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ai u to be worried and think my high functioning autistic dd will be denied pip?

(21 Posts)
flirtygirl Thu 03-Nov-16 07:28:42

Hi im not sleeping and pip assessment is next week. My dd is 17 and hfa and add. She has a curvature of the spine and doesnt sleep great, she has been on sleeping medication since she was 6 yo. She also suffers with bowel problems and her back pain is worsening but gp keeps saying surgery not a real option due to known complications and its better to manage pain but no longer refers her to physio as she has been for years with no result.

I rang pip dept asking for a home visit and was refused as she does go out, i let them know how anxious she is going to new places and buildings and how much prep that takes me and her, as they sent me an appointment with 6 days notice. I did manage to get the appointment moved so i have time to drive to another town, explain to her what is happening, show her the building so when the assessment is here she wont freak out.

Please any tips on the pip assessment from an autism or mental health viewpoint, as so much is hidden and im not sure how to communicate it across. She wont communicate with them directly so it will be me as her dwp appointee. She probably wont cooperate, will this count against her?

I suffer with panic myself and ocd so really going round in circles over this. (Ive never claimed for myself even when i became borderline agoraphobic and seriously depressed as apying for anything is too stressful and i have made such improvement through cbt.) Thankfully been on an even keel for 5 years.

She has had dla high rate care and low rate mobility for 12 years but pip is worrying.
To get her out and about it takes such prep, nobody sees the constant work i do at home to get her to do anything and the constant training to minimise autism. But without pip we lose some tax credits and carers allowance. £60 a week carers allowance for what was until sept 24/7 care as she didnt go school but started college in sept after a year and a half prep. Started the process last easter but last sept she was not ready to go college so started this sept with fulltime 1-1 support workers. (Has ehcp)

I sent a gp letter and her last consultant appointment letter with the pip form, 10 pages, should I supply the older educational psychologist and consultant letters and her ehcp?
Is it too late to send it all dwp or should i take it to interview? What more can i do say and do at pip assessment? Tia

flirtygirl Thu 03-Nov-16 07:31:32

Applying not apying, thanks and sorry for lack of commas.

BecauseIamaBear Thu 03-Nov-16 07:36:10

Probably quite reasonable to worry.

Reading your post I do wonder if you would have a greater chance if getting the right assessment if you were to let her freak out at the assessment. For sure it will cause a bit of upset, but if the paper pushers actually see her in full flow and not able to answer anything she us asked, you may get the result you need rather than the one they want to hand down in advance?

Fingers crossed for you.

AnotherEmma Thu 03-Nov-16 07:41:25

Hi OP,
It's normal to feel anxious about the assessment, so of course YANBU. But my advice is to try your best to stay calm and positive. All you and your DD need to do is tell the truth about her condition and how it affects her. Hopefully the assessment will be fair, but if her application is not successful for any reason, you can and should challenge the decision. I suggest you hope for the best and once you get the decision letter, if it's not what you were hoping, take it to Citizens Advice so they can help you request a Mandatory Reconsideration (MR). If you need to send more evidence, you can send it with your MR request. Here is info about the evidence you would need to provide:

SymphonyofShadows Thu 03-Nov-16 07:41:28

Unfortunately you have to illustrate what happens on her 'worst' day so I wouldn't prepare her at all. It's not fair and will be upsetting but they need to see her at her least capable IYSWIM?

abbsismyhero Thu 03-Nov-16 07:44:52

Let her freak out I hate it when they refuse a home visit

Saying that its unfair on her to go through that just to get money she is clearly entitled toosad

AnotherEmma Thu 03-Nov-16 07:45:19

Citizens Advice also have a helpsheet which you can print to read before the assessment and take it with you as a reminder:

SprogletsMum Thu 03-Nov-16 07:47:55

I would also not prepare her so that they can see why she needs the money. It's awful that you would have to do that but will show them why she is entitled to pip.

AnotherEmma Thu 03-Nov-16 07:53:43

(Reading through the info from Citizens Advice, it looks like you can take extra evidence with you to the assessment, so I suggest you do that if you can get more evidence in time - but the letters / reports / care plan should be reasonably recent, and they should say how your DD's conditions affect her - appointment letters aren't relevant or necessary.)

flirtygirl Thu 03-Nov-16 07:59:41

To add so i dont dripfeed, dd is hormonally aggressive and sometimes dangerous, she had a children with disabilities social worker but in 2008 we lost this and respite over night with no notice. Worst week as i was ill and got admitted to hospital on day respite was due. Social services support is non existent in my area so getting support has been lacking since 2008 and non existent since 2010.

Also my mum has always helped me with dd and i was hoping to get a part time job, if college for dd went well. However this was dependent on my mums help with childcare and she was diagnosed with breast cancer two months agoand gad breast removed and is undergoing chemo, so im now caring for her also and have lost her invaluable help.

I also have a 7 yo dd whos at home and this has been successful till now and suits us both.

