Advice please on completing a DLA form for a child with severe speech problems.

samantham06

Hi everyone,
Just wondering if anyone may be able to help? Or give me advice if they have had the same issue as me.
My son has just turned four, and has severe speech problems, he has been provisionally diagnosed as having verbal dsypraxia by a private speech therapist. He recieves speech therapy once a week, I have to practise with him for an hour each day and he is going to a specialist speech and language unit in september when he starts school.
I have been told by various people that he may be entitled to DLA because of his problems. But to be honest I have the forms in front of me and am having great difficulty in completing them!!
I just dont know how to word everything and what sort of things to put in!! Ive heard that it can be very difficult to obtain DLA unless the correct information is on the forms, so could really do with some advice.
His disorder affects pretty much every aspect of our lives, as he cant communicate with others or even say his name, so it just makes everything more difficult and he needs me to interpet. I just dont know how to word it all!
I feel like the forms are just trying to catch you out!
Anyway.. sorry for rambling. Needed to get that out!!

smk77

samantham06 wrote: »

Hi everyone,
Just wondering if anyone may be able to help? Or give me advice if they have had the same issue as me.
My son has just turned four, and has severe speech problems, he has been provisionally diagnosed as having verbal dsypraxia by a private speech therapist. He recieves speech therapy once a week, I have to practise with him for an hour each day and he is going to a specialist speech and language unit in september when he starts school.
I have been told by various people that he may be entitled to DLA because of his problems. But to be honest I have the forms in front of me and am having great difficulty in completing them!!
I just dont know how to word everything and what sort of things to put in!! Ive heard that it can be very difficult to obtain DLA unless the correct information is on the forms, so could really do with some advice.
His disorder affects pretty much every aspect of our lives, as he cant communicate with others or even say his name, so it just makes everything more difficult and he needs me to interpet. I just dont know how to word it all!
I feel like the forms are just trying to catch you out!
Anyway.. sorry for rambling. Needed to get that out!!

The forms aren't the easiest to fill in. They don't give you much chance to explain how the condition impacts your life.

A couple of suggestions for you having recently filled in the form, had it rejected and then provided more evidence in a letter...

1. A number of comments I've read on forums and facebook groups mention contacting Citizens Advice.

2. Check out the website for charities that support the condition. They may have advice on what to fill in. Give them a call and ask if you can't find anything on their web site.

3. Have a look at this link. It sounds like you've got a claim to be made so do it!


Finally, don't look at the forms again until you've done the above. They'll put you off!

Good luck!

stiltwalker

See if you have a local carers organisation in your area, they should have plenty of experience helping people to fill in DLA forms. It is a very hard form to fill in, I know because I have done it for my daughter who is 3 and has mobility, co-ordination, balance and communication delays. Don't try and do it all in one go, have tissues handy (and maybe wine!). I got the rates I felt DD deserved first time and took all of 2 weeks from forms submitted to money in the bank so I must have written the right things. DLA for kids is based of care need that are in excess of those for other children their age so make sure that you are clear in your form on what your son needs help with that other children his age do not. It is also based on care needs not diagnosis so make sure you are clear how much you do and how much time this takes up, it might be very useful to keep a diary for a week or so, noting everything down. I also had a very recent paediatricians report (end of Jan and submitted form early Feb) which I'm sure played a big part, and my DD's physio filled in the section 'someone else who knows your child'. I don't know if you've come across it but I use the Early Support family file to keep all of DD's stuff in one place and organised, this meant that when I filled the forms in i had everything to hand and could send copies of everything. It might be worth seeing if any of the practitioners involved with your son have knowledge of this or support it.

Good luck and chin up!

samantham06

Thanks very much for the advice guys, the tissue and wine sounds like a very good idea you dont really think about the issues your child has until you have to write them down in black and white!
I will have a look online and see if there are any charities/care companies around my area that may be able to help me, also I have various reports from speech therapists that I will include in it. (had to pay £90 for one of them!!)
I am really struggling with a part of the form that is about personal care (brushing teeth,getting dressed.. ect), now my son often gets into tatrums as he cannot communicate what he wants to wear..ect. But really not sure how I am meant to portray this on the form and if its any different to other children of his age?

