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      Depression, Mental Health and Crisis Support   06/04/2017

      Depression, Mental Health and Crisis Support   Depression and other mental health difficulties are common amongst people on the autistic spectrum and their carers.   People who are affected by general mental health difficulties are encouraged to receive and share information, support and advice with other forum members, though it is important to point out that this exchange of information is generally based on personal experience and opinions, and is not a substitute for professional medical help.   There is a list of sources of mental health support here: <a href="http://www.asd-forum.org.uk/forum/index.php?showtopic=18801" target="_blank">Mental Health Resources link</a>   People may experience a more serious crisis with their mental health and need urgent medical assistance and advice. However well intentioned, this is not an area of support that the forum can or should be attempting to offer and we would urge members who are feeling at risk of self-harm or suicide to contact either their own GP/health centre, or if out of hours contact NHS Direct on 0845 4647 or to call emergency services 999.   We want to reassure members that they have our full support in offering and seeking advice and information on general mental health issues. Members asking for information in order to help a person in their care are seeking to empower both themselves and those they represent, and we would naturally welcome any such dialogue on the forum.   However, any posts which are deemed to contain inference of personal intent to self-harm and/or suicide will be removed from the forum and that person will be contacted via the pm system with advice on where to seek appropriate help.   In addition to the post being removed, if a forum member is deemed to indicate an immediate risk to themselves, and are unable to be contacted via the pm system, the moderating team will take steps to ensure that person's safety. This may involve breaking previous confidentiality agreements and/or contacting the emergency services on that person's behalf.   Sometimes posts referring to self-harm do not indicate an immediate risk, but they may contain material which others find inappropriate or distressing. This type of post will also be removed from the public forum at the moderator's/administrator's discretion, considering the forum user base as a whole.   If any member receives a PM indicating an immediate risk and is not in a position (or does not want) to intervene, they should forward the PM to the moderating team, who will deal with the disclosure in accordance with the above guidelines.   We trust all members will appreciate the reasoning behind these guidelines, and our intention to urge any member struggling with suicidal feelings to seek and receive approproiate support from trained and experienced professional resources.   The forum guidelines have been updated to reflect the above.   Regards,   The mod/admin team
liamsmum

DLA Continued,..

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liamsmum   

Hello everyone,

 

I'm new here, and have a 10 year old son (Liam) who was diagnosed with AS two years ago.

 

After lots of discussion and arguments with the local education authority, Liam finally got accepted into a special local school last year, after being expelled from two mainstream schools. It seems to suit him much better than mainstream.

 

However I applied for the Disability Allowance after getting the diagnosis - just to allow me to pay for some respite care, as the loacl authority have offered me nothing in this respect. I was initially refused this claim, and therefore went to an appeal where lots of completely un-informed people asked me lots of stupid and irrelevant questions. Unsurprisingly my application was again rejected.

 

It is not really the Allowance money that is now the issue that is bugging me, it is more the complete lack of understanding by these so-called experts who are basically not recognising the fact that I have a disabled son.

 

Has anyone else on here been down this route, and what are your experinces - I would love to hear about them, as I am very frustrated with the whole thing at present. Has anyone else claimed Disability Allownace for AS children ??

 

Thanks

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Kris   

Hi there and welcome to the forum,

 

Elefan remembered (she has a much better memory than me :) ) that we have had a topic on benefits already that may be of interest to you and I have posted the link to it below.

 

http://www.asd-forum.org.uk/forum/index.ph...c=95&hl=benefit

 

Its worth reading the whole thread but I have 'snipped' this bit out for you as its quite a concise initial answer to your query:-

 

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.

 

I hope this provides you some initial help and I'm sure others will answer your posting with additional information, help and assistance.

 

Best regards,

 

Kris

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We are still at the form-filling stage but others have claimed the allowance successfully. Whether you get the allowance or not seems to depend on pot luck!

 

There is a thread in 'parent to parent' on this forum entitled 'benefits' which gives a little more insight.

 

http://www.asd-forum.org.uk/forum/index.php?showtopic=95

 

Your local autistic society would be an excellent place to start.

 

Simon

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liamsmum   

Thanks very much everyone - that information is very interesting indeed !!

 

As has already been said, it looks like it is potluck whether you receive help or not.........which is quite disgraceful really.

 

All the authorities up here in Cleveland have been totally hopeless in this particular case, and are blatently incompetent when it comes to AS !!

 

Any further experiences or info would be great :-)

 

Thanks alot !!!

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viper   

Hi, My daughter Jodie was getting benefits for two years then we had to fill those darned forms in again and were refused. We apealled saying someone with ASD does not get better but we were still refused. Something is very wrong somewhere. :angry:

 

Wez

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Lisajb   

Hi there

 

Yes it is definitely a lottery.

 

My son is not severely autistic, yet we got DLA at the first time of asking, yet another mum that I know of, with two possibly three autistic children was awarded it, then when she had to reapply it was denied her. There is no justice in this world.

 

All I can advise is keep plugging away and hopefully you will get there in the end. Maybe the idea these people have is to wear you out with all this so you give up and they save the money

 

 

Lisa

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liamsmum   

Yes they definitely try and waear us down, that is certain !!

