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DLA is so stressful when claiming for children with ASD + ADHD

(27 Posts)
loftuslass Wed 03-Nov-10 23:39:16

I think DWP need to get medical trained people to make decisions on the claims people put in for DLA as i am at the moment going through the mine field that is DLA and to me it seems as if they put as many obsticles in peoples way as possible. My son is 7 and diagnosed with ASD and ADHD, sent the forms in along with all 3 years of reports from the care worker who helped with his diagnosis as well as specialist letters and diagnosis, doctors letters for treatment and medication (for ADHD), school letters and all relevant letters and paper work and they refused so asked them to look at it again, refused again ! the reasons they gave are 1, he can dress in his own time (he can`t) 2, he can self care (what he is 7 !) 3, he can eat and drink (only a very limited diet and only at home) 4, awareness appropriate to his age (totally wrong as any one with any knowledge of a ASD child will know will know) any one else get the same reasons ?

woolytree Thu 04-Nov-10 00:03:26

I just finished my form tonight for DD, ASD aged 5. Im hoping we dont get refused. Ive sent in everything I have and took 26 extra pages to answer the questions, reports, statements, examples of visual aids and a few extras from NAS site.

I downloaded the decision makers guide and the Medical guide they use so I could be specific in my answers. Im amazed when I look at it from the decision makers POV...they are very uninformed and generalise, basing on IQ and a rediculous amount of evidence needed. Its a nightmare!

Ill let you know the outcome!

Lougle Thu 04-Nov-10 09:59:20

loftuslass the criteria for children are more stringent than for adults.

For each and every area of 'care needs' that you present, you have to show that:

a) the child requires 'attention' or 'supervision' with that aspect of personal care


b) the 'attention' or 'supervision' needed is significantly more than a typical (neither exceptionally able nor exceptionally immature) child of his or her age would need.

The very best way to fill out the forms is to use the Cerebra guide, and approach it in the following way:

1)What does your child find difficult about this area of daily living?
2)What help does he or she need with this area of daily living?
3)Do his or her needs fluctuate? If so what happens on a typical day, a worse day and the worst days?
4)What effect does his or her difficulty have on him or her?
5)What would happen if he or she didn't get this 'attention' or 'supervision?
6) Why shouldn't he or she need to go without this help?

Never ever stick to the boxes they give you. Use a Microsoft Word Document, and then either write 'see 'Question x' on separate pages' or cut out the answers and paste them in to the boxes, folding the paper to fit.

Always use their name throughout, to remind the decision maker that this is a real person.

Be explicit. For example, if describing DD1's medication, I would say:

"DD1 requires medication for her epilepsy and sleep. In order to give her the medicine, I have to draw up the prescribed dose of liquid into a syringe. I then have to go to DD and convince her that we need to give her her medicine. She will often run away screaming 'HIDE!' and I have to retrieve her from wherever she is hiding. She will then bury her face into the sofa. As I am giving the medication, I have to ensure that she is unable to spit it out, as she needs the full dose, and it is impossible to tell how much has been spat out.

Once I have given DD the medicine, I have to calm her down, and wash out the syringe ready for the next use.

She needs the medication for epilepsy twice per day, and each time the process can take 20 minutes in total."

Otherwise, a decision maker who doesn't ever give a child medicine, could think that this is a 1 minute job. Get medicine, give it, job done.

You also need to remember that there are key words that satisfy the criteria. You have to show 'attention' or 'supervision'. So, with dressing, even if it takes your DS 2 hours to dress, unless you show that it is necessary for you to do something to help him dress, it is discarded. Otherwise, a child who is lazy and defiant could qualify for DLA.

So, you have to show them that without your 'attention' or 'supervision' your DS would either not get dressed at all, or he would get distressed, or put the items on in the wrong order, etc.

I am not unsympathetic, at all, it is miserable stuff, but I think your energies would be better placed trying to understand why you didn't get the message across, rather than getting angry with the DWP. They are doing a difficult job, weeding out the cases that qualify from the cases that don't, and then deciding what rate you qualify for.

Anna85 Thu 04-Nov-10 11:02:22

I have also sent off my first ever claim yesterday!! Was very hard...and the more I looked at it the more I felt I was repeating myself!!

I couldn't send in my diagnosis report as this isn;t available as yet but I sent them a covering letter stating this!!

