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Where to write about ASD care needs in DLA form version 2013? it changed since 2011

6 replies

Vanillachocolate · 11/01/2014 19:12

My DD with ASD receives DLA at higher rate since 2007. I already renewed it in 2011. Now I received the renewal form and it's different. The parts about communication and many other parts have been removed. The form changed to make the questions very narrow, so it is difficult to talk about difficulties typical for ASD. The form is much more about physical aspects- e,g. "can she talk is clear sentences?" She can physically talk with her mouth and form sentences, but it is not the same as communication. She talks obsessively about her interests, difficult to follow what she means, but when she needs to articulate a point, or to engage in dialog, she just stalls. Do I say that her sentences are not clear?
What do I do now? Should I just write what I have to write even if it is beyond the narrow scope of the question? Will it even be taken into account? All the guides I could found seem to relate to the old form. Is there any advice about dealing with the changed form? Any DLA veterans out there?

I am sorry if this question was discussed to death, but I couldn't find anything relevant.

Any thoughts will be greatly appreciated.

OP posts:
PolterGoose · 11/01/2014 19:19

This reply has been deleted

Message withdrawn at poster's request.

chocnomore · 11/01/2014 19:27

www.cerebra.org.uk/English/getinformation/guides%20for%20parents/Pages/DLAGuide.aspx

I second the cerebra guide

ouryve · 11/01/2014 19:57

Her sentences do not get across the point of what she needs to be saying, so they are not clear.

lougle · 11/01/2014 20:19

I renewed earlier this year. I'm looking at my claim form, and Question 46 says:

"This is about difficulty in speaking.

They can: Speak clearly in sentences. Yes _ No_

If you want to tell us why you have ticked the boxes, how their needs vary oranything else you think we should know, use the box below."

The accompanying booklet says:

Here are a few examples of other things you may want to tell us.
It’s not a full list and doesn’t cover everything.
They may:
• get easily excited, start speaking very quickly becoming hard to understand
• be depressed and withdraw from conversation
• choose not to speak
• have a stammer, lisp or other speech difficulty
• become frustrated if they can’t be understood
• only speak with family or friends.

You can write anything you want to about speech. I type my answers and make them as long as I want to. For 46 I wrote:

"DD1 tries very hard to speak. She is so determined that she speaks in full sentences and it is easy to overlook how much this costs her. When you listen carefully, she actually says words in clusters of two or three words at a time to form a sentence. So, whereas most people would say ‘Are you going to the park today?’ DD1 actually says ‘Are you. going to. the park today?’ This is because it takes quite a lot of effort for DD1 to say each word and to join them into a sentence.
DD1 has immature speech sounds. She still has evidence of ‘fronting’ (saying ‘tar’ instead of ‘car’ or ‘sip’ instead of ‘ship’), which typically goes at the age of 3½. She still has a ‘stopping j’ (saying ‘dug’ instead of jug), which typically goes at the age of 4½. Many of her speech sounds are immature which causes difficulty in understanding even the most simple of sentences. Unfortunately, in DD1’s mind her speech is perfect – she hears the sound correctly in her mind but produces it incorrectly. This is very, very frustrating for DD1, because when she is asked to repeat a sentence or word, she says it exactly as she said it before, because it still sounds perfect to her. She gets frustrated and dismayed.

DD1 still has word finding difficulties. She knows what she wants to talk about but finds it hard to locate the word for the object in her ‘database’. For example, she will say ‘you know, that thing where you touch it and it goes snap.’ This leaves the listener to try and think of something that would go snap if you touch it (in this case she was talking about a crocodile). It’s extremely frustrating for DD1 (and the listener!).
Most children can be understood by strangers 100% of the time by the age of 4 years old. DD1 is hard to understand even for her grandparents, who see her several times per week. I have to interpret what she is saying for them. Similarly, even my husband (her father) struggles to understand and turns to me to interpret.
DD1 has been having Speech and Language Therapy since she was 3 years old (almost 5 years). Progress is slow and although she is having cued articulation therapy (where she learns certain hand movements to remind her to use a certain part of her mouth to form a sound), progress is unlikely to be radical.
DD1’s speech deteriorates markedly if she is tired, unwell, or unhappy. She will resort to signing at these times. Unfortunately she is a better signer than her parents as her school is a Total Communication Environment (that is, the staff all sign to all people, regardless of whether they require Makaton to communicate) and this is a source of frustration to DD1."

Overkill? Possibly, but it's my form and I always like to assume that the person reading it has no idea about children, let alone ones with SN, and definitely not the complexities of speech and language.

Write what you think affects her speech, which includes her language skills, because we speak to communicate language.

There is also question 47, which is about communication, so you could put some bits in there too.

Vanillachocolate · 11/01/2014 21:11

OK, so I won't be a malevolent fraudster if I write that her sentences are not clear. They framed the question that way, so there you have it. Her sentences aren't clear! As a matter of fact, she doesn't finish them in conversations, so how can they be clear? She needs help with communication in that only people familiar with her needs can actually understand her and communicate things to her effectively. Phew... Why was I confused?

I just have to write what I have to write. Like you, Lougle.

Thank you all for giving me back some confidence. I was obliviously panicking. My last renewal file was about 1.5 centimeters thick. Grin

OP posts:
lougle · 11/01/2014 21:16

Yes. That tick box is only there to give people whose children have no problems with speech and language (think for instance, a child with very severe eczema) can tick 'yes sentences are clear' and move on.

You write anything you think of that makes her speech less clear than other children her age. Including if she says half the sentence in her head before she starts speaking and you have to catch up without any clue (looking at you, DD2 Hmm) and the frustration that brings, etc.

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