To think disabled people and their carers are being screwed yet again?

[Bingbong21]

Disabled DC. Their father walked away 2 years ago as he couldn't cope with them.

Both my DC in their own right are entitle to someone to claim carers allowance for them. I can only claim for one.

Officially carers allowance is for at least 35 hours week care. DC1 does 9-2.30 5 days a week at school so 27.5 hours. There are 140 remaining hours, DC1 sleeps approx 3-4 hours a night so that's 28 hours. Leaving 112 awake hours with just me, over triple the 35 hours of carers allowance expectations. Both children are throughout their EHCPs noted to require 1-1 care. DC1 when out needs 2-1. Still just me.

Carers allowance is £68 a week for 35 hours care. This for one person is less than £2 per hour.

The short period we had respite (6 months whilst we were in crisis) the carer was paid £10 p/h.

They of course receive DLA which doesn't cover their disability costs.

The loss of the £20 uplift has been devastating for us. I lost my well paid job because of DC1's needs. We went from a 2 parent, 65k combined income a year to lone parent. I can't get any form of childcare for DC1 to enable my return to work. No one is willing to fund the 1-1 support DC1 needs to access holiday provision and universal credit childcare costs does not come close as there isn't an additional allowance to cover the extra care a child may need to enable them to attend. Likewise, EHCPs do not cover after school provision.

Budget just now has specifically penalised those of us not working, the disabled and their carers will be the hardest hit. I have no idea how we will survive winter.

AIBU to think its those least able to change their circumstances who are being most punished?

same boat but i would say im worse off(not a competition i know)

single mother ,both kids disabled.

1 gets dla the other pip both need 24/7 care.
Neither sleep and i dont drive.
Buses are hit and miss on the day per kid and local taxis refuse to take us(im in a small Welsh village so well known as everyone knows each other here)

we also home educate so dont even get the break of school that most get(they dont "do" special schools here)

we do love home ed though as it brings us so much freedom so school isnt an option for us.

boys are 17 and 11
6ft 3 10st 7
5ft 4 11st 7

im bathing and dressing both so physically hard work.

i get uc as a single mother and not eligible to work as a carer. and money for 2 kids with the disability element
not bragging but financially we are very well off. physically and emotionally im on my knees

we get zero help either of any one professional
i get carers allowance for 1 but like you said deserve it for 2.it should be per child

Government encourages domestic violence. Lots of abuse causes disability then victim is never ok again. Not cos of the abuse but cos of bad way disabled are treated.

@TurnUpTurnip you are being unfair. I didn’t get the uplift either, ESA and PiP, but I’m still fighting against the cut for those who did because I know just how shit it is for all of us on benefits. 😡

I'm not sure if you are aware but a case will be going through the courts challenging the fact people on legacy benefits never got the uplift so you might get it backdated.

Might... can’t pay the bills or buy food with “might” we all know that it’s not going to happen!

I never saw anyone who got the extra kicking up a fuss for those of us that didn’t so why should we feel sympathy when it’s now being stopped? No one gave a damn that some of us didn’t even get any extra.

Why would I fight against it? Didn’t see the people who did get it fighting for those of us that didn’t 🤦🏻

Why would I fight against it? Didn’t see the people who did get it fighting for those of us that didn’t

I did, I also saw numerous threads here about it and threads about the £500 one off payment on Tax Credits.

So let’s see, it’s wrong to be bitter that you didn’t get it to begin with, but it’s not wrong to be bitter it’s being stopped which the op is? I didn’t see any threads on here at all about anyone fighting for those that didn’t get it

It's shocking how disabled children/adults and their carers are treated. £67.60 is a pittance. Several friends/people I know turned down for any kind of respite for children with very complex needs. Many threads on mumsnet about huge numbers of rejections for DLA.

When residential care for a child with the highest care needs costs hundreds of thousands a year.

£1.92 an hour. 35 hours per week. No overtime pay.

Just getting to bed as one has been up until 2am.

@HikingforScenery

Have you looked into personal budget? You could use it to hire a support worker/PA for your DC so you can work.

Not sure if it’s the same everywhere but in my la for personal budgets/ short breaks it’s specifically pointed out that their purpose is not to provide childcare to enable parents to work. We got turned down anyway when I applied but I don’t know anyway who gets more than a couple of hours a week so not enough to work.

@TurnUpTurnip you have completely and utterly missed the point of my thread.

@Bingbong21

The carers/disability benefits being deducted is another thing that needs a massive change and is pretty outrageous.

Between the DC they get nearly £700 4-weekly DLA which I frequently get told is loads and we have a high income. Their disabilities cost far more than their DLA :(

The dla isn’t deducted in the uc calcs just the carers as it counts as taxable income but dla isn’t.

@TurnUpTurnip create your own thread then, but arguing with other people struggling by isn't helping at all is it, its just making you come across as really nasty and spiteful and is nothing to do with the thread.

OP it's criminal isn't it, the lack of support for those who are disabled and carers is just absolutely deplorable. As is the fact men can just opt out of financially supporting their children if they wish. I don't agree with much of americas justice system, but they take non payment very seriously. I'm sure you have already, but have you spoken to CAB to check you are getting everything you are entitled to?

I don't disagree with you OP that disability benefits and responsibilities & low income awarded to those providing 24 hours day care to disabled person or child isn't great

It's just that * ... "Carers allowance is £68 a week for 35 hours care. This for one person is less than £2 per hour.* ... " carers allowance isn't meant to be a wage, it is the equivalent of unemployment benefit which is equally low , is alongside DLA PIP and AA and entitles you to gain NI contributions and access other benefits without having to prove your are seeking work requirement.