This is my first experience of DLA and was stressful but I just have to put to back of my mind until that envelope comes through the door.

Does anyone know if a lot of ASD children's claims are turned down. Do they have to give you reasons as to why? x

imahappycamper Thu 04-Nov-10 11:07:29

Really good post Lougle.
Although on here we assume that everyone who applies for DLA has a child who genuinely needs it there are actually people who try to claim fraudulently, just as there are for every other benefit, and weeding those out must be quite a task.
I think it is probably harder to prove a need for a younger child with ASD/ADHD because some things can apply to all children.

Lougle Thu 04-Nov-10 11:08:23

Anna85, DLA is needs based, not diagnosis based. The ASD spectrum is huge, and there will be some children on it who are virtually indistinguishable from their peers, and therefore wouldn't get DLA, and others that would get both High Rate Care and High Rate Mobility.

Anna85 Thu 04-Nov-10 12:14:23

I can only but try....!

DS is High Functioning so from an outsider probably they wouldn't tell but the needs he have to me are greater then a child of his age....but then others may disagree!

ouryve Thu 04-Nov-10 12:31:40

loftuslass, DS1 is almost 7 and has ASD and ADHD. Lougle has some very good advice and I found the cerebra website very useful. For issues like dressing, I took care to point out things like the struggle with getting dressed made him reluctant to change for PE at school, with the result that he was missing out and being isolated form his peers. Similarly, his tendency to put clothes on inside out or back to front and not fasten them properly (pointing out that the polo shirts that he can't fasten are a part of school uniform) opens him to ridicule form other children, further isolating him.

If your son has help at school either from a statement or school action/+ then mention it wherever it's relevant and emphasise what the outcome would be for him if he didn't have this help. Would he be left out? Would he have difficulty accessing the curriculum or joining in with daily routine activities at school. Would he be especial vulnerable to bullying because of his social and communication difficulties? Is he in danger or likely to put others in danger because of hyperactivity and impulsive behaviour, unless someone is supervising him closely? Many of these things are evidence that his awareness is not that of a typical 7 year old.

loftuslass Thu 04-Nov-10 12:39:22

lougle- i did all this and you would think it does not take a lot for the people at DWP to know that a child with any disability needs more care, the reasons they gave me for refusal are just not true as with my DLA form there was reports from a lot of profesional people who know my sons needs and just seems would be better if they had medical trained people deciding these things, went to see a solicitor on tuesday and he agreed also he said most people who go to appeal win so seems so daft that in this economic bad times that spendind all this money on so many appeals just to lose is madness!

loftuslass Thu 04-Nov-10 12:46:43

I was just wondering how many others have had these same reasons for refusal.

jellyhead Thu 04-Nov-10 13:40:48

My ds1 has ASD/ADHD. My first application was refused then I applied again a year later.
This time a lady from the local money advisory service did the form with me.
She said to highlight the ADHD part of his diagnosis more as HFA tends not to be less likely to have a successful application.
We covered every bit of the paper and gave alot of examples of his behaviour eg descibing the scenes of crossing the road, meeting children in the park.
We highlighted the worst of his behaviours and analysed how much time everything took which was more than I had appreciated.
The second application was successful

5inthebed Thu 04-Nov-10 13:52:07

Getting DLA is very hard and very stressful. I'm just glad I've not got to repeat the process until 2015.

Lougle has given excellent advice.

If you can, contact local charities such as Cash for Kids, who have trained people to help fill the forms out. The man who came to help me fill mine out for DS2 had actually done a training session with the DLA awards team, so he knew what they would be looking for.

Lougle Thu 04-Nov-10 14:16:15

loftulass I am not suggesting that you didn't fill in the form conscientiously. I was just trying to give you the benefit of the many, many, many hours I have spent reading the DWP DLA decision makers' guide, the Handbook of Medical Conditions, appeal documentation, Tribunal documentation, Cerebra guides, etc.

You can write 1000 words but if you don't use the right words, it will fail. The decision makers are not allowed to make a decision based on diagnosis alone. They are not allowed to award based on knowing 'that a child with any disability needs more care'. If it isn't written, they can't award.

There is a poster on here called Riven. Her DD has a severe form of cerebral palsy, and is totally dependent on her parents for all of her needs. She can't just write 'severe cerebral palsy' at the front of the form and send it in. She still has to answer all the questions.

