DLA application......

[Karen A]

Hi all.I am feeling very sad and need some moral support.

I have plodded on for three years doing all sorts of things for Ben.I do not work.I gave up work [district nursing ] when we had our elder son.

I decided before christmas that as Ben had obtained an AS dx it would be a good idea to grit my teath and do the DLA forms.I have been feeling sad at times as I had intended to consider returning to work.It does not feel like an option at the momment...at least not until Ben is settled at secondary school [september].

Anyway I found the forms upsetting.They were a real wake up call as I had not realised just how much I do day in day out .I never stopped to think about how much support Ben needs.As I was a nurse before I suppose a lot of the practical stuff was what I had done in my work .I had not stoppped to consider that Ben is ten now and needs as much help as many children in nursery in some respects.

My OH and myself spoke to the CAMHS team who support us today.Ben's therapist appeared surprised that I had decided to apply for DLA and that I considered Ben to be diabled.

Ben talks like an adult and appears in some ways to be very capable indeed.It was very difficult explaining that our intelliegent knowledgable son can't bath himself,make himself a cold drink or get dressed without several reminders.

I ended up feeling like I was attempting fraud [rather unlikely since OH is an accountant in the NHS....not good for his job prospects ].

Is it just me or have others found DLA applications hard work.I wondered about just withdrawing the application I feel so upsett.

The team that support us are really very good.I think perhaps I am just independent and had not wanted to admit how much I am doing at home.

I did a presentation last year about my experiences and gave it the title ''mum as care co-ordinator ''.Perhaps I have been so good that nobody knows how much I am doing. Karen.

[ScienceGeek]

I found the DLA forms very hard as well. I'm sure there are a lot of people that find them hard. For me I found it hard because we had to put in the worst case scenario how bad things can get and how much help I need from my wife, it was not easy at all.

[baddad]

They are the absolute pits. I don't think it's that we are 'over optimistic' on a day to day basis - that we have our heads up our bums - but we do try to concentrate on the positives and/or be realistic. Filling in a DLA form means thinking about all the negatives, and drawing 'shopping lists' of all the cant's

 

i think there should be an 'anti-DLA form form' to bring you back up again afterwards - where you can list all of the positives and all of the achievements etc just for your benefit (secure in the knowledge that it's never gonna be seen by anyone else who wants to use those achievements as an excuse to disenfranchise your child from the support he does need!). In leiu of that, take half a bottle of red wine with your evening meal

 

L&P

 

BD

[Karen A]

<'> <'> <'> Thankyou both.My dearly beloved and myself made an agreement that we would limit our intake of red wine to particular evenings only.As I had my quota last night he has taken great joy in reminding me that I should not be drinking tonight....at least I have reason to have some of the nice bottle he bought home now.

If I had wondered after posting on the other thread about staying around here you have reminded my why it is all worth it.

There is no replacement for a message from somone that understands....because they have been there.Karen.

[Nic m]

Hi Karen,

 

you are not alone, and i think baddad's advice is a great idea i shall do that myself i think write a list of positives, i am just about to embark on DLA forms again.

 

This was part of my job years ago to help others fill these forms in, so i was prepared for the upset, or so i thought!

I cried for the 3 days it took me to fill in the forms, and i have been upset at having to face the reality again that my clever wonderful girl requires a great deal more support than you would expect at her age.

I did not reapply the last time as there had been so many improvements in our lives, but starting secondary and all the stress that that has brought has meant my input is needed as much as ever.

 

Be extra kind to yourself, and know that you are doing a great job in helping your son develop if his workers struggle to see why you would apply.

 

Make sure you photocopy the forms and get someone to read over them in case you have still not written everything.

 

I am generally an optimist and try always to find a positive in everything, but those forms really make you realise things that are upsetting, so you are not alone.

 

Take care,

 

Nicola x

 

[JsMum]

 

 

 

Hi Karen,

 

I do know the feeling sad bit, and do not under rate it, I feel terrible after filling the 50 odd sections in, its a cold wet fish slapping you across the face, the forms are in all honesty set up more for physical disabilties and I feel that the forms do need radical reductions as all you do is repeat, repeat, repeat in sections.

 

The worst feeling I feel is alone, desperate, and at times dispair and wonder how I get up from the bathrooms floor lino that Ive wet throw crying.

 

The forms are a real depressing process and I feel I always need councilling after them, it takes weeks to fill in and months to get over them and then when your better in comes the brown letter envolope that slams on the floor crashing the letterbox lid for good measure to let you know you indeed it has arrived, your heart pounds and you sweat in antisipation for the result, it is stressful, and exhausting.

