I guess that I should not be surprised but the mandatory reconsideration arrived and they had still scored my son zero points. First off I hate the way they write it as if HE has been able to communicate all this stuff to them, when actually I have written it for him by me! The next is the continued lack of respect for his struggles as an adult on the autistic spectrum and the fact that they seem to suggest that only physical disabilities count. So then the next step is to decide whether we will take it to tribunal.
The DWP Tribunal for Personal Independence Payment (PIP)
You have to give it to them that the way they have worded the letter it really makes it feel like there is absolutely no point in going to tribunal. Not only does the mandatory reconsideration keep going over the same things again (like saying what a wonderful rapport my son had with the interviewer – communicating with no problems whatsoever – when actually I spoke for him a lot, he had a panic attack and ended up with his head between his legs trying to breath!) but at no point does it explain what a tribunal is? Why it is any different to what has happened already – just telling you that you only have a month and a website link to visit (www.gov.uk/appeal-benefit.) There are 2 copies of the mandatory consideration notice as one is needed to be sent off for the tribunal.
Photo by Alisa Mulder on Unsplash
Reasons my son scored zero points in his Mandatory Reconsideration
Even at the face consultation the guy asking the questions said that he had a nephew with severe autism. Straight away my son felt compared – and it does feel that is the case. It is very much a case of just get on with it there are people much worse off than you. To be quite honest I would accept that if they did not score him as zero and say that he does not have the problems he has. If they acknowledged them but said unfortunately this benefit isn’t for them I would give up. They have made me feel like giving up with their reply and let’s be honest Christmas time isn’t the ideal period to be dealing with it all.
No problems physically speaking.
Because my son knows how to speak any problems associated with struggling to communicate have been ignored. Cognitively he should just talk. Feels a bit like they are saying that he should be grateful he is able to communicate and should just get on with it. HOW we are meant to argue against this?! As this is their line of criteria – as far as they are concerned they have evidence that communication is “adequate!” Plus they said he made eye contact – if only communication were that easy!
No physical problems eating.
Again physically and cognitively my son is able to prepare food (from the tests where he was asked what day of the week it was etc). The fact that he needs prompting, reminding and ideally supervising (to make sure he doesn’t get burnt/eat out of date/raw food etc) does not count when using their criteria.
No input from a psychologist or mental health team and is not on medication.
No quite he was getting by with just a specialist mentor (who also doesn’t count). Services are hard to get with so many cuts – but I am sure after this ordeal he will need to seek out this support! And unless you are seeing someone/taking tablets then Autistic Spectrum Condition obviously doesn’t affect your daily life (at all as he was scored zero on everything). The likelihood of him getting to see any psychologist or someone from the mental health team within the time period I should imagine is very slim (I guess unless he tries to commit suicide!!!!) and I am not really sure where I go to access such support for him in the first place! To be honest maybe they have done us a favour because we have just been getting by – maybe it is time we asked for help again.
Thank you everyone for your support in our journey so far.
Websites to help with a Personal Independence Payment Tribunal:
Personal Independence Payment the ironic process where people with Asperger’s Syndrome need to be able to communicate their difficulties with communication. I am sure this new disability benefit has affected so many people in so many ways. If you have been following the journey so far then you will know that my son with Asperger’s Syndrome was asked to switch from DLA to PIP; that he has already had the PIP Face-to-Face Consultation and been told that he does not qualify for Personal Independence Payment. I have since sent in a request for a mandatory reconsideration and had asked for the request copies of the evidence that they used to make the decision. I have now received that evidence and have a further 2 weeks to add anything else or I can ask them to just go ahead and make a decision. This is what I have gleaned from the evidence that they made their decision on.
Photo by Štefan Štefančík on Unsplash
The Decision for not Granting Personal Independence Payment for my son with Asperger’s Syndrome
The first thing I would say is not to wait until you receive the decision but to ask for the notes straight away (I was advised over this but naively felt confident that he would be awarded standard rate). Secondly personally I feel that I am fighting a losing battle as the assessors clearly have no knowledge of Autistic Spectrum Condition and are basically applying that most young people don’t eat/wash/deal with finances etc – and I am just a parent that is worried and will not let go!
