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Original poster

To appeal sister’s benefits?

113 replies

toappealthisdecision · 10/04/2025 07:22

Younger sister (in her 30s), I am her primary guardian as parents are incapacitated themselves unfortunately.

She has complex diagnoses - autism, ADHD, dyspraxia, dyscalcula, mild/borderline learning disability (IQ 70), a lot of mental health stuff (on 3 psychotropics including mood stabilisers) but no concrete diagnosis. She has epilepsy (generalised since childhood), asthma and IBS. She was queried for a genetic syndrome, they think possibly fragile X via my father - but not sure.

She has never worked or earned a wage. She lives in supported living scheme with 24/7 on site carers, although overnight they are not in her flat but are just down one flight of stairs on a sleeping shift - no waking staff overnight.

I can’t see her coping with a job. She does a voluntary thing 2 hours a day,, and she has a 2 or 3 basic qualifications (ie about the level you’d expect of a 11 year old) and can to an extent do kitchen portering and handle a till, again to a very limited extent. But she can’t do any of this to a level she would get paid for. No one would employ her. Reading age is about 9, writing is far lower.

She has zero idea of value of money or impulse control. Socially she is years and years behind and can be very disinhibited. She struggles to keep relationships and doesn’t know what is and isn’t appropriate. She really needs someone with her all the time who knows her and can help her - if she gets upset or overwhelmed she can go into sabotage mode and has been sectioned on 136 a few times because she’s a danger to herself and others. A lot of self harm and violence towards others. She’s also doubly incontinent for psychological reasons and struggles to keep herself clean.

She will never not need care. She doesn’t see it this way and believes she is going to find herself a neurotypical girlfriend and get married and have a lovely house with pets.

Her benefits have changed recently and she’s been told she’s losing £400 per month as she’s not allowed ESA anymore; so will lose severe disability payment - also has to change to UC. She will possibly have enough to live off but only just - ie she will struggle to pay for utility bills, will have a very, very basic standard of living.

I don’t know if that also affects council tax and housing benefit but suspect it will. she also has to pay a chunk towards her care that goes up every year.

Our local council have just made the step of closing down vast majority of learning disability and elderly care services - 70% of all council employees have been let go, most sheltered housing, care homes and similar are gone, no care at home workers, and there are now no day services either. Sister no longer has a social worker, he’s been made redundant as he only worked part time. I don’t know anyone is going to take over but I doubt it - because she is borderline IQ and has some family around she is not classed as highly in need.

I work full time but I only just earn enough for my own bills despite being band 5 NHS, I can’t afford to pay for her too much as I wish I could. One parent is in a care home and exists on £45 per week for personal spends, the other wouldn’t and couldn’t for various reasons.

She is however, only getting the lower rates of PIP, which makes me think we should appeal? Their argument is she can walk, eat and wash but she can only do these things with a trained adult or often 2 adults.

I’ve talked her through what I can and have explained I am prepared to try and appeal. Is it worth trying? I can’t believe her benefits can just drop by that amount so quickly.

There doesn’t seem to be any real support or advice out there for anyone in this boat, it’s not what I expected at 34 to be trying to sort out! I’ve got a couple of relatives who are my rock at the moment but just trying to find independent opinions on what to do

OP posts:
Aknifewith16blades · 10/04/2025 12:43

OP, for support and guidence for you, you might find it helpful to check out https://www.sibs.org.uk/

Sibs - for brothers and sisters

Sibs is the UK charity for people who grow up with a disabled brother or sister.

https://www.sibs.org.uk

Themadhatterr · 10/04/2025 12:42

But you will not get SDP with the new Universal Credit

OriginalUsername2 · 10/04/2025 12:36

It’s always worth appealing. Some say expect to appeal. Absolutely do it.

fortniteplaya · 10/04/2025 12:35

Appeal!! There is currently a 69% success rate for people that appeal.
Disability Support Project are a charity that can help I believe. I haven't used them yet but intend to when my adult daughter gets migrated from DLA to PIP.
The DLA forms were hideous to fill in, dreading it.