 

Every single issue I have addressed with my son has resulted in bad decisions, no help, people blaming other people, departments blaming other departments - even my MP has been no help whatsoever. This is the same with the education authority, social services, and the medical people involved.

 

The whole thing has been a complete battle from the start - when I would have thought authorities would be trying to help. I think they are all so ignorant of AS that they just don't know what to do, and therefore pass it onto someone else !!

 

Has anyone challenged the appeal ruling for Disability benefit - I have requested the reasons for the rejection, and they should be interesting to read !! I think there is then another procedure to appeal the decision. Anyone gone this route ??

 

Many thanks people !

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Hi,

I applied for DLA for my son when he was 9 yrs old (he was dx'd as ASD, TS (mild)ADD) and we were allowed it , but when he was nearly 11yrs we were refused it, because they would only ask the school for information and school denied there was any problems even though their answers to the Dr's questionaire was crucial in my son being dx'd as ASD. We were informed by our Paediatrician this is usually the case at this age.

He now attends Secondary school and they are talking about statementing him, due to his unpredictable behaviour and the fact he won't do very much work and no longer wants to write.

When i received the reply I asked for it to be looked at again and our specialists be contacted for information, but they would only ask the school again.

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vjmac   

Hi there,

 

I am currently challenging the appeal decision as what they awarded me verbally is different to what was documented. I have since made an appointment with the welfare rights people as they are able to argue the points of law and will try to ensure that your child gets the best deal.

 

I went to my daughters appeal without a representative and regret doing so. The fact that they have a lawyer present says it all! It appears to me that they will do everything they can to give as little financial aid as possible and if that means trivialising our childrens disabilities then so be it.

 

Don't give up! Good Luck!

 

Vicki

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liamsmum   

Hello Vicki,

 

Thanks for that reply, I 'm glad I'm not the only one who feels like that !!!

 

I actually had a representative at the appeal - she was connected to the social services and backed up everything I said to the panel about Liam, but they obviously still didn't want to understand the seriousness of it all. I think they just think he is a naughty little boy !!!! If only they knew !!

 

I would be interested in the welfare people you talk about - could you let me know what organisation this is, as I am really ready to try anyone who can actually understand and are willing to help me.

 

What I really can't understand is that surely if there is a case where just one AS case is awarded DLA, then surely this is a precedent for all other cases - as they are basically saying that AS is a disabilty. For instance, if your child is diabetic, then DLA would auutomatically be given - you wouldn't have to prove over and over that they definitely are diabetic. What is the difference with AS - it is still a disability ???

 

Totally frustrated with the authorities on this one, as they are obviously clueless as to the condition and the situations that it causes.

 

Thanks

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vjmac   

Hello again,

 

I have an appointment with the Welfare Rights people on Wednesday morning and will try to obtain as much info as I can for you.

I first applied for DLA in June 2003. Having spoken to the appeals office yesterday they informed me that if I do decide to appeal the appeal ( if that makes sense) then I will not even receive the money they already awarded. My mum and I discussed this last night and what she said is that I've done without the extra support for this long and that I should keep fighting until my girl receives what she's entitled to. So this is what I intend to do. The boxing gloves are on!!

I will let you know how I get on.

Take care.

Vicki

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Hello and Happy New year to everyone, been a while since I was in last.

 

My son too is Aspergers (11 now) I get DLA for him, the DLA forms are all very long and very daunting, for a start you ll Get DLA whether your child has DX or not, my son got it before his DX, if you have a child who needs more help than another child of the same age you should get it, 'our children' usually need constant supervision, help with personal care, encouragement to do every day things like, eat ,wash,dress settle into bed, also when filling out the first page i think it is, it asks you a series of Questions which you tick the boxes in,

(1) has problems with speech or language which affects commnicating with others................I ticked this, as my son has problems doing this becasue of his condition

(2)has a learning difficulty.......I ticked this as he s SEN

(3) has a mental health problem..I ticked this because Autism is i think a mental health problem

(4)has a life long illness.......well they don t grow out of autism

 

If you need help filling the forms in get someone who knows something about autism to help you, CAF are pretty good, I think Kris and Elefan have a link if not i ll give you one, hope my post has been of some use, Penny

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liamsmum   

I hope it goes well for you Vicki, please let us know how you get on !!!

 

Hello Penny - I'm glad you managed to get DLA for your son, at least someone has got it !!! When you say all AS children will get DLA as they are autistic, that is exactly what I thought. However you will discover if you read the whole of this thread that infact this is not the case. Far from it !!!!

 

I have now been rejected twice (even after an appeal) even though Liam has a formal diagnosis of AS, has an SEN Statement, and is in a Special School !!!!! What else id needed to prove he is AS and is basically disabled.

 

The "suits" at the appeal knew nothing about AS, didn't want to know or listen to me, and obviously didn't care. It is an absolutely disgaceful situation, and one I am appealing against again !!!

 

The more I read and research this condition, the more I realise the authorities are not interested in helping us :-(

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nellie   

I agree with Penny. It is the extra work involved compared to a child with no difficulties. I think we as parents of children with special needs get so used to looking after them, we don't realise just how difficult it is compared to having children who have no difficulties. We can't even compare it to looking after their siblings as we are looking after the child with special needs at the same time. A parent who has been immersed in looking after a child with special needs will not necessarily know what "normal" is.

