Disabled Living Allowance.

[MABS]

Has anyone got any experience of claiming this? I'm having a nightmare with it all. I have a toddler with cerebral palsy and so should be eligible. Look forward to hearing.....

mrs forgtful- if you qualify for higher rate dla (and I think middle as well- but not sure) you can also get invalid carers allowance. It's an extra 40 ish pounds a weeks and you can earn up to 72 pounds a week on top.

Jimjams, did you see the programme on bbc4 about living with autism? I watched it knowing about your situation, it was very interesting.

lou was that the autism puzzle? I have it on video but haven't watched it yet- my friend did and spent the next few days depressed. I haven't realy been in the right mood to cope with watching autistic adults yet (I prefer not to think more than 6 months ahead- lol).

Bit of a win this morning though- had a letter from the LEA saying how could I possibly imagine they may just cut my son's hours of support blah blah blah- so I may have prevented that- we'll see. Round one to me although I'm not sure I can win the war :-(

Yes it was Jimjams. It wasn't only about adults though. Basically they were showing the children of the 60's alongside those children diagnosed today, and interviewing the parents. There were interesting comments from the parents of younger children about the mmr too.

Well done so far on your LEA result though, sounds like you might just win the war after all!

Just to add to qualify for ica the disabled person needs to be in receipt of both care and mobilty component of the disability living allowance.And also now children from 3 years old(used to be 5 yrs old) can be entitled to both care and mobilty parts of dla.Im pretty sure the disabled person needs the high rate of the care component, but can still qualify if their only entitled to middle rate dla.

ariel- we get ica and only get care (no mobility) for my 3 year old. I can't remember whether you need higher or middle dla to get ica though.

lou- apparently they interviewed paul shattock at from the autism research unit about mmr- but then decided it was possibly a bit too controversial to include-lol I think they bstuck to the nas party line (which is imo remarkaby wet when it comes to the mmr)

We get high rate care and mobilty, also get ica. My Dad is disabled he gets high rate mobilty and middle rate care , my mum also has just been given ica, oops just read my message got it the wrong way round, i know its one of them that you need to have the high rate to be entitled to ica.I have mentioned it before but the family fund trust can also help familys of disabled children with various things from financial help towards house hold items to holidays.

I filled in the dreaded form about 3 weeks ago now for my ds (7 months old with PMG causing complex epilepsy) and am waiting for the reply. I filled in the form with someone from a local carers support association who was great. All the physios, nurses and other professionals I've spoken to about it stressed that we had to write down the worst case scenario in every category and as someone else here mentioned spell out every little extra thing you have to do for your child in detail. One of them advised "assume you are sending the form to an idiot". As if life wasn't hard enough at the moment!!!!!!!!!!!!!!! Good luck, take care.

I filled in the dreaded form about 3 weeks ago now for my ds (7 months old with PMG causing complex epilepsy) and am waiting for the reply. I filled in the form with someone from a local carers support association who was great. All the physios, nurses and other professionals I've spoken to about it stressed that we had to write down the worst case scenario in every category and as someone else here mentioned spell out every little extra thing you have to do for your child in detail. One of them advised "assume you are sending the form to an idiot". As if life wasn't hard enough at the moment!!!!!!!!!!!!!!! Good luck, take care.

You can get ICA if you are receiving middle or higher rate dla care component. You don't need to be receiving the mobility component.

Jimjams, I was very impressed by the attitude of one of the mums on the programme. She had 2 children diagnosed, and was very philosophical about it. She is a better woman than I methinks,don't think I will ever stop wanting to know why my son has cp, even though I know we will never find the answer. It's his birthday today (he's 2) and dh and I are finding it very hard to stop ourselves from bursting into tears (but that's another story) !

happy birthday to your ds lou!! I only worry about the reasons wrt to ds2 (so if it was caused by such and such then I could avoid increasing ds2's risk iyswim). I spend half my life bursting into tears!! Honestly! I never knew I could do so much sobbing! The sight of a three year old kicking a ball around with his dad is enough to finish me off every time- let alone birthdays. Have a good day and a big happy birthday from me.

Thanks jimjams!
Ikwym about decreasing risks. It doesn't apply to ds2 as I am not having any more, and he is my youngest (and how do you decrease a risk of cp anyway?), but with my oldest ,dd1 ,I was exactly the same. She was born with hydrocephalus and 2 heart conditions, as well as other anomalies, as a result of anti convulsants I had to take. I wasn't warned about the side effects, in fact I was told there were none (we quickly discovered this was a huge lie), so I came off my drugs whenever I was pg again. I figured that the risk of me having another child with valproate syndrome was greater than the risk of any fit I would have affecting him/her(I don't usually have grand mal attacks). I did come across a few doctors who didn't agree but when they realised it wasn't their child at risk they usually backed down. Most were understanding though.

Gosh- lou- I can't believe you weren't warned. Mind you I think a lot of drs are remarkably ignorant about side effects. A friend of mine has a daughter with epilepsy- she was given a new drug and immediately developed a rash. She asked drs several times if it could be linked and was told no this medication didn't have a rash as a side effect- it was a virus- until the reaction worsened- and became quite serious- when they finally agreed it could be a side effect and changed the medication. When my friend finally got hold of literature on the drug she discovered the most common side effect was a rash.

There was piece in the Sunday Times about a fertility clinic that is allowing (or wants to allow- can't remember if it's actually happening) gender selection for couples at risk of having a child with autism- they're allowing the couples to select female embryos- the assumption being that girls are lower risk. Made me very uncomfortable. Whilst I wouldn't choose to have another autistic child I wouldn't want to destroy an embryo just because they might be autistic (or even because they were come to that). And what would happen if couples had their girl implanted and then she turned out to be autistic? Stumbled into ethical qustions there- but the piece kind of horrified me.