KitsyWitsy · 10/04/2025 12:32

EnjoyingTheArmoire · 10/04/2025 12:05

This is incorrect.

Whilst the Tories tried to convince everyone that UC would mean more money for all this is simply not the case.

I was migrated across a few months ago, and as a disabled lone parent I am £360/mth worse off due the difference in rates between ESA (with premiums) and UC.

I haven't magically become less disabled in this time, and will lose my transitional protection when we need to move house over the summer (due to dc's disability).

The two are not equal.

Show quote history

I get that makes things difficult for you. It isn’t fair though that you were £360 better off than other disabled people on different benefits?

Everyone does need to be on the same system for fairness.

ByBoldOP · 10/04/2025 12:21

Hi @toappealthisdecision

No other advise but an appeal is always worth a try.

Could I PM you ? My DD has similar needs but is much younger. I wondering how she was when younger and if needs increased? We are struggling now but unsure if level of n ed will be consistent, improve or get worse

Discoprincess6 · 10/04/2025 12:10

toappealthisdecision · 10/04/2025 07:22

Younger sister (in her 30s), I am her primary guardian as parents are incapacitated themselves unfortunately.

She has complex diagnoses - autism, ADHD, dyspraxia, dyscalcula, mild/borderline learning disability (IQ 70), a lot of mental health stuff (on 3 psychotropics including mood stabilisers) but no concrete diagnosis. She has epilepsy (generalised since childhood), asthma and IBS. She was queried for a genetic syndrome, they think possibly fragile X via my father - but not sure.

She has never worked or earned a wage. She lives in supported living scheme with 24/7 on site carers, although overnight they are not in her flat but are just down one flight of stairs on a sleeping shift - no waking staff overnight.

I can’t see her coping with a job. She does a voluntary thing 2 hours a day,, and she has a 2 or 3 basic qualifications (ie about the level you’d expect of a 11 year old) and can to an extent do kitchen portering and handle a till, again to a very limited extent. But she can’t do any of this to a level she would get paid for. No one would employ her. Reading age is about 9, writing is far lower.

She has zero idea of value of money or impulse control. Socially she is years and years behind and can be very disinhibited. She struggles to keep relationships and doesn’t know what is and isn’t appropriate. She really needs someone with her all the time who knows her and can help her - if she gets upset or overwhelmed she can go into sabotage mode and has been sectioned on 136 a few times because she’s a danger to herself and others. A lot of self harm and violence towards others. She’s also doubly incontinent for psychological reasons and struggles to keep herself clean.

She will never not need care. She doesn’t see it this way and believes she is going to find herself a neurotypical girlfriend and get married and have a lovely house with pets.

Her benefits have changed recently and she’s been told she’s losing £400 per month as she’s not allowed ESA anymore; so will lose severe disability payment - also has to change to UC. She will possibly have enough to live off but only just - ie she will struggle to pay for utility bills, will have a very, very basic standard of living.

I don’t know if that also affects council tax and housing benefit but suspect it will. she also has to pay a chunk towards her care that goes up every year.

Our local council have just made the step of closing down vast majority of learning disability and elderly care services - 70% of all council employees have been let go, most sheltered housing, care homes and similar are gone, no care at home workers, and there are now no day services either. Sister no longer has a social worker, he’s been made redundant as he only worked part time. I don’t know anyone is going to take over but I doubt it - because she is borderline IQ and has some family around she is not classed as highly in need.

I work full time but I only just earn enough for my own bills despite being band 5 NHS, I can’t afford to pay for her too much as I wish I could. One parent is in a care home and exists on £45 per week for personal spends, the other wouldn’t and couldn’t for various reasons.

