DLA claim first-timer/ Aspergers

Maybeanotherday

Hello just wondering if anyone can help?Long story sorry!

Prinzessilein

Hi! First of all, a big hug for you! (((skellett)))!!! |It's not easy coping with an Aspie - I know because I'm Aspie and have the world's most amazing mum!

The actual diagnosis will not effect the DLA which is given on the grounds of need not the diagnosis.

I would be wary of allowing the school to abandon the IEP at this early stage. (I speak from experience....in the days that I worked I was a Special Needs Coordinator for a time and set up and implemented IEPs).

I get DLA at the lower rate for both components. My first application was refused. If thism happens you need to ask for a statement of reasons for the refusal. (I think that's what it is callled) - mine read as if it was written about someone else! Don't panic if this happens. If you are refused you can get help with an appeal from somewhere like DIAL or the CAB. But try and be patient at the moment - you might find that the application goes through ands you get the award you deserve.

Does your daughter have a social worker? My specialist arranged for me to be given one. He also helped to give me a list of local carers organizations. Whilst looking for help for your daughter, don't forget that you need help too! A carer's group will help to let you know you're not alone, and you csan share coping strategies. If your sleep doesn't improve, you may need to see your GP for yourself.

Good luck to you and your daughter.

stassy23

hi my son had got global development delay behind by 18 months, speech and language disorder, sensory processing disorder and waiting on diagnosis of autism i applied and got refused so i appealed and asked them to look at the decision again and i was awarded middle rate care in the end if they do refuse keep fighting good luck its so difficult isnt it? how did you go private? i was thinkin about this for my son but dont know the costs or anything

YORKSHIRELASS

Hi, my son has a chronic illness and has been really poorly for the last 18 months. We got our first DLA claim accepted straight away, its a myth that all claims are refused first time and you have to appeal.

As for school, we battle constantly to get them to recognise my sons health problems, even with medical letters. Its not easy so good luck and I hope the DLA is accepted, the waiting is horrible.

gingerbread45

In all honesty yes it could affect your claim. DLA will contact the school (and her paediatrician/community paediatrician) and will expect to hear information from them that backs up your claim, if school are not seeing a disability and their account doesn't tally with yours then the DLA could very well not be awarded. With autism and learning disability its expected - and rightly so, to be seen in all circumstances, i.e in school, at home, while out and about. It doesnt just switch itself off. Were school involved in any of the private diagnosis for your daughter? They would be involved with an NHS diagnosis. I am not by any means knocking people getting a private diagnosis, but it can prove difficult to obtain a statement without an NHS one. I hope you get the result you want, I know it can be so frustrating! Can I ask why you went privately?

karmacookie

gingerbread45 wrote: »

With autism and learning disability its expected - and rightly so, to be seen in all circumstances, i.e in school, at home, while out and about. It doesnt just switch itself off.

I disagree with this. quite often the first sign that there are problems at school is when the child's behaviour disintegrates as soon as they get home to their place where they feel safe.

munchings-n-crunchings

With a DLA claim for a child, the school is one of the first places the DWP will contact for evidence regarding your childs needs.
It is not uncommon for a school to play down the needs of a child, and this will always be a hinderance.

Remember that DLA is not awarded on the basis of a diagnosis, but on the care your child needs, over and above a non disabled child of the same age.

Schools can be wary of 'private diagnosis' particularly of AS and Dyslexia, due to the fact you are paying for a *service*, many parents do not want to came away from a consultation the a report that says there's nothing wrong.
All children with Asperger's syndrome will have some form of dyspraxia elements to their condition. Only if it's over and above the normal expectation will it be given it's own separate diagnosis.

I have both a son and daughter both th Asperger's. My daughter has the additional diagnosis of DCD-Developmental Coordination Disorder-the new name for Dyspraxia, also intollerant of all diary, soya derived products.

Thre are 2 different forms of Melatonin, and it may be the other type will work better. My daughter has the non timed release version, which gives a big hit to get her off to sleep, rather than the long slow release.

The DLA decision will not necessarily be turned down on the first application, it is often due to the quality of the information included on the application for. It's not often what you put, but how you put it, and the terms you use.
If it is turned down, get help from Welfare Rights, part of your county council, as they are the experts in these type of applications.

Regards
Munchie

[Deleted User]

I would suggest getting a referral to your local child and family health clinic.., through your GP. Ask for a diagnosis assessment. I'm afraid there are some helpful Ed. Psychologists and some not so good.., and diagnosis for any child who may have aspergers can be difficult because of the sheer range of symptoms u can see. Obviously your Ed. Psych was looking for a particular thing., doesn't mean your daughter doesn't have aspergers, just that your Ed. Psych wasn't as flexible as she needed to be. Get a referral from your GP to see a specialist consultant or your local child and family health clinic as said. This will help u access services (the clinic will often refer u once u are in there) as has been pointed out, private assessments can be disregarded in Public Services.

