DLA renewal, I'm stuck!

[keepingupwiththejoneses]

I have been writing down note on each question for ds3 dla renewal, I really want to get this right as the last one took, 16 months and an appeal to get, and that was only last year.
DS 4.7 has asd and sld and attends a sn school full time after a disaster in ms, where he lasted 1 term.

I am at the part about his mental health and how does it effect him, and I am stuck, what do I put down. He is extremely violent, egocentric and self directed. How do I put it into words?

Hi
I did dd's renewal at the end of last year, so I feel your pain!

I found this guide invaluable.

Good luck x

Well, to be blunt, being violent itself isn't going to qualify him for DLA - after all, does that mean that spoiled brats who fight should be given DLA? No.

Being egocentric, again, isn't something that would qualify him for DLA.

Being self-directed is sometimes a strength. Certainly not a reason to get DLA.

Now, what am I saying? I don't mean that your DS doesn't qualify for DLA. Not at all

But what I am saying is 'don't fall into the trap of describing 'qualities'. Describe 'care needs'. Because that is all that will qualify him for DLA.

So although, for you, the most impact comes from his violence, say, you need to step right back and make a list (either in your mind or on paper) of the following:

-What triggers violence in DS?
-What can I do to prevent it, if anything?
-How much warning do I get that he will be violent?
-What are the signs that he will be violent?
-What do I have to do to protect myself/siblings/him/bystanders?
-How often is he violent?
-What do I have to do to calm him down?
-How does he act when he is 'in the zone'?
-Can I talk to him or does he shutdown?

and so on.

The decision makers don't know your DS. They know nothing about him. So you can't assume any knowledge about ASD, SLD, etc.

Does he attend special school because of his behavioural reactions? They need to know that.

So what you do is create a 'picture' of care for your DS that is 'substantially more than a child their age without disability', because that is the criteria for DLA.

All 5 year olds have tantrums. Some 5 year olds get a bit agressive with it. But what you need to show is that your DS is far removed from a 'typical' 5 year old.

HTH

'Well, to be blunt, being violent itself isn't going to qualify him for DLA - after all, does that mean that spoiled brats who fight should be given DLA? No.

Not quite true Lougle: ds1 gets it in significant part becuase his violence means he needs 24/7 supervision- he has a letter from the paed stating that and it is a trigger phrase.

And if Ops son has that need for 24/7 it is *ver8 important she says that (as wellas all the other excellent advice you have given her)

Lougle's advice sounds spot on.

Sorry for the essay below, but as I got it with no expert advice at the first attempt perhaps my "method" may help others:-

I kept a 3 month daily care diary, where I just bullet pointed stuff each day. It helped me no end with the form as I stated clearly that DS's needs varied depending on his emotional state. i.e he as easier in school holidays. I did this because the last thing I wanted to be accused of was benefit fraud iykwim and the form is just so complex. I photocopied the diary and sent it in as evidence and asked them to refer to it, if they had any issues.

I used bullet points as I think it's easier for an assessor to flick thru and check against their own criteria rather than long winded essays. It was also less hassle for me to do at 2 am!

An exmaple entry might be
dd/mm/yy
DS had nightmare and woke up having wet himself at approx 12.30
Washed son, changed sheets, and put on laundry - 20 mins.
Calmed son down and sat by him so he could go back to sleep - 45 mins.
DS woke approx 2 am upset. Calm down time 20 mins.
DS woke 4.30 - calm down time 15 mins.

I made it very clear on the form I'd done an average to fill in the boxes and that they could refer to the diary for clarity.

I included EVERY relevant pro report from the last 6 months, and his proposed statement.

What I didn't do was ask for a school report as I didn't think they'd be sympathetic. I put the proposed statement in, in lieu of a school report.

Cost me a small fortune in photocopying BUT we were awarded at our first attempt! My reason for doing it this way was simply that I'm a bit dyslexic and that form is a total nightmare! I thought the diary would help compensate for my inabilty to understand the goddam form and show I was trying to be honest as my son's needs are variable.

Wow thank you for all your advice. Lougle I completely understand what you mean, individually those this are not criteria but together with his lack of speech, obsessions and sensory issues do fit the criteria.

I have requested a letter for his paed, she is fantastic, also from his support worker and camhs nurse. I must admit I had forgotten about his statement, I must chase that up as it is being amended in situ. Thinking about it though I also have reports from SALT and EP from his review in nov so could send them too, I will speak to school as they are fab.
Bochead I agree the forms are horrendous, I have both ds2 adhd and ds3 renewals due within a month, funny thing is ds2's is easy.

