To appeal sister’s benefits?

[toappealthisdecision]

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

You know her better than the DWP. The benefits system is unfairly scored anyway and they're very well known for making mistakes whilst they're about it.

I wish I could reassure you that it will be productive, but I do think it's worth a try.

I think I just voted yabu by accident so apologies for that. Yes, appeal. She sounds like someone benefits were invented to support and I’m very sorry for you they’ve been reduced. I don’t know how successful appeals are. Would your local MP get involved?

Definitely appeal. Have you spoken to citizens advice?

Appeal but reach out to people who can help you appeal there is free help available font pay for it! Often it's the wording that trips you up in these forms you MUST STRESS the help and support they are getting to do these things it's the difference between "can get dressed under supervision" and needs clothing set out and repeated prompting to dress themselves needs support on deciding appropriate clothing for the weather, see the difference?

The thing is she had a face to face assessment when the decision was made, she sat silently and glared at the floor the entire time but someone still pronounced her as being not that challenged and therefore able to work. I think because from the outside she just looks socially awkward and like any number of people you might see only a daily basis - she can type, pick up a coin, lift a pint of milk etc - it’s only once you are with her 24/7 that you realise actually, she’s not coping all that well at all and really does need someone with her all the time. Little things like if her bus was cancelled she would not know what to do at all and would be liable to scream and shout and swear at the bus office staff.

I’m not sure re MP, there’s been a big enough argument that the MP has done sod all about the en masse closures so I’m not sure - worth a try though. I’m going to take a few days in my AL to sit with her and go through everything that I can and try and get it all sorted.

Citizens advice is worth trying yes, I’ll see if they still have a local office!

Yes definitely appeal.

CAB sounds like a good shout out to me too.

Useful tips.......

Always ask for a PIP assessment to be recorded and if it goes to appeal ask the DWP to provide a transcript of the assessment.

Ask for a hearing and go, and

Bring a third party with you, not Rumpole of the Bailey but someone who knows you or the claimant whoi can hold your hand and add their comments to the questions.

Something like 9i0% of PIP appeals are upheld withiout additional evidence

Definitely appeal but get supporting evidence from professionals who know her. Medical diagnosis is not as important as having robust evidence about how her disability affects her. If she’s that impaired she must have had plenty of people involved with her care over the years.
If she’s in supported accommodation she must have been assessed as needing that by someone? Get a hold of those reports and submit them as the basis of an appeal

Yes absolutely appeal. Insist on a new social worker before hand and ask for them to be present and have met your sister and you first so they can also fully understand her difficulties.

Definitely appeal, this is a really helpful website that provides guides if you are a member and it will be well worth joining to get access.
https://www.benefitsandwork.co.uk/

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!

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.

Anyone on PIP being forced onto UC/New Style ESA is entitled to transitional protection against losing their SDP so I can't see how she will lose £400pcm - is someone getting mixed up with the Green Paper proposals?

It can affect council tax as some councils have used the UC switch to reduce the subsidy but it will still be at least 75% reduction.

People on 'low rate' PIP are generally not advised to appeal for more due to the risk of losing the lot, especially if SDP is involved.

A lot of pip is about paperwork.

speak to the gps and ask for a summary printout of her medical record. That will have dates and diagnoses on.

you may also be able to persuade them to include access to some letters - if she has been sectioned this is also evidence.

if she is living in supported accommodation they will also have documentation- speak to them and ask to see her care plan or equivalent.

yes, appeal.

I think you need to get some benefits advice really - if she's being migrated over to universal credit then her ADP entitlement should be protected through a transitional element. Whether she's entitled to the higher rate of pip or not will depend on exactly how her needs match up against the pip descriptors, and it's best to go through that with someone who knows what they're doing

I would definitely appeal. Citizens advice are excellent for this, they can do meetings in a convenient location (doctor surgery).: good luck x

before you appeal you need to know exactly shag she was getting and what she has lost

Was it a ESA assement or PIP

it sounds like it was ESA with the Severe Disability payment

this is nothing to do with PIP which is a separate benefit

if she is being moved over to UC her money shouldn’t change if she was on the old style legacy benefit with SDP

There's also the site benefits and work that I found very helpful. They even had the scores used in assessment.

Definitely appeal. Someone in my family is very similar, no idea with money, IQ about 70, epilepsy, needs help and pretty much constant supervision etc and has recently been awarded highest rate Pip for 10 years.

You can change your vote by clicking on the other option. I learned this from another poster a few months ago.

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

It sounds like she was in the support group of ESA on the old benefit system and has had a in face assessment of her ESA award
it has to be ESA as that’s the only award with Severe disability payment

if she is now in the work and support group this means she will lose the SDP and the money for being in the support group and will be required to apply for UC

so she would only be getting around 100 a week if she is either a job seeker or looking for work with support group

to stay on the same amount with UC you need to supply a fit note when you apply and then she will get assessed again at some point

she should still get her rent / ct paid under universal credit but she will be expected to look for work under UC rules

it sounds like it was ESA with the Severe Disability payment
this is nothing to do with PIP which is a separate benefit

Severe Disability Payment is everything to do with PIP/DLA as you only get it if claiming ESA and PIP/DLA.

Benefits and Work is a dodgy operation charging real money for what you can find with a Google and helping fuel the conspiracy theories.

I would definitely appeal and also get a professional to help you out with this one - they are being devious saying she can do those things when she can't on her own. Further I would get in touch with social services re adult care and see if she is entitled to other bits and bobs which can make all the difference with regard to pence in her pocket. for e.g. incontinence pads if needed, some help with cleaning, UC should still have rent and council tax elements. You may find as she is in this sort of care she has other entitlements as well. I would also talk to her utilities and make sure she is on the cheapest rates and see if there is anything they offer to help out as well.

If she ends up not getting extra, try contacting foodbanks as well, they do hygiene ones as well as food and when you are on a budget knife edge like this every single thing helps.

Also are there more relatives? Whilst you all cannot afford to help her out hugely maybe a little from everyone would make the difference e.g. £10 each from 5 is £50 and that is her food covered for a good period or one of her bills

I often think people who struggle to advocate for themselves loose out in these situations and yet they are the people most in need of the benefits and who they are meant to support