 

J went to tribunal for his first award at five years old and then recieved renewals over the years, with the help of Welfare rights and other agencies.

 

In more recent years I have recieved support from Contact a family who have fantastic booklets on claiming DLA.

 

Js award was renewed recently but then just assessed again as he has gone into residential school, they are also looking at the mobility award as he is older and is not aware of danger, and he is now nearly 12 and has severe behavioural and communication impairments though he too can be very verbal its how he understands and uses language that is important and how that could lead him into potentially dangerous situations if he didnt have supervision or support.

 

It is a slog renewing, but I now do it by PDF and photocopy everything I send in and it is hard processing it all but if J didnt get his DLA he wouldnt access the therapies we pay to help support him, buy in the extra equiptment that helps to improve his life and the extra resources I buy to understand his special needs that support both him and me.

 

If you feel your son has a right to the DLA you are doing the right thing.

 

Js has his award now until he is 16yrs old then he will have to fill in as an adults, he has his own account and is spent on his needs.

 

J is now a disabled child and has access to other rights that are in the Disability Discrimination Acts and I would say that is a good thing.

 

It really is his right, not mine.

 

JsMum

 

 

[lynne]

 

 

We all get into a routine of doing things automaticly for our children. Hence, we do not see this as a difficulty for the child because we compensate by doing it.

 

But it is only when we compare our children to other normal children do we realise what we really do. Filling in the DLA form only reinforces what we actually do.

 

Plus claiming for DLA is also a way for us to omit our children have a disability. Some people are ready to do it earlier than others.

 

We did not have a problem filling out the form or felt uncomfortable. This was because we were fitting daily battles trying to get him the right help and support he needed in a non friendly ASD school.

 

But we can understand where you are coming from.

 

We get lower mobility allowance on our DLA (like a lot of other people). Our 11year old goes to school in a taxi with an escort so should we ???reapply or contact DLA and ask them to review the mobility part of the award. Surely if an 11 year needs supervision to go school because it is unsafe to leave him on his own as he has no road safety and will wonder off with any one.. would this warrent an increase in the mobility part of the DLA

 

 

 

 

 

[chris54]

I filled the DLA form in on line. I found it easier as I could keep going over it refining what I had put.

If you do it on line you can save it for a few weeks, the payments starting from when you first registers.

 

I was a bit like you but now wish I had applied a long time ago.

If you get dla for your son you will also be able to claim disabled child tax credit which is �49 but is dependant on total income so you may not get that much or none at all.

Also if you don't work or your taxable income is below �95 a week, That is your income not the total income, Then you may be entitled to clam cares allowance. which is �50 a week.

 

My wife has an underlying entitlement to Cares Allowance for our son but because she gets incapacity benefit which is more she doesn't get it, you can only get no of them types of benefit at a time.

 

By the way I work full time.

 

Once you get DLA You only have to tell the tax credit office, No form to fill in,that is if you already get child tax credit.

The carers Allowance form is simple to fill in. I did it online for my wife.

Edited January 14, 2009 by chris54

[pookie170]

I know how you feel, Karen......

Its a bit of a shock when you realise how much support your child really needs on a day to day basis,you're accustomed to life as it is and don't give much thought to how other folks might view things.....especially if they were thrown in at the deep end!! It must be even more intense for those who fill it in for themselves...I know my Dad would not do it, but that was fine cuz we were too well off apparently.....

 

Chin up, Karen, you've come a long way, as has your son, and the shock of form-filling will fade.

Saints preserve me, (pleeeease, I'm starting to sag everywhere!!! ) I'm gonna say this twice in one day......

Baddad has the right idea, just sit down with your drinkypoo tonight and mull over your lad's progress and achievements, it'll get back in perspective again!

<'>

 

Esther x

[JsMum]

We get lower mobility allowance on our DLA (like a lot of other people). Our 11year old goes to school in a taxi with an escort so should we ???reapply or contact DLA and ask them to review the mobility part of the award. Surely if an 11 year needs supervision to go school because it is unsafe to leave him on his own as he has no road safety and will wonder off with any one.. would this warrent an increase in the mobility part of the DLA

 

The reason we are asking for the mobility to be looked at again as it is in renewal stage and his needs have changed.

 

By requesting a renewal you risk loosing some or all of the award it is a very difficult to know, I would get further advise.