 

On the other hand just because a child is diagnosed with an ASD does not automatically mean he will qualify for DLA.

 

The NAS have a fact sheet on claiming DLA which gives examples of the sort of difficulties Autistic children experience, it is at

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp...sp?d=108&a=3330

 

 

nellie

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liamsmum   

Thanks for all the advice people - it has been very interesting !!!

 

I am still awaiting the letter detailing why they turned me down for DLA, and I will post on here when I get it. I'm sure it will make us all laugh !!! I even rang them yesterday to ask where it was, as I only have 1 month to appeal - and guess what, no-one knew anything about my request or when it would be dealt with !!!! Typical !!

 

Thanks

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rhab2004   

Hi

I am new to this site but I am so pleased that I found it. I have twin sons who will be 24 in February. They were finally diagnosed with AS when they were 9 although I had been trying since they started school to get somebody to recognise that there was a probhlem.

Their schooldays were a nightmare, with each new day came a new set of problems. They are both very intelligent, the elder of the two is also very caring and affectionate, and I have to say seems least affected.

The younger twin is the one with all the problems and the one I am trying so hard to help emotionally, socially and financially.

The elder twin is the the Territorial Army and that has truely helped his development and he is able to socially interact, albeit not well, I do not worry about his welfare too much as he is able to live alone and has secured employment.

His brother has not been able to secure any sort of employment, and is unable to live alone. I reside in Spain with the youngest of my 4 children and between my elderly mother and I we have brought my son here to live as he was suicidal in the UK and although he was getting some assistance through a charitable orignisation, his application for DLA has been rejected twice. We are now in the middle of an appeal which I believe we will lose as he does not reside in the UK anymore.

If anyone has any advice for me as to what benefits we might be able to secure for him I would be very grateful. He is currently being supported by my mother and myself, but I know that when my mother is no longer here I will not be able to continue that financial support as I do not have sufficient income, which is why I need to make sure that he will have the financial assistance that he requires.

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nellie   

Welcome to the site. I am so sorry that things are so difficult, having been in your position I understand how your feel. I have a son of 25 diagnosed with ASD, doesn't fit asperger and probably falls within the high functioning bracket, I have a husband, 52, diagnosed with asperger. I also support parents with children and adults on the autistic spectrum.

 

There are a lot of people on this site with plenty of experience and expertise, they have the understanding that you probably have not been getting. There is a wealth of information on the resources site including disability benefit.

 

Are you involved with SS, if not then you should seriously consider involving them.

Unfortunately mental health problems in adults with Asp. who have not had their needs met in life is fairly common. Referral to an expert who has experience of ASD is crucial if they are to understand his mental health difficulties are tied into his Asp.

 

You could contact the National Autistic Help line. What authority are you involved with, you could personal message the information if you do not want to disclose it on the site?

 

I hope you find this site useful and the support it gives helpful.

 

Nellie x.

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bid   

Hi,

I have had DLA for my son since he was 6 - he is now 14.

I have had brilliant help over the years in filling in his reapplications from our local Special Needs Health Visitor (even though he is too old to come under her care anymore).

I would say that you have to describe in minute detail the worst-case scenarios every time. And don't forget the things you might take for granted, e.g. still having to clean your child's teeth,say, or still having to cut up some sorts of food for them,etc. All the time you need to state that what you have to do every day is far more than you would for a "normal" child of the same age.

Last of all, I would definately advise getting your child's paediatrician to comment and sign the form.

Hope this might help. Keep trying...I know how awful the whole thing is(we actually lost his DLA and my ICA at one point when he was 7 because his Social Worker at the time tried to help by claiming the highest care element for him!! We did finally get it back, at the highest rate, but what a nightmare as we really depended on that money!).

Bid

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>:D<<'> hi all,

thanks to the special needs lady at social service who mention that i could try for DLA and then the NHS doctor that came to see me to talk about harry,

I have know got the forms for DLA. :D

But what a form :rolleyes: well 2 forms ,first one was general=name ,age ect

the 2nd form is more about the child,walking out doors,about the childs developement ,help with toilet needs!!!

Form 1 is 15 pages long

Form 2 is 26 pages long :wacko:

If i can get them filled in this weekend and posted off i will try to post to see how long it take them to "deal with me".

I would like to say that reading the messages on this subject will help, when i fill in the forms .

Thankyou from vastsarah :D

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Gita   

vastsarah

 

My son is nearly 4 years old & was diagnosed in June 2003. I was advised straight away to apply for DLA, but because the form was so long & I didn't know quite what to say on the form, it wasn't until January this year that I finally applied.

I got a lot of help from a lady from Barnet Mencap (tel 020 8203 6688). Infact she even filled out the form for me. She knew exactly what to say, which is basically that you have to put down the littlest thing that your child may have problems with. If you dont live in Barnet, maybe there is a Mencap branch near you. Or you could try calling the above number & ask them what the nearest branch to you is.

 

Hope this helps

Gita

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Helen   

Hi vastsarah,

 

There's a list of nationwide MENCAP branches in the 'General Discussion' section, under the heading 'Charitable Organisations/Support Groups' - I don't know if this will be of any help to you.

