DLA (child) Renewal

merlin68

I got the school t do my dd's renewal form and it came back as high rate are and low mobility. normally ith a bag you'd get high rate care most strange.
Is she at a mainstream school?
I also find that getting one of the organisations to fill in the form is better as they seem to like them worded in a special way as shes leaving school before her forms will come through families in focus are doing it this time for me.

confuseddaughter_2

lisa4995 wrote: »

I honestly believe that if they based their decisions on a medical/physical examination as well as the application forms and GP/consultants/medical professionals reports and letters then the system would be much better. My daughter can't even stand up straight never mind walk any considerable distance or at the same speed as her peers.

I totally agree. The scales are weighted at the moment towards those that can fill these forms out properly/have expert help in doing so/have an understanding GP or Consultant. Just because I can't fill them out properly/there is no expert help to hand locally/a GP & a Consultant that refuse to support why should I (my mum in particular) find that there is more of a chance for a refusal? Surely a full assessment of everybody will balance the scales a bit more.

lisa4995

hi merlin68, yes we have just moved her into a mainstream school as fantastic as the special school she attended was she suffered academically to a severe degree, she has managed to catch up fantastically on her reading and spelling but is about 4 years behind in maths. she has been funded for a full time teaching assistant who will supervise amd assist with her catheter and colostomy and carry bags etc and push her wheelchair when she is in high school moving class to class and also has to scribe for her as her motor skills are not fantastic and she is a very weak child who tires super easy. I reveived the letter from her ortho today who has made it clear that yes she can physically walk but due to her spinal deformities and hips and knee problems it is only a very very short diatance as she tires and suffers pain. she has also said she is happy to do a in depth report or provide any more info they require.

sunnyone

bloolagoon wrote: »

The mobility can always cause problems as can urology as they get older as it's subjective and they could say night time aids could be used - but when it's invasive treatment that can not be administered by a child (or even adult) then I cannot see how they can possibly claim otherwise. There is no grey with this and I assume why dialysis get an auto pass to at least middle rate.

Those treatments are MORE invasive than dialysis which by their own guidelines is MRC.

I can only suggest it's been an error and hope others can help.

The regular cathing and bladder wash outs are nothing, they are certainly not more invasive than dialysis.

You get so used to self cathing you do it without even looking and many children of this age can do it themselves though some may still need help for a bit longer but you have to remember its not a new thing that the child is just being introduced too, its something that has been going on for years.

The washouts are just cathing in reverse (we are supplied the kit and it is very, very simple and it takes under a minute to introduce the liquid into the bladder and the same to empty it after the prescribed time) and so they are just as easy and it is always done at home by the patient or carer if its a young child or a patient lacking the use of their hands/limited dexterity in their hands so no medical help required.

ArtoDeeto

I'm not sure where you live but are there any local disability organisations near you? What you need is some extra help from someone who has been through the mill already.
Personally I tend to find the approach to anything disability related is no and then they fall back under appeal (I do believe it is a saving money thing).
I have a severely disabled child and honestly you only win by joining fight club (not literally of course).

I have seen a mildly disabled get god knows what due to a parent having a big mouth and lots of waterworks whereas a quiet mouse mum with a severe get's trodden all over.
I guess that is like everything in life (right or wrong) - all I can say is don't take anything lying down...

lisa4995

Thanks artdeeto, I will definitely look into getting help with her next renewal, sunnyone I am afraid I have to disagree, everyone ia different amd whilst you believe the catheter and washouts are nothing my daughter certainly doesn't, yes she is able to do her catheter herself but as her anatomy is somewhat out of place it takes her a number of attempts and without an adult to support and encourage her she becomes distressed and unable to do it at all, the washouts are new to us and she really does not like them and take about 5 mins to administer as we have to do it slowly or she becomes upset and knocks the catheter out.

Indie_Kid

ArtoDeeto wrote: »

I have seen a mildly disabled get god knows what due to a parent having a big mouth and lots of waterworks whereas a quiet mouse mum with a severe get's trodden all over.
I guess that is like everything in life (right or wrong) - all I can say is don't take anything lying down...

In your non medically trained opinion. Unless you know everything about the so called mildly disabled? I don't look disabled. But what you don't see is the pain, the communication difficulties, the social difficulties, etc.

:mad:

There's no need to be so judgemental

Loz01

Wow I don't normally reply on these threads and sorry OP, I don't have any helpful words but I just think its disgusting her DLA has been cut and I really hope you get the help you deserve! You sound like a brilliant mum, don't give up the fight!

lisa4995

Thank you Loz01. Well it took a week but on Thursday we finally received the award notice I have spoken with DLA today and was given a slightly more detailed reasoning to the cut in her entitlement which I must say was a load of tosh! I told the lady I spokw to (who was actually very nice) exactly what I disagreed with and why and have a fax number to send all my supporting docs and letters so that will be done this week. I am resigned to the fact that mutability will collect my car on May 13th, I can't get an extension as I can't guarantee her claim will be reinstated and the process now will apparently take approx 11 weeks, thankfully I have a little in savings so will buy a used car, I will definitely be requesting that on her next renewal they send me the form 6 months in advance though it took from Dec to April to make the decision (her claim finished on 31st March) and now another 11 weeks. It really is too long

Almost-free

To be honest it seems to matter almost more what you write on the form/how you word it,than the problems your child has. You need to demonstrate a minimum number of minutes that she requires the help/examples and how often in each section. Did you receive help filling in the form? I am lucky that I had a lot of experience filling in forms for other people when I did my sons, but I also took advice from a couple of support groups who really clarified the forms for me,
This is excellent- not really relevant to your daughters problems but it demonstrates what I mean

http://www.cerebra.org.uk/sitecollectiondocuments/books/dla_guide.pdf


They are so repetitive as well- almost as if they are trying to catch you out by asking you the same thing a different way!

I hope you get it on appeal- it really sounds like she deserves HRC and Mobility.