 

 

JsMum

 

 

 

[Clare63]

Karen,

 

Can totally empathise, seeing it all in black and white makes you realise all the things your child is unable to do, I found completing such forms opened up old wounds from time of dx, that the "ride" is not going to be easy and that there are many hurdles to get over.

 

I am surprised at CAMHS reaction, surely this is the sort of thing they should be advising parents about, not making them feel guilty about it

 

Please do also consider Carers Allowance, I found that I was entitled to this and am also able to work part time provided I keep within the requirements.

 

Be kind to yourself <'> <'> <'>

 

Clare x x x

[chris54]

Surely if an 11 year needs supervision to go school because it is unsafe to leave him on his own as he has no road safety and will wonder off with any one.. would this warrant an increase in the mobility part of the DLA

 

I agree but I think they would say that this is a care issue and not mobility. I have heard of people getting the higher rate mobility with a less compelling arguments.

A Lot has to do with how good you are at filling in the forms, how you word things and if you have any backup from professionals.

We got the lower rate mobility. Children once in key stage 2 are deemed to be able to find there own way to and from school. I would be lucky if he got to the corner of the road. My job enables my to walk my son to and from school, my wife is disabled and cannot walk far so cannot help.

 

But just think of all the money I am saving by not having to go to the gym, a mile each way, 4 miles a day all the exasis I need.

[Tally]

I felt very similar when I made my own application last year. It was very hard work and it just made me feel bad having to fill in nigh on 100 pages about how useless I am. I felt like a fraud ticking that I need help every day, when in reality I need help 2-3 days a week but they are unpredictable . . . but this is the way you are supposed to fill in the form, so I know rationally that I have not lied.

 

I think it's easy to forget how much you do. I was not really aware of the accommodations I make for myself, when you do something every day it just feels normal and not like a sign of disability.

 

But if they award him DLA it is because you are entitled to this money. Many parents return to work once their child starts school and you haven't been able to yet, so the money can go toward making up the defecit.

[Karen A]

<'> <'> <'> Thanks all.Karen.

[Anna Van Der Post]

Karen,

 

The DLA forms stress me so much and I am currently having to fight them regarding my 16 year old son. Like your child mine is extremely intelligent and can appear so intellectually able that it is hard for people to understand the extent of his disability. I find the forms impossible to adapt to my son's particular problems, I find it upsetting to write the things I have to say about him (it feels like a betrayal). I feel that the people dealing with the claims haven't got a clue. If we were not so poor (because of the effects of his aspergers on my availability and ability to work) I would not be fighting (at a time when I have no fight) to get them. I really want to change these forms and get one just for autism - it is ridiculous that people who are already stretched are having to fight for everything - education, a correct medical diagnosis, and financial assistance all things to which they are fully entitled. I so envy people who just pop their child's name on a school list and job done- the child receives the education they need.

 

I am so relieved that others feel the strain as much as I do (sorry but relieved)!

 

Anna

 

 

[Karen A]

Karen,

 

The DLA forms stress me so much and I am currently having to fight them regarding my 16 year old son. Like your child mine is extremely intelligent and can appear so intellectually able that it is hard for people to understand the extent of his disability. I find the forms impossible to adapt to my son's particular problems, I find it upsetting to write the things I have to say about him (it feels like a betrayal). I feel that the people dealing with the claims haven't got a clue. If we were not so poor (because of the effects of his aspergers on my availability and ability to work) I would not be fighting (at a time when I have no fight) to get them. I really want to change these forms and get one just for autism - it is ridiculous that people who are already stretched are having to fight for everything - education, a correct medical diagnosis, and financial assistance all things to which they are fully entitled. I so envy people who just pop their child's name on a school list and job done- the child receives the education they need.

 

I am so relieved that others feel the strain as much as I do (sorry but relieved)!

 

Anna

 

Hi.I have to be honest.Although I don't work my partner does have a secure job so we are not finding times as hard as many people.However I was a professional myself once.It is a fact that many of the professionals involved with us have done a lot less than they would have done in most cases because I do so much.I was a community nurse and have also trained as a TA so I am more aware of some of the issues than some of the professionals.However because I have not worked for several years my nursing registration has now expired.The last time I attempted to obtain car insurance my premium increased.The reason being that I am no longer a professional but I am not a carer either because I have no proof....effectively I have been doing nothing for thirteen years.

I guess we are not poor.However I am dependant on my husband ....which is not what I intended.If I did decide to return to work then the professionals supporting Ben would have major difficulties.There is no after school provision available.I spend two afternoons per week at CAMHS appointments.There is no suitable holiday provision.School need to see me at least once a week.Ben frequently does not manage a whole week in school.