I have gone through the things I have from school and have also found his positive handling plan which states his violent behavior and what kicks him off, is also says that he can require up to 3 members of staff in some situations.

"Not quite true Lougle: ds1 gets it in significant part becuase his violence means he needs 24/7 supervision- he has a letter from the paed stating that and it is a trigger phrase."

Absolutely true, ScramVonChubby. The point I was making is that the violence itself is not a qualifier, it is the care needs that arise from the violence that qualifies.

It may seem picky, but so many claims fail because people go into great detail about the pain someone is in, the tiredness they feel, how depressed they are, etc., but if they don't then go on to explain how that causes a need for 'guidance' 'supervision' or 'attention' to personal care needs, they won't get the DLA. Because the decision makers can only make an award on the basis of care needs.

A classic example:

Did you know, that no matter how severely disabled a person is, if they can't take advantage of the use of a car, they can't get HRM?

Did you know that if someone is so aggorophobic that they cannot leave the house, even with support, then they won't get the LRM component, because although they would need 'guidance and supervision' when outdoors, the fact that they can't go outdoors means they don't meet the criteria.

What I was pointing out, to keepingupwiththejoneses is that it doesn't matter what her son's 'features' are. If she doesn't demonstrate how that creates care needs 'substantially greater than a same age child with no disability' then her claim will either fail completely, or she will be awarded a lesser award than her son needs.

I know Lougle (BTW you do know me- erm, think MA in Autism? Um, oh sod it_ Mn asked me to come back so I, peachy, am seeing if I like it or not any more: undecided!)

It really is about care needs as you say: I do these regualrly for my two and tend to stick to a format of 'becuase he needs X then we have to Y'- explain it as if it is a five year old on the end. probably will be soon anyway, or a volunteer

And the otehr tip is never be disheartened by a rehection hard though it is: theya re routine and IME they just want to see if you fight- at which point they will read the file properly. Assume it is part of the process.

svc, good to see you again

keeping, good luck with your claim, never understand why people think it's so easy to get dla!

I think i have got it now. I have explained that ds has his own set routine for everything and if it is interfered with in any way he will do x, y and z so we need to a,b,c. I have included report from school saying that. I have also said that ds has obsessions that go with an action within his routine and if he can do it he can not move onto the next step if that makes sense.
Scram I think they know I will fight, I fought them for 16 months only to walk into tribunal to be told they had already made a unanimous decision to award hrc and hrm.

keeping up
try it as:

As is common with autistic children, DS has a need for a rigidly fixed routine for each section of his day, sucha s (eg example of morning routine). if this is not adhered to the results are: the consequences from that will then be:

it's good they know you will fight; many do not

scram I have put it pretty much like how you have said, but used his evening routine as the example, I have gone into great detail as to what the consequences would be too.

Excellent, good luck then!

Scram - nice to see you back

As you know me, you will know that I am a bit blunt , but I do think it is so important to get across what you and I both know - that they can only award on what is written, and that what is written has to be the 'right' information. Too many people waste huge amounts of time explaining how 'difficult' their child is, when what the DM wants to know is 'what do they do/need? Is it because of their disability? What are the consequences of not doing it? Is it very different to a 'normal' child their age?'

What I didn't make really clear, Keeping is that through all of that, it is useful to be very clear about the effect of one area of need on others. So anxiety feeds routine, feeds anxiety, leads to meltdown, for e.g.

keeping, we just got middle care and lower mobility after filling in the form as per Lougle's method. The 'statement from someone who knows you' was from the special needs playscheme. The decision took less than 3 weeks, no appeals etc. I don't think they even wrote to anyone.

I had help from a worker at the local adhd/asd charity who made me write down exactly what i was doing 'extra' and why. We mentioned violent outbursts and meltdowns everywhere, including a detailed description in the section for 'does he have fits or anything similar?' I filled every box of every page except the 'at night' bits as (thank God) he does stay in bed now.

We put in the EP, and clinical psychologist reports plus paediatrician letters. It might well be worth including something that details the mainstream disaster as that 'proves' the need for constant competent daytime support, and might save a wait while they write to people.

Hi Scram, nice to see you again.

Oh, and the reason higher rate care wasn't awarded would be because I don't need to intervene at night (and fingers crossed it stays that way). You can't get higher mobility for dc whose legs work unless you get higher care too. (Probably teaching my nan to suck eggs here, if so, sorry)

BTW Lougle, our borough's association of disabled people also employs paid part-time benefits advice workers who primarily help people with DLA forms. Are you still thinking of that line of work?