I obviously haven't given you the advice you wanted. In fact, I am not sure what advice it was that you wanted, because every time you are offered information, you simply say 'DWP are thickos, and they need medically trained people'.

I hope that your appeal is successful, and I hope that your DS gets an award that is appropriate for his needs. I am no longer going to contribute to this thread, because frankly it is simply a waste of my limited time and even more limited energy. I, as do all of the posters on this board, share the knowledge I have gained to allow others to benefit without trawling through the same stuff. I am not wasting any more energy here.

sumum Thu 04-Nov-10 14:20:31

I think jellyhead has a good point to highlight the adhd.

My ds has dx of adhd and prob asd and i got midlle rate care and low rate mobility first time within three weeeks of sending off forms.
I just told it how it was and handwrote in the little boxes and sent very little supporting evedience, just dx letter and iep from school.

definatly worth another try, esp with all the good advice on here.

Lougle Thu 04-Nov-10 14:20:48

Before I go Anna85 - people like your DS are precisely why the forms are so long - to give you an opportunity to demonstrate how his disability impacts on his day to day life, even if it is 'invisable'. Do not be scared off. If you have been clear, explicit, and detailed, then all you have to demonstrate for lower rate, is that he needs at least an HOUR of extra assistance per day (as a rough rule of thumb). To get Middle rate, it has to be frequent assistance throughout the day over and above that of a typical child his age, or care needs at night. High rate is awarded when those care needs are throughout the day & more than twice for any length of time or once for over 20 minutes on at least 5/7 nights each week.

NorthernSky Thu 04-Nov-10 14:21:29

Message deleted

5inthebed Thu 04-Nov-10 14:53:55

NorthernSky, I'm burying my head in the sand about the medical exam tbh. DS2 will be just like your DS2 I expect. sad

loftuslass Thu 04-Nov-10 15:03:58

lougje- at no point have i ever not taken advice from here ? this is the reason i went to see a solicitor for advice as when my forms were filled in it was with the help of my care worker who has many years experience of these things and as my son was only diagnosed in august, this is all new to me, my care worker sent a 14 page detailed explanation from her experience of my sons needs and she has helped many people with ASD and ADHD among other conditions and disabilitys get DLA awarded. i have since my sons diagnosis tried to read and digest as much imformation as i can and been on a lot of other sites and read a lot of other posts from people who have qualified for years then to be refused on review only to win it back on appeal,or been refused point blank only to win at appeal these are the reasons i have been asking questions after all knowledge is power is it not ? i do realise that there is so much fantastic information on here and much of it makes sense but all i was saying is i would not go to the local job centre to ask them advice on me or my sons health i would go to a doctor so why do they take so little notice of these professionals who take great care to get these things correct ? on a personal note my question was "if anyone else had had the same reasons for refusal" as me as for the DWP they do make a lot of mistakes in these decisions as the amount of appeals that are over turned with overwhelming supporting evidence shows many many times in case law and on these sites (my solicitor knows personally of numerous appeals as this is what he specialises in and i was put in touch with from parents at the MAINS project so to finish i am not the only one who is frustrated and upset at the DWP for the way these claims are treated as these claims are for children who need as much help now not later sorry if you think i don`t take any notice, i do and have read with interest a lot of posts including yours sorry if i have upset you in some way

sugarcandymonster Thu 04-Nov-10 15:12:30

NorthernSky - Disability Alliance says that the new medical examinations won't include under 18s (or over 65s) - it only applies to working age people.

NorthernSky Thu 04-Nov-10 15:14:23

Message deleted

5inthebed Thu 04-Nov-10 18:30:45

SCM, I could kiss you, one weight lifted of my shoulders smile

loftuslass Fri 05-Nov-10 10:01:15

very useful imfo northern sky cheers

Kyleharry Mon 16-Jan-17 13:15:49

Hi my son was diagnosed with high ADHD at four years old he will be 16tteen in march dla are asking why my son can't clam his dla him self stupid question I know but need help on how to put it in words as I am useless puting it down on paper great if someone could help

scrabble1 Mon 16-Jan-17 19:21:55

Appeal this. Our ds has adhd and everyday life needs much more supervision than his peers. His behaviour is unpredictable and he doesn't see danger. Every daily task takes much longer to do. PM me if I can help

zzzzz Mon 16-Jan-17 19:46:58

This thread is SEVEN years old.

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