Dad has a very supportive employer fortunately.However he is at CAMHS appointments one afternoon per week.He is regularly late for work or called at work due to issues with Ben.He ends up working flexitime around commitments relating to Ben but that leaves no time for our relationship.At the end of the day OH pays the mortgage.

 

We could in theory decide to fight for specialist secondary provision.It would need to be funded by a Statement .There is no appropriate specialist provision in the borough or nearby boroughs for children with AS who are able to do GCSES.So it would need to be residential school out of London.People here have a rough idea of how much that would cost the LEA.Considering that the only statutary funding that ''Ben'' currently recieves is the funding for a Statement in mainstream....a large proportion of which appears to be used to support him in a very broad sense ,I do not think it is unreasonable to apply for DLA.

Not so sad this morning.....but a bit cross. <'>

I have to say that I am not sure about the idea of one form for autism.Ben also has dyspraxia and the difficulties are as much about dyspraxia as the AS bit.Ben did not need any less help two months ago before the AS dx.I am more for appropriate provision based on a timely holistic individual assessment.If autism was selected as a specific category I fear the same situation would occur as happens with attempts to obtain support from children's services child disabilty teams....the limit would be set so that higher functioning individuals would not meet the criteria. Karen.

[CEJesson]

The worst part of a DLA application is the amount of repeated questions

[Anna Van Der Post]

 

 

I have to say that I am not sure about the idea of one form for autism.Ben also has dyspraxia and the difficulties are as much about dyspraxia as the AS bit.Ben did not need any less help two months ago before the AS dx.I am more for appropriate provision based on a timely holistic individual assessment.If autism was selected as a specific category I fear the same situation would occur as happens with attempts to obtain support from children's services child disabilty teams....the limit would be set so that higher functioning individuals would not meet the criteria. Karen.

 

Karen,

 

Fair point - back to the drawing board.. Has any one got any ideas on how we can improve the DLA process?

 

It seems to be so common for parents to have to take time out of work on a regular basis. So many people I have come into contact with have had to give up careers to accommdate their child - it can be frustrating and such a waste of great talent (having said that it can never be a waste if we are supporting our children). There are so many truly amazing parents out there and I shall never fail to me humbled.

 

Lucky Ben to have you!

 

Anna

[Karen A]

I have to say that I am not sure about the idea of one form for autism.Ben also has dyspraxia and the difficulties are as much about dyspraxia as the AS bit.Ben did not need any less help two months ago before the AS dx.I am more for appropriate provision based on a timely holistic individual assessment.If autism was selected as a specific category I fear the same situation would occur as happens with attempts to obtain support from children's services child disabilty teams....the limit would be set so that higher functioning individuals would not meet the criteria. Karen.

 

 

Karen,

 

Fair point - back to the drawing board.. Has any one got any ideas on how we can improve the DLA process?

 

It seems to be so common for parents to have to take time out of work on a regular basis. So many people I have come into contact with have had to give up careers to accommdate their child - it can be frustrating and such a waste of great talent (having said that it can never be a waste if we are supporting our children). There are so many truly amazing parents out there and I shall never fail to me humbled.

 

Lucky Ben to have you!

 

Anna

 

Thanks.I don't waste the talent.....I have spent a lot of time here in the last year using my knowledge and expeience to support others...amongst other things.

Alas the pay was not good and career opurtunities are limited.

My current employer [OH] also reviews my job description at periodic intervals.The appraisal is not good when the ironing mounts up and I am found here tappy tapping as my family describe it.

 

[Lucas]

I remember I went to a charity in my town called Carers Resource for help filling in my form and I was there for an hour and a half describing things I'd never told anyone about how I percieve things and why it causes difficulty. I was very happy with that until the Department for Work and Pensions decided they needed to send a doctor to interview me at home and I needed my mum as an appropriate adult. The doctor was just a normal doctor and knew nothing about ASD. So I had to repeat it all again in front of my mum, who never knew the extent of my issues or how long I had been having them. She always assumed I was so high-functioning that she didn't need to be involved in Autism matters. What I described also seemed to profoundly affect the doctor, who started being a lot less noisy and assertive and was virtually a red-faced mouse when he left.

 

As horrible as the initial experience was, I spent the rest of the afternoon smiling and watching films on my PC because of the knowledge that for the first time I had got a professional to see the reality of 'mild' Autism.

