lisa Report post Posted December 6, 2003 Did anyone see, I think it was the news, the other morning where they were talking about unclaimed benefits and there was a boy with Aspergers and his mum and she was claiming an allowance for looking after him. They were saying that people weren't aware that they could claim for conditions like this. Is anyone else claiming benefits for their children with Aspergers? Lisa Quote Share this post Link to post Share on other sites
Elanor Report post Posted December 7, 2003 Hi Lisa Yes, there are benefits out there - my son receives disability living allowance. This is awarded in two parts - care component and mobility component. There are various rates of allowance, my son receives middle rate for care and lower for mobility - in total �53 per week. My son's Apserger's is described as 'mild' (!!!) - so a more severely affected child will qualify for more. Additionally, I receive Carer's allowance (formerly Invalid Care Allowance) - for me, �42 per week. There are restrictions on the hours you can work if you receive this benefit. I don't know about the interaction of this and other state benefits (eg Income support). I didn't think that I would qualify for any benefits - but took a friend's advice and made an application. I understand that its common for applications to be rejected, and then be successful on appeal. Fortunately, this didn't happen to me - they agreed my applications without any further questions. I'd advise you to do your homework (I think there's some very good advice on the NAS website) and when you make an application do it very thoroughly. My application took a solid day to write. You should fill in the forms as fully as possible, I also added a 3 page letter describing my son's behaviour, plus letters from doctors confirming his diagnosis. Its important that you don't try to be brave about how hard it is to cope - you should describe your child's bad days, not his good ones. You'll find leaflets and info on the Department for Work and Pensions website - www.dwp.gov.uk. Good luck Quote Share this post Link to post Share on other sites
Elefan Report post Posted December 7, 2003 Are these benefits 'means tested'? Does it matter what you have in savings, for example? Thanks, Elefan Quote Share this post Link to post Share on other sites
Jericho Report post Posted December 7, 2003 Your earnings and savings are irrelevant when applying for DLA. Not sure about the others though. Quote Share this post Link to post Share on other sites
Elefan Report post Posted December 7, 2003 Cheers Jericho. Trouble is,...with my little girls diagnosis being 'ASD' but not pigeon holed into any one condition on the spectrum it may make us illegible. She misses the criteria for Aspie because she does not have an obsessional hobby/interest. Elefan Quote Share this post Link to post Share on other sites
nellie Report post Posted December 7, 2003 Elefan As you are local to Berkshire may I suggest you contact Berkshire Autistic Society re. benefits. From what I have read about your daughter I would have thought you would be eligible for benefits. Can I also suggest the following website: www.cafamily.org.uk/benefits. I have recently found out that if you are on Income Support (which is means tested) you can claim a premium if you have a disabled child. Hope this helps. Nellie Quote Share this post Link to post Share on other sites
Jericho Report post Posted December 7, 2003 I think you can still apply without an exact diagnosis. You can ask your Paediatrician, GP etc to fill in the medical 'back-up'. The criteria is generally to do with how much help your child needs with things like dressing, toileting, crossing roads, travel (running off or even needing the same route) etc. The other big thing is how much they sleep at night - or not!! Payments are backdated to when you ask for the form so it's worth a try. Quote Share this post Link to post Share on other sites
Elefan Report post Posted December 7, 2003 Thanks all! Something I may look into in the new year then, when things are a little less frantic!! BAS did send me the benefits details and I have kept them....somewhere!! Elefan Quote Share this post Link to post Share on other sites
Lisajb Report post Posted December 7, 2003 Hi all We didnt have a confirmed dx for Chris when we applied for (and got) DLA - I put something like "suspected Asperger syndrome/ASD" You give the name of doctors/consultants within the body of the form so they will hopefully back up what you say. Its not means tested and no-one comes round to check. The best advice I was given about filling in the forms - and I'll be perfectly honest, they are a nightmare - was "think of the worst day you ever had with your child for each criteria and write about that. The forms are very negative - use language that emphasises just how shocking/distressing/problematical/troubling/worrying the behaviour was to witness, and how difficult it is to find a solution. Don't hold back - it sometimes seems like a lottery whether you are awarded DLA or not, and dependent on who reads your form at the other end - make them sit up and think! Lisa Quote Share this post Link to post Share on other sites
