DS turned down for DLA, what are my next steps.

[oldteacher]

I have heard today that DS has been turned down for DLA. This is on our first application. I used the cerebra guide, as well as tonnes of advice from here and elsewhere, sent all reports/IEP etc. I have asked for a statement of reasons (and the DLA lady gave me them over the phone, so I have a jist of what happened). I know they phoned the school (SENCO) last week but I don't think they contacted anyone else, either by letter or phone.

The reasons seem to mainly come from the 'good' bits about DS in the reports sent in and from the SENCO. I am a bit frustrated about the SENCO/school bit as not very much of what I wrote on my form was about school, it was about the care I have to give to him away from school. For example, he doesn't need extra supervision at school because he can't escape and they don't take him along any pavements/roads. Whereas at our house DS can and does try to run out of the house and garden, and also needs a lot of extra supervision when walking outside.

What are my next steps? I have searched but this is where I get confuddled! What is the difference between a reconsideration and an appeal? I will have the statement of reasons in writing and will go over where I feel my application disputes these. I also have an updated IEP which states much more how adult help is needed for DS in school- his teacher is fab.

I'm feeling very low about it. I found the form incredibly depressing and I was so grateful to just finish it and send it in, now I have to readdress everything and open it all up again.

Ask for a reconsideration and then if the answer is still no then you can appeal.

We asked for a reconsideration and I wrote a huge letter about my DS. I didn't mention the word good. It's like a red flag. Better is the word to use.

Hmmmmm.....

Well, I don't know your back story, obviously. But the thing that immediately rings alarm bells for me, and makes me wonder if you've been given all the advice that you need is this:

"For example, he doesn't need extra supervision at school because he can't escape and they don't take him along any pavements/roads. Whereas at our house DS can and does try to run out of the house and garden, and also needs a lot of extra supervision when walking outside."

It's really important to know which part of his needs for additional care/supervision fit where. It isn't so important if you are a repetitive sort, and duplicate information across all your answers, but if you are a concise individual who has a tendency to think 'oh well I wrote that earlier', then you can come seriously unstuck.

Generally speaking, the 'care' part of DLA relates to indoors and daily activities of living and general supervision, etc., and the 'mobility' part of DLA relates to needs relating to walking outside in unfamiliar places.

Why do I emphasise that? Well, because someone can be perfectly able to navigate a safe route to a very familiar place, ie. a particular shop, but still be entitled to DLA because they couldn't do so to an unfamiliar shop.

So some questions for you to decide what to do:

1. Did you keep a copy of your full application? (pleeease say yes!).
2. Separate out the 'care' questions and the 'mobility' questions.
3. Look at whether your answers show the following:

Care
a) A need for care/supervision over and above that of a typical child of your DS age for 1 hour or more combined over the whole day?
b) Ditto above, but frequently throughout the day? (ie. much more than 1 hour).
c) A need for constant supervision/care with or without short breaks.

Mobility
a) If your DS is 5 or over (ie. not a 4 yr old in reception):
Extra guidance or supervision when out in unfamiliar places.
b) If your DS is completely unable to walk or virtually unable to walk given the pace, time, manner or distance that he is able to walk.
c) If your DS has a Severe Learning Disability combined with Severe Behavioural Difficulties which mean that he is a danger to himself or others when out in unfamiliar places.

If you feel you have demonstrated that he qualifies, using the above, then ask for a reconsideration, pointing out all of your answers which should have indicated that your DS qualifies.

If you think that he does qualify, but that you didn't make his case too clearly, and in hindsight you could have worded things a bit more effectively, then write a request for reconsideration highlighting the areas where you think he qualifies, with the more effective wording!

Come back to us and give further details if you are able...we might be able to help

Take it to your local CAB - we were refused the middle care element - aparently having to be cathererised every 3 hours means our 8 year old doesn't have 'toileting needs' - amongst other gems, including the need+use of a wheelchair - supplied by the local PCT means he has no mobilty issues........... ask for a 'written statement of reasons' - they have to send this to you. Our local CAB [in a small rural town, so not especially 'special'] took all our details and went directly to appeal for us. We're still waiting, but at least they are now speaking to his consultants at GOSH, rather than doing the usual and not even reading the document.
We were told that no one 'medical' even looks at the form until it goes to appeal - its done on a tick chart - ahhhhhhhhhhh - so bloody annoying!!

