Caring for my Son

[sandra haynes]

Hi everyone, i'm a fulltime carer for my Autistic/Epileptic son, he also has severe special needs and is coming up to his 20th birthday! We've just gone through the 'transitions' period of him leaving special school & going into Adult Services, its been very up & down but its turned out ok in the end. I was wondering if anyone on here has been through a ATOS medical? if so, any advice? I've completed & returned my sons form to them & now await a reply - i'm surprised he might need a medical as his DLA is the highest award for life. Any advice be appreciated! Thanks!

[coffee]

hi hope you and your son ok today
Sorry I have not been to ATOSMEDICAL but I understand it to be tests to identify why you can/ can't work

To be found too unwell or incapacitated to work, individuals need to clock up 15 points during the 45-minute one-to-one assessment. If, for example, you can't pick up a £1 coin with either hand you get 15 points. Cannot learn or understand how to complete a simple task, such as setting an alarm clock? Also 15 points. Strangers have difficulty understanding your speech? six points.
Because of the way the questionnaire has been set, it is much harder to be classified as unfit for work under the new test than previously
If they don't score 15 points, they will be moved on to the regular jobseekers' allowance. This is around £25 a week less than incapacity benefit, and will leave people with their income cut by just over a quarter. This lower benefit also lacks the immediate, intensive support for getting back to work that ESA is designed to provide.The new benefit is based on the principle of looking at what people are able to do, rather than concentrating on what they cannot do eg can you walk? but don't mark down that every step you take is painful
Watch dog was talking about this a few weeks ago and said its downgrading, a complete waste of time a complete joke
coffeex

[india77]

Hello and welcome Sorry but i dont have any experience of medicial either

[ladybird]

Hi Sandra and welcome to the forum.

I have a 22 yr old daughter who is on DLA high rate for both, also a lifetime award. We were advised to apply for ESA when she was 18 which we duly did, she had to attend the medical. I'm afraid DLA doesn't come into it, they don't take that into account.

ATOS made us wait at the centre (a disused jobcentre) for a long time as they "hadn't realised" that a doctor would be needed, rather than a nurse, to do the examination.
Doctor seemed friendly, I had bought all medications including insulin along to show them. She asked numerous questions, tapped on the computer a lot and said that she didn't need my daughter to do the physical stuff, raising arms, getting up and down etc, it wasn't necessary. It could have had something to do with the fact that daughter had got quite het up at the wait and looked like she might explode..she was very upset.
Upshot was doc looked me straight in the eye, patted me on the arm and said "don't worry my dear, there will be nothing for you to worry about"

2 weeks later I got the letter that informed me that although daughter had been awarded ESA, they considered her able to do "work related activities" attending job centre interviews etc. I appealed this decision and got supporting letters from her tutor at college, her GP, her consultant at the hospital, her psychology team etc. I lost count of the phone calls I had to make.

I found out that I was entitled to ask for a copy of the doctors report from the medical, when I received that I discovered that "nice" doctor had awarded my daughter only 15 points, for continence issues. She stated that she had no physical mobility problems at all because she observed her "walking from one room to another on a carpeted surface". She lied that tests had been carried out, lied that my daughter was wearing glasses, that she had checked her heart, blood pressure and hearing and so on.

I sought help from the CAB who were useless I'm afraid and I took on the fight myself, after 6 months of hell, we won and daughter was placed in the support group.

I take no pleasure in recalling what happened and I promise I am not one of those who revels in imparting gloomy news but in this case, I really do suggest you are prepared for any problems. Depending on if you believe your son can work (and I'm guessing that's not the case) I would actually work on the assumption that he is going to be placed in the WRAG group (work activities) and get supportive letters from who you can ready, just in case. Be truthful but don't say that he just can't do things, they will want to know exactly WHY he can't do them. Get some support with an appeal, perhaps ring up the CUK adviceline (number on the main homepage) on what to do if that happens.

