Charging disabled people who need care and support is UNFAIR

matthewsmum29

I am the mother and carer of a severely learning disabled son.  I have started a petition on Change.org.
Disabled people have to contribute to the cost of their care and support. They will have undergone an assessment to decide what services they are eligible for. Then the Local Authority will carry out a financial assessment to decide how much they should pay towards these services. Many disabled people only have their disability benefits and after paying the Local Authority, they are left with barely enough to live on. This is unfair.  Please sign my petition.

https://www.change.org/Charging-disabled-people-who-need-care-is-unfair

L_Volunteer

Thanks for sharing your petition with us @matthewsmum29. I can completely hear how disabled people should have money left to live on after paying for their care and support.

You have mentioned being the mother and carer of a severely learning-disabled son. Is this something you have seen your son experience and, if so, how are you both managing at the moment?

We are all here for you and listening to you if you would like to share more with us. Hopefully, more people will sign your petition.

In the meantime, please don't hesitate to let us know if we can do anything to support you. Take care for now and we will look forward to, hopefully, hearing from you again soon 

matthewsmum29

Hello, my son was being charged until I challenged his financial assessment. Now he isn't being charged. I want my petition to highlight how unfair it is to make disabled people pay for their care and support. Hopefully with enough signatures, something can be done to change the system. If people stay silent, the charging will continue.

Oxonlady

Hi @matthewsmum29, I am charged £60 per week by Social Services that I can I'll-afford. They have not taken into account recent increases in food prices or gas and electricity hikes. Around four years ago I was only paying around £5 per week, so I'm actually a lot worse off financially now. Benefits have not increased by that much in the meantime, and I have no other income. My local council is very much into making disabled and chronically ill people pay as much as possible for their Care Charges. They are therefore placing restrictions on how I can spend my benefits. There is not a lot left at the end of the month to spend on hobbies. They don't understand the true cost of disability-related expenses and only what they consider appropriate is allowed.
I wish you success in your petition on Matthew's behalf, it certainly would help the rest of us! 

FactionParadox

You're so right. I'm a 28 year old disabled man who has to pay £300 a month for care contributions just so people come in one a day to ensure life critical medicine is taken and help me with things I cannot easily do like bending down to clean certain things. I never asked to be disabled, to want this assistance. Why in God's name would I go through life like this if I had any choice? They give with one hand and take with the other, we're not allowed to have fulfilling lives or hobbies. We're expected to sit down and be thankful for what able-bodied people get because they aren't disabled.

matthewsmum29

After reading your comments, it makes me angry that this is happening. 
I think the point about increased food prices and energy costs is important, because the Minimum Income Guarantee that Local Authorities use to calculate care contributions has not increased, which means that disabled people are worse off after paying for their care.
Also, the point about giving with one hand and taking with the other is right. My son has a personal budget (direct payment) and they were expecting him to pay for it out of his disability benefits. Please support my petition, so this unfair system can be challenged.

Lou67

@mathewsmum29

So sorry to read this it is so unfair and shouldn’t be allowed to happen. I will certainly sign your petition.
Your doing a great service for not only your son, but everyone else having to pay this.

Take care ❤️

Luna51

Hi @matthewsmum29 😊

We are expected to pay £80 a week for my daughter's care, she is not accessing this support at all and hasn't for the past 2+ years after the pandemic hit and she left college, she simply won't go out with anyone else but family members all of whom, live at home. 
After I demanded a new assessment (not had one for 3 years) they cut her money from £846 a month to £245 because she wasn't using it!! 
So, this money just sits in the account doing absolutely nothing, no flexibility to use it to support her wellbeing. 
I'm tired of dealing with it, in all honesty, it's just not worth doing anymore when the contribution is £80 a week. 

I have signed your petition, thank you for starting it.. 
 

Luna51

matthewsmum29 said:

Hello, my son was being charged until I challenged his financial assessment. Now he isn't being charged. I want my petition to highlight how unfair it is to make disabled people pay for their care and support. Hopefully with enough signatures, something can be done to change the system. If people stay silent, the charging will continue.

I am really interested to know how you went about doing this, any guidance would be really helpful. 

matthewsmum29

Hello Luna51, did they do an assessment before they cut your daughter's money? If her circumstances have changed, they need to do another assessment. Her care and support plan should set out the care and support she needs now.  As far as challenging the financial assessment, I did it on the grounds that my Local Authority's charging policy discriminates against severely disabled people. They denied that it does, but my son is no longer being charged.

Luna51

Hi again @matthewsmum29

Yes, I insisted on an assessment as they should be yearly but we hadn't had one for almost 3 years. A random social worker visited us and asked lots of questions, I told her the truth that my daughter struggles to go out with anyone but us. 
(the SW was quite rude and abrubt, and unbelievably ran her finger across a light switch in my hallway just before she left, as we stood talking! - my house was spotless on that day too! - I genuinely think she just took a dislike to me) 

My problem with all of it is that despite cutting so much of her money each month, she's still expected to contribute £80 a week regardless if it was £846 or £245 a month, it makes no sense to me.. 
Thank you for telling how you went about challenging the payments.
It's an outdated system that only benefits loca councils. 

Thanks again.. 

matthewsmum29

If your daughter is paying £80/week and they are giving her £245/month, they are making money.  That's wrong. You need to ask them for a new financial assessment. You shouldn't be giving them more than they are giving you. I wish you all the best.

Luna51

Thank you for this @matthewsmum29
I will speak to them again. 
I wonder how many other carers are unaware of this!

Take care too and wishing you all the very best with your petition ❤️

woodbine

I would make the point that in April all benefits will increase by 10.1%, my late dad had to pay for carers and it cost him £700 per month, but he could afford it.

