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We want to hear from you: please tell us about your experience of the online community.

Unfair charging policies by Councils for non-residential care ....

Lottgelady

Hi, my name is Rachel and am looking for Disabled People who are being hit by unfair charging policies for support by their Local Authority.

#socialcarefuture (Please sign up here Social Care Future) is a growing movement of people with a shared commitment to bring about major positive change in what is currently called “social care.” It’s for those who want to take part in imagining, communicating and creating together a future where what we currently call social care makes a major contribution to everyone’s wellbeing and which, as a result, will enjoy high levels of public – and hence political – support.

Did you know that LA charging is 'discretionary' and that one LA in the UK doesn't charge anything at all for their support? Others however seem adamant that screwing the last penny out of someone disabled is acceptable!

Did you also know that if you are able to work and are disabled, that no charges (or very limited charges) for support are made? In my opinion this is a 'divide and conquer 'scenario and is discriminating against disabled people who have higher support needs, which is unfair.

A recent Judicial Review against Norfolk County Council agreed and details can be found here -

JUDICIAL REVIEW LINK
SH, R (On the Application Of) v Norfolk County Council & Anor (Rev 1) [2020] EWHC 3436 (Admin) (18 December 2020) (bailii.org)
but a simpler version is explained in this letter which has been sent to every relevant LA in the UK this week.

LETTER LINK
Director of Adult Social Care, (mailchi.mp)

It would be very useful if anyone suffering from these charges was to fill in this survey below, so that we hear stories from all over and can see what impact these charges are having on disabled peoples' lives.

SURVEY LINK - <moderator temporarily removed link pending review>

This will become part of a wider campaign to end charging and the postcode lottery of care altogether. We are campaigning for a National Independent Living Support Service (NILSS) which is compliant with the UN Convention on the Rights of Persons with Disabilities (CRPD) which the UK Government has signed and ratified https://www.rofa.org.uk/nilss_project/

I am sorry that this message may not be very accessible to some of you, but I am somewhat 'technically challenged' when it comes to doing things like this! If you are having trouble, please message and I will try and find someone who may be able to help.

Many thanks for reading and completing the survey and stay safe!

Rachel

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Comments

Cher_Alumni

Hello @Lottagelady and thank you for joining our community, and informing us about the Social Care Future campaign.

I've temporarily removed the survey link you included as we need to run through a few details with you first to ensure it's safe for our members. If you could please email the team at community@scope.org.uk so we can do this, we'll then reinsert the link once all is verified as okay.

Also, I've moved your thread to our Events, research and opportunities category which is our home for all things that include a survey

Thank you for understanding and good luck with the campaign.

Lottgelady

Woodbine - yes that does sort of sound fair, but they are trying to charge me £200 a week for a daily wash! That is 3/4 of my benefit income (plus very small pension of £44.70 a week) and I have to pay a mortgage and funnily enough heat and eat! I have £50 in savings.

If you can afford it then of course it is fair, but people on benefit incomes through no fault of their own shouldn't have to be worrying themselves into an early grave or having to sell the roof over their head for a wash!!

Lisatho11987777

My mum csnt get help brcsusr she has her own house and a private pension if you pay 200.00 it's less than alot of people the lowest here is 300.00 a week but if you had to pay it all it would be alot more

If its seven days a week over a hundred pound a week goes towards paying the carers and the company have part of the payment and social services

@woodbine thsts quite a good price my mum pays 850.00 for carers going in three times a day at my brothers

Lottgelady

@woodbine - I may well need to do that but around here agencies are charging £44 a visit and have tried to get a carer to come to me since August 2019 with no luck, hence this package! What I wasn't told was that I was paying it all direct, so that came as a bit of a shock ....

@Username_removed - yes I am challenging the decision as paying that on top of my other bills will give me a monthly deficit of over £500 which cannot be sustained. I was struggling anyway hence selling the roof over my head as I need roof repairs totaling £11300 which I do no have. It just seems to me that we aren't allowed to have any life at all after the basics are covered. Hardly a life, it's an existence - especially during the pandemic .... I have 2 dogs who are my constant companions - they are almost telling me to get rid of them as their insurances are expensive, and despite being eligible for PDSA help, they say there is no clinic near me (which I know is wrong as there is one in my nearest town) but it's a postcode lottery ....

That's the thing though - Hammersmith and Fulham have decided that they will NOT charge for care, and that charging for care is discretionary - the Care And Support Statutory Guidelines state that "the local authority is bound by their duty to promote your wellbeing. They have a power to waive your contribution and arguably should do it when your actual expenditure is high and paying a contribution will have a negative impact open your wellbeing."