Also some of the things he doesnt have trouble with, like getting around in unfamiliar places for example, does a child have to have a problem with literally every point on the form to be awarded DLA? As really not sure how they work it out.

I am just hoping we manage to obtain it, so I can continue with his private speech therapy at a cost of £60 per week, as the NHS are diabolical!

smk77

samantham06 wrote: »

Thanks very much for the advice guys, the tissue and wine sounds like a very good idea you dont really think about the issues your child has until you have to write them down in black and white!
I will have a look online and see if there are any charities/care companies around my area that may be able to help me, also I have various reports from speech therapists that I will include in it. (had to pay £90 for one of them!!)
I am really struggling with a part of the form that is about personal care (brushing teeth,getting dressed.. ect), now my son often gets into tatrums as he cannot communicate what he wants to wear..ect. But really not sure how I am meant to portray this on the form and if its any different to other children of his age?

Also some of the things he doesnt have trouble with, like getting around in unfamiliar places for example, does a child have to have a problem with literally every point on the form to be awarded DLA? As really not sure how they work it out.

I am just hoping we manage to obtain it, so I can continue with his private speech therapy at a cost of £60 per week, as the NHS are diabolical!

My son who is 4 next month ( no disabilities) wears what is put out for him to wear. i.e. he doesn't get a choice. He does pick his own PJs from the draw. He does however have an input into the choice of clothes he is bought.

Remember, you don't need to fill in all of the sections. The sections giving the most "free text" that were important for my daughters claim were 8, 15, 16, 18 & 24. Sections 8, 9, 14, 17 & 24 are most applicable to your son.

I'm going to send you a PM with a bit more information about my daughter's claim and the info that I found. She has an entirely different condition but the info I got hold of gave lots of good ideas.

clearingout

just a word of support - I finally engaged a private speech therapist last August as my then 4 year old's speech wasn't progressing - he is diagnosed as 'severely speech delayed' and we have a family history (his cousin was actually statemented with speech difficulties). My youngest child is also experiencing similar problems, although still young (only 2 1/2). The NHS had us on a waiting list, said we were a 'priority' but we are still waiting....

The private therapist has made a huge, huge difference. He is a different child. He is in reception and I am friendly with a lady who volunteers there (she is a retired primary teacher). She told me recently that it was money well spent, that he is very, very happy in school, is progressing and achieving and is no longer the worst speaker in the class (hurrah!!!).

I know it doesn't help with the DLA but just wanted you to know that things can and do improve and that swallowing the cost of private therapy is well and truly worth it.

samantham06

He already has a private speech therapist as we got funding for 6 months from a local charity, as he has been on the nhs waiting list for over 2 years and has only just been seen! And even now hes "in the system..." hes lucky if he gets seen once every 3 weeks for 45 minutes. Terrible.
The private speech therapy funding is up at the end of April, hence why I am applying for DLA. The private therapist is outstanding! She has done more with my son than the whole 2 years hes been under NHS care! So i really dont want to stop!

Thankyou for telling me your stories its really postive to think that he may get alot better. I really worry as I dont want him to be labelled and then lack confidence.. ect ect.

samantham06

I'm going to send you a PM with a bit more information about my daughter's claim and the info that I found. She has an entirely different condition but the info I got hold of gave lots of good ideas.[/QUOTE]

Just to say thanks very much for taking the time to send me a PM, I havnt had a chance to read it yet (as at work..naughty being on here!) But will do when I get home.

badlespoon

Hi there Sam, I am just wondering how you got on with your claim. We are in a very similar situation to you and we are in the process of filling out the forms. My three year old son has a severe speech disorder, but, they are unwilling to diagnose any further ie verbal dyspraxia etc at the moment, because he has too little speech for them to assess. They have said they are 'banging their heads against a brick wall' in the 1:1 sessions at the momentas he is so unwilling to cooperate. He gets very aggressive and will hit out at people when he is not understood. He needs watching all the time so that we can interpret for him otherwise he will throw things, hit people, up turn tables etc.

He also has quite severe eczema which requires quite a lot of attention.

Just wondered if there was any advice out there to help with the form and whether you were successful with your claim.

Many thanks and sorry to go on.