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going for a diagnosis (also posted in Education; special needs)

(6 Posts)
cricketballs Thu 01-Nov-12 10:58:25

just posting for a bit of hand holding!

DS background - he had a number of physical medical issues until he was around 4 when things started to just go better, i.e. failure to thrive, heart murmur, 'weird' blood results etc. in a nutshell he had a number of issues that raised questions about different syndromes, but he never fitted anything in particular and as his medical health had vastly improved we agreed that he no longer needed to be in the care of the several medical specialists (including a geneticist from a major city).

Luckily, as I am in education I knew that I needed to stamp my feet very early on in order that his learning needs were met and he has been in receipt of a full statement since he was 5 and has attended a special school since. He has learning difficulties, signs of ASD, signs of ADHD to name a few and we have been happy that his needs were being met (his school is fantastic) and that there were no need to be concerned that his statement wouldn't continue.

I have though recently become aware of all the changes occurring in terms of support/funding etc (he currently receives DLA) and am getting concerned that he has no formal diagnosis anywhere on his medical records of his needs and therefore would be classed as a 'vulnerable adult' and at risk of not gaining the full support he needs when he leaves eduction (he is currently 13, therefore would be year 9 in mainstream).

I am therefore going to go through the mill of doctors, specialists again - just returned from the GPs who have referred him to the Paediatric team

Just slightly worried if I am doing the right thing; we have just got on with things, just thinking that this is 'littlecricket' and despite the initial desire for a label we have spent the last 10 years not being bothered and just going on the day-to-day needs but am I going to open a can of worms by demanding a label on his records?

stillsmarting Thu 01-Nov-12 14:52:16

I am not sure whther he needs a diagnosis to access help. The DLA is meant to be on the basis of need, and if he has been in SS I have been told children will automatically go onto the EHC Plan (if it ever becomes law).
Do you mean he would not be classed as a vulnerable adult?
Hope someone else who has more knowledge will come along soon.

cricketballs Thu 01-Nov-12 15:20:00

The worry we have though is how services are being cut, changes made to DLA etc if he doesn't have a 'label' then the authorities have a get out clause.
Although, as I have already stated it hasn't been a factor yet, but in the future?

coff33pot Thu 01-Nov-12 16:39:07

You have done brilliant in having so much on place for your ds smile

I am dubious by nature when it comes to cuts etc so I don't see that it will do any harm to go for full assessment so that you can then help and arrange his future needs as an adult.

auntevil Thu 01-Nov-12 18:53:21

cricket - the only info that I have is anecdotal from my mother, who is helping a man in his 40s negotiate benefits at the moment.
It was always known that he was on the spectrum, but his mother took charge of all his life.
Now she is worried due to her failing health and asked for support.
Initially he was able to claim DLA, but then this was withdrawn and he was called for interview. During this time, his social worker was setting up appointments to get a medical dx. He 'had' his interview, after which he was sent a letter saying that unfortunately they were not able to get enough information to make a decision, he was to be called back for another interview. They asked that this time a 'suitable' adult was with him to help with the questions.
You really couldn't make this up. FFS - if he could not answer the questions how in their tiny minds could he be fit for work?
Long story short - he now has a dx and the further interview cancelled.
So, imo, getting a dx could be a useful piece of paper to thrust in the face of bureaucrats. A dx does not need to be shared with anyone that you do not want it shared with.
You might also find it easier to get as a child than an adult.
Brilliant for you what you have managed to do so far smile

cricketballs Thu 01-Nov-12 19:46:54

Thanks for that info evil; its just the scenario I'm hoping to avoid for him in the future (especially when we're not around) but dh is worried that he will just be known by his 'label' rather tha 'littlecricket' as we have managed this long without a dx

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