I went thru a similiar process to yourself (incl the sleeplessness) and my son's school wrote a report to DLA saying my son had no extra needs (in spite of the fact that they were giving him a reader/scribe during exams and I seemed to need to attend weekly meetings to discuss the latest 'behavioural problem') - I was regarded as a bit of an over reactive mum throughout much of his early schooling. This led to my first DLA application being turned down, but I asked for a statement of reasons from DLA, rephrased my original remarks to point out how Jamie's care needs differed to those of a 'normal' 10 year old, suggested that it would be more useful to ask for reports from the experts.., not the school, and the appeal was granted. We were awarded middle rate care and lower rate mobility.

I used to see the worst of the behaviour at home, the school saw some signs of it.., but it was with me mostly. He'd get so stressed out by his school day, he'd come home and go into 'meltdown' as soon as he came through the door. He'd get teased a lot, and not all teachers have good reactions with kids with aspergers, even with a diagnosis. This has reduced dramatically in the last year or so but i think that's because up until recently the school were treating him a bit better. I did learn that all my son wanted was some acknowledgement of the pain he was going thru, hugs and to be treated like a worthwhile person.., when he was at his angriest.., the last thing that helped was telling him to calm down cause I couldn't understand what he was saying. The details of why he was upset weren't important (however much u as a parent wants to find out what is upsetting your son/daughter so u can fix it).., I learned to go for the pain and deal with that instead. Then once they are calm u can go into fixit mode.

I am afraid persistence is all when u have a child with aspergers. If u don't feel what people are saying is right, find another route. The diagnosis my local clinic gave in the end was that Jamie had a no. of symptoms which best fit the condition title of Aspergers. It was good enough to enable us to access some services for him and get the award of DLA.., which helped with the extra expenses of caring for a child who will change his mind on what he will eat from one day to the next (and taxi's cause he won't walk anywhere) lol. I continued to have problems with my son's schooling up until last year (he was 13 then) when they finally gave him limited one to one scribe help (he has dyspraxia and can't write legibly) after i contacted the Head of Ed. in my local civic centre.., but its falling apart again now.

Well done for what you are doing, you are doing great. There are answers out there.., just keep going. My son has gone from being constantly being put in remedial classes because he had problems writing to being regarded as the brightest boy in the school.., it is worth it.

blueeyez_2

hi skellett,


i know the forms can be a nightmare looking at them all the questions i had my sister help me found it to overwelming on my own but there are places that help.

claiming for dla for your undiagnoised daughter will not afect the claim as others have said its not about if they have been diagnoised with anything but how differently are your childs needs as aposed to a child the same age.

I put in a claim for my son now 13 who still hasent been diagnoised but has a list of names of things on his school statement but is mainly known as a very complex child and has complex needs i sent in a copy of the school statement underlinning things that the school,child psychologists, seno, physiotherapists, occupational therapists and the child development doctor.

The school he was in at the time was great they where surportive and filled in part of the form as well which was a great help and went though on the first claim.

goes to show dont need to have a diagnoised but it still makes me worry he aint diagnoised at the moment he's in the school system am worryed when he gets older and still the same but older dealing with normal day life and there's me still having to say he has complex needs .

good luck too you take care x

munchings-n-crunchings

With my children, I was advised that the indicator 'school action plus' is used when there are outside agencies involved with a child, such as CAMHS or Education Psychology. If there are none of these, this could be the cause of the change.

My recommendation would be to keep a behaviour diary, for both school and home issues. I found this was really important in being able to but dates and times to events, and frequency that things happen. It will be useful for your GP and consultant to see this when you have been doing it for several weeks. Include a food diary, as some food groups can cause or exacerbate behaviour problems, and you can relate back.

In dealing with school issues, try and keep them on side. It's far better for them to see that you are working with them, as opposed to confrontation. Sometimes the softly, softly works best. I went for the rocking the boat approach, knowing full well the consequence. The boat rocked, and I jumped ship and changed my daughter to an independent school, but you could soon run out of options.

Try getting some advice from an organisation like The parent Partnership.
www.parentpartnership.org.uk
The are a great source of information for parents of children with disabilities.

Regards

Munchie

gingerbread45

karmacookie wrote: »

I disagree with this. quite often the first sign that there are problems at school is when the child's behaviour disintegrates as soon as they get home to their place where they feel safe.

Are you saying that children with autism can just switch it off? It has certainly not been my experience with my child and autism. And I have yet to see a child be diagnosed where the same symptoms and difficulties have not been seen within school.