0 points for PIP? (advice please)

[Catastropher]

Sorry I didn’t know where else to put this. I have autism and I haven’t worked for eight years because of it. I also have stomach issues. I applied for PIP and the DWP has rejected my application with 0 points.

I have no cognitive impairment because I drive a car.

I have no difficulty planning journeys because I drive a car and walk the dog round the block. Also I attended the assessment (which they forced me to attend otherwise I couldn’t get PIP).

I am able to cook and wash and budget etc (despite me saying I struggle) because I’m not cognitively impaired and I drive a car (a complex task).

There is no evidence of MH support (I’m on duloxetine and had 2 courses of therapy in the past year).

There is no evidence of nutritional support (I’m permanently under a dietitian, annual hospital reviews and blood tests, permanent prescriptions for vitamin supplements, bone scans every couple of years).

They said I can converse fully without prompting. I am diagnosed with autism!

I don’t know what else to do at this point. Does anyone have any advice please?

DC is autistic in the same way I am. He’s verbal, articulate, physically capable. But obsessive about certain subjects, struggles to change task, can’t cope with groups, noise or light, has meltdowns about changes in routine, and basically wants to stay in the house and be left alone because everything is too stressful.

My understanding is that I can’t claim DLA because DC doesn’t cost any extra or need any extra supervision.

could your dh pay for some household help to take the pressure off both of you?

No. We don’t have money to spare for that. He earns a good salary but it’s our only income. After tax it’s equivalent to less than 2x min wage salaries. We make ends meet but can’t afford luxuries.

As you enjoy walking your dog have you thought about walking other people's dogs for some income? Many people trust dog walkers to pop in when they're at work to collect dogs so there'd be no social interaction.

Or a job that you could wfh? I'm sure you have thought about employment possibilities before. Just try to focus on what you can do, not what is a challenge for you.

Isn’t the fact that he is in the house all the time more expensive?

Do you not have to talk him down or supervise lights noise people etc?

Does he not cost more in terms
of sensory clothes issues?

Does he not need noise reducing headphones? Does he eat certain foods that cost more?

I think walking other peoples dogs with ASD could be quite hard. You have to talk to the owners at some point, and that’s the first hurdle….

It seems like you need to focus on the anxiety that is provoked, would you be able to contact an autism charity for support?

With work, what have been your main barriers? This might give you more fine grained points to put in the report?

I've had 3 assessments and none of the assessors lied on the reports.
The first 2 times I was awarded high rate for both elements for 3 years, the last time high rate for both on going with a soft touch review in 10 years.
However, an advisor from Macmillan came to help me fill in the forms and there were nearly 50 supporting documents.
Not all the assessors are evil liars

The assessor who did my dd was lovely. Even moved her up on some points.

I don’t like big dogs. Or other people’s dogs. I like my own Chihuahua. I walk him on a specific route around my estate, always in sight of windows because I’m paranoid about being assaulted (have been assaulted many times just for daring to walk down the street). I don’t think dog walker is an ideal job for me.

Really I’m looking for advice with applying for PIP though. Not applying for jobs.

Have you looked at the descriptors to see how many points you feel you
should be awarded? DS, has ASD, is moving from DLA to PIP soon so I just did a quick calculation and seems he should get 18-20 for the care component and either 10 or 12 for mobility.

I’m autistic myself. I don’t have lights, noise, people. That’s why DC’s issues weren’t picked up earlier. Because I created an autism friendly environment for myself, which was benefiting him without realising.

It doesn’t cost more to have him in the house all the time. Why would it? I’m autistic, I’m in the house all the time myself.

He does have a restricted diet but I don’t think you can get DLA because your kid is obsessed with strawberries.

My son was diagnosed with autism aged three but I didn't apply for PIP until he left school aged 19, as I realised he was 'unknown' to the system and therefore ineligible for any benefits. I filled out the form with support from the Citizens Advice Bureau, which was turned down twice, with no points on both occasions, but was actually successful at the eventual tribunal (CA came with us.) I would recommend you do this. Also write down very factually just how much your husband does for you. Yes you must get copies of medical letters - just an admin task, take your time. Good luck OP.

I would expect maybe 4 points for mobility. I’m physically mobile, I drive, but I don’t like going out and I have to be pushed, I need support to plan an unfamiliar journey and I need to know I can definitely park when I arrive. I realise that isn’t enough points for an award.

On the daily living part I’d expect to get about 11 points. I use support to help me shop and cook (2 points), take meds and remember medical appointments (1 point). I need prompting to get dressed and washed (4 points). I can communicate but need support to engage with other people because I’m autistic (4 points). I don’t budget or deal with money at all, I probably could do it but it makes me anxious so DH does it (2 points).

In all cases I’ve been told I can obviously do these things because I drive a car.

I mentioned above that I get PIP for my autism - I also have an autistic child. He lives with me and gets PIP and I claim Carers Allowance for him with no issues. It's definitely possible to be disabled and be a carer.