As a general point, it can be helpful to break down every care task into step-by-step tedious and laborious detail .

So 'requires catheterisation 3 hourly' becomes 'I have to do x...then y, then z, then do so and so....' Suddenly, that 'catheterisation' which is just one word, becomes 15 minutes of anyone's time.

You can also request the whole of your ds file which should show what the school has said and the decision makers comments. This can show you where you need to focus your energies in terms of providing more evidence.

OK, thank you for your replies. DS is 5 and has HF ASD with hearing problems. I thought I did labour the care needs throughout the form where it was relevant but maybe I didn't do that enough? To try and give further information

1. I did keep a full copy of the form (thank goodness).
2. I think he qualifies for middle care and lower mobility. The care is tricky, as he is at school. Away from school, and especially in the period from after school to bedtime there is a lot of time spent on extra care/supervision. The main points on his care are

*bedtimes- we have a lengthy routine to get him settled. He often takes 90 mins to get settled, he gets up and wanders about, wants food, goes to the loo, has meltdowns about stories/songs/toys, reads in the dark.

*toilet- he is reluctant to use the loo for a bowel movement. Once he does go, he takes off all his lower clothes and spends ages (10-20 mins) on the loo. He usually refuses to wipe himself, or needs supervision in the way of reminding of how to do it. He has a limited diet and this leads to looser stools, and compounds the wiping situation. He then needs supervision to redress (he can physically dress but often refuses, or it becomes a battle, or he does it wrong) and to wash his hands. The process takes 10-20 mins and is at least once a day. AFAIK, he saves his poos for home!

*He can dress and undress, but often does so in the wrong order or incorrectly, or chooses inappropriate clothing. He can forget to remove his underwear and replace with clean ones. Also, he has to change immediately if he gets wet or dirty and gets distressed.

*He has a limited diet and needs encouragement to eat foods which require more chewing like protein and to use his knife and fork. He is a very slow eater and often needs to be fed each mouthful. He has recently started to eat much less at dinner time at school (he has a packed lunch).

*He has a mild hearing loss which affects his ability to hear. he often misses instructions/warnings inside and outside the house and needs them repeated.

*He has difficulty understanding facial expressions and body language. he needs instructions given bit by bit. often repeated and using clear language without sarcasm etc. His communication needs are continual, everyday.

*He panics with cars coming close by, this affects the commute to and from school and other journeys as we usually have to walk. He is fixated by routine and unplanned changes can results in meltdowns. he can be destructive if left alone (for example he picked at our sofa and pulled the material on the cushion apart bit by bit). He tries to get extra food constantly after school which can affect his evening meal appetite. He tries to leave the house and garden withour permission and letting a grown up know.

*He needs frequent adult intervention to help him cope with how to behave and react to people.

Those were my main points, I have condensed them here. Looking back over the form tonight, I probably have not used the best language that I should- I have used things like 'DS needs prompting to ......' rather than 'DS needs supervision to....' . It's the teacher in me trying to present the bad bits in a better way like you have to for reports. Bollocksy bollocks, that's so obvious now.

From what they have told me on the phone, I really don't think they have read the form though. All of their points stemmed from the reports I sent in, so they said 'The SALT report says......' DS is very academically able, so again there's the inference that he can do many other things implicitly, which he can't.

And I will also ask for the report too, thanks for that tip.

And breathe...........

Ok that's useful. So, briefly, you say DS tries to leave the house without letting an adult know.

Remember that children are judged not only against their needs, but also against what a typical child of their age needs. A great number of children at his age would not be able to leave their house without a parent with them. Others would, depending on their maturity and their environment.

So, have a look at your form. Can your DS go out independently or not? If he can, is that only for a specific familiar route, etc? It can be very easy to try and be concise but the 'devil is in the detail' as they say.

I'll come back later.

We were refused with our first application. I had just had a miscarriage and, like you, the whole form depressed me so I didn't appeal. Apparently the school had said how lovely he was! Friends were aghast and when I felt stronger I reapplied. I went to CAB and they were great. We were refused on application but got it on appeal. We were awarded middle rate care and low rate mobility. By this time ds had a new teacher and I got a supporting letter from him to add to my appeal evidence.

I have since been told that 3/4 of people get it on appeal.

I think it is quite a common experience to be turned down/offerd wrong level of support on first applying for dla, either because applicants are not specifiic enough or the dla people doing the initial analysis of the forms are not judging the level of need correctly. Sometimes though it does appear as though they have been primed to pick out any "positives" as reason to dismiss the whole claim.

