Re: DLA - mobility/severe mental impairment

[Guest guest]

In a message dated 03/11/2006 10:41:37 GMT Standard Time, GSWILKI@... writes:

.. Does any diagnosis of ASD count as severe mental impairment?

>>For the purposes of silly forms like this - I say YES - you have to get a professional of some sort to agree he has severe mental impairment

I can describe the problems of using buses (not as severe as those in Mandi's example), and the need to get him to swimming and other social activities, but don't know if this will be enough. Any thoughts?

>>No sense of danger is the biggie I think and as they get bigger the difficulties of restraiing them so they don;t srun out in the road at the same time you are trying to get the buggy sorted and the baby in the right place sort of thing.

Remeber when you are doing forms like this - think of the WORST day you ever had with him, take a deep breath and relive it on the form - one month of higher rate mobility buys another lab test, some supps etc

Good luck, keep appealing if they so no

Mandi x

[Guest guest]

I don't think what you have said about buses will be enough, I know a parent with a very severe child just been refused high rate.

We had 's paed say he was severely mentally impaired over and above his autism.

In our description we put how he will throw himself on the ground and refuse to move due to his severe mental impairment, so it wasn't a case of being difficult, more flippin impossible lol.

Also as the mainstream Dr's are so darned good at telling us parents how autism is a lifelong disability with no known cure, I got her to stick that in also, and we were awarded higher rate until he is 17, so no form filling for many a yr yet.

It has to be very strong with no wooly words like "difficult" if that's the case you must just say it and get Dr to do so also.

As Mandi said no sense of danger as in absolutely no sense of danger.

Vicky

[Guest guest]

Hi, we are just claiming mobility for our boy. You have to prove to

them obviously that your child has severe behavioural/ " mental "

problems in order to qualify, problems which prevent him from being

independently mobile.

Best to get the school on board to do a report and maybe an ed psych

as well as your own GP. Be prepared to go to an appeal.

>

> We have just been awarded high level for care, but lower level for

> mobility. This is the first time we claimed ( oh foolish me),

although

> Kieran is now 6yrs old. I plan to appeal for higher rate of

mobility,

> and have read previous posts, inc. the brill one from Mandi with

the

> long list of arguments. What I am struggling with is the " severe

> mental impairment " . I don't know if K will count as this. He

attends

> a special asd class within mainsteam. We don't have an IQ as he

does

> not cooperate with tests, but he is doing the same work as

mainstream

> kids, just the way they get him to do it is different. Does any

> diagnosis of ASD count as severe mental impairment? I can

describe the

> problems of using buses (not as severe as those in Mandi's

example),

> and the need to get him to swimming and other social activities,

but

> don't know if this will be enough. Any thoughts?

> Sue

>

[Guest guest]

> We have just been awarded high level for care, but lower level for

> mobility. This is the first time we claimed ( oh foolish me), although

> Kieran is now 6yrs old. I plan to appeal for higher rate of mobility,

> and have read previous posts, inc. the brill one from Mandi with the

> long list of arguments. What I am struggling with is the " severe

> mental impairment " . I don't know if K will count as this. He attends

> a special asd class within mainsteam. We don't have an IQ as he does

> not cooperate with tests, but he is doing the same work as mainstream

> kids, just the way they get him to do it is different. Does any

> diagnosis of ASD count as severe mental impairment? I can describe the

> problems of using buses (not as severe as those in Mandi's example),

> and the need to get him to swimming and other social activities, but

> don't know if this will be enough. Any thoughts?

> Sue

>

>

>

Hi Sue,

Try the Cerebra site, link below. I got turned down for mobility with my

ASD 3yr old son and appealed using some of the guidelines on the Cerebra

site. We now have higher rate care and mobility.

http://www.cerebra.org.uk/Parent+Support/DLA_guide.htm

Good luck

Dawn

[Guest guest]

the only reason I see a paed is to make sure my boys get their DLA, I mean what else are they there for? Certainly not to treat autism.

I am pretty well known in this neck of the woods for ranting and complaining, so when it came to paed writing to confirm s level of disability she certainly didn't mince her words.

I was offered yrs ago to stop coming for paed appointments but I decided to keep the 3 monthly appointments, you never know when you may need these people, most of the time we are just wasting our time, but we did get the extended DLA at higher rate, s paed is head of paediatrics and if she says he has a condition causing severe mental impairment for which there is no cure and will need lifelong 24/7 care then they are not going to argue.

For once this mainstream view of no cure can serve a purpose for our children.

I am extremely proactive when it comes to injustices and if the powers that be are not going to pay for biomedical then they are darned well going to pay as much as is possible for any other services whether we actually have the services or not.

Likewise if his Mickey Mouse school are not going to help my boy then they can face me at the end of every day, one way or another they WILL deal with us.

Sorry that turned into a rant, but my blood boils when I hear of our kids being refused what they are legally entitled to, and us already overstressed parents having to split the atom with some faceless jobsworth at the DWP or whoever it is deals with DLA.

