DLA renewal

[dekra]

I got the DLA renewal forms in Feb as it was 6 months prior to Finn turning 5 and the letter said it was if I wanted to claim low rate mobility. I was waiting until the diagnostic process was complete and all reports were in. I then got ANOTHER set of renewal forms in March as it was then 6 months until the end of his award but again I was waiting. On Friday I got yet ANOTHER set of renewal papers (slightly updated form and I must say much better) and a reminder to get it in so they have time to process it. So 4.30pm on Friday I set to work on it even though I am still waiting on some paperwork confirming all that was discussed at assessments last month to arrive. I was at it until 1.30am. So that was 4.30pm-8pm constantly, I stopped for an hour and was working and watching tv then from 9pm-12am I was doing it in the background whilst I was working (I work from home) and from Midnight to 1.30am it was again my main focus. Husband cooked, sorted kids etc. Last night I spent about 1 hour on it and I still have 4 sections to go. I took other peoples advice and used a word document to add extra info and numbered each section as per the form. As things stand with 4 sections (including social aspects and communication which are not going to be short) to go I have just under 6400 words typed.

 

Once again it is so depressing cataloguing all of his difficulties and the problems that face both him and us all as a family on a day to day basis.

 

On a positive note whilst we were awarded last time with no diagnosis and only the health visitor (who was next to useless) as a professional contact this time we have a list of about 11 professionals Drs (paeds and paed psys), SALTS, OT's, Edu Psy & a Special Needs teacher that all have been involved in assessing and/or supporting him and we also have the dual dx of Language Disorder and Developmental Delay so we can say yes there IS a problems, this is what it is, this is how it affects him and why.

 

So on paper I think renewal should be ok however there has been an improvement in his toiletting (due to a very structured routine being inplemented) so they may refuse day time care needs due to this as when they did the award initially the day time aspect was based on his incontinence at that time. I feel there is so much more care beyond toiletting but it's making them see that. Hopefully I will get someone that has some common sense (would be wonderful if I had the lady that did the reconsideration the second time and realised his night time needs warrented HRC when we hadn't even asked for it). I also hope that we get a longer award this time - again the second reconsideration last time increased the rate but reduced the time which I think was fair but just hope that we don't get another 15 month award which means I am applying again in 9 more months.

[Lynden]

We did the forms initially when L was 2, mobility at 3 (he didn't begin to walk till he was 3 and a bit and even then it was with support), renewed at 5 and then had to renew again when he was 7 and I know friends who have had to do the same but that may not be hard and fast rules as each case is different. Thankfully we have it now until he is 12 so have a few years off worrying.

 

Lynne

[trekster]

i highly recommend www.benefitsandwork.co.uk as it mentions how to describe your sons difficulties. Also mention what would happen without help eg "without someone familiar with my sons needs supporting him in school he would (mention behavour in the worst setting)".Mention who has to help your son with his toiletting needs, why and how also what happens when the routine is broken, changed or avoided or what could happen.

 

Totally understand how upsetting the DLA forms are, mine took weeks to gather the evidence and explain in intricate detail. i even had to write a letter with it explaining that i was unwell and that is why it was late. DLA did confuse me though because they didnt warn me that an indefinite award can change to a limited time award. Mine is being reviewed 2 years early despite having more care needs and still being autistic!

 

Really pleased you have more profesionals involved. Could some of them write a supporting letter to go with your childs application?

If you can think of why you are doing this for your son, the result is normally DLA is paid but how that affects your family and what it can enable you to do as a family. im unable to get HRC even though my needs are the same during the night as well as the day. i hope i can get a better result with the new PIP which i have joined the campaign for with a few charities associated with my disabilities.

[Tally]

It's extremely time-consuming and utterly miserable.

 

I hope you'll get a fair decision. It sounds like you have plenty of documentation, which is always a good thing.