Photo by Chelsea Aaron on Unsplash
The physical seems to be a tick box too – he can physically talk, walk, wash, cook etc – anything mentally seems to be ignored: This is because it means it is deemed not significant enough: Examples are that he is not taking any medication to help with his mental health or anxiety; and does not have a guide person with him 24:7 helping him with social, communication and interaction – and never has.
The decision is made on their own assumptions: In fact the report basically says that because there is no-one helping him it suggests that the majority of the time he is indeed having no problems with social and communication. The fact that the food is not fresh/nutritious is “not considered within the scope of this activity.” Basically that cognitively he is capable of cooking. Basically they have decided on their answer and then just copied and pasted this for each section – with some having a little more twist towards the question but not all.
Evidence for Personal Independence Payment
Basically it boils down to proving it by the looks of things. No matter what it says about whether you need help but don’t get it or not that’s rubbish. My son was not awarded it based on not having hard evidence: The only evidence they used was from the PIP Questionnaire. Unlike Disability Living Allowance they did not attempt to contact anyone to confirm my son’s difficulties from a professional point. This whole thing has adjusted my view on whether people should fight and now my answer is always yes – as you never know what is around the corner. Unsure about needing a diagnosis? Fight for one anyway. Do not think they can get an EHCP (Education Health Plan)? Fight for one anyway. NEVER let it go, because whilst you/your child may be coping right now it will be used as evidence against you later on if you didn’t try to get it!
Photo by rawpixel.com on Unsplash
As he was unable to communicate his daily struggles and how often affects him, it went against him – but not enough to suggest that he has difficulty talking to others and expressing himself! Anything I added as his appointee was belittled and I was only referred to as his “mum.” We were not asked about the variability, triggers or treatment during the face to face consultant but they were all put as none – obviously when asked at the start you need to make these clear!
Tips for a Face to Face Consultancy Meeting for Personal Independence Plan for Autistic Spectrum Disorder
Make it clear not only what the symptoms are of the condition but what is the variability, the triggers and any treatments.
Make sure this is communicated well, whilst not being seen to be able to communicate.
Do not have your mother as an appointee as she will just be referred to as Mum – and we know how fussy they are!
Take tablets.
Don’t follow instructions to where you need to go.
Be underweight.
Be unclean.
Be ungroomed.
Give no eye contact.
Struggle to breath.
Be badly dressed.
Struggle to walk – it has no relevance to your Autistic Spectrum Condition but it is mentioned so many times on the form so MUST be important.
Photo by Ian Espinosa on Unsplash
All joking aside, I tried not to judge the guy who came in who did smell, “struggled” with his cane etc – and it was hard not to think why isn’t someone really looking after this person if things are really this bad?! He had someone with him too so not like he was just alone.
On the other hand this process has made me feel like a fraud. A scrounger trying to get money for a young man who it appears to be more than capable of living independently when there are so many others out there who aren’t. It makes me feel like he just has to try – that we are obviously doing something wrong. That I am just neurotic worrying, and fighting for support to ensure he eats, washes and has help with communication. I am not even sure it is worth trying to fight any more – never mind putting him through a tribunal.
I would be interested to know what kinds of support people who have been successful at Tribunal do receive/need to Gage whether it is worth the fight.
Thankfully Student Finance England do not agree with this decision and have awarded him his Disability Support Assist and so IS able to access help he needs to live more independently.
Moving from Disability Living Allowance (DLA) on to Personal Independence Payment (PIP) was always going to be a difficult time – for one we (my son and I) struggle with change. But with the horror stories added in to the mix with the uncertainty it wasn’t something we were looking forward to. In fact if it were just about the money I wouldn’t have bothered, but I believe it helps him have access to DSA (Disability Support Assist) at University.