My advice would be to ask for a reconsideration. Go through each point on their reasons for refusal and point out the evidence which refutes that particular argument or say why you think they have misinterpreted teh evidence already supplied.

For example, we had said that ds needed support and supervision to eat at school. School on their form said no additional help needed. We pointed out that although ds had no physical difficulties with feedinghimself, he did have a history of refusing to eat/ hiding at lunchtimes because of anxiety which was well-documented at school. School had too narrowly interpreted the needs help at mealtimes as "needs to be spoon-fed".

So you point out that ds' academic performance is not relevant to his additional needs but his difficulty in communicating effectively is relevant and quote pertinent section from salt report.

Also you can point out where they have not contacted relevant professionals whose opinion would support your application and ask them to do so.

The impression I get is that they are looking and not seeing a contrast with the average 5-y-o 'cos they think all 5-y-o's are very demanding - so spelling out those aspects will help 'most 5-y-olds require x but DS requires x and y plus z on at least one occasion per day' or 'typically a 5-y-o will, but DS...' , 'DS's peers are able to.... but DS requires...' The emphasis will need to be on the additional intensity of supervision/ guidance as all small children need someone with them all the time.

Don't forget to include all the extra infomal education and therapy (formal and informal) your DS needs as it's not limited to just 'care' in the narrowest sense for children (as it is for adults) but also to the extra upbringing involved so 'I take DS to the local swimming pool once a week for an hour to help reduce his anxiety about water/ to provide an opportunity for physical exercise that he does not get otherwise because...', 'I sit down with DS and encourage him through out the 20mins it take him to do his spelling homework as he is unable to stay on task independently three times per week, whereas his peers' parents are able to just check their DC's learning at the end'. Include it if it's provided by someone other than you e.g. grandparents, extra help at out of school club etc. There seem to be more DLA points attached for frequency of help than to duration.

Make sure you include all the leisure activities your DC would like to do, his contemporaries could do and he could do with extra help but can't at present as there's nobody to provide it. You don't have a be receiving the care you need to require it - so if it's that your DC wants to go Beavers but there's nobody available to give him extra support then put it in and detail the extra support he would require. The things that happen less frequently like children's birthday parties are easy to forget - having to stay to help him rather than dropping off.

That would also go for something like him eating much less at school it's obvious to another parent what the problem is - but you need to put it as a care need try: 'DS is not eating enough food at school lunch times because he is currently being treated in the same manner as his classmates; DS requires close supervision and encouragement from an adult for 25mins to eat an adequate amount at lunch'.

I agree about breaking each task down into component parts and writing down the details of what you actually do, including things as simple as verbal prompts or touching your DS to get his attention before speaking to him.

One way round the repeating yourself or trying to work out which box to put each bit in as to write the whole thing as one epic essay, call it 'Appendix A' and attach to the form and then in any box where it asks you to describe your DS's needs put 'Please see Appendix A' which then leaves the onus on them to work out what is relevant to the question in hand (I have done this successfully).

DLA forms are so grim, but you'll get there.

I think they turn down a lot of applicants on the first application and only those who persevere with DLA get it.
we got turned down for DD initially, got turned down on reconsideration and when we appealed, we got suddenly HRC (makes one wonder how a child can go from not qualifying at all to qualifying for HRC without providing extra evidence ). just persevere!

Thank you so much for your replies and kind words. I felt very low last night, as I find it hard as a person to be assertive and more forceful. I even decided that DS would have been better being born to someone else that had all these skills to do right by him. But I do feel better this morning and it helped having slept on it as the decision letter came in the post.

So, I have rang and asked formally for consideration. The lady went through all the points and I said where I disagreed and gave them more evidence and also asked them to refer back to the question. I will send in his updated IEP which details more help. Is it worth also asking them to contact his teacher as opposed to the SENCO, as extra evidence? I also have been compiling a diary, although that is in very shorthand and mentions incidents rather than goes over the detail of time/effort needed to sort it out.

I'm assuming reconsideration probably won't be successful, so thinking ahead, what happens for an appeal? Is it worth contacting the CAB now to get going on whatever?

for an appeal you just fill in a small form and write down why you do not agree with their decision.
if they still do not change their mind, then they will refer it to the tribunal who will then hear your case.