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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

I've been asked if i am 'Registered Disabled'

15 replies

MrsEffervescent · 30/08/2005 14:20

I get DLA...so does my son ....and my mum asked me if we are 'registered disabled'.....

A lable is a lable...and it doesn't bother me.... i have difficulties...and finally that is recognised...

But i wondered if there is a difference between 'simply' getting DLA and being 'Registered Disabled'.....

I think my mum thinks that if you are disabled you have to have a 'blue badge'...which ofcourse is not the case.... but none the less....it has got me pondering....

OP posts:

GeorgieVickyLou · 30/08/2005 14:23

Think if you are registered you can get more discounts on things - like the train. We where looking at getting DD redistered but can't remember the pros and cons of the top of my head. have a look at the goverment web site the info is on thier i'm sure.

Original poster

MrsEffervescent · 30/08/2005 14:30

yes...just looked at that site...saw the rail travel bit...i qualify as i get DLA middle for care...however i am still confused as to who i register with...or whether simlply showing my DLA award shows i am 'registered'on 'the system'...maybe you don't acually register????

OP posts:

potty1 · 30/08/2005 15:22

Didn't you used to have to 'register' with Social Services........not sure if that's still the case?

CountessDracula · 30/08/2005 15:23

You can't register disabled any more I don't think, used to be for employment purposes, not sure what you do now

KarenThirl · 30/08/2005 17:03

IIRC, last year after Lesley Ash had MRSA she was later described in the newspaper as 'registered disabled', so maybe it is still relevant. As to how you go about registering yourself, I haven't a clue.

sparklymieow · 30/08/2005 17:13

I had to register the kids with Social services, not sure if its the same for adults.

Davros · 30/08/2005 20:03

Soc Svs depts have a register of disabled children, don't know about adults. Its voluntry but useful.

Original poster

MrsEffervescent · 30/08/2005 21:51

now i'll tell you why i asked....

my aunt was asking my mum about tom's autism etc... she then told mum that he wasn't 'really disabled'...my mum then said that I said he is...and my aunt asked was he Registered....so it turned into a few 'strong words' as my mum struggles to 'get the autism' etc anyhow...and then when her siater started making her explain what she does to help me (which is ZILCH)...then mum tried seeming 'all knowledgable' by saying "well he gets money for being disabled" (DLA)

So mum told me all this and to be honest i was very pissed off as i feel that i have enough battles as it is without having to 'prove' etc to my family...

but it did start me wondering whether there was something such as a 'registered Disabled' card...so that when i do meet the 'doubters' i don't have to bother justifying.

Now...i know there are many on MN who will be horrified that 4 years on i am still feeling i have to justify etc.... i've been told many a time to ignore what people say etc.

but the way my boys asperger's affects them is not 'bad enough' according to all the 'bloody know it alls' i know...and added to which there is the fact that cos tom is medicated for his ADHD...noone sees how he is unmedicated...if they did they'e believe me i'm sure.

ah well....waffle finished!!!

OP posts:

nikkie · 30/08/2005 23:06

My local council is trying to pass it that that autism is not a physical disability ? therefore they will not have to provide care to as many, money etc.
One Mum works fro sure start and found rumors at work and has mobilised a group of parents against it so I doubt it will actually pass.

Original poster

MrsEffervescent · 30/08/2005 23:27

yes..have encountered that feeling at SS too...when asked to consider us for support we were told that 'we weren't severley disabled'

makes me so angry.

my friend has 4 kids- all autistic.... but she only gets respite for the one who is alao unable to sit/eat/talk/move/etc.... yet she admits that out of all her kids HE is the easiest to care for...that the other 3 make more demands on her etc...that her 'severly disabled son as social services have classe him'..is actually the only one she does not need respite froM!!!

(HOWEVER...I AM TOTALLY IN AWE OF HER...AS HE IS TOTALLY DEPENDANT ON HER...AND THAT'S WHY SHE DESERVES THE RESPITE...EVEN THOUGH SHE TAKES IT ALL IN HER STRIDE!)

OP posts:

misdee · 30/08/2005 23:37

well i am going to have fun getting respite fpr Peter, we can no longer get a sitting service as he will need a specialist person who is VAD trained to come in and sit with him, which means that each morning he will have to cvome with me for the school run, and each l;unchtime and afternoon as well. he will have to get out of the car, come rain or shine, and trek across with his machine, as he cannot be left alone at all. someone who has been trained has to be within sight/hearing distance at all times. talk about pressure.

Original poster

MrsEffervescent · 31/08/2005 00:00

misdee....i just wish 'THEY' would spend the day with you and your DH...follow you around doing all the things that you have to do...like you say DH having to go everywhere too as he cannot be on his own...

but ofcourse we know that when they 'Assess' they dedicate all of 1 hour to make their decision.... nothing like a true picture of what you have to do.

really hope you do end up with the right support.

r u still batting the DLA too???

Is there anything that has no hurdles???

OP posts:

Davros · 31/08/2005 07:09

One council can't decide what is classified as disability and what is not. They have to follow the Law although they may try very hard not to.

misdee · 31/08/2005 07:50

its a nightmare, because we live within 45mins of harefield hospital there is a chance he'll be able to come home (if we lived further than 60mins away, then he wouldnt be able to). we were being offered a couple of hours a week for sitting service as i wasnt happy with him being alone before, but now he cannot be left alone, whoever is with him needs to be VAD trained. so am thinking of getting as many family members as possible trained and a few friends as well, just so we arent permantly attached and i dont have to drag him everywhere. i suspect that usaual homecare wont be an option for us, and we were will be assigned a specialist VAD nurse, but untill nearer the time he comes home it wont be discussed, as there is a still a high chance he'll be a permament hospital patient anyway.

katymac · 31/08/2005 08:02

I used to work for the employemnt service, whilst working for tem I developed a mild disability. They explained that I could no longer be registered disabled as that had been phased out due to the new DDA.

However if I considered that I had a long term condition which significantly affected my day to day life I could consider myself disabled and would therefore be able to claim the additional resources that the ES provide for disabled workers.

But I felt then (& still now to some extent) that the whole thing is warped, and one persons disability is anothers little problem.

So not much help there then

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