PIP Award Review - Never done it before - Please help

[SuperBlondie28]

My DD was awarded DLA at age 11, then PIP later on when she came of age. I, as her mum, am her apointee. I did receive a letter earlier this year or late 2021 saying her PIP award would run up to Aug 2023. Extended til then due to Covid.

Have now received a letter dated 21 Sept for a review award due to be posted back by 23 Oct. I will be filling it in with her input. She has various issues and has a developmental age of someone much younger (she is 22 yrs old), communications issues, was under SEN when at school and college, has an EHCP and under care of a social worker from our local council. She is possibly autistic and displays that sort of behaviour according to professionals we've dealt with. Sensory issues with clothes, food issues. Doesn't see the need to wash much or change her clothes unless I nag at her. Won't talk to people hardly at all that she doesn't know. She doesn't work as she wouldn't cope with even an interview.

I know the PIP review form is kinda one size fits all. Is aimed at physical and mental disability and coping with everyday life. She is very much dependent on us, as her parents/carers.

Questions like preparing food and cooking: Yes she can pour cereal and milk in a bowl without supervision. Yes she can boil a kettle and make a pot noodle for example. But what do they define as preparing food and cooking? Like an actual meal with 3 or 4 types of food where you have to work out cooking times, right temp on oven, chop veg, use the hob and make sure stuff doesn't boil over. I wouldn't trust her to do that without supervision. I don't know what to put for the answer.

She takes no medication apart from vitamins from the supermarket.

Mixing with other people: apart from family member and her friend, she won't mix hardly at all. Infact if she's out with myself and she sees someone she went to school or college with, she avoids them actively. I am aware that she was bullied at school.

Was hoping for someone advice of someone who's been in a similar situation with their child. The PIP award has been very helpful in the past especially DD was at school/college and we'd frequently got a call saying to collect for xxx reason. My hubby took an agency job rather than non agency so he could leave work more easily while I worked full time and was the higher earner. So the extra money was very helpful. With the cost of living as it is, I am quite scared to lose the PIP money as it allows DD to save some money for her future.

Would be grateful for ANY advice from anyone really.
Thanks all xx

When I did DD1's PIP form, I described it as you have here. I said that she could roughly butter a piece of bread, but that she would tear the bread and put far too much Nutella on it. I think if you are explicit about what she can and can't do (remembering that to be able to do something she has to be able to do it 'reliably' which is Safely, To an acceptable standard, Repeatedly, In a reasonable time) then you'll be ok.

They look at the PIP descriptors and whether someone can do them safely, reliably, within a reasonable timeframe etc.
For the preparing a meal one they look at if the person can cook a simple meal from fresh ingredients on the hob.
For medications - can she take them at the correct times without prompting. is she at risk of taking the wrong meds at the wrong times or not taking them at all without prompting? It also looks at therapies- does she need therapy, counselling etc.
Mixing with others- does it cause her distress mixing in social situations or public places ? Does she get anxious, have meltdowns, avoid social situations, crowded places etc. Give examples of what happens in these situations, does she need someone with her to cope with the situation?
PIP is extra money to help with the extra costs of disability.
If she does not work then she may be able to claim Universal credit also as long as she does not have savings over 16k.

Thank you very much for your answers. They're really helpful.

I would agree with the advice above and say to break each task down into a "here is what DD can reliably, consistently and confidently do" and then spell out why any complications could limit her ability to do so: ie. my daughter could boil a kettle for a pot noodle but she is easily distracted so may leave the task incomplete, overfill the pot, fail to follow the steps to use boiling water/mix the noodles through or whatever. She could be unsteady due to medications and have previously scalded herself or have left something wedged against the kettle switch so it didn't cut off and the steam build-up set off the smoke detector which triggered a sensory overload etc. (Obviously those are weirdly Pot Noodle specific examples)

Follow up with "here is what DD cannot do without some level of supervision/encouragement/support" and "here is what she cannot do full stop" and then detail why and how her specific challenges have a knock-on effect on her ability to carry out these tasks, on her personal safety and on awareness of risks etc. Use that principle for every question: on some occasions, she could do this but here are the challenges, here are the things that complicate her ability to do so regularly and reliably and here are examples of what can go wrong or has done in the past. Don't be afraid to explore the emotional and mental health repercussions too.

