DLA Appeal help - for child

pregwithno4

Hi, A little about myself and my son, Im a 29 year old housewife and my son is a 6 year old little boy who suffers with Bilateral Perthes disease and uses a wheelchair whilst we are out and about.
He suffers with lots of pain during the night if he is mobile a lot during the day.

He was diagnosed in April 2010 and was awarded higher rate care and higher rate mobility for 2 years which is due to end on 31st May.
I did his renewal and he was awarded middle rate care but no mobility so I asked for the decision to be looked at again.

I have phoned the other day and been told that they have made a decision that he isnt entitled to anything as of 1st June and his claim will end.
I have requested a decision maker call me back and they said I will get a call within the next 5 working days but that was last friday and still nothing, what are my chances of anything changing ?
Is the decision maker able to change his decision upon speaking with me if he wishes or is that it ?

I know im able to appeal and it would go to a tribuneral but I have no idea what any of that involves or how long anything is going to take.
Does anyone have any advice on where I can get help and support as i seem to be alone here. Also I asked for the mobility part to be looked at again as I was fine with the middle rate care but thought surely he is entitled to some mobility due to him being a wheelchair user.

I have had my letter back to say they dont feel that he requires any extra care than a normal child of his age and filled in an appeal form to get the ball rolling. I added the following information.
I feel that he does require a lot more care than a typical 6 year old.

I feel that the DLA decision is wrong because you have said Michael does not require extra care. I am appealing the decision as I believe that he is entitled to highter rate care and lower rate mobility.
Michael is a 6 year old boy and needs to be accompanied outdoors at all times. Michael is unable to play outdoors with his friends and needs somebody in the garden with him to stop him hurting himself or putting himself in danger. He needs someone with him incase his legs give way and he is unable to get back up.
Michael needs to have access to his wheelchair at all times due to pain and discomfort and him not being able to walk very far at all when we are outdoors. Michael is also at risk of falling over and doing further damage due to weakness in his legs.
Michael is a danger to himself outdoors as he wheels himself into the road so he always needs somebody to have hold of him and his wheelchair.
Michael can walk around 50ft before he is complaining of leg pain but this can vary depending on how much he has been up during the night or how much painkiller he has had.
Michael takes ibruprofen and calpol at 8:15am ready for the school day and again at 3:45pm.
Michael is behind in his schoolwork due to poor concentration because of his pain in school. He requires an extra hour in the evening to help catch up.
Michael often comments that he hates his disease because of how limiting it is for him and he cannot join in with normal activities. Michael then acts out of anger and frustration to others, especially us as parents and his siblings. He ends up hitting his sisters.
Michael needs help getting dressed because he cannot stand on one leg or balance himself to get on his underwear and trousers. His legs give way causing him to fall into a heap.
Michael is unable to get in and out of the bath and needs constant supervision in the bath or shower to prevent him from slipping and further damaging his hips.
Michael suffers with a lot of pain and cramping during the night. This happens 5 out of 7 nights and is often worse on school nights. He has leg spasms and muscle cramping and take hours before he is able to settle down to sleep. Most nights this means that I am unable to go to bed when I need or want too or I am woken from sleep. During the night he is given calpol and ibruprofen to ease the pain.
Michael wets his bed 5-6 nights a week at night due to the muscle cramping in his legs as when the muscles relax and contract his bladder releases. Michael needs to be taken out of bed and bathed during the night and his bedding needs changing and then he needs settling back to sleep. This process usually takes 1-3 hours. Michael was completely dry day and night before the cramping started.
Michael can often wake 2 times during the night and because of the cramping pain he is unable to go back to sleep. We usually end up staying awake with him and place him in warm water in the bath tub to ease the pain or heat a hot water bottle. At these times (2-3 times a week) he needs someone awake with him to lie with him and soothe him. Michael needs a lot of encouragement in the morning and telling to get out of bed. He is very tired and has stiffness. This takes around 30 minutes.

pregwithno4

anybody ? no ?

tronlegacy

Try citizens advice or money matters if you have these near you.
My son was born with severe cerebral palsy and when we applied for dla we were refused and had to appeal.Thankfully we had a lady from money matters who dealt with it for us and also a strongly worded letter from sons doctor which seemed to do the trick and he was awarded high rate care and high rate mobility indefinately.
That was quite a few years ago now and i am dreading having to fight for it all over again when the new benefit change starts.:(

covlass

Contact your local carers center they are full of information and will put you in touch with someone who can help.

Peanuckle

don't forget that reports and information from professionals who deal with your son carry a lot more weight than anything a parent says. Not all parents are completely honest (I am NOT suggesting this is true of you) and therefore decision makers often look for impartial professional opinions

GlasweJen

I'm a former citizens advice advisor. I gave you pointers on your other thread.