She is however, only getting the lower rates of PIP, which makes me think we should appeal? Their argument is she can walk, eat and wash but she can only do these things with a trained adult or often 2 adults.

I’ve talked her through what I can and have explained I am prepared to try and appeal. Is it worth trying? I can’t believe her benefits can just drop by that amount so quickly.

There doesn’t seem to be any real support or advice out there for anyone in this boat, it’s not what I expected at 34 to be trying to sort out! I’ve got a couple of relatives who are my rock at the moment but just trying to find independent opinions on what to do

Appeal appeal appeal.

The sods shouldn’t be allowed to get away with this.

I’m so sorry you both are facing this. You shouldn’t have to. She needs the support I can see that in your post so why can’t they!

Get in touch with citizens advice, disability help website (sorry forget its name) and have a look at mind. Mind have a helpline that assists with benefits they might be able to advise you.

EnjoyingTheArmoire · 10/04/2025 12:05

KitsyWitsy · 10/04/2025 08:30

Surely she is just changing over to UC asESA is an old benefit? It doesn’t sound like she will have any issue getting the full rate of UC with the limited capability of work. No point whatsoever appealing as her benefits haven’t been reduced, they are just changing to the new system

This is incorrect.

Whilst the Tories tried to convince everyone that UC would mean more money for all this is simply not the case.

I was migrated across a few months ago, and as a disabled lone parent I am £360/mth worse off due the difference in rates between ESA (with premiums) and UC.

I haven't magically become less disabled in this time, and will lose my transitional protection when we need to move house over the summer (due to dc's disability).

The two are not equal.

Vespanest · 10/04/2025 12:03

not having a named social worker is a bit irrelevant as she is still in and known to adult services and must have current risk assessments and care plans in place. It is these documents that make PIP slightly easier especially when a person has enough capacity to answer questions but not enough to understand the consequences and reality of the answers given.

PIPnamechanged · 10/04/2025 12:01

OP, do you happen to have her PIP scores at hand? If so, let me know what they were for each activity. Even better if you have the form with the justifications on it. From what you’ve said, the lower rate is definitely not appropriate.

TheWisePlumDuck · 10/04/2025 11:58

Be prepared to go to tribunal.

They very often award the points people actually deserve, it really is worth persevering with.

As an aside, I am very sorry you and your family are having to go through with this. I voted Labour but am appalled by their treatment of the disabled, especially that disgusting rhetoric they were spouting before the spring budget, I will never be voting for them again.

RubyOrca · 10/04/2025 11:58

I’m not in your system so no direct advice on appealing.

however - if your sister is going to be assessed - do not help her put her best foot forward! Unfortunately that may mean leaving your sister without adequate care for a short period of time.

Eg You mentioned she needs help to dress/shower. If you provide that care then they’ll conclude she doesn’t need FUNDED support - cause look see she’s clean, dressed etc.

Don’t leave her in danger - but don’t hide her challenges from the assessors.

itsgettingweird · 10/04/2025 11:58

Absolutely appeal.

That level of need should reach enhanced care of nothing else. The fact she lives in supported living shows she needs someone to print and guide her to do everyday activities.

LazyArsedMagician · 10/04/2025 11:52

I have no advice but I'm so angry on your behalf. Costs going up every year, but lets CUT what the severely disabled need. Disgusting behaviour.

TigerRag · 10/04/2025 11:50

PivotPivotPIVOTT · 10/04/2025 10:58

There is a charity called Fightback for justice, who can definitely help her. I use their service every time me or a family member needs a form filling in, they’re amazing! They charge for filling in forms, but do waive the charge for some people if they cannot afford the fees. You can get it touch with them on Facebook. Also, as someone else has pointed out, if she’s receiving SDP with her ESA, and is being told she now has to migrate to UC, the SDP is protected by regulation 19, which means she won’t lose those payments. If she moves before the mandatory migration date, that’s when she’d lose it.