viper Report post Posted December 8, 2003 Hi, I was getting bennifits for Jodie For 2 years, then we had to be reassesed (every 2 years) and they have refused all benifits as Jodie's school was asked about her and they said she has "age appropriate behaviour". We have appealed pointing out that someone with aspergers does not get better, it is not like chicken pox that clears up. We have to wait 11 weeks for the result. And those forms are a nightmare to fill in. You get the same one every 2 years which is stupid as nothing changes, we had an awful job trying to reword what we wrote last time. Quote Share this post Link to post Share on other sites
fairies72 Report post Posted December 9, 2003 Hi Wez, I can totally understand what your saying . I havent had to reclaim for my children yet,but asking the school is ridiculous (and never a full account ). My son behaves quite badly at school at the moment , but is having some good days at home and my daughter vice versa.Their problems can change from day to day all the time.So it is the parents that really should be asked. Lisa Quote Share this post Link to post Share on other sites
ksasnic Report post Posted February 24, 2004 My son hasn't been diagnosed with aspergers yet but is on the waiting list.... and what a long list that is. He gets the middle rate DLA, I now have a job so I lost my ICA and also my housing benefit, But gain the new working tax and child tax which includes the fact that he gets DLA so I get a little extra. Most people I know forgot to mention they were in receipt of DLA when filling in their housing benefit form. You must mention it as they then use a different set of calculations in working it out. Obviously if you are on Income support then housing benefit is usually straight forward but if you work part time well worth mentioning. As to DLA form I am dreading the renewal I did remember to keep a copy of what I put on the last one just for reference, but still it puts fear into me as without it our life will be worse off with us having to reassess some of his clubs. His school have only just started to accept that he is different, it was a big fight but yet they still look down on me as an interferring mother who is imagining things.. All very well but they don't see the fallout after a day at school especially during the first 2 weeks back at school after the holidays. So what they would say on the forms really are scaring me. We do have good support though from the clinical psychologist who has put in for a statement for him, still waiting for the result. EP, OT and ST. He came back today from school with a bright red mark above his eye where he told me all matter of factly that a friend had kicked him in the head but it was all right it didn't hurt. This makes me feel like crying as this seems to happen on a regular basis and when I mention it to the school they say oh I never noticed or as they have said before it was a case of accidental bullying ??????? work that one out !! How could they not notice a flaming red mark above his eye ? I just hope that when it comes to the form filling time they write what is really going on but I guess it will just be a cover up as they seem more concerned with their 100% ofsted report (how can a school get a full 100% anyway?) than with the fact that my child has problems. Anyway off to check on him. Quote Share this post Link to post Share on other sites
bluejean-genie Report post Posted March 15, 2004 Hi everyone, My story is similar to wez's . We did have DLA for our son but when it was time for renewal the DLA contacted my son's school for information not the specialist as we requested. Our son is dx'd as AS/TS/ADD but the school said he was no different to the other children and he had no special needs, so we were turned down. We were told by the Specialist that this usually happens at age 11yrs. Quote Share this post Link to post Share on other sites
david2 Report post Posted April 12, 2004 Hi There, I suffer from Aspergers syndrome and find it extremely difficult to be organised and I am very forgetfull. For a living I make dance music and sell it via a record label, however there is no work until late summer, the record label did give me a sub but i have spent all the money So i've decided to claim job seekers allowance and housing benefit to pay my rent, however because i keep forgetting to go to sign on they have now stopped my benefits. Is there any other benefit you can get where you dont have to sign on every 2 weeks? I also do not want to find another job, the benefits are a temporary requirement until i go back into music. I know I should be asking social security this but I find it impossible to communicate with them. Regards Dave Quote Share this post Link to post Share on other sites
Jericho Report post Posted April 12, 2004 David, I know of at least one adult who receives Disability Living Allowance and Incapacity Benefit because of the difficulties they have with their Aspergers. DLA isn't affected by how much you have in savings etc. I don't know much about IB though. It could be worth a try. Jericho Quote Share this post Link to post Share on other sites
