PIP is it worth bothering? It's a headache already

Thank you for your replies everyone. I shall have a read and a digest of all the information and hints and tips

LimaMikeSquared said:

How long is the PIP process?

As long as the proverbial piece of string!

It depends very much on what point in the process you get an award (or find out for sure that you won't be.) I now receive enhanced rate "daily living" and basic rate "mobility" components of PIP - but my case took about as long as is possible while still winning.

• After filling in and sending off the forms, it was a couple of months before I was finally called in for the capability assessment.
• I hadn't been able to get an advocate at this point, and turned up in such a state that I was sent away and re-booked to try again a month later in the hope that I'd find someone to go with me. (the interview was ended because I was showing "cognitive impairments" that the assessor deemed made me impossible to interview.)
• At the second attempt, I'd finally got myself an advocate, and the assessment was done. However, hardly any of the questions had anything to do with the issues reported on my forms, or autism in general.
• A few weeks later, I found that I'd been awarded zero points. Apparently my "cognitive deficits" had completely disappeared, as the decision letter said that there was no sign of them.
• The next step was to request a "Mandatory Reconsideration". The response that me and my advocate put together addressed everything in the decision letter point by point. The DWP deemed all of these points irrelevant and awarded zero point again. This took another month or two.
• Next step - put in my appeal. It was getting on for nine months before my appeal hearing date. However, the hearing was adjourned without me taking any part in it because DWP had messed up my records so badly that no decision could be reached due to legal technical points.
• It was about another six months before the second appeal hearing. The tribunal deemed that I should have been scored twenty points, and my award was finally made...
• ...but it was awarded for only four years. Since it took nearly two of those years to get from filling in the initial forms to finally winning my appeal, I now have less than two years before I'll have to start the process all over again.

Although I got very unlucky having to have both the assessment and the appeal hearing twice, most of the above is not unusual for autistic people claiming PIP. It's common to be rebuffed with zero point assessments; mandatory reconsideration are just a time-wasting extra step that rarely lead to any change; and about two-thirds of people who go through the appeal process eventually win.

So, steel yourself for possibly a long process, and if you possibly can, get a disability advocate that can see you through the process (CAB, Mind or a local NAS branch should be able to point you in the right direction.) Always remember too, that psychological reasons for a disability are just as valid as physical ones, though it will probably take an appeal before this will be acknowledged. For example...

• If you need prompting to do things like eat, say, because attention problems lead you to skip meals, this is just as valid as not being able to eat because you can't lift a forkful of food to your mouth.
• Severe agoraphobia, difficulties with navigation, or disorientation when walking in crowded places do count as mobility problems, as they affect the ability to get around safely just as much as physical immobility.
• Problems understanding language still count even if they only occur under certain conditions; e.g. in crowded places or when there's background noise.
• Anxiety, depression, etc. should be counted if you can show that your other conditions make you more prone to them.

Good luck!

LimaMikeSquared said:

How long is the PIP process?

As long as the proverbial piece of string!

It depends very much on what point in the process you get an award (or find out for sure that you won't be.) I now receive enhanced rate "daily living" and basic rate "mobility" components of PIP - but my case took about as long as is possible while still winning.

• After filling in and sending off the forms, it was a couple of months before I was finally called in for the capability assessment.
• I hadn't been able to get an advocate at this point, and turned up in such a state that I was sent away and re-booked to try again a month later in the hope that I'd find someone to go with me. (the interview was ended because I was showing "cognitive impairments" that the assessor deemed made me impossible to interview.)
• At the second attempt, I'd finally got myself an advocate, and the assessment was done. However, hardly any of the questions had anything to do with the issues reported on my forms, or autism in general.
• A few weeks later, I found that I'd been awarded zero points. Apparently my "cognitive deficits" had completely disappeared, as the decision letter said that there was no sign of them.
• The next step was to request a "Mandatory Reconsideration". The response that me and my advocate put together addressed everything in the decision letter point by point. The DWP deemed all of these points irrelevant and awarded zero point again. This took another month or two.
• Next step - put in my appeal. It was getting on for nine months before my appeal hearing date. However, the hearing was adjourned without me taking any part in it because DWP had messed up my records so badly that no decision could be reached due to legal technical points.
• It was about another six months before the second appeal hearing. The tribunal deemed that I should have been scored twenty points, and my award was finally made...
• ...but it was awarded for only four years. Since it took nearly two of those years to get from filling in the initial forms to finally winning my appeal, I now have less than two years before I'll have to start the process all over again.

Although I got very unlucky having to have both the assessment and the appeal hearing twice, most of the above is not unusual for autistic people claiming PIP. It's common to be rebuffed with zero point assessments; mandatory reconsideration are just a time-wasting extra step that rarely lead to any change; and about two-thirds of people who go through the appeal process eventually win.

So, steel yourself for possibly a long process, and if you possibly can, get a disability advocate that can see you through the process (CAB, Mind or a local NAS branch should be able to point you in the right direction.) Always remember too, that psychological reasons for a disability are just as valid as physical ones, though it will probably take an appeal before this will be acknowledged. For example...

• If you need prompting to do things like eat, say, because attention problems lead you to skip meals, this is just as valid as not being able to eat because you can't lift a forkful of food to your mouth.
• Severe agoraphobia, difficulties with navigation, or disorientation when walking in crowded places do count as mobility problems, as they affect the ability to get around safely just as much as physical immobility.
• Problems understanding language still count even if they only occur under certain conditions; e.g. in crowded places or when there's background noise.
• Anxiety, depression, etc. should be counted if you can show that your other conditions make you more prone to them.

Good luck!

To be honest, my biggest problem with it was all the waiting around for weeks or months between stages. I find nothing worse than having an important decision hanging in the air - my mind spends every idle moment trying to imagine every possible outcome and fretting over how the next stage will play out. If claims were assessed fairly in the first instance, in the way that the tribunal courts do, there would be no need for the vast majority of it.

The system is quite patently designed to be as confrontational as possible, and to dismiss claimants at every possibly opportunity in the hope that they will just give up and walk away. Even the High Court has ruled that the assessment process is flawed and being implemented by contractors who are not fit for purpose.  However, most people's chances of success are much better than they usually think, so long as they're prepared for the long haul. I know two other autistic people personally, and have seen several others on forums, who went through the charade of being awarded zero points, even after Mandatory Reconsideration, but were successful at appeal.

You make the PIP process sound like a real drama.

I was advised to apply for it (& ESA) by one of my multiple advisors as part of an action plan.  My other advisors laughed in my face and said I had no chance of getting it.