 

Helen

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Thanks helen and gita B)

i hadnt thought about asking anyone to help fill in the form althought two heads are better than one!

And i will be thinking of the worse day possible which wont be that much of a problem(easter break) :tearful:

Plus a sugestion by helen to do registard post ,is a realy good ideal

thanks again for the help

from vastsarah >:D<<'>

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lisa   

We had a lady from MENCAP help us fill in the forms. I think you can sometimes be so used to our AS kid's behaviour that it seems the norm, so it helps to get someone elses input. We managed to get the higher rate care for our son, perhaps their decision was influenced by him setting fire to our living room and climbing out of the upstairs bedroom window!!! :wacko:

 

Lisa

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kirstie   
:huh: we were lucky to recieve the higher rate for personal care.but as he isn't yet 5 i was told that they can't make a decision on mobility aloowance untill then. WRONG!!! apparently they can award the higher rate when the children are 3. funnily enouhj they just don't tell you that. i had a lady from the Action group round a few days ago to go through things, playschemes, respite etc and she is going to do a check for me to ensure i'm getting the right monies.not only that she's going to write to DLA for me and suggest they start looking at awarding us the higher rate mobility.at least whatever the outcome the ball is rolling and we won't have to wait another 5 months when lew is 5, before they look at the claim.if they refuse the higher rate then she will represent us at an appeal hearing.lew has dreadful anxieties on buses, waiting in line, having a particular seat,etc etc, i'm sure you're well aware of the joys of public transport and AS. we've been thrown off many a bus.so, i know i'm rambling on a bit but i'd say definatley get help with the forms or at least the ins and outs of the system.I for one don't know how they work out who gets what but i do know their system is all wrong and very unfair.Its ridiculous that where one person will be awarded higher rate for their AS child and another family are refused the help.It needs to be sorted and regulated.what i will say to you though is keep a copy of your forms.good luck! kirstie

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CarolJ   

I have never had any help with the DLA forms.

 

I have always done them myself and having been turned down for motability for Scott twice I re-appealed and phoned them and said - if you dont think I need this for my son, come down to my house - I will give you a list - you can take my son to tescos on the bus and get our shopping- I guarantee you wont get as far as the garden gate before my son starts playing up and kicking you and trying to run away.

 

They answered "we dont work like that" - my answer "of course you dont - you dont have to live with autism - dont make judgments unless you know what you are talking about!"

 

Needless to say we got the award! :thumbs:

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ksasnic   

Just a thought,

Anyone filling in the dla forms do a copy this I would say could be a clincher if as it can happen they say they have lost your form and require you to fill in another then they could compare and if they don't match up you could fail.. They are a sneaky lot, I have had this happen in the past with other dss forms, a friend who worked there told me this is how they weedle out the fraudsters !!!

 

Eitherway a copy comes in handy when filling out the renewal form.... keep a copy of the renewal form for next time too..

 

On another note I have just paid �3.50 for a r.a.d.a.r key which is for the disabled toilets, still awaiting my key but when it comes it will ease a lot of problems as my boy hates toilets.. too noisy.

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kirstie   
B) carolj you go girl!!! well said.it is so true though.i'd love to see these penpushers sitting there making their decisions coping with the day to day things, like getting on a bus !! would i love to be a fly on the wall......!! kirstie. x

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hi all B) thanks for all the imformation but i have to amit that i havent yet sent the form off,.

I have filled in the statementing form that the school have sent me.Which i hope will be going thought smothly and quickly :pray:

But the form from DLA is huge.!

from vastsarah :thumbs:

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lynyona   

My son has been getting dla since he was about ten and i have never had any problems with it ,when it was up for renewal i just took the forms into school and they filled the relevant info in for me bingo.However it was up for renewal this year and for some reason he has dropped down to low care instead of medium care he previously had for some reason i dont know if its because he isnt at school anymore ,but of course i didnt read the letter properly telling me that it had been reduced so therfore missed the the time period in which to appeal. lynn

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As far as I can tell it is a complete lottery as to whether or not you application is accepted. Two more or less identical applications could be submitted, one may succeed, the other fail.

 

I suspect it is because the decsion will be made by non-medical staff based on a subjective assessment of time spent rather than an understanding of Autistic Spectrum disorders, so I am sure that the DWP region you live in and whoever picks upthe form on the day can have a huge impact on your chances of success.

 

It also means it's worth appealing as it will cause someone else to have another look.

 

Simon

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mbrown   

Hello All, We receive DLA for our 9 year old asperger's boy. We were refused 2 or 3 times the first time we applied but won on appeal. After 2 years we had to reapply - something we cant figure out as he should get it for life (until 16 years old when he has to apply as an adult)

 

We had no problems with the second application. First time we got middle component personal care and lower mobility. This time we get higher personal care and lower mobility.

 

On the subject of DLA and tax credits if applicable. When I applied for tax credits a couple of years ago I was asked with a disabled child did we receive higher rate DLA. At the time we didn't and it didn't seem to affect our tax credit. When we began to receive higher component personal care we were a little reluctant to tell the tax credit office immediately thinking that it would reduce our amount.