Vicky

[Guest guest]

Can't walk due to severe mental impairment, ie often throws himself on the ground and refuses to walk, he refuses because of his condition, effectively it's the same.

Whenever I go out with in public he will throw himself on the ground, this is 100% of the time, not an exaggeration, he also strips his clothes off and will do this in public also, may not be in the criteria but certainly would count as trouble getting around and considerably more than another child the same age.

There may well be people who exaggerate, lets be honest there are people swinging the lead all over the benefits system, I know people who have normal kids dx with ADHD and are picking up benefits, we all get the flak from that behaviour.

Vicky

[Guest guest]

Apologies Sally, wasn't having a go at you, I have had my own head bitten off for saying there are people claiming stuff they shouldn't be, unfortunately there will always be people who do think it's a great fiddle and know their way around the system, can be pretty hard to take if your a parent desperate to get a dx and no one seeing the problem.

Vicky

[Guest guest]

Grrr. Rant warning.

I got our latest assessment through today. (We have to do them every

2 years, Vicky, how on earth did you manage to get 's to last

until he is 16?). Higher rate DLA, lower rate mobility, same as 2

years ago. But Joe is much bigger and stronger now. I phoned them up

to ask why we didn't get higher rate, I put severely autistic,

severely mentally impaired, no sense of danger, escapes from home,

tries to catch cars as they go past, etc, on the form, and their

reason for turning us down - we dont see a paediatrician!!!! What

has that got to do with anything? How would a peadiatrician, who

might see Joe once a year, indoors, know what Joe is like on the

roads?

I now have to take Joe to see our GP, who hasn't seen him since he

was 4 (no point, no help, Joe is nearly 8 now by the way) to ask him

to write a letter about Joes lack of road safety, though he will

have no idea other than what I tell him as well, and to refer us to

a paediatrician (we haven't seen one since Joe was 5, our old one

left and they never called us back, I haven't done anything about it

as I find it a pretty depressing and pointless exercise) so that

they can write letters based on what I tell them about Joe, even

though I have already told the DLA peeps this!!!

Oooh I am so angry!

[Guest guest]

We got medium rate at 12 with no probs or supporting evidence except a

statement about 2 foot thick. That was because she " needs support on

unfamiliar roads " (or something like that). I appealed (she needs

support on all roads) and they said that the criteria for top rate was

basically " can't walk " or similar ie one leg. I know people who have the

high rate basically through lying and exagerating the difficulties on

buses. With the high rate you get a free or virtually free car so it is

worth a lot more than the rest. Seems very inconsistent and illogical.

There must be lots of people who fall into the gap between " needs

guidance on unfamiliar roads " and " one leg "

Sally

Charman wrote:

>

> Grrr. Rant warning.

> I got our latest assessment through today. (We have to do them every

> 2 years, Vicky, how on earth did you manage to get 's to last

> until he is 16?). Higher rate DLA, lower rate mobility, same as 2

> years ago. But Joe is much bigger and stronger now. I phoned them up

> to ask why we didn't get higher rate, I put severely autistic,

> severely mentally impaired, no sense of danger, escapes from home,

> tries to catch cars as they go past, etc, on the form, and their

> reason for turning us down - we dont see a paediatrician! !!! What

> has that got to do with anything? How would a peadiatrician, who

> might see Joe once a year, indoors, know what Joe is like on the

> roads?

> I now have to take Joe to see our GP, who hasn't seen him since he

> was 4 (no point, no help, Joe is nearly 8 now by the way) to ask him

> to write a letter about Joes lack of road safety, though he will

> have no idea other than what I tell him as well, and to refer us to

> a paediatrician (we haven't seen one since Joe was 5, our old one

> left and they never called us back, I haven't done anything about it

> as I find it a pretty depressing and pointless exercise) so that

> they can write letters based on what I tell them about Joe, even

> though I have already told the DLA peeps this!!!

> Oooh I am so angry!

>

>

>

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>

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>

>

[Guest guest]

I'm sure it'll be worth it though, even if hte appointment itself

isn't. I can't believe your NHS hasn't chased you up to get a

paediatrician. And, sorry about this, but those paediatrician's need

the benefit of your knowledge. THink of the extra disability

payment, when you get it, as paymetn for the additional training

you're giving them!

>

> Grrr. Rant warning.

> I got our latest assessment through today. (We have to do them

every

> 2 years, Vicky, how on earth did you manage to get 's to last

> until he is 16?). Higher rate DLA, lower rate mobility, same as 2

> years ago. But Joe is much bigger and stronger now. I phoned them

up

> to ask why we didn't get higher rate, I put severely autistic,

> severely mentally impaired, no sense of danger, escapes from home,

> tries to catch cars as they go past, etc, on the form, and their

> reason for turning us down - we dont see a paediatrician!!!! What

> has that got to do with anything? How would a peadiatrician, who

> might see Joe once a year, indoors, know what Joe is like on the

> roads?

