a full time care and a futxure of financial hardship as my small but needed savings will be used towards adaptations. I have never used the term scrounger towards anyone who receives benefits and have marched to help secure people's rights. I still feel My husband's DLA is used to enhance his life and make life manageable as I watch the love of my life fail.
Magic

[iwontgivein]

This message was not aimed at you Magic, not in anyway was you to feel any bad than you feel now...

...
not all are scroungers!!!

maybe the DLA is meant to be used for what it stands for..

Just because some like myself have MND, why should it boil down to the government paying out more when most with MND get a lot more money than what you call "scroungers" when DLA is for that. plus many have other illnesses including terminal ones

OMG, some people are just so bitter

get used to it, there was scroungers as you put it since the beginning of the benefit system, i think all should be means tested..

its not the governments or anyone else fault that some have MND

[pete]

This message was not aimed at you Magic, not in anyway was you to feel any bad than you feel now...

...
not all are scroungers!!!

maybe the DLA is meant to be used for what it stands for..

Just because some like myself have MND, why should it boil down to the government paying out more when most with MND get a lot more money than what you call "scroungers" when DLA is for that. plus many have other illnesses including terminal ones

OMG, some people are just so bitter

get used to it, there was scroungers as you put it since the beginning of the benefit system, i think all should be means tested..

its not the governments or anyone else fault that some have MND

Maybe you would like to say who it was aimed at then, As you could not be bothered to see fit to address it to anyone, Further more , if you know how to get more from the benefit system than we do please let us know ,We have had to fight for the single benefit we qualify for.

As far as i know pretty much everyone on here is suffering from MND and no one has said anything about other conditions ,And its got nothing to do with being bitter as you say, and you would know this how , There are Scrougers in every possible benefit ,as you rightly say and we have gotten used to it , The sooner the better those who see this as an option , will soon find it isnt with the reforms now going on, I for one will gladly welcome the day only those who really are entitled to get them do so, Just for your information , we have all worked and payed into the NHS some for many years and now for no other reason, not self inflicted ,just sheer bad luck have found them facing MND and all that entails ,

[john]

Pete,
I have read and reread several times the post of you and iwontgivein and I still don't understand his/her point. I am not sure if it reinforcing your point or critising you.

I agree with you. DLA seemed to be the easyiest hurdle we had to jump after Irene's diagnosis but I am not sure why that was given other peoples experiences. After that almost everything seemed to turn into a battle with the bureaucrats who run the NHS and the local social services to get anything. They seemed willing to agree that the need was real but then unwilling to deliver what was actually needed. The wheelchair centre was the same.

They agreed that Irene was entitled to continuing care provision in October last year after we had applied for it at the beginning of March.
They also agreed to reimburse the amount we had paid between March and October which had been about £4500. I am still waiting for that repayment and I got a letter the other day saying that ordinarily they would repay Irene but because she has died would I prove I am entitled to the refund. Given her state of health over the last 12 months of her life it should be obvious , even to them, that the only way the care could have been provided for was if I paid for it. It beggers believe. God knows what became of the welfare state.

Rant over.

john

[pete]

Hello John,

Hope your ok , and reading your post, well confirms my views about so much of the so called care in this country, Hope you manage to get it back, just wondering how on earth they thought you got the care needed for Irene, as you say anyone with a brain might have worked out you had to pay for it , as no one does anything for nothing these days , what beggars belief for me is how they arrive at the charges as soon as it has the disabled tag assigned to it , that goes for aids and wheelchairs and anything pretty much is so grossly inflated , when you can least afford it ,Oh well that's life,

As for whoever he she is , have no idea, maybe the choice of word , perhaps i should have used benefit cheats would have been more accurate, you take care .
pete