Letter asking to move from DLA to PIP
First of all the letter came about the switch earlier than I was expecting. I thought it would be when my son’s DLA ran out that he had to apply – so it was a bit of a shock that it came 3-4 months earlier. I then had to make a phone call (and let’s be honest who likes making those, but especially not people on the autistic spectrum) with very little information about what would be expected during that call. Luckily I am on a few autism forums and was reassured that it would be basic information which could be added to once the form arrived.
The First PIP Phone Call
First of all you need to ring up by a certain date that is on the letter. I wanted to do this as soon as possible so I didn’t forget. In hindsight if you leave it longer then you are going to be paid at the rate you are on now for longer – this is because as long as you do everything by the dates they say then they will continue to pay you up until a decision has been made. They ask for you to verify information that they have on record such as name, address; details of healthcare professionals etc. Anything I didn’t know the answer to they said it was ok I could just add it on the form. I was asked for permission to move over any “evidence” on file from the DLA claim to be moved over to PIP. It was also explained that the PIP form would arrive in the post.
Asperger’s can lead to bullying
The PIP Claim Form
Personally I felt that this form was easier to fill in, if not omitting a lot of areas that those with Asperger’s may struggle with (although there is the page at the end where you can add it). The biggest issue for me is that this time it could not be typed up and there wasn’t really a lot of room. It was straight forward in each section with yes/no tick boxes and comment sections to elaborate. There wasn’t lots and lots of repetition about the same thing. Again we had a date by when the form was due by and DLA would continue to be paid as long as the form was back by that date.
Looking at the criteria I felt positive that my son with Aspergers Syndrome would be easily entitled to enhanced care and not at all on mobility. Basically because I felt that they had moved his mobility needs over to the care section (as he is physically able to move it is the help he needs mentally with this). I thought there was evidence enough for him to tick the boxes to get those 12 points and that he would be okay. In fact, somehow I had even convinced myself that he wouldn’t need an interview. Filling in the form made me physically sick though. I hate having to write them out, think of how he is struggling, and especially his bad days. On doing the form and talking to his support mentor I realised that he wasn’t actually doing as well as I thought he was. The biggest problem for us is that the lady who is helping him wouldn’t be able to help any more without the right funding. I am really anxious that if he does not receive PIP this will fall away completely and the University will not be able to help him. I felt reassured though that PIP is meant to be for help that is required – whether you receive it or not. For example, you are meant to be able to make meals from fresh (including reminding and supervising) – the fact that my son eats, but not properly should not be an issue.
As I feared a lot of what his problems are were put down to “student life” Photo Credit: Annie Spratt
The PIP Interview
I should have known from the fact the envelope was white (and not brown) that a decision had not been made but I was still shocked at the invitation to attend an interview. It was rather short notice and at 9am in the morning. This meant I had to get my son back from University and sort childcare for my other children. All this was sorted though and then the real realisation set in that the things on the form would have to be discussed in front of my son with Aspergers.
My son lives in a bubble and, although he realises that he struggles with communication with others, there are just some things that he does not understand that he does because of his Aspergers. I went through the form and the different areas with him – and in his own words it made him feel shit. I had to reassure of him of how well he is doing, and how proud of his progress we are. I had to, in the gentlest of terms, explain how Aspergers could make him egocentric, and what that meant: I told him that it didn’t make him a bad person, but that this could sometimes annoy others. I am sure you can think of many other scenarios where my son is unaware of his condition but they are far too personal to blog about. Let’s say the whole thing has made me feel like a rubbish parent because I should be supporting him and not letting him struggle. The thing is, and I believe it is true, that we HAVE to let him be independent and little by little he is managing and it is amazing. I do appreciate others are worse off and can never be in this position, it just feels like people are penalised (with support taken away) when they try to help themselves (instead of it going when they are more able to deal without it – again this is not about the money but the doors it opens to support for him).
