When you're offered meetings instead of services

Dear meeting organiser,

Thank you for your letter about the information meeting.

I hope that you will understand that I am not really interested in a pie in the sky document that no doubt took many well paid man and woman hours to produce when I can't get a therapist on the phone, I've had to cancel my daughter's one night a month respite again due to concerns about her care, and this year's school leavers from my daughter's school had not started in adult services last time I checked.

Also the meeting time clashes with my children's bedtime.

Yours sincerely

Smiley's Mam

This is the email that I nearly sent last night after receiving an invitation to a briefing meeting about the draft Interim Standards for New Directions, a document produced by the Irish Health Service about standards in adult services for people with disabilities.  I spent longer than I should wading through the 87 pages of jargon yesterday.  It's all very worthy and PC-friendly with lots of aspirations and plans for more meetings, and information sessions and documents to be signed, as well as plans and reviews and monitoring and evaluation.

It also looked like just another tick box exercise.

Has Smiley had her behaviour support plan?  Yep.  Tick.

Has she been encouraged to try out new experiences? Yep. Tick.

Has her personal plan been reviewed? Yep. Tick.

Is there anywhere suitable for her?  Nope. Tick.

Is there any funding available?  Nope. Tick.

Oh well, she'll have to stay at home then.   But everything is fine, because everyone has done their job, and all the little boxes have been ticked.

Actually no, everything is not fine in this scenario.  My daughter deserves better than that.

If Smiley's service provider wants to earn my respect, they need to stop organising meetings and start improving services.

And the reason I didn't send the email?  Because I'm afraid that all they'll do with it is tick the box that says "not attending"....

Note: I realise that my children are luckier than many in that they do have services.  But I still have the right to complain - if I don't we could all up with nothing.



18 comments:

  1. The phone rang 5 minutes after I published this... perhaps more people read it than I realise :)

    ReplyDelete
    Replies
    1. I should also say that it's not the therapist's fault that they are not easy to get hold of - it's because they have an increased work load and many of them now work out of a central location instead of in the schools

      Delete
  2. You have every right to complain. Hope the phone call was what you wanted. xx

    ReplyDelete
  3. Not complaining just because others have it worse off isn't the way anything will change - I'm glad you got that call, hopefully it helped!

    ReplyDelete
    Replies
    1. That's my way of thinking too, and yes the phone has been hopping since I wrote this. Coincidence or....

      Delete
  4. You have every right to complain, smiley deserves the best and what she's getting doesn't come close
    Aud xxx

    ReplyDelete
  5. Not only do you have the right to complain but I also think that you should send a link to this post instead of the e-mail you drafted. And, maybe give out the e-mail address to your readers so we can send the link too.

    ReplyDelete
    Replies
    1. Oh you know me, I like to hide behind my blog, I'm not sure I'm ready for that!

      Delete
  6. I have to say, I still can't understand why there are years of waiting lists for everything in this country. We had a meeting at the end of June for Ciaran ( he's starting in the 6 to 18 team) and he's on the waiting list for SLT and OT. It's September, I still haven't heard anything... Glad the therapist rang you, they're not at fault, there's just no funding and they're doing their best with what they have (which is not much unfortunately)

    ReplyDelete
    Replies
    1. I agree, it's absolutely not the fault of the therapists. Hope you hear something soon x

      Delete
  7. I so feel your frustration in that blogpost. I used to fill in all the questionnaires, forms, parent view type emails that came my way because i wanted them to listen, to change things, to make a difference. I now hit the delete button when those things come into my inbox because i got fed up of no-one listening to the real issues and those that did listen and care were the ones that didn't actually have the authority to change things. We tried complaining, we tried not complaining. Nothing made any difference. Now we are just glad that things at the moment are kind of ok so we just carry on as best we can. x

    ReplyDelete
    Replies
    1. So sorry that nothing made any difference, but glad you're managing right now x

      Delete
  8. Gosh it stinks when the services you need are just not coming forward. I have no wonderful advice or ideas I'm afraid but sending you a big hug. Mich xx

    ReplyDelete
  9. By all and every god in this universe (and in others) you HAVE to fight.
    When Peter left school 6 years ago we were given 21 nights respite (reduced from the 32 we eventually grudgingly got in child services) and absolutely no support. Zilch, nada, nothing. (there was an even more grudged 3 hours a week in child services, no use to man, beast or us, but I took it anyway) Even the Social Worker told us to take it up with the council and get "elected" representatives involved.
    We now have a budget which I can organise myself and Peter has a lovely family he goes to for respite, along with the other stuff we organize for him. He has 15 hours a week support - not perfect, but again, we make it work.
    Sending fighting vibes your way

    ReplyDelete
    Replies
    1. Thanks Julie, and I'm so shocked that Peter was left with NOTHING after school. Words fail me :((((

      Delete