nellie Report post Posted April 12, 2004 Hi Dave, Welcome to the site, You will find a lot of information on the resources section of this site. I know there are some sites with information for people with learning difficulties. I know people with AS don't always come under this category. You could try these two sites. http://www.learningdisabilities.org.uk/index.cfm http://www.radar.org.uk/RANE/Templates/fro...p?lHeaderID=227 You could try the NAS website or telephone their helpline. Good luck Nellie. Quote Share this post Link to post Share on other sites
david2 Report post Posted April 12, 2004 Thanks for the reply, is there any specific contacts, departments or numbers to phone as I haven't had any luck so far. Quote Share this post Link to post Share on other sites
david2 Report post Posted April 12, 2004 Just saw your post nellie, thanks Quote Share this post Link to post Share on other sites
Jericho Report post Posted April 12, 2004 Nellie is the forum's 'Wise Oracle'. If there's information out there then Nellie will find it. GO NELLIE! :) Quote Share this post Link to post Share on other sites
david2 Report post Posted April 12, 2004 there is a lot of info on those sites looks a bit daunting, i will attempt to cypher through it but if anybody does have anymore info please post. Quote Share this post Link to post Share on other sites
nellie Report post Posted April 12, 2004 Thanks a bunch, no pressure then!! Dave, The Disability Alliance may be worth trying. their website is at http://www.disabilityalliance.org Their Rights Advice Line Telephone Service is available to members of the public or for people giving advice to others. If you have a disability and are claiming or considering claiming benefits: Telephone 020 7247 8763 Sessions run between 2pm and 4pm on Mondays and Wednesdays Or you could try your local Citizen's Advice Bureau good luck Nellie. Quote Share this post Link to post Share on other sites
nellie Report post Posted April 12, 2004 Fellow members, Does anyone know of any other agencies that would help Dave with his benefits? Nellie. Quote Share this post Link to post Share on other sites
Helen Report post Posted April 12, 2004 Fellow members, Does anyone know of any other agencies that would help Dave with his benefits? Nellie. Hi david2, welcome I found the link below in the resources section, it may be of some help: http://www.cafamily.org.uk/assess.html *Disabled Person's Advice Centre. For details of the nearest one to you, call our freephone Helpline on 0808 808 3555 Monday to Friday 10am-4pm Textphone 0808 808 3556 e-mail *. If this body is unable to help you, perhaps it will direct you to some other independent body. On the other hand there is always your local DSS office. I'm not being nosey (so please don't reply), but do you have a social worker to help you? My cousin is a social worker and one of her 'busy areas' is aiding people by filling in benefit forms for them. Good luck, Helen Quote Share this post Link to post Share on other sites
pookie170 Report post Posted April 12, 2004 Hi all! Dave, I think an advocacy service might be of use to you. I don't know if you get help from social work, but they, too could be of use. I know that in exceptional circumstances, the DSS can tweak the signing on process, but as it's unique to every case, I suggest you talk to them regarding your problem. This is where an advocacy service would be very useful! Also, don't forget citizen's advice, they can inform you of your rights and/or put you in touch with a service that will help. If you type advocacy into your computers' search engine thingy (not very technical, sorry if I get the blurb wrong! )you'll be able to get the contact details of one in your area. Hope this is of use to you, and good luck! You can't be expected to live on fresh air, and you're not the only person with this problem either! All the best, Esther x Quote Share this post Link to post Share on other sites
lynyona Report post Posted April 14, 2004 My son gets dla and he as always got it since he was statemented as special needs and has learning disabilities, he is 17 now and gets income support and sickness benefit in his own right, we used to just have to get a sick note from the doctors when they asked for one, but we dont even have to do that now, has for his finances i have a declaration from social security putting me in charge of his finances as he is in capable of doing this himself.I get carers allowance for him as well but i think there is an earnings limit on this of �77 a week now i think its is. lynn Quote Share this post Link to post Share on other sites
nellie Report post Posted April 14, 2004 Dave When looking for an advocate it would be helpful to find someone with experience of Asperger syndrome to help you with benefits. A local autistic society, or the NAS may have an advocate available local to you. Esther is right, you can't be expected to live on fresh air. If you have not received any disability benefit before then you will probably need advice. Good luck Nellie. Quote Share this post Link to post Share on other sites
Lisajb Report post Posted June 1, 2004 Hi all, My son was awarded DLA a couple of years ago, until his 16th birthday which is next February. Can anyone enlighten me on what happens then? Does he have to reapply as an adult, or do I have to reapply on his behalf? I don't think he'd be able, clever as he is, to cope with the forms - most "grown ups" I know struggle with them! If anyone has any input, I'd be grateful Thanks Lisa Quote Share this post Link to post Share on other sites
