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Joy2TheWorld

Hi I’m Joy, I’m from Northern Ireland- I’m a late diagnosed Autistic older woman with undiagnosed ADHD - Over the last 18 months I’m had phone call support of 30 minutes a week. Out of the blue with no warning or mutual discussion. My support worker says my support call will Change to once a month. I slow processes went into shock was dizzy - happened to be going for counselling, had therapy with my counsellor over it and also talked it through with a friend who is a retired educational psychologist. Last Friday I emailed the charity that offered the telephone support. The reason for the change was that I was successful at a PIP Appeal- I said my Autism/Adhd doesn’t change or need less support because I Was successful at Appeal I just have other stressors. I asked for a review and action points moving forward. Asked why there had been know mutual discussion. -

I rang  the charity yesterday as I still didn’t have a reply, after that I got a reply from support worker.
No Apology to approach to changing telephone support, She said she can only offer once a month support and would increase it to 45. - which I find inadequate- I’d asked in my email if it was a funding issue that wasn’t addressed. As was many answers to my my questions and many assumptions made - although they are a neurodiverse charity - the support worker didn’t approach this change or think of this change with a neurodiverse person in mind and as to saying - the change was due to my PIP Appeal success - it was nothing to do with that it seems - it seems the charity needed to cut the hours. But I thought a 30 minute phone call was limited support as I had had 2 hours face to face support before - but I’m not sure how the charity offering me 30 minutes a month can even scratch the service - she’s now offered 45 mins but that’s hardly any difference. No mutual discussion, no openness, no opportunity for review or action points. - I’m answering my own question- that it’s not looking good moving forward. But I would like people’s input on the this forum. Thankyou 

Parents

  • Hey Joy,

    First of all, welcome - and I’m really sorry you’re going through this.

    What you’ve described is incredibly stressful and, honestly, pretty poor practice - especially from a charity that says it’s neurodiversity-affirming.

    Suddenly dropping your weekly 30-minute call to once a month (even if they offered 45 minutes) with no discussion, no warning, and no apology is exactly the kind of abrupt change that can send autistic people into shutdown or meltdown. The fact they linked it to your PIP success feels dismissive and inaccurate - winning PIP doesn’t mean your support needs have vanished.

    You were completely right to email them asking for a proper review, action points, and an explanation. The lack of openness and the unanswered questions about funding make it feel like they’re making decisions about you rather than with you.

    A lot of us here have had similar experiences with support services suddenly scaling back without proper consultation. It’s not just inconvenient - it can feel invalidating and destabilising.

    You’re not overreacting. This matters. Your support needs haven’t magically disappeared just because you won your PIP appeal, and you deserve to be treated with respect and proper process.

    Would you like some wording you could use if you decide to reply to them formally, or help thinking through what a reasonable compromise might look like? Or if you just want to vent more, that’s fine too.

    You’re not alone in this. Sending you solidarity from Northern Ireland too. Yellow heart

    Here are some links you might find useful, Joy2TheWorld:

    If you want to complain formally, email Autism NI's info line - they're the big local one. Or Citizens Advice NI for PIP/support rights (they're free).

  • in reply to lostmyway

    Hi Lost your way - Thanks for info and expressing solidarity. Have reached out to Autism NI Helpline- There was a voicemail yesterday they might get back Monday. I’ve been part of Autism NI peer groups in the past. Help to word a formal reply might be helpful - Thankyou 

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