 

On the contrary because we are in receipt of the higher rate we are entitiled to more tax credit of �890 per year!

 

Always appeal against a refusal and try to get some professionals to back up your claim. Always quote worst case scenarios for your childs behaviour.

 

Good luck

 

Mike

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lisa   

Mike,

 

Thanks for the Tax Credit information. We've only just started getting the higher care rate DLA and wondered what would happen with our Tax Credit.

 

Lisa

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Hi cindy here again

 

Well i recieved disabily allowance last week. B)

I got it on the first try, but i did put down the worst cases i had experanced with my son.

Because AS is so unpredictiable it is best to name the worst situations that you have experanced.

Also the DWP will help you fill in the forms at there centre or over the phone.

By doing this i got �75 a week which is fab. >:D<<'>

but the forms are areal pain to fill out and i would of dreaded filling them out for a second time.

 

I mean "how many times do you get up at night" " how long does it take". :wallbash:

 

With my son its so diffrent from day to day.

Its impossable to be accurate.

And i do agree i think its silly that you have to re-do them every two years have'nt

they got AS for life??????????

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lynyona   

yes i totally agree with you cindy unless they come up with a miraculous cure for AS our children will always have it,i have to renew my sons every three years and with mine being lowered this year obviously the way i filled in the form leads them to believe he didnt need as much personal care as he did and how can you define how long each things take,who take s a stop watch with them when doin these things but i think i will start doing all i can say is ts a chore and a nightmare .lynn

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With regard to the DLA by far the best option IF there is a problem with rejected claims and maybe lack of written medical evidence to support the issues. Then obtain an appointment with the C.A.B who will fill in the form and liase with you over the following weeks pending judgement.

 

Initially we made a claim which was rejected even on appeal due to lack of written medical evidence in my GP's notes (now the subject of a forthcoming court case). Then we made a fresh claim which was succesful and yes the forms are generally inspected by folk with no greater medical knowledge than the average person.

 

Rhyn_Essence

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>:D<<'> hi all,well ive disided to try and fill in the forms of DLA

name and date of birth were easy :rolleyes:

But i need some advice over a few question im not asking for answers as each child with AS is different but i just want to try and understand what the dla are wanting to know?i dont want to miss the point!

page 5 "why the child needs someone awake with them during the night"?

we dont need to be awake in the night with him but cant go asleep untill he dose and then he will be some where different in the morning from where he went to sleep , most mornings . :shame:

page 6 "does the child have a delay in their development of physical or sensory skills?

he is too physical ,can i put that?

page 12 "does the child need help being understood by other people?"

example :because of a language disorder or a physical speech problem?

 

harry will talk about same thing over and change the subject loads of times but is that what they are on about? :tearful:

 

communicating with other people?

is the child unwilling to communicate with other people

?eg difficult or withdrawn behavior fustration,stress,a communication disorder.

well ive had enough and im only on page 12 :angry:

 

My days i clean the house,do the garden ,walk the dogs ,vist my granparents every 2nd week for a day cooking ,treasure for majorettes troupe thats before 5 kids come home ,then im on the go till harry settles ,how can i even get the mental energy or physical strenth to fill in a form ,26 pages long asking about all the bad point of my child :angry::angry:

Could we have a page where we could just say what a bad day we have had?

i dont know what you could call it?

any way less of my ramberlings

 

and by the way i had a awfull weekend due to work in the garden with a digger ,meals being late and extra people around and a "friend" said would harry enjoy haveing a digger around! :huh: yeh like **** the whole weekend was a nightmare

from vastsarah x :pray::pray:

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mbrown   

I have a file which has dummy pages for DLA forms and has examples of answers to put down.

 

I wasn't sure about posting it on this board as it is rather long. The colour and appearance is changed during posting too.

 

If anyone would like me to e-mail the original send me a PM if you like.

 

P.S. I didn't create it. MIKE

 

Red Questions are the main questions Blue Questions are the sub Questions

Q~ About the Child

A~ Fill in this section ! child ref No you will find on the letter you received with this form.

Tick all boxes ! except blind/partially sighted.....has hearing problems.......has physical disabilities unless these apply.

Q~ Walking Outdoors

A~ Tick Yes ! In the box write something like this ...........My child tires very quickly & is clumsy therefore he trips & falls often. We use a Major Stroller to contain & restrain him/her as they are prone to running away & also find crowds distressing which cause him/her to be Hyper & panic. My child is also prone to attacking anyone who gets too close. The buggy helps in restraining & controlling him/her it also helps him/her feel safer & secure.

Q~ How many days a week ?

A~ Every day

Q~ How far can the child walk

A~ 50 Metre's

Q~How long does it take them to walk this far ?

A~15-20 minutes

Q~If the child needs someone with them when they are outdoors ?

 

A~Tick Yes ! In the box write something like this:- My son/daughter needs someone with them at all times outdoors as they are Severely Mentally Impaired , he/she has behavioural problems & severe learning difficulties , he/she has no sense of fear & will therefore bolt & run into the road , putting himself/herself in danger & endangering other people , he/she needs constant encourage to stay calm , needs almost constant soothing . He/she would wander off & get lost & would then be unable to ask for help , he/she would walk away with any person who approached them . He/she tends to violence when upset & would attack anyone coming too close. He/she is unable to ask/find a toilet & use it unaided & needs prompting & encouraging to use it , he/she would be unable to to procure food/drink & unable to feed/drink them selves & he/she needs promting & encouraging to feed/drink . He / she is incontinent & still in nappies .(if this applies).