Don't pay for advice. There should be someone within her local supported living scheme who can advise on benefits. Either that or someone like CAB

Zilla1 · 10/04/2025 11:49

HNRTT but perhaps don't set too much store by the initial interview result. A majority of declunded claims that go to appeal succeed in a system that might appear designed to try to get claimants to give up. If you are a Band 5 then as well as local benefits advice and disability rights, perhaps see if any colleagues have similar experience and can help. The forms and appeal are a work and IME, HCPs with personal experience can be adept at successfully navigating the clais process.

Good luck.

FootFlapperage · 10/04/2025 11:45

The first thing you need to do is get her GP to sign her off as unfit for work, the sick note can run for at least 6 months ..
Can you be with her when she has her appointment with the job centre. I found them to be very helpful. It won't take long after they meet her a few times that she's not capable of being employed. I wish you the best of luck.

Arthien · 10/04/2025 11:42

If she's in supported living, staff there should be able to work with you on this. Part of their job will be supporting with benefits applications and they'll be used to people having their money cut, and how to go through the appeal process with the right evidence

CalicoPusscat · 10/04/2025 11:38

I'm a bit shocked that they might even consider cutting funding for someone with your sister's needs @toappealthisdecision

CosyLemur · 10/04/2025 11:27

Definitely appeal! I'm having to do this for my son. Apparently having to change from DLA to PIP has cured him of all his care needs and he can now live a normal life!
Even though at 16 he has the mental age of a 5 year old and can't even dress himself!

Genevieva · 10/04/2025 11:24

toappealthisdecision · 10/04/2025 07:52

Yeah, she’s under an LD psychiatrist and has had SALT, OT, CPN, psychology involvement since about age 11 or so - will ask surgery if we can get copies of reports. My mum wasn’t great at keeping paperwork so I’ve got very limited access at the moment but her GP must have some documents!

Show quote history

I think you should also say in your appeal that her elderly parents are now unable to support her, so she will need more paid-for support, not less, to manage daily tasks like dressing, hygiene, preparing food, remembering to eat meals, coping with public transport… Cost it and show the shortfall.

I know a woman with a very similar profile who has one-to-one care support from when she gets up to when she goes to bed. She is very intelligent in some ways. An early reader with a small number of excellent GCSEs, but severe and complex congenital and psychiatric problems. She still gets lost in the small torn she has lived in all her life, if not accompanied. The state funded support she gets has been pared back, in the sense that she no longer gets fun days out with other local people (they used to go on a holiday camp once a year), but her day-to-day funding is sufficient. It sounds like that will not be the case for your sister without a successful appeal.

DazzlingCuckoos · 10/04/2025 11:21

I never thought I'd ever say what I'm about to say.

I'm so pleased my sister is severely disabled!

She has the mental age of a toddler and cannot walk or talk, so the whole PIP assessment thing is so much easier as a result.

I'm sure you'll get a lot of advice here @toappealthisdecision but I just wanted to show solidarity. Your sister is in an awful middle ground position.

I agree though - appeal and get support in making your appeal. Would her key worker be able to provide advice? My sister is in a care home and the staff at the home are very good in advising on finances.

Genevieva · 10/04/2025 11:13

PIP assessments seem to be subjective, so it is definitely worth a go. My understanding of recent announcements is that the downward pressure from government is to aim on the side of caution, not generosity, when assessing candidates. This is because of a funding crisis. Has she had any genetic testing? It would probably help enormously if they could identify a biological condition that demonstrates her disabilities are lifelong and non-curable, rather than mental health related.

Thelittleweasel · 10/04/2025 11:11

@toappealthisdecision @BananaSpanner

Please get this under way. I would certainly get your MP involved from the start.

If they are Labour you could instruct ["implore"] them to vote against the benefit cuts

Kingsleadhat · 10/04/2025 11:09

Is there a charity in your area that helps with benefits claims? If not, try Citizens Advice. You need proper help with challenging this, it's a minefield.