> I now have to take Joe to see our GP, who hasn't seen him since he

> was 4 (no point, no help, Joe is nearly 8 now by the way) to ask

him

> to write a letter about Joes lack of road safety, though he will

> have no idea other than what I tell him as well, and to refer us

to

> a paediatrician (we haven't seen one since Joe was 5, our old one

> left and they never called us back, I haven't done anything about

it

> as I find it a pretty depressing and pointless exercise) so that

> they can write letters based on what I tell them about Joe, even

> though I have already told the DLA peeps this!!!

> Oooh I am so angry!

>

>

[Guest guest]

I wasn't trying to suggest that there was always lying. I understand no

sense of danger and refusal to walk. Sorry, I suppose it just threw me

when this person I know said she got the high mobility rate when I know

her problems. Then she told me all about the desirability of the top

rate -- Motability etc -- and what a good wheeze it was -- so I guess I

started to see the DWP point of view. Then, as you say, we start having

to prove that we are not liars

Sally

MaddiganV@... wrote:

>

> Can't walk due to severe mental impairment, ie often throws

> himself on the ground and refuses to walk, he refuses because of his

> condition, effectively it's the same.

> Whenever I go out with in public he will throw himself on the

> ground, this is 100% of the time, not an exaggeration, he also strips

> his clothes off and will do this in public also, may not be in the

> criteria but certainly would count as trouble getting around and

> considerably more than another child the same age.

> There may well be people who exaggerate, lets be honest there are

> people swinging the lead all over the benefits system, I know people

> who have normal kids dx with ADHD and are picking up benefits, we all

> get the flak from that behaviour.

> Vicky

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.409 / Virus Database: 268.13.28/518 - Release Date: 04/11/2006

>

>

[Guest guest]

Thanks Vicky and Steph guess you are right, at least I can take some

TA Conference flyers with me!!

Feeling a bit calmer now

[Guest guest]

The DLA does cater for the serious behaviour issues, especially if

they present a danger to themselves or others. We got lower rate

mobility when I explained how he would refuse to walk sometimes so I

still have buggy for backup (he is a chunky 5 year old) how he can

hit out at strangers etc for no apparent reason, has no sense of

danger etc. We got the higher rate when the paediatrician did her

report - don't know what she wrote but it worked, awarded until age

17.

Have to say the car makes a huge difference to us, we were without

car for a while and found it incredibly difficult to manage and

big brother on public transport. Yes he is able to walk but he can't

go anywhere without a lot of planning and support due to sensory

overload. With the car we can handle day trips to Museums etc.

without it his stress levels and hence all our stress levels are

thro' the roof. This means not only he misses out but so does his

siblings and parents. So I don't think we should be guilty at

receiving it at all, the car has enhanced the whole family's quality

of life by enabling us to experience things we could not otherwise

enjoy.

Motability is really a charity which unites the purchasing power of

people with the higher rate DLA (biggest fleet of cars in the UK).

Basically the econmies of scale allow motability to command big

discounts seemingly making a profit on the depreciated vehicles to

fund other aspects of their work (wheel chairs etc). It is a

brilliantly thought out organisation.

JMHO FWIW

[Guest guest]

,

no matter how much a danger he is to himself when out if you can't

show night needs which would give the higher rate of care, you won't

get the higher rate mobility. (Apologies if you already know this.)

Margaret

>

> Grrr. Rant warning.

> I got our latest assessment through today. (We have to do them

every

> 2 years, Vicky, how on earth did you manage to get 's to last

> until he is 16?). Higher rate DLA, lower rate mobility, same as 2

> years ago. But Joe is much bigger and stronger now. I phoned them

up

> to ask why we didn't get higher rate, I put severely autistic,

> severely mentally impaired, no sense of danger, escapes from home,

> tries to catch cars as they go past, etc, on the form, and their

> reason for turning us down - we dont see a paediatrician!!!! What

> has that got to do with anything? How would a peadiatrician, who

> might see Joe once a year, indoors, know what Joe is like on the

> roads?

> I now have to take Joe to see our GP, who hasn't seen him since he

> was 4 (no point, no help, Joe is nearly 8 now by the way) to ask

him

> to write a letter about Joes lack of road safety, though he will

> have no idea other than what I tell him as well, and to refer us to

> a paediatrician (we haven't seen one since Joe was 5, our old one

> left and they never called us back, I haven't done anything about

it

> as I find it a pretty depressing and pointless exercise) so that

> they can write letters based on what I tell them about Joe, even

> though I have already told the DLA peeps this!!!

> Oooh I am so angry!

>

>

[Guest guest]

matter how much a danger he is to himself when out if you can't

> show night needs which would give the higher rate of care, you won't

> get the higher rate mobility. (Apologies if you already know this.)

Thanks Margaret, its ok, (depending on how you look at it) he is a

night waker so we already get the highest rate of care. Have booked to

see GP on Wednesday to ask for a referall to a paediatrician.

Hopefully this will have the same effect for us as it did you,

thanks everyone for your help