 

Q~Someone to keep an eye on the child

 

A~Tick yes !Write something like this for during the day;- My son/daughter needs someone with them at all times as they are Severely Mentally Impaired , he/she has behavioural problems & severe learning difficulties , he/she has no sense of fear , & does not recognise danger signs , putting himself/herself in danger & endangering other people , he/she needs constant encourage to stay calm , needs almost constant soothing . He/she tends to violence when upset & often attack . He/she is unable to ask for a toilet & use it unaided & needs prompting & encouraging to use it , he/she needs promting & encouraging to feed/drink . He/she is incontinent & still in nappies .(if this applies). He/she is unable to take medication unaided .

 

Q~How Many Days A Week ?

 

A~7 days a week

 

Q~How much of the day do they need some with them ?

 

A~Work out the time the child normally gets up in the mornings & the time it normally goes to bed in the evenings ! the answer to the Q is the hours in between .

 

Q~ Roughly how long do they need someone with them each time during the day ?

 

A~15minutes-2hours

 

Q~Why the child needs someone with them during the night ?

 

A~Write something like this:- My son/daughter is incontinent & wets the bed every night , he/she soils during the night & requires changing , including the bedding ! he/she will require washing if she/he soils . He/she becomes very upset at needing changing & having wet/soiled & it is difficult to change him/her taking a great deal of coaxing & calming ! It is then difficult to re-dress him/her again require lots of coaxing & calming . It then takes a long time to settle him/her back down for the rest of the night , may even require further sleeping medication .

 

Q~How many nights a week ?

 

A~ 7 days a week

 

Q~How much of the night does someone have to be awake ?

 

A~Minimum of 2hrs

 

Q~How long do they need someone awake with them each time ?

 

A~Minimum of 2 hours

 

Q~About your childs developement ?

 

A~Tick Yes ! write something like this :- He/she has difficulties cutting up food , speech is echolic , or non verbal (which ever applies) walking is tiring for him/her , He/she has an aversion to hot/cold food , He/she cannot eat normal food , He/she has an aversion to noise/hypersensitive hearing ! certain sounds alarm Him/her . He/she has temper tantrums.

 

Q~How many times a day does the child need help ?

 

A~15-30 times a day

 

Q~How long does it take each time ?

 

A~20minutes -2hrs

 

Q~Does the child have a delay in their developement of learning skills ?

 

A~Tick Yes ! write something like this :- My son/daughter lives in a world of his/her own , he/she is often not even aware of people around him/her . He/she cannot follow simple instructions , he/she has to be coaxed/encouraged/assisted to do even simple things , at times he/she will simple refuse to follow instructions & has to be coaxed/encouraged/assisted to follow the instructions. Certain sounds especially loud sounds scare & upset him/her & he/she will require calming & soothing .

 

Q~How many times a day does the child need help ?

 

A~15-30 times a day

 

Q~how long does it take each time ?

 

A~20 minutes to 2 hours

Q~ Does the child have a delay in their development of social skills ?

A~Tick Yes Write something like this . My son/daughter has a communication problem , there is little or no eye contact , he/she lives in a world of their own , only plays on their terms , plays on their own in a crowd , does not approach other children/adults to play .

Q~ Roughly how many times a day does the child need help ?

A~ 20-30 times a day

Q~ Roughly how long does it take each time ?

A~1-20 minutes

Q~Does someone need to help the child develop through play ?

A~Yes write something like this . Play is repetitive , we have to monitor the toys he/she plays with & rotate them , he/she does not play appropiately , has little or no imagination , left unattended he/she would simply line up toys . Needs encouragement to take turns ,

Q~Roughly how many times a day does the child need help ?

A~5-10 times a day

Q~Roughly how long does it take each time ?

A~5-30minutes

Q~Waking , getting up & going to bed ?

 

A~Tick Yes !

 

Q~Does some have to wake the child or encourage them to get up or go to bed ?

 

A~Tick Yes ! write something like this :- My son/daughter sleeps very badly & it is a struggle every night to get them into bed & to keep them there. My son/daughter will refuse to go to bed & falls asleep eventually where ever they happen to be ! & then he/she will need to be carried to bed . My son/daughter will eventually go to bed but will not remain there & has to be encouraged & put back into bed numerous times until eventually he/she falls asleep .

 

Q~How many days a week does the child need this help ?

 

A~7 days a week

 

Q~How many times a day does the child need this help ?

 

A~once a day (twice if a younger child who needs a mid-day nap)

 

Q~How long does it take the child to get out or into bed ?

 

A~10mins-3hours

 

Q~Washing & bathing ?

 

A~Tick Yes !

 

Q~ does someone have to tell or encourage the child to wash or bath or shower ?

