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

Definitely go to Citizens advice as they can help you with the benefits stuff. Might be worth contacting Adult Social Services if she isn’t already under their care.

the fact she needs supervision and assistance to do any of the criteria on the PIP application, she should be scoring high enough for the enhanced rate.

is she on enhanced for mobility? I’m assuming from what you’ve said about her needs that she likely cannot undergo journeys on her own let alone plan them.

Please look at the organisation 'fightback'. They can really help you. Your sister sounds like she absolutely should be on higher rate PIP and Fightback have best practice forms for you to look at, and can even do the appeals for you. There's a small charge for their service but no commitment - if you're all sorted in a month, you only pay for a month.

ESA is much more pressing than PIP atm.
Plus when you are already on PIP we always warn against trying to get a higher rate without first talking to a benefit specialist about whether it's realistic and worth the risk of losing the existing award.

Problem is companies charging money to 'fill the form in' plays straight into the fraud narrative, especially when they boast of huge success rates.

That must be so exhausting for you both to cope with.

Yes, definitely appeal and provide a statement from yourself about the ways that your sister's conditions affect her, alongside medical evidence.

For Universal Credit, your sister should receive 'Transitional protection' for the Severe Disability Payment part of her ESA to UC migration to prevent her from being worse off on UC. It would be worth contacting Citizens Advice about this- they can guide you through the UC claims process.

In terms of PIP, yes, it definitely sounds like she should be on high rate care at the very least. The website 'Benefitsandwork.co.uk' has some really in-depth guides on claims and appeals for PIP and UC and I would definitely recommend looking at those.

Sounds like there's more going on than you realise. No able bodied person with just dyspraxia gets a car unless they are making a fraudulent claim.

"CAB aren't specialists in applying for PIP."

Eh?!
As I said in my first post, I work for a local citizens advice. We literally pay benefit specialist staff to do PIP claims and appeals.
Local offices differ and some may have more benefit expertise and experience than others. But saying citizens advice are not specialists in PIP is just plain wrong. Many citizens advice offices will have specialist knowledge of all disability benefits including PIP, ESA, LCW(RA) on UC, DLA, Attendance Allowance.

You need to get some benefits advice. Call Citizens advice on Universal credit . If your sister needs to claim universal credit under managed migration there should be protection when she starts the claim. Challenges on the existing benefits are local Citizens Advice. Easiest will be if you can sister is there to give permission to speak. Have details of all decisions and dates. The link is England and Wales.

I understand ESA claimants are being moved to uc but don't lose the money ...have you completed her uc application ? If she cannot work she will be allocated that group on uc and carry on as she is just under uc and not the defunct ESA benefit.

10000 percent appeal! Scream, shout, whatever you need to. As unfortunately those who shout the loudest get the most help and your sister sounds like she needs! It!

As others have said she should not lose £400 a month by switching to UC as she will get transitional protection meaning she should get the same as she currently gets although this will erode over time.

Your local council or county council may have a free benefits advice service - our local authority welfare rights service are amazing but will only deal with clients who are most vulnerable including people like your sister who are in supported living or have a care package, social worker etc

When moved over to UC, ensure she gets the LCWRA element which is roughly £420 per month so this may be what you're missing?
Definitely worth contesting the PIP decision.

Compared to benefits lawyers who also represent their clients at the tribunal.

CAB don’t even help with MR as you admitted, which is the first step and needs proper advice and support because if you do that well you can avoid appeal.

Get help from her Social Worker to complete the Appeal. Or from MENCAP. It's all in the wording.

OP - when you say “appeal” is this a new PIP decision or do want to ask for a re-assessment? The timing may be important to maximise your sister’s benefits when moving to the Universal Credit. That bit is definitely help to claim.

The crucial information will be in the decision letter the DWP sent her. Was ESA stopped because the desesion was made that she is fit to work- in which case you can dispute the decision.
Or has she been transferred to universal credit as part of the universal credit roll out?

Our benefit specialists do represent at tribunal actually.
And we do the occasional MR request but tbh it's not worth paying someone to do that because success rates are really low unfortunately.
Most people on ESA and/or PIP can't afford to pay for representation so it's not hugely helpful to insist they have to.
Our benefit specialists do a great job and it's free.

I didn’t say they didn’t I said they didn’t do MR.

The rate of MR is low because clients do it themselves and they don’t know how to. The MR should be part of the appeal strategy. If you submit the type of evidence gathered for appeal at MR stage and produce a clear and evidenced argument supporting the descriptors you feel you meet and why the original judgement was wrong - appeal can be avoided.

There used to be disability advice services who covered benefits before their funding was cut. They were able to give more time and attention to their clients than CAB as CAB is far busier and more generalist sp the quality/experience of the advisors can be a bit hit and miss.

For someone on UC temporarily it’s not worth paying a benefits lawyer and unaffordable. For a case like DD - lifelong care situation - it’s absolutely worth the investment if OP can find the money. There’s so much at stake here. It may be possible to repay OP at least in part from DSIS’s benefits if the appeal is successful.

I work with adults with LD and I fill a lot of this paperwork out on their behalf’s.
Can I ask who actually completed her PIP form for her?

Also if she is migrating to Universal credit from the old style benefits she shouldn’t end up any worse off. Yes the ESA will stop but she will get an additional payment within her Universal credit to make up for this. Housing costs will also be claimed through UC.
Please just make sure she is currently receiving all the correct benefits and amounts prior to the migration to UC or she could potentially end up worse of, as the existing benefits are taken in to account when UC is being awarded.

Does your sister have an independent advocate, does she have an appointee who helps manage her money?

What an awful situation for you to be in OP and your poor sister. No advice but just wanted to echo what others say and appeal. She’s not able to be independent clearly. Say you’re moving away and they’ll need to step up as she’s a vulnerable adult and needs support.

So many posters are missing the key point which is that the sister's ESA has been stopped because she was found fit for work.

If she doesn't successfully challenge the decision she won't get transitional protection when claiming UC, because there is a gap in the claims, and it's not managed migration either. The best she will get is the transitional SDP element if she can get the WCA decision overturned.

There is no need to change or challenge the PIP award at this point; the sister already has PIP daily living component which entitled her to the SDP with ESA.

I would strongly advise against doing an MR/appeal for both benefits at the same time. Challenge the WCA decision first and sort out ESA/UC. Then once that is sorted if you have any mental energy left you can worrying about trying to increase the PIP award.

The difference between standard UC and UC with LCWRA and transitional SDP element is £566.64/month. The sister has nothing to lose and everything to gain by pursuing this.

The difference between standard and enhanced rate daily living component of PIP is £36.50/week (£158/month). OP didn't mention whether her sister gets the mobility component already; she might do. There is no guarantee she will get more than she already gets, though, and there's a risk of losing her existing award. I would strongly advise consulting a benefit specialist first.

She's being migrated from ESA to UC. Everyone in the UK is, so basically ESA will no longer exist for most people.
Has she been given the migration letter? The money she receives now shouldn't change during this migration period. They can only change it with an assessment.
You should definitely appeal if they are trying to say she's less entitled. She's clearly the same if not worse than she was before.

Read the OP's posts. She is not being migrated. If she was still on ESA, she would be migrated to UC, but her ESA was stopped after a WCA.

OP can I ask a couple of questions please?

When she was at school was she in mainstream with SEN support? Or even a school for children with moderate learning difficulties? Did she have a Statement of Special Educational needs back then?

I’m thinking if she’s always needed support throughout her life, why do they think one day she’s a fully functioning adult who can take care of all of her needs. So even if you don’t have reports etc if she had specialist provision then it should strengthen your case.