I feel fucked as losing pip means losing carers allowance when i have 2 caring roles and normal mum duties and finding a job was always going to be hard (fitting in with mums work hrs so she could care for 17yo, dd7 can go to childminder but dd17 cannot, ocd considerations so not care work, school job or healthcare, 16-20hrs per week so i can maintain my sanity and still home ed dd2 as she doesnt want to even try school) but knowing this is an imminent possibility, its even harder now.
Is my even keel about to collapse?

Bonkerz Thu 03-Nov-16 08:04:17

I'm going through this at the moment too. My son was 16 in July and we are transferring from dla to PIP. It's not been an easy ride!
Ds has autism and ADHD and has been in a specialist school for autism since he was 8. He has only done one GCSE and can't attend mainstream due to aggression and emotional issues.
We did have his assessment at home but that in itself has been a nightmare. The first assessment was 4 hours long then 3 weeks later we had a second at home for 2 hours. We are now waiting the decision.
Ds sat at table with us for about 20 minutes than had to leave the assessment and I took over.
Can you push for a home assessment?

flirtygirl Thu 03-Nov-16 08:04:32

Thanks to those who posted whilst typing up my extra monologue, good adcice and i will read the links.

I did think it unfair for her to freak out and have a meltdown but think you are right that they should see it.

flirtygirl Thu 03-Nov-16 08:06:52

They refused home assessment Bonkerz. Are the assessments usually this long? flowers for you and your son, its such a stressful time isn't it?

Helenluvsrob Thu 03-Nov-16 08:18:05

much hugs flirty.

This is a huge problem isn't it.. I know it's a bad think to think for you and her as I don't want her to be distressed, but actually if it does really upset her and she kicks off big time they will see 1st hand what you cope with day to day.

Helping a friend to fight a PIP with a young adult. Apparently " too well fed and looks really well presented" so she can have issues. umm yeah.... because Mum loves this person to bits, cuts food up for them , picks appropriate clothes and changes them several times a day so you cant tell what they 've eaten by reading the jumper!

ToastyFingers Thu 03-Nov-16 08:18:39

There was a really helpful thread on this, from a MNer who had worked as an assessor or something similar.

I can't link, as I'm on my crappy, malfunctioning phone, but the gist of it was:
don't prepare, the people assessing will deem her to be as capable every day as she is during the interview.

I'm so sorry you're having to go through this. The hoops disabled people and their families have to jump through, just to achieve an acceptable standard of living, are disgusting.

Peach9876 Thu 03-Nov-16 09:44:18

I had a successful PIP but not for mental health or learning difficulties so not sure if it will be overly helpful.
But the woman just went over all the questions in the form. I think she just wanted further details. She did a bit of a physical, I was in agony so ended up failing trying to hold back screams whilst DP whipped out morphine and a syringe.
I think you should prepare your daughter and write down everything you have to do in order to prepare her. Even prepared if she refuses to talk or engage that is fine.
I cannot imagine given everything you have said regarding her needs, the support she has at college etc that they would refuse to give her PIP so try your best to relax and take it step by step.

unweavedrainbow Thu 03-Nov-16 09:57:22

In terms of home assessment, my suggestion would be that you get a HCP/support worker to request one in writing-requests from HCPs very very rarely get turned down. Also, do they know she's aggressive? IME (I volunteer filling in PIP forms and have done hundreds) ATOS/Maximus are very reluctant indeed to put someone who is unpredictable or aggressive in a room with an assessor. If you can get an a hcp to write a letter stating her aggressiveness you might be paper assessed yet.

unweavedrainbow Thu 03-Nov-16 10:02:41

The thing is that the vast majority of people on DLA (OBR stats say 85%) move over to PIP without much bother-and those that don't were generally on low rate care anyway, but that's adult DLA to PIP, iyswim. Moving from kids DLA to adult DLA was always quite tricky as the parameters are different and the same is true of PIP. The questions just don't apply to most kids, IMO. How many 16 year olds manage their own finances and cook their own meals entirely independently? It's silly.

Ohthepressure Thu 03-Nov-16 10:32:02

This is the thread Toasty referred to :

flirtygirl Thu 03-Nov-16 10:55:31

Thanks that thread is truly helpful, im going to print out the cab sheets later and have set aside time tomorrow to find her other reports (filed but back of cupboard).
I started to prepare her this week but im making her stressed and i think her non cooperation may be better.
18 months ago was the change to adult dla and that was stressful but they agreed to a home visit and dwp appointee visit also at home, now not long later and its more hoop jumping.
I did put about her aggression on the pip form.
Ive also been told that she doesnt look autistic as shes so nicely dressedconfused
Maybe i should put her in any old clothes and not bother to wet wipe her if she spills her breakfast/lunch down herself.
Never would do though.

unweavedrainbow Thu 03-Nov-16 11:54:01

No, you need to get a hcp to write a letter specifically stating her aggression and stating her behaviour would be potentially violent and unpredictable. The dwp only really accepts things if a doctor or someone similar writes them down.
If this is an adult DLA to adult PIP transfer she should be absolutely fine so I wouldn't worry so much. HRC DLA is statistically much harder to get than enhanced rate PIP.

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