DLA kept at same rate. How do I appeal?

[staryeyed]

After about 9 weeks looking at our request for DLA to be raised they have kept the level the same. Considering that Ds needs care at night time now- his sleep has got a lot worse and he has fallen much further behind his peers in his skills and abilities, as far as I can see we fit the criteria for higher rate care. We included all the reports from the professionals dealing with Ds but they say they are keeping the rate at the same level. They gave no reason on the letter either it just said they had considered all the information. Do I need fresh information to appeal or do I just ask them to reconsider the information?

Hi, If you have a doctor or Health Visitor who can support you claim that DS needs care during the night then add it.

Obviously I don't know your circumstances but my DS has Cerebral Palsy and the only gave him medium rate, he is now 2 yrs old and cannot sit/crawl/walk/talk/eat solids/ ... so I went into one about him not being able to sleep in a cot because he gets his legs stuck then panics and hurts himself so he has to sleep in a bed which is not as safe so he needs to be checked on.

Then there is the chocking on his own saliva (pooling secretions they call it) which happens a lot at night

I have a friend who was given full DLA (valid until she is 19 yrs old) for her daughter who WAS on oxygen for 4 weeks after leaving hospital, now at the age of 2 yrs there is nothing wrong with her and she is going to apply for a blue badge because she has the full DLA entitlement ... I don't suppose it has anything to do with the fact that she and her mum both work for the DWP !!!!

My point is that you have to FIGHT for what is rightfully due to you unless you know the system! ... don't stop fighting

& Good luck

Thank you. My DS is 3.3 and has Autism. We had plenty of supporting statements from Ed psychologist,portage worker, teaching adviser/speech and language and occupational therapist and that included his sleep trouble/odd wake/sleep routine and the fact that he must be supervised when he is awake.

I have phoned the local disability rights office to help.

I really don't know how some of you cope; my Ds is only 3 and we are just beginning this journey yet we have to appeal for his DLA, he wasn't given a specialist nursery place- which we have to appeal, he is receiving the shoddiest service for preschool learning. I feel like Im fighting everyone.

You could try to emphasise the fact that if he wakes he can hurt himself ... ie falls out of bed in a tantrum, kicks the door or bangs his head on it if you shut it, so you have to use a stair gate which he also kicks ... as I said obviously I don't know your circumstances ... but I think it is quite common for autistic children to sleep very little, it must be a terrible strain for you, and like the rest of us I suppose you just take it one day at a time

I do get full DLA for DS now but only because I ranted at them and made so much fuss that they contacted the Consultant Paediatrician who supported my statement.

The criteria for full DLA is pathetic and a disgrace in our country, and I hope somone on here can offer you some good advice.... just don't give up .... it's what they want you to do.

Raine

Hi staryeyed.

We get High Rate for DS who has AS, attention difficulties and limited awareness of danger, we like you sent in everything we had, hae you done a full 24 hour diary because that may help your case as well, include everything he does, slightest thing like with DS, he gets up in the night and wanders around, he is still asleep but ive caught him many times stood at the top of the stairs, he could have fell down if i hadnt have got to him, he climbs the bannisters and tries to jump off them, he runs onto the road,he has to be supervised playing with other children as he is highly niave and a target for bullying, meal times take longer as he has a strict self imposed timetable so i have to go through menus with him every morning,getting him to have a bath is a nightmare as he hates water, he needs someone hanging around when he,s in the bath as he likes to tip the water out,he wees all over the bathroom and thinks its funny, he still soils his pants every now and then and he,s 12 this year.

HTH

Hi, apperently this is the criteria for Full DLA ....

Night time rules
You must regularly need attention twice or more, or for 20 minutes or more, during the night. For example you may have to get up a few times every night to use the toilet and need someone to help you to get there safely.

You can also qualify, if you regularly need someone to be awake to watch over you to avoid you getting into danger, either for about 20 minutes or more, or at least three times.

I have contacted disability rights centre who have told me to get a report from the doctor as medical professionals carry more weight than educational professionals. However we have just moved out of the doctors catchment area and we haven't even seen him about Ds's sleep issues. He did write a report for the last DLA application but I'm not sure he will this time. Even if he does I dont think I can appeal within the 4 weeks limit. Should I just accept the middle rate care?

Ds has turned into a very bad sleeper. He either up until early hours of the morning unable to settle or he wakes up and stupid o'clock in the morning. He also sometimes has night terrors. He will get up and run around/climb/ out things in his mouth take his nappy off and wee/ or worse everywhere so he definitely needs supervision. Dp and I are exhausted.

bump

Hi - my ds sounds just the same as yours in terms of night time care. I get full DLA. For the application form, I made a note of how many times a night, and for how many minutes, he gets up and added it all up. I also wrote loads about how he is vulnerable when outside.

The horrible thing about filling in the DLA form is you have to focus on what your dc can't do, and it becomes a bit depressing.

Good luck, and keep trying.

Is it possible to continue getting the same rate of DLA for now and reapplying. Appealing now is going to be v. difficult- moved from old doctor and haven't seen paediatrician in ages.SO can I not appeal and just wait and reapply later?