Turned down for DLA - what now?

[smugtandemfeeder]

OK so DLA have turned us down. We had contact-a-family help us fill in the form, plus we sent of the paed referral letter, plus a twenty page additional info document written by me.

DLA say they have had a phone call as extra evidence and 'other information'. I have asked for details/copies of this information but this will take two weeks.

The only information I know they requested was from the crap preschool. Perhaps the social worker called them.

Would they really take preschool evidence over paed referral?

What do I do now? Ask them to reconsider, appeal or give up?

DS is 3, is being assessed for ASD, however he hides his behaviour well in many circumstances, eg preschool he just seems a bit anxious at the moment, assessments he just seems a bit anxious. Is it possible to get DLA when they hide their symptoms or do I need to wait for firmer diagnosis. DS has a working diagnosis of anxiety and wakes up 4 times a night screaming, plus gets up at 4 am, is not toilet trained, smears poo on the walls, has severe tantrums all day at home. However I dont have a lot of evidence of this. I have videoed lots of it but again this has been ignored so far by the people they got extra reports from.

Thicker skin growing as we speak. Why does everyone seem to think im lying!!??

[Claw3]

DLA is not based on a diagnosis, its based on needs, so a referral letter isnt evidence of a need.

Pre-school would have been asked to answer questions based on their opinion or knowledge of your ds. Questions about what his needs are above and beyond another child of 3.

[smugtandemfeeder]

DS has only spent 4 hours in total at the preschool, only 1 of those was without me. He was never enrolled as a member of the preschool.

Why did I ever go there!!?

So if DS has problems sleeping, how do I evidence that? He doesnt sleep at preschool. We had CAMHS for a year for sleep problems but CAMHS psychologist isnt willing to discuss the fact DS doesnt sleep, she signed us off as normal despite DS still waking throught the night with nightmares.

[Claw3]

Just bumped an old thread about DLA for you.

[smugtandemfeeder]

The thing im finding hard is that in other settings DS is totally different. New preschool today, 3rd day on his own. Teacher said he was a little angel, he was so helpful, I wish they were all like him. How can I get evidence of DS's needs at home if he doesnt do it in assessments or at preschool.

The only thing the new preschool said was that he wouldnt let them change his nappy. He is holding poo in at the childminder and doing it when I pick him up and at new preschool wont let them change him.

[smugtandemfeeder]

Thanks Claw, will read other thread. I feel very moany at the moment. I dont mean to be. Im just a bit overwhelmed by it. Its all so confusing.

[Claw3]

It is overwhelming and confusing, trying to make sense of it all, it does become a bit clearer, the more needs are identified if thats any help.

Everyone has a moan on here from time to time, its ok. Dont think you have been moany, seems to me you are just trying to gain understanding, same as the rest of us, in the complex world of SN's.

I bumped the thread as i would have just been repeating the advice from that thread. Very good advice has been given on it and for a child of a similar age too

[smugtandemfeeder]

Ok so when I filled the form in I used the cerebra guide and explained in each question why DSs needs are greater than for another three year old. I also used contact a family to help fill in the form so that I knew it said things in the right way.

At home DS needs help 24 hours a day, way in excess of a NT 3 year old.

It takes HUGE amount of effort to get him dressed and into the car, he screams all the way to preschool and childminder about not wanting to go. Yet the second we close the door behind him he changes into a different person.

I have provided all the detailed DLA info in the correct format but it sounds like the other people the spoke to did not express the same opinion as me about DSs needs.

[smugtandemfeeder]

If DS is so damn happy at preschool I feel like sending him there every day. I spend hours and hours just trying to make DS happy. He says he doesnt want to go to preschool. I dont need to send him to preschool, I am at home. It makes me look like a crazy fool!!!

[Claw3]

3 years old is a difficult age, for example "wakes up 4 times a night screaming" DLA will say lots of children of 3 wake up 4 times a night screaming.

You have to show a)why he does this ie relating to a disability. b) to get him back to sleep he needs a lot more help than another child of 3 and explain what help he needs that is more than another child would need. For example you have to do certain routines that another 3 year old would not require.

If you feel you have done this, appeal.

[Lougle]

Ok, so I think we need to start at the beginning with this one.

1)DLA, when applied to children (the rules and criteria are different for adults), is awarded when the claimant's representative (you) demonstrates that their care needs are "substantially more than an average child of their age requires".

