DLA for child with PDA

TomsMom

Pathalogical Demand Avoidance syndrome, which is becoming recognised as part of the autism spectrum.

Does anyone have any experience of trying to get DLA for a child with PDA?

It has taken a long time for my grandson to be diagnosed with this and my DS and d-i-l were advised to claim DLA for the caring aspect (not mobility). He is 10 years old now and has dyslexia as well.

Among other things, he has challenging behaviour, sudden and excessive mood swings and can be violent but one of the major problems is that he soils himself, deliberately, and this can be many times a day. He refuses to clean himself so besides the extra washing of the clothes there is also the frequent cleaning up of my GS. My d-i-l has had support from the right quarters (support at school/referral to phsycholigist etc) who have given their evidence in support of her DLA claim. The claim has been refused.

Can anyone advise about appealing? Does anyone receive DLA for a child with PDA? Does anyone receive DLA for a child with a similar type of problem?

alwaysonthego_2

Go to the cab and see a welfare rights adviser who will help you appeal it, you have 28 days from the date on top of the letter to do it. Good luck!

TomsMom

alwaysonthego wrote: »

Go to the cab and see a welfare rights adviser who will help you appeal it, you have 28 days from the date on top of the letter to do it. Good luck!

My d-i-l originally went to the CAB to fill in the DLA form. Unfortunately she ended up with an old dear who didn't have much of a clue so she brought the form home to complete. OH and I checked over the form and made sure she'd filled in everything properly, but as we don't have any experience of this that was all the help we could offer.

It's taken weeks for the claim to be denied, presumably they wrote to the psychologist and possibly the school.

I suppose she could go back to the CAB and try to see someone else. We live in a rural area, and have to go to the next small town for the CAB and it takes a good while to get an appointment.

alwaysonthego_2

TomsMom wrote: »

My d-i-l originally went to the CAB to fill in the DLA form. Unfortunately she ended up with an old dear who didn't have much of a clue so she brought the form home to complete. OH and I checked over the form and made sure she'd filled in everything properly, but as we don't have any experience of this that was all the help we could offer.

It's taken weeks for the claim to be denied, presumably they wrote to the psychologist and possibly the school.

I suppose she could go back to the CAB and try to see someone else. We live in a rural area, and have to go to the next small town for the CAB and it takes a good while to get an appointment.

She needs to see a welfare rights adviser, not a general adviser.

clareyocs

TomsMom wrote: »

Pathalogical Demand Avoidance syndrome, which is becoming recognised as part of the autism spectrum.

Does anyone have any experience of trying to get DLA for a child with PDA?

It has taken a long time for my grandson to be diagnosed with this and my DS and d-i-l were advised to claim DLA for the caring aspect (not mobility). He is 10 years old now and has dyslexia as well.

Among other things, he has challenging behaviour, sudden and excessive mood swings and can be violent but one of the major problems is that he soils himself, deliberately, and this can be many times a day. He refuses to clean himself so besides the extra washing of the clothes there is also the frequent cleaning up of my GS. My d-i-l has had support from the right quarters (support at school/referral to phsycholigist etc) who have given their evidence in support of her DLA claim. The claim has been refused.

Can anyone advise about appealing? Does anyone receive DLA for a child with PDA? Does anyone receive DLA for a child with a similar type of problem?

PM sent to you x

TomsMom

alwaysonthego wrote: »

She needs to see a welfare rights adviser, not a general adviser.

OK, thanks AOTG. I'll pass that on to d-i-l and she can enquire and try to get an appointment with the right person.

munchings-n-crunchings

Hello TomsMom,

Phone your county council, and ask to speak to Welfare Rights.
They can help you with the appeal process.
You have 28 days to appeal, plus an extra 14 days if you follow the next step.

Phone the DWP and as for a Statement of Reasons, which will explain why the claim was turned down, the DWP has 2 weeks to send this to you. This statement should include who has been contacted regarding your claim.
If you didn't keep a copy of the forms, ask the DWP to send you a copy, and take these with to Welfare Rights.

The first step in the appeals process is a 'reconsideration' where a new decision maker will look at the claim.

Sometimes, another pair of eyes looking at the forms, can see where errors have been made, or things that could have been expressed differently.

Another option, is see of you have a branch of DIAL near you. They are a specialist disability advice service, who can also help you.
http://www.dialuk.info

Any supporting evidence, consultants letters, psychology reports, statement from senco will all help.
Also, find some information regarding PDA. Although on the autistic spectrum, it's one that crops up less often. Enclose that as well,

Good luck,

Munchie

TomsMom

Thank you Munchie. I'll pass that onto d-i-l.

lisamarie31

Dear Toms Mum,

My son does not have PDA but suffered a subdural haematomah at 6 mths old, as he got older he suffered emotional problems below his peer group, low self esteem, anxiety and behavioural issues. I could get no assistance until he had to have a diagnosis which was ADHD. He does not actually have ADHD but the symptoms are the nearest to it as a subdural haematomah could of damaged so much its hard to say.

What I am trying to say is I had to appeal and appeal to get help, I explained the situation to the school, his GP and all the doctors and support workers which knew I needed the extra help and financial support for my son.

It is hard to get the uncommon problems which are not text book approved but if you have enough bullets to fire at them and the specialist doctors he see's will provide a case senario which identies directly to a more common diagnosis then it would be easier for it to be passed. It is all in the wording as with my sons case they advised DWP of my sons problems and cross referenced them to ADHD/ADD and Autism. It was easier for the case worker to see that the straight forward diagnosis which already get a automatic tick are part of the problems therefore they can say yes.

This was exactly what happened to my sons case and in the end it got approved, a little around the houses but the financial support and access to the higher special needs and treatment he got has been fantastic.

He now attends a normal high school support with some 1 to 1, child physcologist, neurologist,SENCO whom all meet regularly to pro-actively support my son, its been hard work but so rewarding in the end..............you just have to push push push but its not just financial its the doors that it opens to get the help and medical expertise also.

Good luck and just dont give in X

TomsMom

Thanks Lisamarie. I'm glad you got the help for your son, such a shame it takes so much effort.

Apparently the psychologist's letter said he "thinks" he has PDA. My d-i-l is going to try and get in touch with the Welfare Rights Officer at the council and ask whether it's better to appeal now or wait until the psychologist has made his final diagnosis. They are awaiting the results of a brain scan he had a while ago, she was told she would get another appointment through but it has been so long that maybe she should chase this up.

I've passed on everyone's comments and it has given my d-i-l a lot more information so that she can, when it comes to appeal, provide better answers than she may have put originally. It's all so difficult when the way you word your answers can make such a difference to the outcome. Thank goodness there's people who can pass on information to help others out.

SuziQ

Just to say,it doesn't matter whether thet actually diagnose him or not. It is the extra care he needs that the award is made on-when my son was first awarded DLA several years ago no one had any idea what was wron with him but he was awarded high rate care low mobility. We had a gap when we didn't apply and then he wasawarded DLA hrc/lrm last year-he has now been diagnosed with autism. Tell them to persevere. Also I used the information on this site to help me fill out the form (I didn't have help) as the wording is really important


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