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

Any evidence older than about 2 years is pretty irrelevant; obviously an original diagnosis of a condition that won't change is relevant; but the DWP is only interested in the claimant's condition(s) at the time of the claim or assessment. This is why a recent Patient Summary Record can be helpful along with evidence of current needs.

Sounds like you’ve described my sister, well before she was kicked out of supported living!

I successfully appealed is the short answer. Really really think about answers, for example one I remember was ‘can xxx use an alarm clock’. I thought about saying yes, she can physically operate it. The answer in context though is no- she cannot use an alarm clock for its intended purpose. She cannot plan ahead and choose an appropriate time to set it without support, eg for an early appointment she couldn’t manage her time ready to be collected. She would not use snooze or understand the significance of the alarm either without prompting. Same for example with using a microwave, another question. She could easily if told to set a two minute timer and press start. She can’t however use it safely for purpose, she wouldn’t remember what is safe to use in a microwave, she’d leave it unattended with the wrong time and wouldn’t read instructions from a ready meal. She basically couldn’t be left to use on. The questions are tricky- get support. For example, communication- communication of needs or facts, not just saying words at a stranger sometimes.

The job centre staff were actually decent and supportive. They agreed she couldn’t access their support to work, even logging onto the computer unsupported. Basically even if I drove her there she couldn’t access the support

Thank you for your answer. So would they assess every few years to see if there is any change then? Just seems a stressful waste of everyone’s time, including their own (DWP)

While I agree ESA should be addressed first, a good benefits lawyer could actually do PIP straight after as the data for the one is used for the other. For example a detailed dairy can be adapted to relate to the ESA and PIP questions; all the medical documentation is used for both. That way there’s not a lengthy time lapse meaning more work to update the diary and collect more medical documentation.

It is poor advice not to challenge PIP in the long run given the nature and scale of DSIS’s disabilities. There is no question that by rights she should be on the higher rate for the care and the mobility component and that should be argued out legally at tribunal if necessary.

You should definitely appeal. They are counting on saving money by lots of people not having the fight in them to appeal their bad decisions. They know exactly what they’re doing, it’s entirely deliberate, don’t let them get away with it.

Ah, sorry, I misunderstood. I hope the appeal goes her way.

It’s not irrelevant to lifelong conditions. It’s not just about historic diagnoses but also historic capacity for work and historic care. DSIS has never had capacity to work and never will thus latest judgement is an error. If they are only sent 2 years worth of data they can’t see the full picture.

In the old days DLA would be awarded for life for people with lifelong impairments. Now they put these poor people through review but there is some recognition that there’s a difference between recent injury/disability/illness, fluctuating conditions, long term, lifelong or terminal conditions, which there wasn’t when the form was first redesigned.

Lifelong vs short term is key when deciding how long to leave before review, which is crucial here.

"It is poor advice not to challenge PIP in the long run given the nature and scale of DSIS’s disabilities. There is no question that by rights she should be on the higher rate for the care and the mobility component"

I did not advise OP not to challenge PIP in the long run - I advised her to consult a benefit specialist first.

Its very irresponsible of you to claim that there is "no question" the sister should be on enhanced rates for both components; you don't know this for sure and none of us do without a more detailed discussed with OP and her sister, and without reviewing the evidence.

Your sister lives in a supported living scheme with 24/7 carers. Do you have power of attorney? Are you her appointee for UC and PIP? How does she fund this care (there will be a contribution). If she has supported living she will have a support plan and access to a social worker. I would contact SS and ask for this to be reviewed. I would ask for a updated needs assessment. I would appeal PIP and get support in completing any paperwork and provide evidence. You are fortunate that she has a number of clinicians (so something is working). Appeal and fight - you don't need a lawyer but you do need the right permissions and arm yourself with the right info.

I didn’t say the higher rate for both components: I said the higher rate for care, and the mobility component - I didn’t specify which level of as there’s not enough info.

I can say for certainty she should be on the higher rate for care on the basis of OP’s posts as they’re quite detailed. One can see the level of care she requires (and indeed has had) and what descriptors she meets.

Whether she will get it is a completely different issue.

I don't know where you live but your council may provide a service that checks her benefits to make sure she is getting everything she is entitled to and could advise on appeals

She should be on higher rate pip and mobility from what you’ve said (I assume she is incapable of planning a journey etc - it’s not just for walking)

you need help filling in the pip forms (there are various disability charities that help with this sort of thing) and you need to get yourself appointed as her appointee to speak for her

be prepared to go to tribunal

there are various pip groups on Facebook and have knowledgeable people on there (as well as some idiots) - you’ll get support and help (you can post anon)

you can also get more information there with her transition to uc, - I know nothing about it but being £400 worse off does not sound right. I really feel for you, it sounds an awful situation

Charitable organisations. Any money goes back into the organisation.