Above all, don't expect them to think as we do, they don't see common sense, they are ticking boxes and trying to meet government quotas, no matter how much they say they aren't. But don't give up, whatever you do..appeals are often successful but you need to stay determined because they will do their utmost to put you off.

Good luck

[Melly1]

Hi Sandra,

I care for S, he has autism, epilepsy, complex health needs and learning difficulties. He attends a specialist college that we have locally. We were advised by fairer charging that as he is still in fulltime education we could not apply for ESA, so we have not been through the process.

I think the advise from Ladybird is good. I would also ring the National Autistic society helpline to see what they recommend. Half of me thinks you should ring the assessors and say visiting the centre for assessment is too stressful for him as they do (or used to do homevisits,) but half of me thinks you're better having him off "his patch" as they need to see how much he struggles. (Horrid process.)

Melly1

http://www.autism.org.uk/living-with-au ... wance.aspx

Have just looked for info on the NAS website and read that if you get DLA and are in fulltime education you can claim ESA .... Umm. Maybe Fairer Charging advisors are corrupt?! I need to check this out further, when I have the energy.

[sandra haynes]

Thanks for all your advice, i'll let you know how it turns out! The 'powers that be' certainly don't make it easy for us carers & their familys, do they?

[Scally]

Anyone who is on a college course that does not lead to a recognised qualification can, and should, claim ESA, which is worth up to £130 per week. Claim now!

My son is 'only' on middle rate DLA and lower rate mobility, sent in the forms, and he was put on the "support group" without any medical. He has Downs Syndrome, but he is actually quite capable compared to some folk, I mean, he can ski on greens, blues, and even easy reds, he uses public transport on familiar routes independently to get to college, is becoming familiar with mobile telephony and computers, and requires almost no personal care, just a lot of low-level supervision. And he is a good communicator, and has some very simple literacy skills.

I'm concerned that this award might deny him the help he needs to, one day, move into some form of paid employment with support, but as he is only 18, its early days yet. I dislike the two categories, I feel they are another form of apartheid.

[ladybird]

I'm not keen either Scally but for us we have the opposite problem.

I am sure that caree will one day be able to do some kind of work but at this point in time, 3 years after the ESA battle, it is still an impossibility.
Your son gets it because he "appears" to be disabled, mine doesn't because she "appears" to be very able. System sure is screwed. Hope my comments aren't misinterpreted, no offence meant to anyone.

[Scally]

No offence, I just think the categories are stupid and discrimatory in the extreme. I mean, firstly, nobody in the real world is going to offer my child a proper job, nor yours, not this year, not next. Sure J might get some p/t supported work out of pity or kindness, but could he work a hard 8 hr shift working the production line, cutting fillets in a food processing factory, serving tables on a cafe or driving a tractor on a farm, safely, five days a week? No, and probably not for strictly physical capacity reasons, but simply because it takes great discipline and mental toughness to learn and carry out the same precise task, four times a minute, eight hours a day, and stay safe and focused. I've done it, he couldn't. And maybe part of why he couldnt do it because he is incapable of seeing the big picture, the long term view. He can't relate the pain and boredom of work to the long-term and distant rewards. Because he will hopefully never have to fight off a credit card company or rapacious landlord. He doesn't actually need to put up with sh*t to survive, unless the rest of us. Having a named and visible disability like Downs Syndrome carries, and rightly, some protection from that nasty side of survival. But what happens in the shades of gray - the invisible or variable conditions like MS or CFS - is always going to be very doubtful. Answers anyone?

[charles47]

Main issue here seems to be that the government has done what governments do best. In simple logic, they put the cart before the horse. Attitudes have to change before employment is a realistic option for many people - only a select few manage it, often through the "Old Boys Network" or similar. But of course, most people don't belong to that network.

So attitudes harden, and arbitrary rules that no one fits well are set up. And while everyone talks of "radical" change, no one looks at the system and says "actually, we'd be better to start from scratch...how can we achieve x....?"