Help with PIP Award 10 March at 1:37PM in Benefits & tax credits 16 replies 1.5K views

peteuk

olgadapolga said

The really stupid thing about all this is that her problems in this particular area, with the dyspraxia, can never get better. It's a lifelong problem, yet they said that her conditions had "improved". No, her mental health which was crippling her daily life had improved but the issues around being able to find her way around can never improve. She even got lost trying to get to the initial re-assessment appointment. That was after I had helped work out how to get there, down to bus stop numbers, train times, etc., and trying to direct her en-route over the phone.In the end I had to get her to ring them to say that she was going to be late, she got very distressed about the whole situation and then they said that she could then have a telephone appointment! She left two hours early because she was worried about being late and ended up wasting a whole morning plus a train fare.

It's a massive nightmare for her (and us) because she gets lost so often. I've had loads of phone calls where she says she's got lost - trying to figure out where she is using Google maps from another town is really difficult. Especially when she doesn't comprehend the concept of left and right. It's hard for us but so much harder for her.

With dyspraxia depending on the level of its effect, it can be overcome to some degree with education and life skills.  Just purely having the diagnosis (like any other condition) doesn’t automatically qualify for PIP.

If the assessment was F2F did anyone go with her?  If she was stressed has she told them about being lost and needing your support?  The assessment is just that, one hour or so and based on answers from the form and the assessment,  Providing additional info helps depending on where its from.  Annoyingly the system is set up to be unhelpful and difficult.

Hopefully the MR will bring some comfort to you both.

And to end on a helpful hint, WhatsApp allows you to share your location. So if she has the app she can be talked through sharing her location with you. 

olgadapolga

peteuk said:

olgadapolga said

The really stupid thing about all this is that her problems in this particular area, with the dyspraxia, can never get better. It's a lifelong problem, yet they said that her conditions had "improved". No, her mental health which was crippling her daily life had improved but the issues around being able to find her way around can never improve. She even got lost trying to get to the initial re-assessment appointment. That was after I had helped work out how to get there, down to bus stop numbers, train times, etc., and trying to direct her en-route over the phone.In the end I had to get her to ring them to say that she was going to be late, she got very distressed about the whole situation and then they said that she could then have a telephone appointment! She left two hours early because she was worried about being late and ended up wasting a whole morning plus a train fare.

It's a massive nightmare for her (and us) because she gets lost so often. I've had loads of phone calls where she says she's got lost - trying to figure out where she is using Google maps from another town is really difficult. Especially when she doesn't comprehend the concept of left and right. It's hard for us but so much harder for her.

With dyspraxia depending on the level of its effect, it can be overcome to some degree with education and life skills.  Just purely having the diagnosis (like any other condition) doesn’t automatically qualify for PIP.

If the assessment was F2F did anyone go with her?  If she was stressed has she told them about being lost and needing your support?  The assessment is just that, one hour or so and based on answers from the form and the assessment,  Providing additional info helps depending on where its from.  Annoyingly the system is set up to be unhelpful and difficult.

Hopefully the MR will bring some comfort to you both.

And to end on a helpful hint, WhatsApp allows you to share your location. So if she has the app she can be talked through sharing her location with you. 

Thank you for your comments.

We understand that diagnosis does not equal qualification for PIP. My daughter's dyspraxia affects her in many ways in her daily life, which we have detailed in the MR. She has learned some ways to deal with some aspects but a lot of it will remain an issue for life. She also has anxiety and other health conditions which complicate things for her further so the combined affects have all been detailed in the MR.

The appointment was F2F, otherwise she would not have got lost. She rang them to rearrange the appointment as she wasn't going to get there on time and she was so distressed on the phone that they rearranged it for a telephone appointment. She didn't have anyone to go with her as I live 100 miles away and have other younger children. We had worked out her route but it was when she was trying to find the bus stop after she got off the train that she got hopelessly lost. At the time I was taking my youngest daughter to hospital for a lumbar puncture so she rang her dad, who struggled to direct her. She then rang me and I had to get off the motorway to try to help her but by that time she was late. She left at 6am for a 9am appointment.

My daughter did tell them during the telephone appointment what happened and that she got lost going to the F2F appt. I wasn't there for the telephone appointment, I live in a different place. I did help with the MR, and if it goes to tribunal I will go with her.