The PIP interview itself started badly as I had completely forgotten that we both needed to bring two forms of ID. Luckily a bank card and driving licence was fine – and we both had these (although the fact my son had both of these probably went against him – as it showed that he could drive, even though he doesn’t because of the unfamiliar area he now lives in, and apparently having a bit of his money and a bank account demonstrates he is fine with finances – that and simple maths questions he was asked!). In the waiting room my son went really light-headed and his anxiety was through the roof. They had a water dispenser and I was able to get him 2 cups before we went in (nothing like being punctual!) – this also meant that he had a cup to fidget with.
The guy that took the interview straight away let us be aware that he knew about autism and had a family member with severe autism. This was a double-sided coin as he was able to really engage with my son, keeping language simple and was able to extract answers from him (and how to help him when he got really anxious); but on the other hand this meant he could not say that my son had any communication issues! Everything was explained well in simple terms and we were told that the interview would give us his opinion at the end – so it was all transparent. Personally I felt that a lot of the questions were leading or that the interviewer would suggest to my son how he should answer (like, “I am sure a bright lad like yourself doesn’t, but do you ever need anyone to simplify language for you?” – even though I had had to explain the do you take medication question to him!). Again no idioms etc, or other no simple language was used, and the fact that my son struggled with communication seemed to go down as just “anxiety.” None of the paperwork used in his DLA claim had been sent over for PIP but I was told there wasn’t any point in sending it now. This meant that they did not even so much as have a diagnosis for his Asperger’s syndrome but he took my word for it and asked who diagnosed him. I feel that the interview is totally not suitable for a condition of this nature – for one those who have a communication disorder feels unfair that they don’t seemingly say the right thing (I could go on and on about this but for example, when asked how often he showered the interviewer demanded an answer so he just made one up because he felt he had to say something!)and how my son was made to feel (not the interviewer’s fault but the nature of the interview) was surely a human rights issue. I am really not happy.
The PIP Interview Verdict
We do not know the actually results of the interview as it has to be sent off and scored but the guy doing the interview told us what he thought and would be putting his case forward. Basically what he said was that my son was, in his opinion, on the border. That there was no way we could suggest he has communication issues because he went to a main stream school and is now at University with no statement of special educational needs or one-to-one support. That he is able to catch a train (from University to home, one familiar route and would need help if anyone spoke to him, anything went wrong or changed but we shall ignore all that), dress and shower (who cares if the clothing is right or whether the shower is just him getting wet and not clean, and needs prompting to even do that!) living independently (even if he has a mentor and contact with parents for support with this). He did however feel that he has issues when it comes to food and socialising. I guess we just have to see now. It was awful for our son to go through all that and it made him feel really ill. If he does receive standard care I wont fight it (even though I think it should be enhanced) because there is no way I want to put him through any more than he has. Apparently a decision can take around 6-8 weeks – let’s hope it is more the 8 so that he can continue with his DLA until then. Fingers crossed that all this was not for nothing for him.
Do you have any experiences with moving from PIP to DLA?
PIP is a benefit that helps with the extra costs of a long-term health condition or disability for people aged 16 to 64 which is phasing out DLA.
As a parent carer of disabled children I feel that we are deeply undervalued. Well carers in general, but I would like to focus on being a parent carer of disabled children. Those of us who do not go out to work, and earn a certain amount, seem to be considered that we are not doing enough.
This post was actually triggered by a comment about whether I would like to come off benefits at some point. You see the thing is I am a parent carer as I have 2 disabled sons (only one of which I receive carers allowance for). Some would argue that they are my children and I should not receive money for them (see my previous post on Pinkoddy about why I feel it is right for people to claim disability living allowance for their children). But I want to do whatever I feel will help them most in life.
You can claim Carers Allowance as a Parent Carer
Carers allowance is paid to those (including if you are a parent carer) who are looking after someone who receives:
Attendance Allowance
Disability Living Allowance – the middle or highest care rate
Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit
Constant Attendance Allowance at the basic (full day) rate with a War Disablement Pension
Armed Forces Independence Payment (AFIP)
Personal Independence Payment daily living component
The parent carer (but you don’t have to be the parent) must be over 16 years old and care for at least 35 hours a week, for which they are given an allowance of £59.75. Ironically the comment was made after we had been discussing the fact that self-employed people should be earning at least the minimum wage, but this equates to less than £1.71 an hour! Well below minimum wage. Of course after putting your career on hold if you are lucky enough that child will become independent enough to leave home and make a life for themselves. But what of you then – too old to retrain and lacking in experience to work other areas, the whole time you have been scrapping by on minimum money.
