DLA - For ASD 3 year old.

TiredMum_3

Hi.

My son has had marked developmental delay, since he was born, I didnt know this was possible but my son was a full term baby who deteriorated very quickly after birth, was transfered to nicu at 8 hrs and spent a week there, It was explainined to me that he was born with a developmental delay and while i was 39 weeks pregnant he was not that developed which is why he needed help with feeding and temprature control,
he has developed very slowly since birth and at 3 years old has the mental ability of a 6-12 month old, but the physical devlopment of a 18 month old.
his consulatant made a diagnosis of asd at the severe end of the scale in april,
He is completly non verbal - is unable to make a choice or even follow a simple command, Still completly in nappies and unable to walk outdoors because he is not mentally developed enough, also he falls a lot and has some severe behavoural issues.
He goes to the assesment nursery at the local special school as they have decided he needs further assesment for a statement but the mainstream nursery he attended couldnt cope with his extra needs at their staffing levels.
They provide home to school transport for him as getting him oput the house can be such a challenge.
Ive been told by a friend that i should apply for dla, This friend gets it for herself because of a medical condtion but she seems adamant ill get it.
Ive got the forms but to be honest is it really worth applying, the forms are - well depressing to say the least and i dont kno how much money we could get but it wont be that much anyway i shouldnt think.
Anyone have experiance with getting dla for autism? what rate to do you get and how long did it take for the claim to be awarded (or refused)

Thank you
Rachael

kingfisherblue

I know of several parents who receive DLA for their autistic children, but it isn't the diagnosis that is important, it is the amount of care and mobility needs that your child has. The forms are depressing, but if you decde to go ahead and apply (and there is no reason why you shouldn't), I would recommend that you get a welfare officer to help you. Your local council or Carer's Centre will be able to put you in touch.

Awards are given for varying lengths of time, sometimes only a year. You can always reapply at the end of the award, though. My son was born with Down's syndrome and several serious medical conditions. His first award was for a year,his second for three years and his third award four years. His fourth award is indefinite, which means that I could receive renewal forms at any time, but I might not need to renew at all until he is sixteen (he has had this award since he was eight and he is now twelve).

You might want to seek support from your Carer's Centre if there is one local to you - ours is brilliant. Regarding your son's statement, Parent Partnership are a great help if you need it. Your local council can give you the contact details. You might also want to look on the NAS website for further information and support.

Good luck x

sox8369

To Tiredmum and Kingfisherblue - just wanted to send best wishes - being the parent of a poorly child is not easy sometimes (both mine have a nasty condition) over the last 18 years i have gone through every emotion - guilt, sadness, anger, hope, dispair and fear - but also pride that my children mange to cope and have the best quality of life i can give them - and sometimes its just nice to know that there are other people out there that understand. x

kingfisherblue

What a lovely post Sox. Thank you for your kind words. My son still has major disabilities and will never live independently, but I am proud of his achievements, however small they might appear to other people.

SingleSue

My youngest son has complex autism and receives High rate care and low rate mobility DLA although he also has severe asthma, multiple food allergies, hypermobility and bowel disorder with an emotional and bone age of a child many years younger...he has an award until he is 16 which was given when he was 8.

My middle son has Aspergers, mild brain damage, extremely poor short term memory, a learning disability in verbal understanding and partial deafness and receives no DLA although he did receive DLA in the past. He has no sense of danger and cannot be allowed to go outside on his own as he trusts everyone and just plain forgets to check the road before crossing! He is also now suspected of also having the same syndrome as my eldest (see my sig) as his joints have just started to dislocate just like his brothers.

The advice to have someone to help you fill in the form is a good one, the forms are very depressing and we don't always like to think of the things the child cannot do and would rather downplay their problems. That said, sometimes we are sometimes so over wrought at it all, that we can also overplay their problems...which is not a good thing either.

The best thing is NOT to fill it in on the basis of a very bad day only but to give a true picture of the good and the bad.

Mandymull

edited sorry

Indie_Kid

Lower mobility (which is given for supervision outside) doesn't apply until the child is 5.

When you do the form, the care has to be reasonable. He needs it - but doesn't need to get it. (ie, you would like to take him somewhere, but because of work, you can't)

Edit: have you got in touch with National Autistic Society (NAS) ?

DX2

http://www.cafamily.org.uk/pdfs/DLA_factsheet.pdf

Indie_Kid

http://www.nasbranch.org.uk/nas/jsp/polopoly.jsp?d=1561

tessie_bear

hi...i know the dla form is daunting to say the least but try and plough through it...the nas websight was very helpful when i filled it in.....good luck

kabie

Get a step by step guide from Cerebra. They take you through the form and make it seem much simpler. You will feel awful after completing the form : you have to list everything that's difficult / challenging for your child, that's depressing, there's no room for positivity on the form. When you're able to spend the extra money on things that improve your childs life you'll realise it was all worth it.

http://www.cerebra.org.uk/parent_support/DLA_guide

Keeping a daily diary is a really good idea : start now, put everything you do with / for your child down. That'll help when it comes to filling the form.
Remember you can add extra sheets of info. and treat the form as if the person reading it has no idea what you're talking about; as if they've never heard of autism and never even met a child before. (perhaps they haven't) I'm probably repeating what it says in the Cerebra guide : good luck.