Lougle I need your expertise

[SparkleRainbow]

My ds was turned down yesterday for both care and mobility part of dla. ave rung them decision makers notes say and I quote

1. "No to care as although issues with pain management and urinary incontinence are acknowledge this is not signifcantly different from peers."

My ds is 7 nearly 8, he lives in constant pain of varying degrees, he has physio at home twice a day for half and hour each time, he needs help with dressing, bathing, toileting etc, more than 50% of time. But every day he needs his 1 hour physio irrespective of pain levels and other issues on top. What do you think?

1. "No to mobility as although we acknowledge it will take him longer to walk 100 m than a peer he is not at risk of falls"

Ds falls constantly, has been hsopitalsiied due to falls 10 times in last 12 months, taken to hospital on back board, his kinesthetic awareness is so poor is falls several times a day, walks into doors, falls off bed and chairs. He has detailed risk assessment in school to try and manage this, and called by school several times a week for pain management, or to assess whether ambulance is needed. This is all detailed in form and supportted by risk assessments, health care plans hospitaisation dates etc.

What do you think, feeling desperate about having to carry on fighting, for recosnideration and appeal. Have you language suggestions, advice etc?

Ok, answer some questions, and I will be able to work out what has gone wrong (I hope):

1. Did you include the risk assessments, health care plans, discharge summaries from hospital, etc., with the form?

2. When you say 'hospitalised' due to falls - what does that mean? Visited A&E and sent home? Admitted to a ward? Checked over and released? What treatment did he require?

3. Do you feel you were detailed in your form? Did you explain terms such as 'kinesthetic awareness'? DLA assessors are not medically trained. My rule of thumb, is that if it has more than 2 syllables and you wouldn't use it in an everyday sentence, then give the definition as part of your explanation.

4. It is hard that your DS struggles with pain, and has incontinence issues. However, the test isn't 'is life hard for him' but 'does he need more care than a same age typical peer?' - were you explicit in explaining how his pain = extra care?

That'll do for now - probably made your head spin. See how you get on answering those, and we will start unpicking the appeal.

OOh....

5. Does he have a dx? What is it?

Right
First

1. Yes he has Ehlers Danlos Syndrome Hypermobile type. He has hypermobile joints all over, but mainly in his neck vertebrae, his shoulders, his hips, knees and ankles. He has pain in other joints too, and dislocates those as well, but the hypermobility is less pronounced. He has very poor gross and fine motor skills, neurally mediated hypotension which makes him prone to fainting, urinary incontinence. Other bits too but those are the main ones.
2. included risk assessments, health care plan, physiotherapy plan and emergency action sheet. I do have but didn;t include hospital dischareg sheets, xray reports.

2.Hopsitalised means taken to hospital by ambulance on a back board, sometimes admitted and sent to ward, sometimes manipulated and xrayed, sometimes used examined and discharged.

1. I thought I was detailed in my form, but maybe I was not layman enough. I did use terms like kinesthetic awareness and gross motor skills, but I also explained how it affected him in terms of causing falls, needing contsant supervision.
2. Not sure about this one, again I thought I was, talking about him wetting himself and needing changes, pain management, but maybe I wasn't clear enough, certainly not as well as you described pain medication on the other thread, will re read the application. now

Ok

In the order you answered:

1. What the assessors are interested in is the care needs a child has that differentiate him or her from the general population.

As parents, we care a lot about pain, discomfort, etc., but the assessors can't award DLA for pain. The regulations are really crystal clear, that it is the care needs that arise from the condition which qualify an individual for DLA, not the condition itself.

An example, two scenarios (sorry to be boring, but I always do 'compare and contrast' examples):

1. John had a car accident which left him paralysed from the waist down. He relies on the use of a wheelchair to mobilise.

Soon after John was told he would be paralysed for life, he started to do a rigourous excercise programme. He strengthened his arm muscles, his upper body muscles and worked to become efficient at propelling his wheelchair.

John uses a banana board to transfer from chair to wheelchair, and has got quite efficient at using it. He lives independently and has an active life.

John would be entitled to HRM, because he has no use of his legs, but NO CARE RATE because he has no additional care needs.

2. James had a car accident which left him paralysed from the waist down. He relies on the use of a wheelchair to mobilise.

Soon after James was told he would be paralysed for life, he sank into a deep depression. He couldn't see the point in life now that he couldn't walk, and spent most days in bed. As a result, his muscle tone diminished, and he became weak.

James can mobilise short distances with a wheelchair, but requires full assistance to transfer from chair to wheelchair. Because he has reduced muscle tone, he needs assistance with activities of daily living. He doesn't have the strength to turn over in bed.

James would qualify for HRM, and either Middle Rate or Higher Rate care.

So, same condition, same cause, same circumstance, but the different care needs result in a different award.

What I am getting at, is that unless every statement you make about your DS's pain is followed by a 'this results in this care need' type statement, you may as well be talking about his love of computers. It means nothing (to them).

You need to make sure that you are explicit about what care needs arise from his pain.

a) The time taken to administer pain relief
b) Whether you have to massage his muscles or something else.
c) How the physio programme affects his pain levels
d) How long you are up with him at night because of the pain
e) How often he cannot go to school because of his pain
f) Does he need extra reassurance and encouragement to do activities because he is frightened that he will dislocate or be in pain?
g) Do you have to spend time encouraging him to take pain medicines?
h) Does he tell you when he is in pain, or does he try and hide it because he doesn't want to be 'different'? Do you have to risk assess for him? Do you have to spend time talking through situations to help him decide if he should do something or not?

1. The Hospital discharge sheets are your proof that you aren't just a neurotic mother, and you actually had a good reason to take him to hospital.

