DLA for 6yr old on Autistic spectrum

SuziQ

Could I ask if anyone has any experience of filling the forms for this? My son was awarded DLA when much younger,form was filled out by someone from a local support group and we recieved the highest amount for a year. It then stopped suddenly and as I was in and out of hospital myself I just let it go. I have now been advised to reapply by his school as they are shocked I am not recieving anything,especially as we have to pay for our own SALT in this area.
I was supposed to be having an advisor from the same support group out today (have waited weeks-form due back by 27th!) to be told this morning she is sick and they have no one else available for several weeks as the 2 other volunteers who do this have children in hospital at the moment.
I am completely flummoxed by the questions-ie how many times does he need help,as I seem to be sorting out problems with him constantly at home and I know school can find him very dificult,although he doesn't have extra help at the moment aprt from his senco and another educational specialist who comes in,observes him and advises re programmes for him.
I don't want to just put 'constantly' as I know they won't accept that! If I can't get help I am going to have to stop his SALT as on income support it is such a struggle even without paying £30 an hour for that.
Any help and advice gratefully recieved!

Titch89

Have you tried the CAB? They helped me with my forms and I did get awarded DLA.

SuziQ

CAB referred me to the support group who now have no-one to help me. I have now downloaded the info from the Autistic assoc website and luckily I do have a diary to refer to,so am going to include as much descriptive evidence as I can and see how it goes. The form does look daunting though!

tilly's_mum

Hi

Cerebra produced a great guide to help fill in the DLA form - it can be downloaded or they will send you a paper copy.
http://www.cerebra.org.uk/parent_support/DLA_guide.htm

Don't forget to write about a bad day not a good day and photo copy it before sending it back in case you need to appeal and it also comes it handy for reapplying.

Don't forget to apply for carers allowance too.

Cheryl

PS - your local carers centre may be able to help you fill out the form.

SuziQ

Thanks Cheryl-have convinced myself he won't get it with me filling in the form!
Will have a look at Cerebra.

reeceem08

hi suzyq

i too have a six year old with asd and we get dla for him.
yes the forms are a bit daunting but you will find that you are repeating yourself most of the time when answering the questions.
u have to think about the bad days your child has and how they are different from that of a child the same age without asd
it is time consuming but i am sure you can do it1
put as much info as you can down the more the better and if you have any additional info ie statement of education if he has one then send a copy of that in the envelope with the forms .
i have had to complete the forms twice now for my son as they only award for approx 2 and a half years at a time for children then u apply again.

you can do it!

lil_me

Some find it helpful to keep a diary then go from that to filling in the form with the information gathered inc times, how often etc.

Be as honest as possible, never just focusing on a 'bad day' or a 'good day' as then reports from proffesionals will not support the application. Advising people to focus on bad days when filling a form out is advising them to commit fraud, that statement came from a DLA decision maker I met, the report should be based on life as it is, not just an off day. If you are awarded DLA based on a statement of just 'bad' days you are committing fraud. Just had a parent I have helped before contact me after she was extremely 'embarrassed' when it was pointed out by a DLA appeal section that she'd been dishonest on the form focussing on the bad days, she did so because someone else told her to.

Welfare Rights, Citizens Advice (call them back explaining support group can't help) and Carer's centres ( click on Find your Local Centre http://www.carers.org/ ) can usually offer assistance with for filling.

Also - ask at your Carer's centre about possible grant availability in your area to assist with SALT. I know exactly what you mean about the costs and instead of paying out all the time eventually found all the information I could, borrowed or bought every book and information pack I could find and worked with my son from home, started with a lot of pecs work and worked out way up from there, he made outstanding progress. He now never shuts up sometimes I wonder why I did it, must have been mad! Still working on the youngest but we'll get there.

nm8553

many of the issues you face relate to understanding and communication and there is nothing wrong with saying that these are constant.
For example I would expect that you will have to assist with toiletting - particularly at night. Many young people with ASD's have associated OCD behaviours which will also require regular assistance. For example I work with a child who has to have the correct levels of light and sound before he can get out of bed - it often leads to bed wetting.
Intolerance or sensitivity to light or noise need to be mentioned as they significantly effect behaviours and need regular care and support. Temper tantrums, behaviour more commonly associated with a developmental age younger than their physical age, frustration, ADHD (incl special dietary needs such as gluten-free etc).........in summary broaden your perspective and consider all of the issues. The more the better.

SuziQ

wow thank you for all your replies-I have recieved such a 'balance'-the SENCO at school HAD told me to answer as if it was the worst day,so I really appreciate the advice to be more balanced than that.

Thanks guys!

mummytofour

Just get evey bad thing he does and writ it down. Includ if he is awake at night, play eveything up to the max and beyond, its so easy to see the good in our kids that we forget that sometime we need to compare them to what normal ( whatever that is ) kids are like. You can fill it in online..

skipsmum

Make sure you bring every point back to the fact that other children of his age can do it, eg "A can not use the toilet himself as he cannot stand up afterwards. He needs an adult to lift him. Other children of his age can use the toilet unassisted." I realise this is based on a physical disabiltiy, you need to adapt it. Its tedious, but what they are looking for is a significant difference between what your child can achieve and what he is expected to be able to achieve at this age so you need to make the point every time. Good luck!