 

A~Tick Yes ! write something like this :- My son/daughter will not bath or wash without encouragement & assistance , sometimes even not then ! At times I have to bodily lift him/her into the bath/shower , he/she needs to be encouraged to actually wash , or I have to wash him/her myself . My son/daughter hates having his/her hair washed & I have to do it myself . My son/daughter has very sensitive gums & refuses to clean his/her teeth & needs encouragement & assistance to perform this task. My son/daughter has no sense of fear so has to be watched whilst in the bath/shower as he/she is likely to empty bottles etc & to play with the taps , possibly causing himself/herself an injury .

 

Q~How many times a day does the child need this help ?

 

A~twice a day

 

Q~How many times a day does the child need help with washing or bath/shower ?

 

A~ twice

 

Q~How long does it take to have a bath or shower ?

 

A~45minutes to 90minutes

 

Q~Getting dressed or undressed ?

 

A~Tick Yes !

 

Q~Does someone have to encourage the child to get dressed/undressed ?

 

A~Tick Yes ! write something like this :- My son/daughter is unable to dress/undress him/herself , he/she has no idea what clothes are appropriate , & his cor-ordination makes it difficult for him/her to cope with things like briefs & socks . He/she hates getting dressed/undressed & it is a struggle to do it.

 

Q~how many times a day does the child need this help?

 

A~7 days a week

 

Q~How many times a day does the child need this help ?

 

A~3-6 times a day

 

Q~How long does it take the child to get dressed/undressed each time ?

 

A~10minutes - 45minutes

 

Q~Help with toilet needs ?

 

A~Tick Yes !

 

Q~Does someone have to encourage the child to see to their toilet needs ?

 

A~Tick Yes !

 

Q~during the day ?

 

A~write something like this :- My son/daughter needs constant encouragement to see to his/her toilet needs & also needs assistance/encouragement with clothing . My son/daughter wears Nappies/pull ups .

 

Q~During the night ?

 

A~write something like this :- My son/daughter wears nappies/pull ups at night but needs changing during the night due to wetting/soiling . My son/daughter has to be lifted during the night & encouraged to use the toilet .

 

Q~How many days a week ?

 

A~7 days a week

 

Q~How many times does the child need this help ?

 

A~during the day ! 6-8 times........during the night ! 1-3 times

 

Q~How long does it take each time ?

 

A~10-20 minutes

Q~Communicating with other people

A~ YES write something like this . My son/daughter cannot understand or follow simple instructions . These may need to be explained numerous times what is required of him/she , we use PEC cards to show him/her what he/she needs to be doing . We use Makaton to gain his/her attention . At times we have to touch him/her or turn his/her head toward us to gain his/her attention .

Q~How many times a day do they need someone to help them understand other people ?

A~ 20-30times

Q~Roughly how long does it take each time ?

A~5-15mins each time

Q~Does the child need help being understood by other people ?

A~Yes write something like this . My son/daughter has a speech & language disorder , he/she has finds communicating very difficult , he/she has no speech & uses PECS or Makaton , noises or gestures . Speech is often Echolic & Inappropiate . Which ever applies !!!!

Q~How many times a day do they need help to make themselves understood by other people ?

A~10-20 times

Q~Roughly how long does it take each time ?

A~5-15 minutes each time

Q~Is the child unwilling to communicate with other people ?

A~Yes write something like this . My son/daughter has a communication disorder & lives in a world of their own , he/she is often distressed , he/she is often withdrawn or very difficult to handle or hyper .

Q~Tellus about the encouragement the child needs to help them communicate with other people

A~write something like this . He/she needs to be encouraged to look at people when speaking or being spoken to . He/she will often not listen at all & the more you try to communicate with him/her the more distressed he/she becomes . He/she uses Makaton or/and PECS and/or noises or gestures to communicate . He/she can speak but speech is echolic & inappropiate .

Q~How many times a day do they need help to communicate with other people ?

A~5-20 times a day

Q~ Roughly how long does it takes each time ?

A~5-15 minutes each time

Q~Eating and drinking

Q~Does the child have difficulties eating or drinking ?

A~Yes

Q~Does the child need to be encouraged to eat or drink ?

A~Yes

Q~Tell us about the help or encouragement the child needs during the day

A~write something like this . Cannot cope with cutlery , uses fingers , cannot cut up food , will not eat food hot/cold . Will only eat certain foods . Will only eat soft food like baby food . Is a very messy eater often has to be fed .Will not remain at the table constantly runs off . Food cannot touch each other on the plate .Uses special childrens cutlery/ High chair / restraints . Will only eat from certain plate , drink for certain cup .whichever applies !

Q~Tell us about the help or encouragement the child needs during the night

A~If he/she wakes during the night , he/she may need feeding he/she will need to be encouraged to eat or drink

Q~How many days/nights does the child need this help ?

A~7 days/nights a week

Q~How many times a day/night does the child need this help ?

A~ Day = 4-7 times a day Night = 1-3 times a night

Q~How long does it take each time ?

A~5-20 minutes each time

Q~Help with medication ?

 

A~Tick Yes ! For during the day write something like this :- My son/daughter will not co-operate with taking any medication at all , it is always a terrible struggle , sometimes we do not even succeed in getting hi/her to take it . He/she cannot manage his/her inhaler without coaxing & assistance . He /she will not permit creams / plasters to be applied either .