When you see it like that , it shows how fits into other low income benefits

It sounds tough OP and you can request a reassessment for your disabled children and request direct payments for additional support (which you buy in from a PA) to care for them based on high level of disability needs. You have to fight for it and keep saying it's individual needs not service led. Put a complaint in to your local authority children's services dept if need be. Complaints are dealt with separately by a team - look up the legislation they are using and ask for reports that show how they made decisions.

You can do a SARs (subject access request) to get copies of reports and majority of the case notes for Child in Need assessments done previously

[quote Bingbong21]@turnupturnip not being funny but when I was forced to switch to UC I found myself £135 a month worse off than when I was on legacy benefits. So you know...

And even working it out with the UC uplift I was still worse off than when I was on legacy.

It is not a race to the bottom. It is awful whether on legacy or UC.[/quote]
I'm surprised that you're worse off on UC, OP, as usually carers are the same or better off (under UC, claimants are still entitled to the carer's element even if not claiming CA, whereas under legacy benefits this wasn't the case).

It may be worth running a check on Entitled To, or contacting CAB or similar, to make sure that all the right elements are included in your claim.

But I agree that carers are treated like shite by the system.

It's really hard to read how an OP with such high care needs for get disabled DC is struggling financially. Other than DWP benefits including disability benefits UC and carers allowance there isn't anymore money available. But I do hope OP can challenge local authority decision re getting in care hours for a personal assistant (PA) to assist with some of the additional disability care needs her child needs and maybe a notability car through DLA mobility component as that is a scheme really worth accessing if you can

As another pp said "entitled to" or turn2us benefit calculators can sometimes guide you to what else you might be entitled to

It's just that ... "Carers allowance is £68 a week for 35 hours care. This for one person is less than £2 per hour.... " carers allowance isn't meant to be a wage, it is the equivalent of unemployment benefit which is equally low

I suppose the crux is that someone on unemployment benefit (rather than ESA etc or disability themselves) will likely only be on it for x amount of time. Someone who is a carer will probably be a carer for a long time- there isn't a chance to get a job in the future and increase earnings. It should be equivalent to a job imo, especially as many are forced into it as there is no support.

@TurnUpTurnip

I'm not sure if you are aware but a case will be going through the courts challenging the fact people on legacy benefits never got the uplift so you might get it backdated.

Might... can’t pay the bills or buy food with “might” we all know that it’s not going to happen!

I never saw anyone who got the extra kicking up a fuss for those of us that didn’t so why should we feel sympathy when it’s now being stopped? No one gave a damn that some of us didn’t even get any extra.

Actually, lots of welfare rights organisations made representations to the government about this, as did many individuals working in welfare rights.

I got a mealy-mouthed reply from my (Tory) MP saying that she was committed to helping people with disabilities, and no reply whatsoever from Therese Coffey.

My colleagues and I were unanimous that people on legacy benefits weren't offered anything extra in the hope that they would switch to UC of their own accord, rather than wait to be switched.

CAB have already gone through everything as I needed a hand to get the bedroom cap lifted.

We've gone through the entire process for PA hours. Local authorities are allowed to determine eligibility. Other than a 6 month period when we were at a crisis point because I meet their needs we can't access it. There's also a major crisis being fed back through a local parent carer group that even those with hours granted there is currently a major recruitment crisis :(

@Rhubarblin

It's shocking how disabled children/adults and their carers are treated. £67.60 is a pittance. Several friends/people I know turned down for any kind of respite for children with very complex needs. Many threads on mumsnet about huge numbers of rejections for DLA.

When residential care for a child with the highest care needs costs hundreds of thousands a year.

I know 2 people who succeeded in getting their children into year-round residential placements because they simply couldn't cope.

They both had to fight tooth and nail for it, despite one of them being disabled themselves and the other having been hospitalised after her son assaulted her.

Yes as you say above there is no one to deliver the hours half the time even if you get them. And carers can be off sick etc and there is no one to cover so you still have to do it yourself. We have 2 nights a week for our youngest as he is on a bipap at night and needs someone to watch him due to difficulties breathing and severe seizures. One of the 2 carers allocated has been off for months and so some weeks we get no respite to allow me to get at least the odd nights proper sleep.
I am aware that we are lucky to get those nights so I am not complaining but we had no support for many years for our children despite them both requiring round the clock care and only get it now due to the use of the bipap ventilator at night. The bar for qualifying for respite is ridiculously high.

Who the hell could vote YABU?

Believe it or not there are people out there who think DLA shouldn't be paid for children and who think you shouldn't get Carers Allowance for your child because you have to care for them anyway. I've seen posts to that effect on MN several times over the years.

@LakieLady oh yes it's shockingly hard to get a residential school/residential place, my friend went to a tribunal over it and it costs thousands in legal fees they can't claim back. This was to get the school name on an ehcp.

I should have said in my post I meant if someone were to put their disabled child into care under a section 20, it could cost social services hundreds of thousands. I was thinking of a scenario where the parent refuses to care for or have the child at home anymore because they are simply at breaking point due to no respite, ss would have to step in.

[quote Rhubarblin]@LakieLady oh yes it's shockingly hard to get a residential school/residential place, my friend went to a tribunal over it and it costs thousands in legal fees they can't claim back. This was to get the school name on an ehcp.

I should have said in my post I meant if someone were to put their disabled child into care under a section 20, it could cost social services hundreds of thousands. I was thinking of a scenario where the parent refuses to care for or have the child at home anymore because they are simply at breaking point due to no respite, ss would have to step in.[/quote]
It's not just ,that ,my LEA have agreed to fund a residential school for my friends child ( after a long fight) but they are struggling to find a school that can meet the child's needs as they are so complex