Now I know that you can be a parent carer and work around these hours (say when a child is at school). I feel that you are lucky if as are a parent carer you have found a good enough employers to be flexible with time off, or have a child who, you feel, does not need you to be readily available. Obviously some people HAVE to work, as Carers Allowance is not enough.
For those of us who feel that we need to be (and I am well aware that parents of non-disabled children may feel this too) available for our children – for IEP meetings, annual reviews, because your child is not coping/need to go to the hospital/has fallen asleep – whatever the reason to be taken out of school at short notice – then this small amount of money helps make that a possible option. Whilst they are at school we may also be doing things to help them when they are home again (maybe setting up something to help them develop socially, emotionally, their language, fine motor skills etc, or arranging appointments, going through paperwork, washing their wet bedding – I am sure the list (and seriousness) could go on and on.
And of course there’s all the things that as a parent carer you have to do, above and beyond what you would do for a non-disabled child, for the 35 hours that you are with them. The one thing I am pleased about is that to receive carers allowance you do not have to justify what you do, you just have to show that the person you are caring for has a need to be cared for.
And yes I would like not to have to feel like the best situation is for me to claim, I would love that my son had no additional needs.
Do you feel that you are a parent carer who is undervalued? What kind of things do you feel are beyond the norm that you have to do in your role as a parent carer? What would you say to someone who tried to undervalue what you do?
It is split into two components: Care and Mobility. Children under the age of 5 cannot receive mobility unless they are physically disabled, or the condition is very severe – the reason given is that most children under the age of 5 would need extra help to ensure they were safe (for example when crossing roads).
How much help with Mobility you need will depend on the rate that you are paid.
Disability Living Allowance Rates
Disability Living Allowance Rates for a Child 2022/2023 UK
Lower – £24.45 a week – Guidance or supervision outdoors.
Higher – £64.50 a week – Severe walking difficulty.
How much help with Care you need will depend on the rate that you are paid.
Low – £24.45 a week – you need help for some of the day or preparing meals.
Middle – £61.85 a week – frequent help or constant supervision in the day, or at night.
High – £92.40 a week – help or supervision through the day or night, or you are terminally ill.
You do not need to be eligible for other benefits, it is not means tested.
You do not need to live in a Council house, or assisted accommodation – it does not matter where you live.
You do not need a diagnosis .
A diagnosis of Sensory Processing Disorder, Autsim, Aspergers, Anxiety, may mean that your condition effects you in a way that you are entitled to Disability Living Allowance, but it does not mean that you will automatically qualify.
There is not a limit on how many people in a household can claim – so if you have 3 disabled children then you can claim Disability Living Allowance for each child – you can only claim Carers Allowance once though – each child would need a different adult as their carer.
Carers Allowance is payable to anyone who looks after a child who receives the middle or high rate of the Care component for at least 35 hours a week.
Disability Living Allowance is a tax free benefit; Carer’s Allowance is however not; it is taxable and you must declare it as taxable benefit to the Inland Revenue on your Tax Credits renewals.
It is paid every 4 weeks into a Bank Account.
The money is for and belongs to the child.
Changes must be reported.
The most important thing to remember is that you have to demonstrate why the child fits the criteria and how they differ from their peers. Always write from the perspective of them having a bad day. This can be an incredibly emotional thing to do so I always recommend doing it on the computer, then, at renewal time you can just update the information. This does however mean that the claim cannot be back dated.
You can receive help at the job centre in filling the form out. If you can get help from a disability advice specialist.
If you disagree with the outcome you can always ask for a reconsideration.
If you have anything you wanted answered, or want to offer any help with things you feel may be of use then please do add them in the comments.