 

A~For at night write something like this :- My son/daughter needs to take further sleep inducing medication , which is again a terrible struggle .

 

Q~How many times a week/night do they need this help ?

 

A~7 days a week ----7 nights a week

 

Q~How many times a day/night do they need this help ?

 

A~4 times a day -------once a night

 

Q~How long does it take each time ?

 

A~10-45 mins

 

Q~Help with Therapy ?

 

A~Tick Yes ! for during the day write something like this :- My son/daughter needs help with therapy , he/she needs coaxing / encouraging /soothing & directing during speech Therapy & play therapy .

 

A~For the night write NONE

 

Q~How many days a week/nights a week does the child need this help ?

 

A~2/3 days a week for during the day--------None at night

 

Q~How many times a day/night does the child need this help?

 

A~1or 2 a day-------None at night

 

Q~How long does it take each time?

 

A~30-60 minutes during the day--------None at night.

 

Q~Help with medical equipment ?

 

A~tick No ! unless this applies

 

Q~Blackouts , fits , seizures or something like this !

 

A~Tick No ! unless it applies ! if it does write exactly what happens before , after & during a fit .

 

Q~The childs mental Health

 

A~Tick Yes ! Write something like this :- My son/daughter gets anxious & suffers panic attacks & becomes Hyper in crowded places & cannot cope at all . He/she gets very frustrated when unable to complete a task . During these outburst he/she becomes violent towards others & is prone to attacking . he/she also becomes verbally aggressive & will throw objects or try to destroy them . The smallest change to his/her routine can tigger this behaviour , even being told "no" .

 

Q~How often does this happen & how long does the child need help ?

 

A~write something like this :- This outburst , panic attacks etc happen on a daily basis , & numerous times in one day often with in minustes of each other . 10-20 such outbursts a day , 10-45 mins to calm him/her down each time .

 

Q~ Movement & co-ordination

 

A~Tick No ! unless it applies

 

Q~Moving about in doors

 

A~Tick Yes !

 

Q~Does someone have to tell or encourage the child to move about in doors ?

 

A~Tick YES! write something like this :- My son/daughter often refuses to leave the house & if coaxing fails he/she has to bodily lifted into his/her stroller , we use stair gates around the house to contain him/her to rooms where it is safe for him/her to be . He/she frequently requires bodily lifting into the bath/shower .

 

Q~When the child is in bed at night

 

A~Tick YES! write something like this :- My son/daughter has nightmares & disturbed sleep he/she often needs reassuring/comforting during the night . he/she is a very restless sleeper & often throws the covers off & cannot retrieve them , he/she frequently wets the bed which then requires resheeting , he/she will not remain in bed once awake & has to be given sleep inducing medication to settle them back to sleep , the medication takes an hour to work , during that time I will have to put him/her back to bed several times .

 

Q~How many nights does the child need help ?

 

A~7 nights a week

 

Q~How many times a night does the child need help ?

 

A~1-3 times a night

 

Q~How long each time ?

 

A~10-120 mins

 

Q~Help the child needs when they go out during the day or in the evening

 

Daytime/Evening

 

1 Swimming :-Taking him/her there , undressing , supervising , drying , redressing , toiletting , refreshments , communicating , taking him/her home again .

 

2 days a week-------once a day 2 hours

 

2 Dr's/Hospital; Appointments :- Taking him/her there , refreshments , toiletting , supervising , coaxing , soothing , communicating , taking him/her home.

 

once /twice a week 1-2 hours

 

3 Hairdressers:-Taking him/her there , refreshments , toiletting , supervising , coaxing , soothing , communicating , taking him/her home.

 

once a month 60-90 minutes .

 

At Home

 

1 Have family/friends to visit :-Refreshments , toiletting , supervising , coaxing , soothing , communicating

 

2 days a week-------2 hours each day

 

2 Play outside:-Refreshments , toiletting , supervising , coaxing , soothing , communicating .

 

7 days a week---------1 hour each time .

 

3 Painting/colouring/working on the computor:-Refreshments , toiletting , supervising , coaxing , soothing , communicating , instructing .

 

5 days a week---------1hour each time.

Q Anything else about the way the child is affected by their illnesses or disabilities

Here you can write about his/her schooling , problems at school , about their Educational statement . Special Nursery school , special play groups , ARC units , etc anything else you feel the need to say !

 

Q~ About the childs condition

 

A~write the approx date you first noticed your child had probelms .

 

Q~Do you think the child will still have the problems in 6 months ?

 

A~Tick YES ! then write beside it ! FOR LIFE !

 

DECLARATION

 

Sign & date

 

Ask someone to fill this section in ! your Health Visitor is usually a good person to do this.

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mbrown >:D<<'> >:D<<'>

what can i say about what you put up B)

im slowly reading thought it ,picking out bits that apply for harry

toileting needs are fine with him ,Although movement he hasnt got a problem ,he just take off and will go at any time of the day or night! :wub:

i think i should put that down.

Helen has sent me a couple of PM which have help enormostly

 

i feel like this form isnt going to beat me" i will survie "

Thank you for your time and effort to put that on the forum

>:D<<'> from vastsarah

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