PIP Mobility Question.

anotherquestion

Hi folks,

Our teenage son is being migrated from DLA to PIP,  he has severe learning difficulties, Autism and is non-verbal, also has epilepsy. We have to keep an eye on him at all times when out and about, walk beside him etc, hold his arm so that he doesn't wander off.

As regards the PIP Mobility question about being able to walk 200 metres or so, Just wondering what is is the best way to answer this,  should we answer NO as he cant do it safely by himself, or answer Yes but then write in the box that he can't safely do it by himself.

Thanks a lot for any advice.

Alice_Holt

For Mobility it will be the 'Planning & Following a Journey' activity that is important. 
As he can't follow a familiar journey safely without being accompanied due to his non verbal autism he should be looking at a enhanced award for that activity alone.

The 'Moving around'  activity looks at the impact of physical problems - so this is where you need to fully explain the epilepsy.  Frequency, risks (particularly given this risk in combination with the autism effects), whether he has a warning of the seizure (and is able to act on that by himself ? ), need to be fully explained on the form. Some repetition with detailed points made in the other mobility activity is fine.
I might suggest ticking the 'It varies' box - then explaining about his epilepsy fully in your comments.

Just make sure the DWP decision makers get the full picture, so using additional attached pages is often worthwhile as is giving recent examples. The key is that your form gives the DWP DM full details on why and how he needs help with the relevant PIP activities and why he is unable to do them reliably on his own.  

anotherquestion

Thanks Alice,

We have a mobility car as he has already gets enchanced DLA, we have letters from his social worker and consultant as regards the epilepsy. Unfortunately we don't get any warning when he is going to have a seizure, we don't know if he does as he can't communicate it to us anyway, luckily the seizures aren't too frequent, three in last six months.

When we applied for PIP we give permission for the DLA medical notes to be looked at too.

Brie

I've always heard it suggested you answer questions as if it's a bad day not a good day or even average.  So he might be ok for some some things some days but maybe he's worse if he's had a seizure recently or even something relatively minor (favourite socks in the wash or whatever, whatever is minor to you or me but major to him.)

Certainly no sugar coating.  Are you getting Citizen's Advice to review the paperwork before it's sent in?

Alice_Holt

With PIP, the risk and greater potential for harm together the severity of consequences from potential seizures is paramount.
This is the result of a 2017 Upper Tribunal ruling.
https://www.gov.uk/administrative-appeals-tribunal-decisions/rj-gmcl-and-cs-v-secretary-of-state-for-work-and-pensions-v-rj-pip-2017-ukut-105-aac

So, on the form it's important to detail the severity of consequences and the harm that could result from any seizures.

peteuk

The question you should ask is if you took him to a field and stood 200 meters away from him would he be able to make it to you on his own.  

The answer I would suggest given your post is no, for obvious reasons..  If the answer is yes then how would he be afterwards?can he do it repetitively? and then can he do it repetitively and safely?

If you have an assessment then as an assessor I was taught to increase the distance, so can he stand and move around the room, how is he around the house?  Can he walk down the garden (if you have one) how far is it to the shops, can he walk that…

If you have evidence to support this, reparative falls, physio or OT assessments, referral to fall teams, but dont worry if you dont.  

poppy12345

Brie said:

I've always heard it suggested you answer questions as if it's a bad day not a good day or even average. 

No, not at all and that's something you should never do. You should explain all of your days and not just the bad ones. PIP is about how you are at least 50% of the time over a 12 month period. You do not need to be affected all of the time. 

If someone filled out the form as if it was a bad day and they attended their assessment in person and it was one of their better days, the assessor could think that they may not be as bad as they indicated they were. 

Alice_Holt

peteuk said:

The question you should ask is if you took him to a field and stood 200 meters away from him would he be able to make it to you on his own.  

The answer I would suggest given your post is no, for obvious reasons..  If the answer is yes then how would he be afterwards?can he do it repetitively? and then can he do it repetitively and safely?

If you have an assessment then as an assessor I was taught to increase the distance, so can he stand and move around the room, how is he around the house?  Can he walk down the garden (if you have one) how far is it to the shops, can he walk that…

If you have evidence to support this, reparative falls, physio or OT assessments, referral to fall teams, but dont worry if you dont.  