nellie Report post Posted June 1, 2004 Lisa DLA for children is up to the age 16. There is also DLA for people aged 16 and over. People over 16 may also be able to claim other benefits such as Income Support or Incapacity Benefit. I believe he would have to apply in his own right, I used to apply in my sons name, he wasn't capable of applying himself. Benefits Enquiry Line: 0800 88 22 00 Department of Works and Pensions: http://www.dfwp.gov.uk/ Nellie. Quote Share this post Link to post Share on other sites
bid Report post Posted June 1, 2004 Lisa, I'm glad you raised this point because I've been worrying over the same thing! My son will be 16 next year. I think you must be able to fill it in on their behalf, because I know places like the CAB help people generally with benefit forms, etc. Bid Quote Share this post Link to post Share on other sites
nellie Report post Posted June 1, 2004 Bid, Lisa, I have heard of someone losing their DLA when they reapplied at 16 (I can't remember if it was on this site or not). It might be a good idea to get someone to help with the form filling. CAB or your Local Autistic Society may be able to help. Nellie. Quote Share this post Link to post Share on other sites
lynyona Report post Posted June 7, 2004 Hi my son was 18 last week and his dla ran out in may they just sent me the forms and i filled them in as usual and he was awarded it again... But now it caused a dilemma, when the letter of the award came back i just looked at it quick then filed it,then i needed it for something a couple of weeks later and i realised they had dropped his rate, but of course i had missed the month appeal date(says you cannot appeal late) so didnt think anymore of it but this morning i got a letter from ica to tell me that because his dla as dropped a rate i am no longer eligible for carers allowance for him.doh should i still appeal against it anyway or put it down to experience. lynn Quote Share this post Link to post Share on other sites
Lisajb Report post Posted June 7, 2004 (edited) I'm tempted to say go ahead what have you got to lose BUT..... knowing the DLA people you might lose the lot! If it were me I'd be a bit miffed Lisa PS: Nellie, Lynona, did you do the form filling and then let your son sign the forms, or did you do the lot? Edited June 7, 2004 by Lisajb Quote Share this post Link to post Share on other sites
lynyona Report post Posted June 8, 2004 I always do the lot as he doesnt write to well an i am his proxy dealing with matters on his behalf.lynn Quote Share this post Link to post Share on other sites
nellie Report post Posted June 8, 2004 Lisa Like Lynn I did the lot. I was made appointee for my son, giving me powers to act on his behalf and handle all his financial affairs. This was handed over to his care placement when he left home. Nellie. Quote Share this post Link to post Share on other sites
bid Report post Posted June 8, 2004 Nellie and Lynn, How did you go about becoming your sons' proxy/appointee? Bid Quote Share this post Link to post Share on other sites
lynyona Report post Posted June 8, 2004 I did mine through social security,making me responsible for his benefits etc you just have tofill in a form and then they send you a document thing making you their representative when they are happy that the child could not manage their own affairs. lynn Quote Share this post Link to post Share on other sites
nellie Report post Posted June 8, 2004 Bid To be honest I can't remember what happened when my son became an adult, there is no way he could have handled his own affairs. I think I must have filled in a form. When he went into residential care I had to write a letter saying I was relinquishing my position as his appointee. His care placement took over responsibility. I have added links to DLA for under 16 and over 16 on the Jargon Buster. Nellie. Quote Share this post Link to post Share on other sites
kirstie Report post Posted June 9, 2004 Hi all, i'm just adding to this to say that i'm fuming, I already recieve the DLA for care but applied 3 months ago with the help of The Action Group for the mobility component.I phoned them yesterday only to be told my application never arrived. I'm so cheesed off, does this happen alot? I will now have to fill out the form again and wait another 3 months!! NOT happy! Quote Share this post Link to post Share on other sites
lynyona Report post Posted June 9, 2004 this has never happened to me but it always takes them long enough at the best of times so youve now got to go through the gruelling form filling and the wait all over again,but will it be back dated from when you first applied or from when they recieve this new form the later i suppose we are talking dla here. lynn Quote Share this post Link to post Share on other sites
Helen Report post Posted June 9, 2004 I phoned them yesterday only to be told my application never arrived. Hi Kirstie Use Special Delivery or Recorded Delivery next time, for a signed acknowledgement that your correspondence has arrived safely. Helen Quote Share this post Link to post Share on other sites