I have italicised two words for a very good reason, as they are words that need to be defined:

Substantially means that the care needs must be clearly over and above what could be deemed 'reasonable'.

'Average' is taken to mean 'typical', neither particularly able nor particularly immature.

2) In terms of DLA awards, the care component tends to be awarded as follows:

Low rate care - an hour or more of care over and above that of an average child would need.

Middle rate care - frequent attention through the day, and a little at night; or little attention during the day and some attention at night; or frequent attention through the day, but no attention at night.

High rate care - frequent attention through the day, and attention at least 3 times each night for 20 minutes or more, or one longer period of time. Early hours/morning waking also counts. Night time counts as the time a family would usually settle for bed at night. In absence of other evidence, the hours of 11pm-7am are used.

[Lougle]

3. The form is set out to allow you to consider all aspects of your child's life. But the boxes are tiny. Unless your child is clearly severely disabled (ie. requires full assistance and is non verbal at 10 years old), IMO, it is very difficult to justify a DLA claim in the space you have. Some do, but they usually have extensive involvement of services which in themselves demonstrate the need.
   
   You DO NOT have to stick to the boxes. If you want to write on A4 paper and write 'see page 4', do so. Make sure that every piece of paper has your child's name, d.o.b., NI No., etc.
   
   
4. I recommend the Cerebra guide to claiming DLA
   
   
5. Cerebra are fantastic in explaining, but the best way of writing your answers is to say:
   
   -What does your child find difficult in this area?
   -What help do you need to give him because of his disability?
   -How is that different to an average child of his/her age?
   -What would happen if your child didn't get that help?
   
   
6. Do give examples if they spring to mind.
   
   
7. Don't sugarcoat the truth, tell it how it really is. Don't pick his or her best day, give a typical day. I personally don't believe in the 'pick the worst day'. If something happens once in a blue moon, it's unfair to claim it happens every day. If there is a fluctuation, explain it. How I do it is to say:
   
   -On a 'good' day DD does xyz
   -On an average day, DD does abc
   -On a less good day, DD does def
   -On the worst days, DD does ghi
   
   I then go on to detail how often roughly, I expect her to have a good day (not very) and how often a worst day (quite a few!).
   
   It is wordy, it is soul destroying, but I see it that if I was reading that, I would think the person was being as accurate as they could be, not trying to paint a sob story.
   
   OF COURSE, if your child is always really extreme in an area, you must make that clear!!!!

[Lougle]

Ok, so that done, let's move on to a 3 year old child, who you suspect has an ASD.

It is possible to get an award of DLA for a child who is not in 'the system', and is not diagnosed.

However there are a few things that ring alarm bells for me:

a) You say that CAMHS have declined to contribute, and you felt that they attributed your parenting to the issues your son has.

Do you have letters from when they were seeing you?

b) You have a working diagnosis of 'anxiety'. This wouldn't in itself be seen as something that DLA covers, unless you could show that your child's anxiety is affecting him to such an extent that he is 'disabled' by it.

c) You say that pre-school give 1:1. Are they willing to submit a report?

TBH, right now, I wouldn't hold my breath for a successful claim. The fact that core assessment suggests your DS is a fairly typical 3 year old, isn't going to help you. The fact that pre-school say he is fine, isn't going to help. The fact that CAMHS won't contribute to anything is very telling of what they think (which is what you have told us that they think).

Perhaps if you were able to give us some idea of where your DS is at in terms of ASD signs and symptoms, apart from tantrums and poo smearing, we could help pick out what seems important to clarify?

For example, all 3 year olds have tantrums. But the detail of them, the duration, what breaks them, how the child is afterwards, is what is very useful to define 'terrible threes' (they do lie about the terrible twos you know ) from 'SN'.

[Claw3]

Lougle is a genius, i want a Lougle installed on my laptop, so i access all her knowledge whenever i need it!

Ds is seen at CAMHS, has been for over a year now, he has a care plan which states exactly what difficulties he is receiving help for.

For example

Poor sleep pattern
Poor eating
Anxiety
Poor peer interaction
etc, etc.

They then go on to say what his therapy includes. Did you not get something similar?

