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The challenges getting support - brilliant, heartfelt article

daffin November 1, 2018 13:15
Hello all, this article makes public the exasperating experience of trying to get help for our kids: https://www.theguardian.com/society/2018/nov/01/cruel-bureaucratic-maze-childrens-services-special-educational-needs?CMP=Share_iOSApp_Other
Edited 17/02/2021
nancydanfan November 1, 2018 13:49
What a depressing read but I would say all prospective adopters should read it so they can face the reality of what lies ahead.
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About you now November 1, 2018 14:07
Oh my goodness. Very depressing, but rings so true. My fears are that we could be writing an article like this in a few years time.
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chocoholic November 1, 2018 14:32
yes, this is a familiar tale. Sadly :( Glad the girl in question seems to be carving out her own stable niche now though. Good for her, and her amazing parents.
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Bluemetro November 1, 2018 15:11
It certainly shows the frustration, not only of hours spent filling in forms and having meetings only to be rejected or passed onto another waiting list. This can become all consuming for exhausted parents, but the thing that I think is of most concern is the child whom you are trying to help with their anxiety, putting them through various assessments with the hope that this time they may get help only to realise again that they have been let down.
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Johanna November 2, 2018 11:53
Very powerful articles and underlines the difficulties of assessment and support. I know that we paid privately for a specialist dyslexia class and it really helped our older girl .... She needed the help then and not an Assessment. We also paid privately when she first came for some sessions with an experienced play therapist as again she needed immediate help and she was almost 8. Unbelievably these actions counted against us as when we asked for further help because of her complex needs ,sws unqualified to make diagnoses decided that I had Factional Illness by Proxy . You could not make it up!!! I am glad to hear that this young person is doing so well . I agree with Ndf that prospective adopters will find this article thought provoking. Johanna
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safia November 2, 2018 12:34
Absolutely brilliant and soul destroying at the same time. I can relate to so much of this - unfortunately - it does make you wonder when they try so hard NOT to provide services who actually gets the available services provided - I suspect it the straightforward simple cases
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Bop November 2, 2018 13:56
Sadly the article reflects much of what we experienced... Our worst one was contacting post adoption support and asking for help as things were really tough, but not even getting assessed as we hadn't asked for an "assessment of needs" - we'd just simply said we needed some help!
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daffin November 2, 2018 19:03
We’ve spent nearly 5 years chasing an ASD, ADHD or FASD assessment, wondering and then knowing that there was something else in the mix other than complex developmental trauma. Now Monkey Boy has a diagnosis of all 3. After 4 years of being told ‘he’s fine’ by school, having the local CAHMS agree he’s complex but doesn’t have ADHD etc etc. So, so demoralising. The thing is, it’s such a distraction from what we need to be doing, which is parenting our incredibly complex and troubled boy. Timely intervention would have prevented our son traumatising our daughter and our son’s mental state and behaviour deteriorating to the point that he needs the very specialist provision of a therapeutic community. The costs of denying a child the services that they need are profound, but not felt by the professionals who make the decisions.
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daffin November 2, 2018 19:03
We’ve spent nearly 5 years chasing an ASD, ADHD or FASD assessment, wondering and then knowing that there was something else in the mix other than complex developmental trauma. Now Monkey Boy has a diagnosis of all 3. After 4 years of being told ‘he’s fine’ by school, having the local CAHMS agree he’s complex but doesn’t have ADHD etc etc. So, so demoralising. The thing is, it’s such a distraction from what we need to be doing, which is parenting our incredibly complex and troubled boy. Timely intervention would have prevented our son traumatising our daughter and our son’s mental state and behaviour deteriorating to the point that he needs the very specialist provision of a therapeutic community. The costs of denying a child the services that they need are profound, but not felt by the professionals who make the decisions.
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chocoholic November 2, 2018 19:20
Daffin - "The costs of denying a child the services that they need are profound, but not felt by the professionals who make the decisions." So so so true. So so so sad. It just breaks my heart (and if I'm not really careful it will break my marriage, my sanity and my other children too) So so so angry about this I have to try to block the reality of it out, and just focus on the day to day survival thing. In another life I was a journalist and believe me I could write a book... but it takes all my energy just to be a just-coping therapeutic parent to two very needy children, so angry books and articles won't be happening any time soon either. Hats off to the adoptive dad who found the energy to write this one, and speak for so many of us by proxy.
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safia November 2, 2018 20:04
Exactly Daffin - my AD has severe ADHD - it was bxxxxy obvious to me once I read about it - and to all the staff at her special school but not to the GP when she was a child - or to the local mental health services later on - someone who had been “trained to do an assessment” (and so knew best) but was obvious when we eventually got a private assesssment from an experienced psychiatrist in adult ADHD - how different her life might have been! Same goes for the community learning disability team - as for the girl in the article she doesn’t meet their criteria - and all the various local mental health professionals (apart from the odd one) always trying to discharge her! - the service she gets is from a charity and every year has to be fought for with all the uncertainty that causes. Her statement was not transferred to an EHC plan as she was out of college and no-one thought to check with us despite me having rung to check several months before so that had to be started from scratch again. PIP has to be re-assessed every few years despite the fact that these conditions (including an acquired brain injury) do not go away. Early intervention means not only cost effective health care but better outcomes in terms of ability to live independently and hopefully earn a living - all a saving to the state. And yes Chocohlic - the implications for our own mental health and finances don’t bear thinking about! I have asked for support for myself in the past - I would still be waiting for it but I’m now well supported by the current (voluntary) service - the recent report from PASW is full of the effects on the parents - even though not asking for anything for us. I also had a good job and could have been usefully contributing to society in other ways if I wasn’t needed as a full time carer (though I do work part time it’s only for my DH so not really an additional income or contribution to society!)
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