I've talked to her about the location issues, she's happy to have a tracking app on her phone and was quite excited about using the what3words app as well so when she's back home at Easter we'll set it all up with her.

olgadapolga

So, we have received the decision from the Mandatory Reconsideration.

Surprise, surprise, they have rejected it and maintain that the initial decision was correct and have said that she is not entitled to PIP.

So I guess that this means that my daughter has to go to a tribunal. 

This is well out of my sphere, so would it be better to try to find an advocate or just continue the fight ourselves?

olgadapolga

I've been reading the MR again and they appear to think that my daughter can undertake an unfamiliar journey unaided. She absolutely cannot.

The MR goes on to state that, "To need an aid, a device must be needed to help you complete this activity. To need prompting, another person would be needed to help you manage this activity. To need assistance, another person would need to physically help you including some, but not all, of the activity. To need supervision, another person must be with you all of the time while you are completing the activity to ensure your safety.

"The activity of going out does not cover your physical ability to walk, it considers your mental or sensory ability to plan and follow a route and how much distress going out would cause."

I looked at the Citizien's Advice PIP descriptors information which states "Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid". My daughter has to use apps like Google Maps to plan a journey (other than those she's familiar with). Following Google Maps is a nightmare for her and nine times out of ten, she has to ring me as she's got lost. If she's going on a trip with her university, one of her fellow students will usually volunteer to accompany her. We told them but they seem to be ignoring this. Surely this counts as needing an aid or assistance/supervision?

The letter ends, "We have based our decision on how your conditions affected you at the time of your original decision. Any new conditions or deterioration in your diagnosed conditions since your assessment cannot be considered and you would have to submit a new claim". 

The unfamiliar journeys problem has never changed, nor will it. She will always have a problem with this.

I don't want to mess this up for her but am worried that I will! She has reached out to an advocacy service but is waiting to hear from them and in the meantime, the clock is ticking. We have to submit the appeal to a tribunal before 6th May.

If anyone has any advice, I'd appreciate it (as would my daughter who is stressing about this due to having three essays to write as well).

Spoonie_Turtle

Planning using Google Maps most likely wouldn't count, as it's not an aid specifically designed for a disabled person to use.  However if she can't then follow the journey by herself, that counts as needing help.  When you help her over the phone, that is prompting; is it enough to help her so the journey without undue distress?  If not, she would need someone physically there to enable her to follow the journey to an acceptable standard without undue distress or taking twice as long as it's supposed to.

Is she okay by herself following familiar routes?


Regarding your question about tribunal, it's probably best if you can get help.  Even if it is doable by yourselves, it should be an awful lot easier if you have someone experienced to guide you through it.

olgadapolga

Spoonie_Turtle said:

Planning using Google Maps most likely wouldn't count, as it's not an aid specifically designed for a disabled person to use.  However if she can't then follow the journey by herself, that counts as needing help.  When you help her over the phone, that is prompting; is it enough to help her so the journey without undue distress?  If not, she would need someone physically there to enable her to follow the journey to an acceptable standard without undue distress or taking twice as long as it's supposed to.

Is she okay by herself following familiar routes?


Regarding your question about tribunal, it's probably best if you can get help.  Even if it is doable by yourselves, it should be an awful lot easier if you have someone experienced to guide you through it.

Thank you for responding.

My daughter can cope with familiar journeys, so she can get herself from her halls to her lessons, or to the nearby shops. She can put an address into Google but cannot follow a route, even with Google directing her as she doesn't know left from right and struggles to process too many given instructions. Even if she has written instructions, she struggles to process them.

So she uses Google maps as best she can but usually rings me as she's lost. We have had situations whereby she still can't figure out where she is, so I have to try to work out where she is so that I can direct her. I have to ask her what she can see around her, be it a street name, or a shop, whatever! And trying to direct someone who doesn't know left from right is perplexing. She also has anxiety, so this adds to the problem as she gets distressed and will go into a full blown panic attack unless I or someone else can help her. I have known her to ask complete strangers to help her, luckily most are kind and will assist.

Uni trips are awful for her, she gets upset when told about them and then has to ask someone to accompany her to ensure that she gets there and on time. 

Re the tribunal, should we get help for her with actually completing the online form or just for the hearing (can't think of a better word) itself?

Sorry for asking so many questions, I'm really out of my depth here.