In my experience - having helped friends and loved ones who need additional support - I would say that painting a three-dimensional picture by walking someone through the scope of someone's needs with practical examples is really helpful. Pace yourself and maybe take on just two or three questions at a time so you can get into the minutiae without losing your mind. And don't be afraid to be repetitive. It can be surprisingly painful to share/discuss a loved one's limitations in this way when you're used to being positive and proactive but in the long term it will help your DD get the support she needs to enjoy her life so it will be worth it.

Be very careful. Get hold of the cerebra guides. Consider so what your dd can do without you. There is a difference between being physically capable and actually being able to think or plan to have a meal. My dd sounds similar to yours. She can never be left alone. She would not be able to use an oven. She would not understand that an oven has settings. Putting cereal in a bowl is not making a meal.

Go to Benefits and Work

www.benefitsandwork.co.uk/

It's an excellent site, run by people with benefits and disability experience. They have published guides on how to complete forms for all benefits, including DLA for children. There is also a forum for advice for others. To use the site in full, it is necessary to pay a small annual fee, but in my experience is well worth it. I have always managed to be awarded the appropriate rates for myself and my children just on a paperwork assessment.

"For almost 20 years, our guides, training, forum and newsletters have helped thousands of claimants, carers and their support workers to make the best possible claims and appeals.

Join the Benefits and Work community to get the correct award of PIP, ESA, UC or DLA."

Thanks again 🙂 just another quick question, I'll be doing the writing on the form as I did before, and the DLA forms. Do I write from DD's point of view? She will be with me when I fill out the form. Or my point of view as a parent / carer?

I see things very differently to the way she sees them. I have to remind her to bathe and put her clothes in the wash bin for example. She doesn't see the need for showering/washing every day when she's on her period.

At 22 years of old, I was hogging the bathroom myself. You get the picture I hope.

Also if I use extra sheets of paper, should I handwrite or can I type them?

Thanks again xx

Write it from your point of view, as she is unable to assess the care she needs.

Brilliant! Cheers

Is there a charity/support worker for your DD disabilities that can help you complete the book OP

I'm filling in the form now for dd (18) and I got advice from Citizens Advice, who were fab - really concentrated on detail and what she can and cannot do. E.g. food and eating, she can follow a simple recipe but somebody else HAS to be in the house to make sure she hasn't turned the hob off instead of down, forgotten to wash knife used for meat before slicing veg etc. You have to think of every aspect of everything. It's exhausting tbh.

I have just very recently heard that my DS 21 - who sounds very similar - has been awarded enhanced for both for 4 years, with no interview. We hadn't applied before. Tbh I was pleasantly surprised. There's no doubt that he is very far adrift from typical 21 year olds, but I expected a bigger battle.

I wrote very honestly. I said he could make cereal and milk but had no concept of tidying away or washing up, didn't eat regularly or healthy meals - would consider a bag of grated cheese a meal, or six bags of crisps, and that he could warm ready meals in the microwave but not use hob or oven as he would forget to turn the gas off or forget items were in the oven or whatever. I didn't exaggerate or do "worst day" scenarios. He actually scored 27 on daily living based on what I wrote (need 12 for enhanced).

Congratulations on the PIP award! I've almost finished filling in my form for DD. It's so strange that I filled in the original DLA form and from DLA to PIP form and never give them much thought. I wrote honestly. I did have reports about DD from the school / college to back me up. Now I have a social worker report from the council from Preparing for Adulthood team. I will send that in.
Have found it easier to type out extra notes about DD, giving examples and then sign and date them. Just hope it's acceptable. My handwriting isn't great anyway. 🤞🏼