I could take my DD1 to hospital every day for a week, be discharged without any treatment, then say 'She has been at hospital every day this week.'

Hospital discharge summaries are really useful evidence. You need to send them in with your appeal.

2. Ok, so you have a variety of treatments that your DS has had. Did you give scenarios in your DLA app?

I wrote around 15,000 words for DD1's renewal. Mainly, the reason for the length is that if there was any 'range' in her condition, I was explicit.

I would say 'if x happens, I have to do y....If y happens, then we might need to do z, a & b, at the very worst times we have had to do c,d,e &f.'

ALWAYS, also, tell the assessor what would happen if you DIDN'T give your DS the extra care he needs.

ALWAYS point out how the care needs your DS has are different or additional to that of a typical child of his age, because that is the bottom line for DLA. You have to show that he has care needs beyond that expected of a typical child of his age.

I truly believe the assessors aren't mean spirited imps out to get you. They just can't award the DLA if the words aren't there.

3. kinesthetic awareness - likelihood is, the assessor read that, thought 'new fangled new agey stuff' and moved on. It just isn't a mainstream phrase.

I think that it pays to be explicit. I don't assume anything about the DLA assessors. They may have great analytical skills, but be rubbish with mathematical concepts, for example.

I ALWAYS break down any key terms. For example, I wrote:

"DD1 has been assessed as having speech on the 5th centile in ideal conditions. This means that in a room of 100 children, only 4 children would be harder to understand than her, or have more limited speech than her.

DD1 has been assessed as having comprehension on the 5th centile in ideal conditions. This means that in a quiet room with no distractions, out of 100 children, only 4 would have less understanding than DD1.

There can be no confusion then. No-one can say that in a room of 100 children, a typical child would be harder to understand than 95 other children of their age.

"4. Not sure about this one, again I thought I was, talking about him wetting himself and needing changes, pain management, but maybe I wasn't clear enough, certainly not as well as you described pain medication on the other thread, will re read the application. now"

Wetting himself, while upsetting and distressing, doesn't in itself = more care.

Again examples:

1. DS regularly wets himself and needs to change.

No extra care needs - he wets himself, he gets changed, big deal.

2. DS regularly wets himself. Because he has hypermobility of his joints, he finds it hard to pull his trousers down, especially as the wet fabric clings to his legs.

When DS is in pain, he finds that he is too exhausted to clean himself, and he can't reach all the areas that need to be cleaned. He needs assistance. If he does not get help, the urine burns his skin, and he starts to smell. He is now old enough that he realises he smells, and he gets very distressed by this. I need to reassure him that he is not a 'baby', and he can be upset for as long as 20 minutes at a time.

Because DS gets embarrased and upset, he often tries to hide the fact that he has been incontinent. It can take up to 10 minutes of encouragement before he will let me assist him.

DS's hypermobility also causes him difficulties with putting his clean clothes on. He requires assistance to pull his trousers up, and even though we use elasticated waist bands, the resistance of the elastic can cause him even more pain. He finds it hard to lift his arms over his shoulders to get his new t-shirt on.

In total, when DS wets himself, the process of encouraging him to let me help, helping him get clean, dressing him and reassuring him that he is not a 'baby' takes around 20 minutes each time. He can wet himself up to 3 times in a day."

So then, in the boxes, you would write:

1-3 times per day

20-60 minutes.

Obviously I don't know your DS, and that could all be rubbish, but it is just an example.

Wow Lougle, you really are fab, you have made it so clear to me, and you have described my ds exactly! I have written things about the physical issues around pain medication, wetting himself etc, but I have not done a good job in describing how it actaully affects him exactly.

So I should take each section and rewrite for the appeal, describing the effects very literally. The use of scenarios is very powerful and useful for a a medical condition where the response necessary varies on a day by day or even hour by hour basis. I tried to get that across, but nowhere near as well as you have. So I will start rewriting tomorrow.

I have asked for a reconsideration, with reasons and supporting evidence to follow in the next few weeks. I have contacted ds's physio and class teacher and asked them for reports, I have also contacted to Paed Rheumatologist.

Yes, start with a reconsideration. Don't worry about the appeal, because if you get turned down on reconsideration, you will get to appeal anyway.

At the end of the day, assessors get hundreds of claim forms, and somehow have to separate out the 'disabilities' from the 'inconveniences'. To do that, they can only go on what is written.

Your job now, is to go through your claim form (please tell me that you photocopied it or have a scanned version!) and pick out every bit that you wrote which refutes their assertions that your DS doesn't require more care. Secondly, you need to gather every bit of evidence you have to support you.

I wanted HRM for DD1, and I was concerned they wouldn't understand why she requires it or meets the criteria. So I wrote a 'case statement' just for that one question - around 5 pages of typed A4. I quoted the professionals reports, with referencing, just as I would an academic essay. If it is written in black and white, it is harder to ignore.

Don't feel you have to be 'clever'. Speak in plain language, appropriate to the subject. Don't exagerate, but do give so much detail that they can't possibly misunderstand.

Pretend you are writing to someone who has no clue what a typical almost 8 year old does.

ie. A typical 8 year old would go and play football with his friends in the park. DS can't do that because the risk of a fall is such that he is likely to suffer a major dislocation and require hospital treatment.

Thanks Lougie, that's cleared something up for me as well.

Yes I have a complete copy of everything I sent to them, don't worry. Giving info on typical child also quite powerful, thank you. You are a superstar! I am going to print out everything you have suggested now, so I remember it all. Will start writing in the morning.

Great!

auntevil nice to see you - glad it helped