Alex_Scope

Hello everyone,

We wanted to share that Dr Frances Ryan, who writes for the Guardian, is looking into this issue. If anyone is interested in sharing their experience with her, you're welcome to get in touch by emailing [email protected]. 

She says: 

“I know that social care charges are a long-standing issue in England but I’m really keen to discover whether the pressure of the cost of living crisis has made this worse for disabled people. 

“Are more disabled people struggling to pay their care charges in light of higher electric and food costs? 

“I believe regulations mean councils are required to leave care users with a minimum income guarantee. Are councils failing to recognise higher current living costs when they do their financial assessment? 

“What are the consequences of this? e.g. councils beginning debt proceedings; disabled people going without care.”

2oldcodgers

Not many people are going to agree with what I am about to say.
But, I have to assume that disabled people are either claiming PIP or Attendance Allowance.
As such the care element of both these benefits is for the the costs/extra costs that the disabled person has to pay - that is the bedrock of why both of these benefits exist.
I hear it all of the time - oh I pay for food, electricty etc with that benefit. That is not what the payment is for - it is for the costs/some of the costs for care.
Yes I will agree that some will find that even with that welfare payment there is a shortfall. That is what you should be arguing for a decent financial assessment and provision for this shortfall by the DWP.
 If you were in hospital and after 28 days you would have that element of those benefits removed from you to help pay for the care that is given to you in hospital by the NHS.
Obviously if you do not have care costs then you can use the welfare payments on other things other than care costs. Neither of us have these care costs but we are both disabled. Instead I use part of the care element to pay for Benenden private health insurance. I certainly don't spend it on the costs of living - food, fuel etc.

poppy123456

2oldcodgers said:

I hear it all of the time - oh I pay for food, electricty etc with that benefit. That is not what the payment is for - it is for the costs/some of the costs for care.

You are right, i will completely disagree with this! It's not the first time you've said this either. Benefits can be spent on anything you want to spend them on, there's no rules for this.

Some people have extra costs because of things like special diets so their shopping is more, some may have extra costs because of needing the heating on more during the colder months, i know i'm one of those.

I also used some of my PIP for my holiday abroad later this year. Warmer weather is better for my health conditions and means my pain isn't as bad as it is during the Winter months. Having those extra couple of weeks just as the weather here starts to get colder is worth it's weight in gold to me.

poppy123456

@Purrrrrrr you can refer yourself for a needs assessment from your local Authority. https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/ Once this is done it will determine if there's any help available to you.

If there's help available then you'll need to have a financial assessment, which will determine what you need to pay towards any help you receive. The same will apply to the people you mentioned in your comment.

Most people have to pay a contribution towards the help/support they receive.

The money will then be paid from direct payments, this money can't be used on anything they want to use it on. It can only be used for what's mentioned in their care plan.

My daughter used to receive direct payments, which i used to manage on her behalf so i have a lot of experience with this. The only difference for my daughter at the time was we didn't have to pay any contribution towards it because she was a dependent at the time.

2oldcodgers

poppy123456 said:

2oldcodgers said:

I hear it all of the time - oh I pay for food, electricty etc with that benefit. That is not what the payment is for - it is for the costs/some of the costs for care.

You are right, i will completely disagree with this! It's not the first time you've said this either. Benefits can be spent on anything you want to spend them on, there's no rules for this.

Some people have extra costs because of things like special diets so their shopping is more, some may have extra costs because of needing the heating on more during the colder months, i know i'm one of those.

I also used some of my PIP for my holiday abroad later this year. Warmer weather is better for my health conditions and means my pain isn't as bad as it is during the Winter months. Having those extra couple of weeks just as the weather here starts to get colder is worth it's weight in gold to me.

Yes there is nothing stopping someone spending their PIP/AA care payments on something else. But if they do that and then complain that they have to cover some of the costs of having care provided to me it seems ridiculous. Surely if you do have care costs it makes sense to use the welfare benefit to cover/part cover them instead of something else. Do you object to the care element for say PIP being stopped if you are in hospital for more than 28 days?

poppy123456

I was referring to your comment here.

2oldcodgers said:

I hear it all of the time - oh I pay for food, electricty etc with that benefit. That is not what the payment is for - it is for the costs/some of the costs for care.

Which you often mention in some of your comments so i took that as meaning that "we aren't supposed to spend it on anything else"

My comment was not referring to the costs that a lot of people have to pay towards the care they receive. Which is why i advised Purrrr that a lot have to pay towards the care they receive.

I'm not saying the huge amounts that some need to pay should be as high as they are but that's for another day.

2oldcodgers said:

Do you object to the care element for say PIP being stopped if you are in hospital for more than 28 days?

No, not at all. Disability benefits should be stopped when in hospital for more than 28 days.

RestingSquirrel

I completely agree.  An cousin of mine has carers help her at home and pays almost £400 to her LA as part payment for her care. She is old school and always wants to pay via cheque through the post. One month the cheque must have got lost.  Within 3 weeks of the payment being due the LA sought the services of a debt collection service.  Just 3 weeks. My cousin, who is elderly and disabled, received a letter stating that she would be receiving home visits from a debt collector etc etc.  She was petrified and cried for days until we got it sorted.  '

Furthermore, during the time we were sorting things out with the collection agency, the LA, as the monthly payment had been missed (cheque missing), stopped paying towards her care and with immediate effect wanted almost £900 a month from my cousin. How????.  They gave no warning, no reminder, nothing. 

My cousin also used to have a care review with the LA every year until recently. They are now doing a review every 3 months.  They are doing everything they can to try and force my relative into a residential home to save having to pay care fees. My cousin owns her own home and would have to sell it.  I have queried this on my cousin's behalf, asking why she is being singled out for three monthly reviews and did this apply to all the people they provide care for? Funnily enough the communication has stopped and my cousin has had no more reviews.