SCOPE in their research have found that on average, disabled adults face extra costs of £583 per month, and that one in five disabled adults faces extra costs of over £1,000 a month even after they have received welfare payments designed to meet those costs. On average a disabled adult’s extra costs are equivalent to almost half of their income (after housing costs). Disabled people’s money doesn’t tend to go as far: on average, £100 for a non-disabled adult is equivalent to just £68 for a disabled person.

Lottgelady

I am aware that there is no simple solution .... whilst able to work I did so and miss it greatly, but sadly after 23 lots of surgery I am left in a mess and unable to do so sadly.

I am trying to find people like me that are suffering with the charges - I am certainly UNABLE to pay this charge on my disability benefits and it will leave me with an income shortfall per month of over £500, so will be hugely in debt after 3 months.

The support I get is helping to keep me out of hospital, so there may be a case of CHC funding, but that would be a huge battle too. If I didn't get the support, then my hospital visits would be increased, and would presumably cost a great deal more?

I HATE being in this situation, I would far rather be able to work, go back to a job I loved and gave me a decent standard of living - this isn't meeting any standard, it is purely an existence and sometimes I wish I would get Covid and it would be over and done with, which isn't a nice thing to have to say at all ..... I was at my wit's end with my finances (as you just aren't 'allowed' to maximise your income in any way or they take it off you) before I received this shock this week, so not sure how much more I can take.

Ross_Alumni

Hello @Lottagelady

Welcome to the community, thanks for joining.

Getting access to care certainly can be a tricky task to accomplish, and even more so making it fully affordable in some cases. I'm sorry to hear you are struggling financially with it. Have you tried checking your benefit entitlement to see if you are receiving the full amount of benefit you are entitled to? You can use a benefits calculator here. The Money Advice Service may also be able to offer some useful advice regarding your finances, and you could always give Scope's helpline a call if talking things through would help you.

CHC funding sounds like it might be worth looking into, even if you aren't sure you will ultimately get anywhere with it there can't be any harm in looking into it and asking the question. Also might be worth taking your survey and concerns to your local MP.

It seems as though this situation has had an impact on your mental health, which is completely understandable. If you ever want to seek support in that regard, you should contact your GP. Alternatively, you can access help from places such as Mind, Samaritans and Calm.

Lottgelady

Hi @woodbine - would you mind telling me what care she actually needed? Nowhere is there anything that gives you a definition of what is included in CHC funding - my care is basically helping me to stay OUT of hospital so unsure if that counts, but it is really nothing to do with 'nursing care' whatever that is?

Lottgelady

Thank you @woodbine, looks like I will have quite a bit of research to do!

Cher_Alumni

Hello @Lottagelady

I'm just checking-in to see how you're doing? I hope things are a little better and the information provided on this thread helped.

Lottgelady

Hi @Cher_Scope

Things are the same - they have sent me a form which basically wants details of all my income, but only really gives me the opportunity to include in my expenditure my housing costs and virtually nothing else - I have sent them many times my full Income and expenditure form showing that I am short of income versus expenditure every month, but they don't give two hoots, this is their form and that's it - all my income is theirs to take it seems .... although they will give me an allowance for extra washing etc if I can evidence it - well the next time my colostomy bag leaks I will be sending them photos!!!

I am seriously struggling to go on, this isn't a life, it's an existence I have had enough of .....

Lisatho11987777

I am haveing the same problems with my mum if my mum was to go into a home we have to sign all her assets like her house and her money over to them they will give my mum an allowance every week any assets like her house and any money not used when she dies will be signed back over to the family

If mom has carers and cleaners and someone to help her do her shopping she has tovpsy 1,200.00 a week becsysr she has to much money and owns her own house to make the house relatively safe by takeing out gas appliances put all alarms on the doors and fall pads and change the front door and have a call monitor where she can press the pendant its going to cost my mum 8000.00

Then a monthly fee of 45.00 for the call monitor and my brother would have to be on call 24hrs a day

The social services said that for safeguarding reasons and for choice reasons they would rather my mum come and live with me as my brothers situation has changed it is very hard people work all the life and can't get any help

Lisatho11987777

We had a virtual meeting today my brother has power of attorney so it would have to be signed over to the care home its happened in places where I have worked as a carer if the house hasn't had to be sold or all the money hasn't been used then it gets returned to the family

Cher_Alumni

Hi @Lottagelady

Thanks for getting back to us. I've sent you an email to discuss some of the things you mentioned in more detail. If you could give that a read and get back to me it'd be much appreciated.