[smugtandemfeeder]

Ok, here is an example of what I wrote for the help at night time thing. Its probably not perfect but its what I wrote and how I structured each answer. Contact a family wrote a summary for each question. They said they expected us to get middle rate for care.

....................................................................................................

DS needs help to stay asleep as without an adult sleeping with him he will not sleep. Even with an adult sleeping next to him, DS wakes up frequently throughout the night with nightmares and on a bad day night terrors. DS will wake very early in the morning sometimes at 4am and will want to get up for the day. DS needs constant supervision and as such an adult has to get up with him. For example if we tried to ignore the fact DS is awake he has urinated and defecated on the carpet, opened windows, woken baby siblings by climbing into their cot, hurt baby siblings etc. DS falls out of his bed and moves a lot when he is in bed so we have had to get a double bed for him and monitor him to make sure he does not hurt himself falling out. DS needs to be monitored for signs of anaphylaxis to make sure that he does not get severely ill.

During the night DS needs reassurance to go back to sleep when he wakes up. He needs comfort and reassurance when he has nightmares and night terrors. DS needs an adult to sleep next to him to give him reassurance. DS needs an adult to settle him when he falls out of bed. DS needs help to check for signs of anaphylaxis. DS needs close monitoring and supervision when he gets up very early in the morning to stop him hurting himself, hurting others or damaging the house.

Without this help DS would not be able to sleep. He would be emotionally distressed and would hurt himself or others or damage property.

Other three year olds may need an adult to help them go back to sleep during the night occasionally but do not require constant supervision at night. They would not need someone to settle them back to sleep as many times as DS does and it would not take as long. Other children the same age as DS do not have night terrors. Other children the same age as DS without his disability do not require constant supervision to ensure that they do not become severely ill.

[Claw3]

Another thing you say in assessments he just seems a bit anxious.

What assessments has he had? Do you have anything in writing?

[smugtandemfeeder]

We have letters from CAMHS which state they are helping us with DSs sleep problems. However they told us the situation was now normal and signed us off in october last year. Since then we went to the GP with our concerns about ASD and they referred us to the paed who was sufficiently concerned to refer us on to the nursery assessment centre.

1:1 in preschool I have a letter from Area SENCo to confirm that. Thats fairly recent so I can send that off as additional evidence.

Thank you all for your help.

[Claw3]

anaphylaxis, do you have a dx of this? something in writing? What is he allergic to?

[smugtandemfeeder]

RE assessments, we have a pead letter. She assessed him for 90 minutes. DS was being very autistic, refusing to talk, playing with car on floor watching wheels, walking on toes, making funny noises, screaming. Paed wanted to diagnose him there and then but she wasnt very experienced and her senior colleague overruled her and said he needed to go for assessment. Letter states that paed observed behaviour and that DS has complex needs. Also lists all the behaviuors I said I observe at home. I sent this off as evidence.

[Claw3]

Did you send the letter from CAMHS?

[smugtandemfeeder]

Dont know what DS is allergic to. He had AP shock a year ago. He has had tests to rule out food allergies. He has minor reactions every now and again but as we dont know what caused it we just have to keep an eye on him for symtoms and keep epi pens and piriton to hand. The big AP shock was in the middle of the night and was severe and he had needed an ambulance and he was rushed to the resuccitation (SP!) room at A&E after having adrenaline.

Dont have it in writing. Doctors should have confirmed this?

[smugtandemfeeder]

Didnt send letters from CAMHS. They just say how well he is doing.

[Lougle]

Mmmm...I see some areas where you left 'get out of jail free cards' tbh.

So, first thing that jumps out at me from that extract:

-You don't tell the DM (Decision Maker) why he needs help.
-You tell them that he needs the help, but you don't describe what steps you have to take to settle him in the evening.
-When he wakes at 4 am, you don't say what you try to do to resettle him, how long it takes, and whether it is successful.

I will give you my extract from DD1's DLA claim this time last year, it isn't perfect, but she gets HRC, so it's an example of a detailed description.

[Lougle]

Part 23 ? When the child is in bed at night
Does the child need help when they are in bed at night? Yes
Tell us about any help the child needs when they are in bed at night
DD1 can wake up to twice or three times in the night in the early hours, for varying reasons.

