Hi, my name is sprocky! the dreaded PIP letter has arrived for my 16 year old boy

sprocky Community member Posts: 2 Listener
edited February 2023 in PIP, DLA, and AA
Good morning, the dreaded PIP letter has arrived for my 16 year old boy. I've no idea where to start, the form reads so terrible! We've not seen CAMHS since moving to Wales 2 years ago and the GP told me last week you probably won't see them now you will just be moved to adult services! My son has autism and adhd and thankfully the meds he is on work for him. All the letter I have from CAMHS and pre covid and from Bristol where we used to live. I need some help filling the form in so we get awarded this much needed PIP, the expense of a teenager increases so much now x


  • bg844
    bg844 Community member Posts: 3,887 Championing
    PIP is awarded based on how your disability affects you, not if you are seeing specialists. It does not matter if you have a medical diagnosis, yes it does help but many do receive PIP without diagnosis successfully. Have you phoned to apply? Can your son manage his own affairs?
  • poppy123456
    poppy123456 Community member Posts: 57,305 Championing
    We can't physically help with the forms but we can advise you. There's a guide here that may help. https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form-pip/

    When filling out the forms don't forget to add a couple of real world examples of exactly what happened the last time they attempted each descriptor that applies to them. Include detailed information such as where they were, what exactly happened, did anyone see it and what the consequences were. You should aim for at least half an A4 side of paper per descriptor that applies to him.

    It's important to remember that PIP and DLA are completely different benefits and the criteria is very different. There's a guide here but it's long. https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria I'd advise you to have a read before starting to fill out the forms, this way it will give you some idea of the descriptors and what they mean.

    Are you his appointee? You can also get some expert advice and help with the forms from an advice agency near you. https://advicelocal.uk/welfare-benefits If you need extra time to return them then you can ring PIP to ask and they will extend the time by a couple of weeks.

  • sprocky
    sprocky Community member Posts: 2 Listener
    thankyou @poppy123456 I do have a real issue with DLA ending for a 16 year old "child"! He's no way near an adult and the PIP form, imo, is really based around a physically disabled person not a person with asd and adhd! Looks like I've got some reading to do, good job it's half term and I'm off work! :neutral:
  • poppy123456
    poppy123456 Community member Posts: 57,305 Championing
    You're very much mistaken when you say PIP is aimed more at physical conditions because that's far from correct.

    Although PIP isn't awarded based on any diagnosis, lots of people claim it because of ASD and ADHD. When you read the long link i posted then this will hopefully become more clear.

    For example. Dressing/undressing, does your son need prompting to change his clothes? If so and you didn't prompt him how long would he wear the same clothes for? Autistic people are often very set in their ways and don't like change, they often have a favourite piece of clothing and will wear that for as long as they can, without any care in what it looks like or whether it needs a wash.  I know this because my daughter is Autistic (she claims PIP)

    Engaging with others face to face. Does your son need any support with this? When he's around others does he speak and can he hold a conversation with them? My daughter needs support with this because when around others she doesn't communicate and will sit or stand there without saying anything, unless you speak to her and then a lot of the time she will just give yes or no answers or just say i don't know.

    There's at least another 4 or 5 activities that he may score points with too. Remember if he can't do something safely, reliably and to an acceptable standard then he's classed as not being able to do it at all.

    Explain everything in detail (without giving his life story) include those real world examples. Some people find it helpful for those that know him well to write a supporting letter.

    Do you have his ASD assessment report? My daughters report goes into a huge amount of detail and explains her very well. You can use a highlighter pen to highlight the most relevant parts of a report, especially if it's long. This is what i did.

    Hope this helps a little.
  • anisty
    anisty Community member Posts: 354 Empowering
    Hiya, I know how you feel as I too have a son with autism who was on dla until he was in his early 20s (pip roll out was slow in our area)

    He actually ended up being awarded higher on pip. He was on middle rate care, low rate mobility for dla and got both parts enhanced for pip.

    It also ended up being a paper-based assessment so the only really stressful part was the wait (about 16 weeks total i think from start to finish from dec 19 to very late march 2020)

    What i will say helped is submitting his ADOS report done 2011 (yes it really was 9 years old but they definitely looked at it)

    And also his cognitive asst report. He had had a WISC done also 2011.

    I also gave the contact details for his support worker at the autism centre and they did phone her.

    With each descriptor, i went through and thought what happened when he tries each task. I made a mistake initially with the dressing one as he can dress independently - remember that one you must also factor in the ability to choose appropriate clothes for the weather.

    If my son cant do something (like prepare a meal) i really thought hard about what stops him being able to do that - and wrote it down.

    This site is excellent. After submitting my form, i also found the site Benefits and Work. They produce a fabulous guide telling you exactly what each descriptor means. It costs about 20 quid for a year's membership and you can download their guides then.

    Im never sure if it is ok to mention that site on here - apologies if not