It would make me uncomfortable to feel I had that power too, based on a maybe.It becomes very difficult to make a decision based on gender selection due to genetic or gender biased conditions I would think, I am just thankful I haven't been put in that position.

Not only did they not warn me jimjams ,they stated there was no syndrome or side effects associated with the drug I was taking. I very deliberately asked that point, having heard of other anti convulsants and their associated problems. We tried to take the health authority to court but was told that although she was born with problems associated with the anti convulsants , they thought her condition was not serious enough to take it further. And it was not as if the doc had any reason to be ignorant of the side effects, he was a professor of neurology and a paper had been published regarding the syndrome in a major medical journal only a short time before. If a professor of neurology is ignorant then heaven help us when we get seen by their juniors!

Since this happened to me the drug company now put warnings on the info sheet about the risks in pregnancy but here was none at the time. We are in fact trying for the second time to get a legal resolution but it doesn't look likely to be resolved any more than the first time around. The trouble is we are all just statistics and faceless names. My husband lost his career as a result of the medical problems dd had, having to take time off to help, and as he was self employed it's been a slow 10 years trying to get himself restablished again, and he still hasn't been able to properly. Our lives changed dramatically ,and we have really struggled financially since, but this isn't taken into account. It's how was she then and how is she now.

Rashes are very common symptoms of an anti convulsant allergic reaction, as well as vomiting and dizziness. I cannot take one common type even on the lowest dose because of that reason.

God lou that's appalling. I was talking to a friend yesterday who has another friend who's daughter ultimately died becuase of mistakes made during her birth. Her daughter's notes were "lost". Most of my dad's medical notes have been "lost" by the navy- he used to be a nuclear submariner. After having ds2 I was passing some time reading my notes. There was a whole page about how this and that risk had been discussed with me and I agreed to accept it blah blah blah- and the conversation was totally imaginary. I Know I can be a bit spaced when prgenant- but I'm not that bad. If there had been a complication I would have had no come back as according to the notes the risk had been explained (although it hadn't even been mentioned).

That's appalling too Jimjams, did you say anything about it?

No- that was a year ago when I was still meek and mild The problems with ds1 have changed me considerably- I would say something now- I'd probably write to everyone!

I understand that completely!

JimJams-Thanx! I'm now signed off work by doctor for 2 weeks and trying to get my head round all this dla form stuff- i feel ok about the care aspect- but feel unsure how to best explain his mobility needs- main probs are no idea of traffic speed- so will usually stand for ages if can see a car miles away-won't cross till car passed- then another will follow....at a 't' junction looks left and right but not behind- and 'oneway streets ' totally confuse him.also as far as saftey to others- if he is running down a path on bin day and someone is coming towards him-they get knocked on road-he's fine but they could be hurt (hasn't happed yet). Also we have a corner shop 2 doors away and i allow him to go ther-i watch the traffic as he goes and comes back-without him seeing me!- (to try and increase his independance etc...as i'm told to do- however if it were further away or round the corner -out of sight....then i would not let him go. also when he's on one of his 'double click here,right click there' computer monologues he is oblivious to anything around him so i am his eyes and it scares me as though i thought he was 'stranger safe' i know that if anyone stopped him and asked him to pop round and see their pc or to use their latest programme- he would go....so hence i cannot let him out alone....he is 9 yet not once have i allowed him away from my sight..... can anyone who has got the mobility elelment say whether any of this is 'bad' enough? and maybe direct me in how to word it effectively !Also due to his 'falling asleep' probs been told about melatonin...any stories from you guys? he's been succesfully taaking metyhlphen....ate (!) equasym...or ritalin if i want to be brave...but we hope if we sort the sleep out then the adhd probs may be less...and seeing as he only seems to need ritalin at school we will be able to stop that and make the school help him rather that make him blend in (don't get me wrong the ritalin works...and i'll supprt anyone going thru the 'shall we shan't we phase- we did- it worked- our son's still the same special person he always was and he askes for it when he feels his wires are crossing... )

hi mrsforgetful

plenty of AS kids get mobility- usually lower rate for AS. The dla sometimes try to wiggle out of it by saying the IQ has to be lower than 55- but this isn't true of the autistic spectrum (there has been a case on it- quote that at them and they usually back off). I don't have the details to hand but if you were refused on grounds of IQ then I culd certianly find the relevant piece of legislation. My son doesn't get mobility yet but he's only 3- so it's that much harder to claim. I will ensure that he receives it form 5 (assuming he doesn't suddenly improve dramatically). Oh yes road safetly is a nightmare. I always park on the same side of the road as the house/nursery/wherever we are visitng otherwise he just runs out in the road.

Jimjams - i may be wrong here ,but i thought the mobility claiming age had been lowered from 5 to 3 yrs old. At least I think that I was told when I claimed dla care component for my 2 yr old,they said they'd send me the mobility forms at 3 yrs I thought.....don't want to mislead anyone though

yeah me too thinking it has changed to 3 as were told exactly the same as Mabs. I have a 2.6 year old with cerebral palsy too....Good luck

I also think mobility element has been reduced to 3 from looking at the form recently. We've just put in our appeal for dla, so fingers now crossed.

yeah mobility has changed to 3 but only if you're receiving higher rate care (we are) and qualify for higher rate mobility. As the criteria is "needs signifcantly more help than a "normal" child of the same age" it can be difficult to qualify at 3 for autism (as most 3 year olds need to be watched near roads and may run off etc etc- it's not signifcantly more help). By 5 you would expect most children to have quite good road sense so then you can usually qualify for mobility with autism. I think standardly they award lower but usually on appeal will up it to higher.

Of course if a child had signifcant physical difficulties they should get mobility from 3.