[Karen A]

I remember I went to a charity in my town called Carers Resource for help filling in my form and I was there for an hour and a half describing things I'd never told anyone about how I percieve things and why it causes difficulty. I was very happy with that until the Department for Work and Pensions decided they needed to send a doctor to interview me at home and I needed my mum as an appropriate adult. The doctor was just a normal doctor and knew nothing about ASD. So I had to repeat it all again in front of my mum, who never knew the extent of my issues or how long I had been having them. She always assumed I was so high-functioning that she didn't need to be involved in Autism matters. What I described also seemed to profoundly affect the doctor, who started being a lot less noisy and assertive and was virtually a red-faced mouse when he left.

 

As horrible as the initial experience was, I spent the rest of the afternoon smiling and watching films on my PC because of the knowledge that for the first time I had got a professional to see the reality of 'mild' Autism.

 

It is so unfair expecting a teenager or young adult to go through personal dretails in front of their mum.

I felt bad enough talking about some of the things Ben needs help with with the therapists we see.

Karen.

Edited January 16, 2009 by Karen A

[pearl]

Only just seen this, <'> for you.

We are DLA veterans, JP has had it for around 12 years now, he's moved from lower/middle to lower/lower over the years. It runs till he is 21 & if he is still employed full time by then, he probably won't reapply. We've also discovered (thanks to Tally's thread ) that because of his DLA he can claim Tax Credits, so his application went in over Christmas. I'm really cross that we found out by accident though as he'll have missed a year. It was ever thus.

 

The forms are just awful, I tried to cut off emotionally & regard them as a necessary evil. I could never work full time when he was younger, so I regarded the money as partially making up for what I could not earn. I also claimed Carers Allowance for a couple of years & earned up to the limit as well. These days, its his board & lodging, therefore his tiny apprentice wage is all his own (he's saving up for a house!)

 

I think baddad's idea is really good - counter every negative with your own private positive

Edited January 16, 2009 by pearl

[edith simon]

Hi all.I am feeling very sad and need some moral support.

I have plodded on for three years doing all sorts of things for Ben.I do not work.I gave up work [district nursing ] when we had our elder son.

I decided before christmas that as Ben had obtained an AS dx it would be a good idea to grit my teath and do the DLA forms.I have been feeling sad at times as I had intended to consider returning to work.It does not feel like an option at the momment...at least not until Ben is settled at secondary school [september].

Anyway I found the forms upsetting.They were a real wake up call as I had not realised just how much I do day in day out .I never stopped to think about how much support Ben needs.As I was a nurse before I suppose a lot of the practical stuff was what I had done in my work .I had not stoppped to consider that Ben is ten now and needs as much help as many children in nursery in some respects.

My OH and myself spoke to the CAMHS team who support us today.Ben's therapist appeared surprised that I had decided to apply for DLA and that I considered Ben to be diabled.

Ben talks like an adult and appears in some ways to be very capable indeed.It was very difficult explaining that our intelliegent knowledgable son can't bath himself,make himself a cold drink or get dressed without several reminders.

I ended up feeling like I was attempting fraud [rather unlikely since OH is an accountant in the NHS....not good for his job prospects ].

Is it just me or have others found DLA applications hard work.I wondered about just withdrawing the application I feel so upsett.

The team that support us are really very good.I think perhaps I am just independent and had not wanted to admit how much I am doing at home.

I did a presentation last year about my experiences and gave it the title ''mum as care co-ordinator ''.Perhaps I have been so good that nobody knows how much I am doing. Karen.

I have found them very very hard.As I still find each assessment very painful and exhausting.My son is 22 and we had a consultant from adult team and he sai he has never come across somebody who would find a weekly /for 3 months/ assessment painful as people are getting used to all this as time is passsing.

I sai definitely not in my case and maybe others do not dare to complain or express their feelings /as I also tried to be patient for 3 months/ and I also asked why they do not ask all medical nites from childrens team.The answer is that "maybe they are mistaken or maybe it is not proper...../

Anyway with DLA it was very painful and at that time Mencap was really helpful and a friend who has autistic child but otherwise I also was on the point of giving it up.

Lots of courage and patient to you !!

Edith

[Karen A]

Thankyou all. <'> OH and myself did a lot of thinking over the weekend.We now plan to talk to CAMHS .At least the debate about the form has raised our awareness that if we are providing so much support for Ben and people were not aware then perhaps it is reasonable to review the support we are getting.Karen.

Edited January 19, 2009 by Karen A