Thanks mariam, I have included the report his ms teacher did for the statement review which explains why he needed to be moved.
Lougle although I don't post much I do linger so I understand your bluntness. I think I have put down about how if a certain thing within his routine that really has nothing to do with the routine is not done he just can not move on to the next step. I have put it like this 'L has several obsessions that accompany his routines, for example, during his bedtime routine L must collect all of his toy animals into his purple basket before he can leave the living room, if he can not find a certain animal he is unable to move towards the stairs, if it takes more than a minute or so to find that one he will get frustrated and start to throw the animals and basket which causes him more frustration, he will then go into crisis'

I have put a footnote as to what I mean by a crisis and also has his teacher from ms in her report.

That is only to explain ds's strictness in his routine.

Please let me know what you think as I haven't written it on the form yet just in my note pad with the rest of it. I will copy it onto the form when I am sure I have it right.

Mariamagdalena - yes, one day, I would love to do that sort of thing. Right now isn't the time, but one day

Keeping, yes, I think that is fine. Do you go on to say what you need to do? ie. do you have to assist him with finding the toys? Would you have to search for the toy until it is found? Do you have to act to keep him safe in crisis? Do you have to act to prevent the crisis, or prevent him or others from injury?

This is my main point, I suppose. (I am sure you have said all this stuff, but for others reading) It is sad that your DS gets frustrated about losing his toys. But so do lots of NT kids. My DD2 is 3.7 and we had to go to a friend's house to borrow keys for the Church building, because she had left her dolly there, and didn't want to go to bed without it.

HOWEVER, the key point to stress, is that for my DD2, while she may have been devastated, and even may have had a tantrum, her reaction would be normal for her age, and would pass relatively inconsequentially.

For a child like your DS, presumably, you would do ANYTHING to find that animal, to prevent the crisis which is so distressing, 'abnormal' for a child his age, and violent that the mere thought of it is something you dread?

It is THAT which is so important to get across on the forms. Because otherwise, you run the risk of the DM thinking 'so he doesn't like losing his toys, what kid does?

You need to spell out every difficulty, every stage. Here is what I put for DD1's medication:

"DD1 has to have her epilepsy medications and liquid Melatonin before bed, and she does not enjoy this, so she will run away, shouting ?HIDE!? when she sees the medication being drawn up. She requires encouragement, and often gentle restraint, to allow the syringe to her mouth. She needs close supervision to ensure that she swallows the medication rather than spitting it out. Her 2nd epilepsy medication is in chewable tablet form. She requires close supervision to ensure that she has chewed and swallowed the tablet, which is very small. If she is not co-operative, we have to dissolve the tablet in 5mls of warm water then draw it up in a syringe."

Now, I could have simply said 'DD1 has to take medication and she doesn't like it'. But the care needs come from the different steps I have to take, her reactions, and my actions to overcome her reactions. The DM can't be expected to know that stuff. So I have to spell it out. Otherwise, s/he may think 'medication - only takes a second'. No, it takes a good 10 minutes on a good day.

I understand what you are saying lougle, I have explained what happens when he goes into crisis and what we need to do during one. I have also explained the dangers that can happen when one occurs too.

I did this section for DS2, the other day. HIs problems in this respect are of the OCD variety, so I listed several situations that would seem trivial to most kids his age (eg someone only wearing one shoe because they're in the middle of putting them on or taking them off, curtains not open evenly, walking on the wrong side of the road, being taken to clean his teeth before DS1 is in bed) and described the range of typical reactions to these situations (ranging from anxious tugging at us until we fix it, through screaming, through slapping us until we change it to full blown legs turning to spaghetti face on the floor tantrum). I explained how his response to these situations is exaggerated by his inabilty to actually tell us that it upsets him (this sets him apart from typical kids his age). I also described the things that need to be done to calm him - on a better day, it's just a case of straightening up the curtains - on a bad day, eg when he has been up since 5am, he flits from one crisis to another and starts going around the room almost deliberately finding things to be upset about and is pretty much inconsolable.

Peachy!

Lougle is my dla guru, thank you lougle.

I hope you have had enough ideas to help you Keeping. I know it is a horrible process.

Scram - nice to see you, have missed you.

'because I don't need to intervene at night'

Always be aware that night is 11 - 6 for DLA.

DS1 often sleeps through but because he won;t settle until after midnight HRC is still applicable.

Which is why DLa means knowing every regulation just to get what's the basic entitlement.

It really is a world of hidden agendas and hidden meanings out there isn't it.