PIP Mobility when would you inform them of a change ?

[Yellowdaffodilss]

Son is 19. Autistic . Always had high rate care and mobility DLA , now on PIP enhanced for both . When I applied I explained everything fully - he didn’t go out alone but had began to walk to the shop or do a short bus route , with me following behind . He was awarded quite a long term ( 10 years I think ) . We got a car with the mobility last year.

As time has gone on he has pushed for more independence. The problem I have is that my son would be probably classed as high functioning - he’s aware of his autism , mainly he’s aware of the negatives and tries to mask . There are lots of things he can’t do but is in complete denial - this leads to meltdowns . For example, a very small thing , he can’t butter - but he will say he can he just chooses not to. He can’t iron , he will say he chooses to iron that way. I have to really prompt him to wash properly but he basically forces me to say that everyone needs the help he has ( I know I shouldn’t but when you live with it and see the distress sometimes you’ll do anything ). So with going out - he could plan a journey on paper no problem but then when he’s out I would worry so much . I track him all the time , I go where he is going so I’m around but he doesn’t know ( I have had to collect him many times and tell him I just happened to be there - when he has called me and he’s missed a bus etc ) I feel it’s not safe when he’s out , he runs, he is so trusting he would talk to anyone. He went to a shop for me once ( I was around ) and he came out and didn’t have the item he bought ( had put it down ) so went back in to the manager and was insisting they check the cameras and called me distressed. To go to college I put him on a bus on a straight route and track him the whole way then it stops right outside of college.

In an ideal world , with no one who could take advantage and all buses came at the precise time, there was always a seat to sit in and he never had to change his route or timings , or walk anywhere different he would probably be ok. But that’s not the world and he simply cannot deal with changes . It’s all very new at the moment but I know he is one thing away from something bad happening and him never leaving the house. His meltdowns can be extremely distressing and although he masks well , it’s there.

As he’s 19 , I can’t stop him. I’m always fondant excuses just to keep him safe . Without the car he would miss out on a lot - he will have meet ups planned and I’ll insist on taking him “ because it’s cold “ , “ because it’s easier “ when in all honesty I’m trying to keep him safe. He goes to social groups for people with his needs and I take him 3 times per week - they are across the city and no way he could safely do it but without the car he would insist and I dread to think how it could go.

I worry because if he has to do his own claim in future , he would say he can do everything because he will never admit and I know I shield him from a lot.

I want him to be independent and I think in time he will be - he will likely go in to supported living . But I want to be honest about his needs , but he would be more in denial and just say “ yeah I can do everything “ and it’s likely he won’t be able to hold down a job , he struggles with a lot . The worst case is that he will say he’s fine and needs no support - I’ll have no say as I don’t have control by law - then he will be on benefits with no money and jobs won’t work out and it will afffect him massively.

So I don’t know what to do . Do I leave it for now as things are new so it could all change , or do I tell PIP the changes ( even though him going out would not be safe or possible if I wasn’t tracking him / following him , he has a phone with all his maps and apps - which is absolutely not how an adult with no needs would be ) ? This risks losing the car and the money and having a massive affect on him mentally . I would say he’s like a 12 year old - imagine the law saying you can’t tell your 12 year old what to do so they just go off in to the world and it’s not safe and you’re always around , following , tracking on edge etc .

I know of a 22 year old who is autistic and has a car on mobility , drives around alone . So they obviously get full rate mobility and I know their parent is absolutely not someone to lie - so there are reasons that someone still gets it when they can go out alone. I’m not asking for advice on how to play the system - I personally don’t financially benefit , but I just know how easy they take things away I don’t want to shoot him in the foot by doing it wrong .

What are the changes you are worried about reporting?

OP is worried her DS will downplay his difficulties in the future out of misplaced pride and a lack of understanding of his own limitations and lose the help.he needs

This is EXACTLY it you worded it so well

That he is going out more , that could be seen as independently

No advice OP but I'm in an almost identical situation with DS (18).

I feel we're somehow conning the system but he was only awarded it 18 months ago.

i think you should worry about this when you need to renew. It’s for a number of years so no need to change it until then. He is clearly not independent and his needs have not changed. In future he may have an advocate or support worker etc who will help him claim if you can’t or he doesn’t want you to.

Well, there are two issues really.

one it’s very common with many people not to admit how their disability affects them. If he makes you his appointee then he doesn’t have to fill out the form and so his views on it don’t come into play. Pip are well aware that people with ND/mental health difficulties/dementia etc don’t have realistic views of what they can do.

two, he is increasing his independence. Your question there is when should I tell them about a change in his abilities. Again, part of (I think) the form asks about both planning a route and also coping with changes (eg bus cancelled etc). I’m pretty sure it’s on the form (did mine about a year ago) and they also ask in the interview. Your post makes clear that he is starting to develop a small amount of independence but doesn’t cope when there is a change he needs to adapt to. So on a personal level I would say you really aren’t at the level of “this is a big major change and I need to tell them”.

I know exactly where you're coming from OP. My ds is the same, same age. At review he said he could do this that and the other. I tried to intervene. He's lost high rate mobility and care just like that. Not even reduced to standard. Had to give the car back obviously. I've appealed but have got nowhere. Tbh if I were you and he has a 10 year award, I wouldn't be shouting these 'changes' from the rooftops. You havey sympathy...it's so damn hard.

@justforthis I'm so sorry to.read this. The system is designed to "catch you out' it stinks when it's vulnerable people

Yes it is. I can't understand why it was taken away altogether, not even reduced to the standard rate. My ds still has the same diagnosis. It makes life just that little bit harder...like ds needs it!!

How will he do his claim in future?

Can you intercept it?

I don’t know how these things work sorry.