    As I have explained (and provided a link) the frequency of falls due to epilepsy are less important than the risk and severity of harm. Here is another link explaining this from CPAG:

https://askcpag.org.uk/content/200064/-safely-in-personal-independence-payment

As I read the OP - his son has two conditions affecting his mobility -
i) Non verbal autism,  and
ii) Epilepsy.

The place to explain i) is in the Planning & Following a Journey  as, it sounds like the son, needs constant supervision to ensure his safety outside. He may not be safe walking on his own (alongside a road) even  to his local shop.
He may be totally unable to use any form of public transport without being accompanied.

I'm afraid I don't think your answer particularly helps the OP as it appears to conflate the physical difficulties of standing and then moving around with the difficulties non verbal autism brings. The planning and following a journey is concerned with 'overwhelming psychological distress' relating to either an enduring mental health condition or an intellectual or cognitive impairment. 
Also it doesn't appears you have actually considered my posts.

I know you were an assessor, my background is welfare rights where we succeeded in getting well over 90% of flawed PIP assessments overturned at tribunal. Very often this was due to assessors not applying relevant case law, or getting confused over the basic legal  interpretation of the PIP descriptors.

If the OP is unsure / struggling with the form, it may be worthwhile getting an appt at his local advice charity.
https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form-pip/

peteuk

@Alice_Holt thats fine  if we all saw the same thing the same way, then life would be dull.

I totally agree that the more important aspect here is planing but I wanted the OP to be aware of the way they will question the mobility question.  And some of the questions likely to be asked.  Bearing in mind that mobility is based on physcial conditions.   With both Episplsy and non verbal autism being neuro conditions. These as you have stated will effect activity 11. 

anotherquestion said:

Our teenage son is being migrated from DLA to PIP,  he has severe learning difficulties, Autism and is non-verbal, also has epilepsy. We have to keep an eye on him at all times when out and about, walk beside him etc, hold his arm so that he doesn't wander off.

Nothing above says he cant walk 200 meters, physically wondering off doesnt come into mobility, because he can wonder for 200m, which is what the OPs quesiton was. I totally agree that putting a physical emphaisis on this activity doesnt take into account other aspects of health.   

So actually when it comes to mobilising things likes falls are important, even if he has daily seizures it still means he can walk 200 meter on the majority of times.   I get with the Autism that acknowledgment of warnings of seizures might not be there. Equally we dont know the extent of the seixures.  But physically this young man could run a marathon, he cant but that doesnt come into this aspect. 

Oh and thanks for highlighting my spelling mistake. I worked hard to overcome my difficulties, qualified as a nurse and went on to get a degree. Occassionally I switch off, or when tired not spot stuff on re-read.  

poppy12345

peteuk said:

@Alice_Holt thats fine  if we all saw the same thing the same way, then life would be dull.

I totally agree that the more important aspect here is planing but I wanted the OP to be aware of the way they will question the mobility question.  And some of the questions likely to be asked.  Bearing in mind that mobility is based on physcial conditions.   

I don't understand your reasoning for your earlier example because that part doesn't apply so questions like that won't be asked. 

Mobility isn't just physical conditions, it's following and a planning a journal too. You are former PIP assessor so you know that anyway so I'm confused why you say mobility is physical conditions. The moving around part is physical conditions. 

Alice_Holt

peteuk said:

Oh and thanks for highlighting my spelling mistake. I worked hard to overcome my difficulties, qualified as a nurse and went on to get a degree. Occassionally I switch off, or when tired not spot stuff on re-read.  

        I highlighted the word, not to bring attention to a spelling mistake (my spelling is also poor and is greatly helped by the use of spellcheck), but because i wanted to emphasise that the frequency and repetition of seizures is much less important for a PIP award than the risk and potential severity of harm arising 

     When writing the form the OP should explain why any seizure outside could be dangerous for their son (no warning, allied to the non verbal nature of the autism, etc, etc) and consequently why someone always needs to be present and able to supervise  when outside.

  OP - There are two other activities where spelling out the risks of an epileptic seizure are vital on the form (both in the Daily Living section):
  i)     Cooking and preparing a meal.  Should seizures happen without warning - then for safety (at the very least) - constant supervision is needed and arguably your son cannot safely cook a meal on his own. 
  ii)    Washing and Bathing - constant supervision when bathing due to the consequences of a seizure when in the bath.