'Really I’m looking for advice with applying for PIP though. Not applying for jobs.'

Yes but sometimes debate evolves, I'm merely trying to help.

As you can do all activities independently albeit it being challenging you need to think of another way to generate some income.

I use support to help me shop and cook (2 points),
What support do you use? Does your DH do all the cooking and shopping? What happens if you are home alone, would you prepare a simple meal for yourself or your child?

take meds and remember medical appointments (1 point).
Who prompts you? Do you use an calendar and phone reminders?

I need prompting to get dressed and washed (4 points).
What’s happens if you aren’t promoted - will you change your clothes from day to night clothes, would you shower without a reminder. How long would you go without washing if not reminded.

I can communicate but need support to engage with other people because I’m autistic (4 points).
Do you use the support of advocates when for example going to drs appointments or having meetings at school?

I don’t budget or deal with money at all, I probably could do it but it makes me anxious so DH does it (2 points)

You really need to think about what extra support you have for the tasks you struggle with and if possible evidence it.

You need to collect evidence & send it in to them to support what you put on the form. They won't request this evidence for you eg by contacting your GP.

PIP is awarded for level of personal care & mobility support someone needs. This does not need to be a paid for carer - it can be a family member but you do need to explain that.

PIP is not awarded in order to top up NHS treatment or to provide support at work.

You can apply for a mandatory reconsideration. Go through the PIP points criteria and explain & give evidence for each question. Eg 'im unable to cook a simple meal from scratch, DH does this for me or I reheat a microwave meal'= 2 points.

They always say this. It isn’t correct, and that is why it needs appealing.

I would go for Mandatory reconsideration.
I'm so sorry you got 0 points- sometimes it's unfathomable.
I mean if you get higher rate mobility component you can get a motability car so clearly a lot of people who get pip can drive.
The benefits and works website ulis excellent- it's worth paying the £20 ish annual subscription to get access to their online guides.
There may also be charities/ CAB who can support you through the process.
Yesterday I supported my anxious autistic daughter through a pip assessment.
It took 90 mins and seemed thorough - she only drives short local familiar journeys with a passenger in the car.
Now have to wait 8 weeks to find out if its awarded.
It's a horrible system-dont give up i think lots of people have to go through Mandatory reconsideration and appeal- good luck

They have fraud checks in place. Falsifying a medical letter would be fraud & would be taken extremely seriously.

DLA eligibility is different from PIP.

Child DLA is much easier to get. It’s based on the hours of care needed over and above what a child of that age could reasonably be expected to need.

You say your son has meltdowns - managing those is part of his care. Providing the environment to prevent those is care. Time spent persuading him to get dressed etc is care. Imagine if he wasn’t able to live in an adapted environment and had to manage a ‘normal’ day, accessing school, extra curriculars, going shopping. I imagine he would need a lot of care to keep him safe. He sounds very eligible for DLA to me.

OP, I think perhaps your autism is leading you to interpret the forms extremely rigidly.

You’re going to need help from a welfare benefits specialist to navigate the application process.

I understand that this all seems connected to you, but for the assessor it needs to be spelled out in a way that matches the descriptors. They are literally looking at a list of descriptors and trying to decide which one applies for more than 50% of the time.

The caselaw for Activity 1 has formed a consensus that it is a notional 'simple meal' test which assesses the claimant's physical and mental capacity to cook, not whether they do so. Factors such as dietary requirements ([2017] UKUT 358 (AAC)), cultural or religious requirements ([2016] UKUT 572 (AAC)) or the personal conditions of the claimant ([2017] UKUT 317 (AAC)) are not relevant.
https://pipinfo.net/activities/preparing-food

a. Can prepare and cook a simple meal unaided. 0
b. Needs to use an aid or appliance to be able to either prepare or cook a simple meal. 2
c. Cannot cook a simple meal using a conventional cooker but is able to do so using a microwave. 2
d. Needs prompting to be able to either prepare or cook a simple meal. 2
e. Needs supervision or assistance to either prepare or cook a simple meal. 4
f. Cannot prepare and cook food. 8

So that means that it makes no difference if it's hard to go and get the food (that's likely to be covered by the engaging with other people question and the taking nutrition question). It is simply a case of 'can this claimant prepare fresh ingredients to make a simple meal.'

If you would not eat rather than cook a simple meal, then you need to explain why (ie. too exhausting, too mentally draining, no motivation), and that you need either the prompting, supervision, or assistance to cook.

It isn't enough to say 'because I'm autistic'. Some autistic people can communicate well as long as the subject is factual, or in their comfort zone. Some go mute. Some rely on social scripts and then can't cope if the conversation deviates from expectation.

You need to say what support you need, how often you need it, why you need it, and what would happen if you didn't have it.

You can't rely on the assessor understanding autism.