If electronic could you register his email address as a different one to his actual one, like one you make up and only you have control over. Then you log into whatever it is and just do it and let him know it’s all done “just sign here if you want to keep the car and all your clubs, thank you, good boy” kind of thing?

If it’s postal you could open it if you see it arriving. Not that you should read his mail but when it comes to his quality of life and safety I’d put that first.

OP can you discuss with him making you his appointee with DWP. If he’s willing, that means once you have appointeeship all correspondence is sent to you.

Benefit would either be reduced to a lower rate or taken away altogether based on what your DS has told them. If it was clear to the assessor that he was demonstrating ability to a level where he’s no longer meeting the criteria for the claim then benefit would stop.

PIP is a very difficult benefit to claim but there’s nothing in the assessment that’s designed to ‘catch claimants out’ - eligibility relies heavily on self reporting of the difficulties experienced with the activities assessed, and supporting medical evidence of the diagnosis has to be largely consistent with the effects the claimant is reporting.

The diagnosis itself is not what counts for PIP, it’s the way in which the condition affects the ability to complete the activities assessed.

OP do you have a copy of the actual assessors’ report ? If not, you can contact DWP and ask for a copy. Have a read through it and then have a look at the decision letter where the case manager has set out the points scored and why, and gives a summary of the reasoning behind the decision to award.

This will give you an overview of the responses during the assessment and how they were interpreted for the level of award. If nothing has fundamentally changed then there’s nothing to report. The fact that DS wants to think of himself as more independent doesn’t mean he is, if he’s failing to develop coping mechanisms to keep himself safe. It sounds as though he still needs the same amount of supervision and help, just adapted slightly to allow him the feeling of having more independence.

Yes I'm aware of that. I filled out 45 pages listing his difficulties which had not changed significantly since the last review 3 years ago. For all that effort it seems to me that it all hinges on the phone interview which in my opinion is wrong.

Thank you , this makes a lot of sense.

Im a very anxious person , very conscious of if I am doing anything wrong.

It’s not for me - it’s not my money - but I just don’t want him left with nothing . I won’t stop his independence for that reason but I’m just aware that on paper it could look different than it is .

I am his appointee , but at some point I won’t be .

I know he wouldn’t lose it for care needs as everything there still applies .

I think like others have said , it’s not a case of this is a massive change I think I’ll see how it goes . I just don’t want to change it prematurely and not be able to get it back . I feel like for him to be independently travelling like other adults it needs to be where he can just go out and I don’t have to think about it - I don’t need to track him or be around the area he is in , prepare him for every journey etc .

When I applied , he was at the point of just going out but I would follow him in the car etc and he was awarded on quite a long term award .. I would have thought if they were bought this could change soon and it was heading that way they would have said “ we will check again in a year “ or something.

Thank you for all your replies . I will still worry and question it but you have made me feel a bit better .

"being able to perform an activity safely, to an acceptable standard, repeatedly, and within a reasonable time period"

It sounds like your DS still can't go out and meet all of these requirements? If he can't, then he still isn't independently doing it.

I know someone who drives hundreds of miles but still gets high rate mobility because when things go wrong they can't manage.

Oh thank you . This is it exactly !

I had a similar issue and rang the dwp to report a change as my son was now going out more independently. They rang me back and were really nice on the phone. They talked through what a journey was like and they didn't change the award as it still met the criteria.

I also have the same worry that my son will say he can do everything because he isn't aware of or refuses to acknowledge the support he has.

It’s hard isn’t it? Feels like we have to just let them do unsafe things ? Realistically we have no control when they are adults .

Brings me on to the issue of parents being able to have that control. I do think , although it’s hard for me , that really when my son is very aware then that power shouldn’t be taken away - the risks are part of life and deep down I know that and I know that I have to accept it .

But , getting that power ( I can’t think of the exact name for it ) is so hard ! I work with very severely autistic people and I mean there is absolutely no way they could go out alone or make informed decisions and yet , the parents have not been given that control ( control isn’t the right word ) it’s so hard to get - I agree to an extent , they are humans and should be given those rights and dignity - but I know of one who cannot speak for their young person on medical decisions and the doctor asked to speak to them alone. They absolutely can’t make an informed decision - and the parent is having real issues as the doctor wants the patient to have an op that the parent knows is not necessary and would cause distress but the young person has said yes and the parent is fighting. So hard .

We had DS reassessment for pip last July and he downplays his difficulties so I thought he would lose the lot. However the assessor wanted to do the assessment with both of us on speaker phone so I was able to step in when he told blatant lies that he can cook and manage social relationships etc. I was able to give examples of how I had to help him and ds conceded that I was right. He ended up staying on the same rate for care but lost his mobility by 1 point, which we knew would happen as he can travel independently.
So when they do your DS reassessment they won't just take his word for it, in my experience anyway.

If he has enhanced mobility based on him needing support to go out and the fact that he doesn’t go out alone you absolutely do need to inform them that he now does go out independently. You worrying about him when he is out alone isn’t enough. It’s fraudulent not to inform of these changes. I understand it’s not ideal financially and you would probably lose the car but its preferable to a jail term when can and does happen in the case of benefit fraud. I say that loosely as it’s massively unlikely but as an autistic rule follower I would update huge change like that.

It isn't whether he can go out alone. It's whether he can go out alone safely - regardless of whether he actually does go out alone. I know a young person who goes out alone but his mother regularly has to find him because he gets lost. He gets the high rate mobility.

@Yellowdaffodilss you'd be best to update the DWP but make it clear what you have to do to scaffold that.

So, like i said, if he no longer needs the support to go out then there is an update to be made. If his mother is following him about or he isn’t managing this then he isn’t able to go out alone. OP has indicated he does manage.

Read it again. @Yellowdaffodilss says she follows him, she makes excuses as to why he needs her to take him. He has meltdowns. That's not independence.