DD1 has leg pains that seem to occur mainly at night. She has attended A&E on around 5 occasions, although the leg pains occur many more times than that. The general thought is that these are likely to be Transient Synovitus of the hip, presenting as knee pain, following a cold, although Dr x suspects strongly that there is also a behavioural element to it. There is no pattern to the leg pain, so it can happen once in one month, or several times per week in another.

When her legs hurt, she calls out crying, and is rolling around on the bed clutching her knee. She gets very distressed, and becomes quite hysterical. We have to rub and massage her leg, and give her paracetamol. To calm her down, we have to cradle her tightly, and sing ?rock a bye baby?. Once she is calm enough to lie down, we have to tell her a ?special story? about her leg pain, which involves telling a story about how she woke up, and her leg was hurting, which made her very, very sad. Then Mummy came in and rubbed it better and gave her medicine. Then it was time to sleep again. This story calms her.

We then have to go through her bedtime routine from scratch, so making sure that her weighted blanket is in place, that her ceiling fan is on, that she has her bear comforter, that her toy cat is behind her head and her musical star is on. If we do not follow this routine, it is much more likely that she will stay awake. We sometimes have to give her a repeat dose of melatonin at this time, but it is rarely as effective during the night as it is before bedtime. We then need to stay awake to listen for her, to make sure she has returned to sleep.

We cannot go to sleep until we are sure that DD1 has settled, because she climbs on her bedroom furniture and is at risk of injury. She will also wake her sister, and stop her from returning to sleep. When her leg hurts, we have to be up for at least 45 minutes for the initial episode, then dependant on whether DD1 settles successfully, we may be going backwards and forwards between our room and hers for a further 20 minutes.

DD1 is totally incontinent of urine at night. She has no control whatsoever over her bladder at night, and is showing no signs of becoming dry at night. She wears a pull-up to bed, but this frequently leaks. We have to change her bedding in the night up to 3 or 4 nights per week. When we do so, we have to strip her bedding, change her pull-up, replace her sheet, check her weighted blanket to make sure it isn?t wet, and then follow her bedtime routine as outlined above. Again, I have to tell her a ?special story? about how her pull-up leaked, and Mummy came and changed her sheet, and then we got a new pull-up on, and then it was time for sleep, to calm her. Her reaction to wetting the bed is variable. Most times she will cry and scream that her bed is wet, and so we will know. However, on two occasions recently, we have heard the click of the light switch, and found DD1 naked, sat on a small chair in her room, huddled to try and warm up. For some reason she had not alerted us to her state. This is obviously worrying, and we now check her in the night.

When DD1 has wet her bed, we spend around 10 minutes changing her bed and her pull-up, a further 10 minutes doing her bedtime routine and telling her ?special story? then a further 10-15 minutes listening out for her to make sure she has settled. If she settles, we can then sleep. If not, we will spend a further 20 minutes or so going backwards and forwards to her room. So at these times we are awake for 30-55 minutes. Again, we are unable to simply go to sleep if we are not absolutely sure she is asleep, because she is a danger to herself and will disrupt her sister, and indeed the whole household. We also have to be mindful of the fact that she managed to climb over the stair gate on the porch, and the only thing that stops her from wandering is the stair gate on her bedroom door. If she manages to climb over that, she will be in real danger, especially as her balance and co-ordination are so poor at the best of times, let alone when tired and sleepy. She would also have ready access to the bathroom, which is a particular obsession and very dangerous for her. So we have to be very cautious and not take for granted the protection the stair gate on her bedroom door gives.

DD1 wakes every day between 5 am and 5.30 am, and will not then return to sleep, even if we follow her bedtime routine, regardless of what her sleep disturbances have been in the earlier part of the night. We would not by choice get up before 7am, and at the weekend perhaps even 8am. However, if DD1 is up we have no choice but to get up, because she is not able to be left unattended at any time. Her need for continuous supervision at all times is well documented. She is a danger to herself with her climbing, and she is loud and wakes the entire household.

A typical 4½ does not wake several nights per week, and does not wake so very early in the morning, especially if they have woken in the night. A typical 4½ year old would be able to play quietly or watch television. If they wake at night, a typical 4½ year old would be able to be reassured briefly and return to sleep. They would not need constant supervision and extensive routines to return to sleep, and would not need watching over to keep them safe. They do not need Melatonin to get to sleep or return to sleep.

[Claw3]

Smug, your GP should be able to confirm, ask them to write a letter.