DLA help needed please...

[jjollie]

Hi, Im new here and looking for a bit of advice. My DS is almost 19 months and about 2 months ago i applied for DLA for him as he has mild cerebral palsy and chronic lung disease (which is now, thankfully, mild) due to being very premature. When I applied he was not crawling or rolling over but in the last two weeks has learnt to do both. He is now crawling and cruising but still cannot get himself sitting up or hold his cup or bottle. He has stretching excercises 2/3 times a day and constant play therapy - eg teaching him to stand with his feet flat instead of toe walking etc. Shortly after i applied DLA wrote to me to say they had requested a report from his physio (who he sees on an almost weekly basis)but she hadn't bothered to reply. When i saw her this week she was really pleased that he was crawling and said that there's no point in her filling out the form as he can now crawl and there's a lot of other kids who are worse than him! In the next breath she told me that the only reason he has done so well is because i spend so much time helping him! Would like other peoples experiences - do you think he 's entitled to DLA? Will DLA write to his consultant instead if the physio doesnt bother to reply? any help or experiences would be appreciated.

I think he is entitled to apply, don't let this person fob you off.

I think your physio is confused. It isn't about how 'bad' he is. It is about how much care he needs compared to a child of the same age.

Thanks for your replies. It already felt strange applying because as far as I'm concerned,ds is totally 'normal'- he's my only child so I don't know any different- but the physio made me feel as if I was making it all up!
Does anyone know if I can ask dla to contact ds's consultant? I did put his details on the form but dla obviously decided to contact his physio instead.

It's upset me that you have met such an unhelpful professional when you are a mother with a baby who needs help and support.
Do ask your consultant yourself for a report asap, have the report sent directly to you for a pre-read to verify it contains all the details you need & is a true representation of your childs condition & needs, then post it off to the DLA to have them place it on file. This is important as it will speed things up and give support to your claim.
I think you may be asked about why there's no report from the physio seeing as dla have requested one. If the physio writes to dla with her personal opinion it will obviously have a bad outcome. Better she doesn't. If her report/no reply is questioned (hopefully it won't if the consultant's report is considered sufficient) then I'd quote "...because there's a lot of kids worse off than him..etc" in a letter to show that this is a person is acting with personal bias and prejudice - which she evidently is as it is not her place to judge whether a child should get dla or not and it is unjust and unprofessional to make light of an individual child's needs by making unfair comparisons with others.
Good luck x

Your physio has just demonstrated her ignorance with regard to DLA.

Your ds sounds very similar to mine, he has SDCP, crawled at 18 months, cruised at 21 months and at 2.9 yrs can walk with a kaye walker but is still way off walking unaided.

You are absolutely entitled to apply for DLA, we were awarded middle rate when ds was 2.3 yrs so should think you would be eligible for at least that also. I also felt slightly fraudulent claiming, however the money is there for people like our children who have different needs and challenges above and beyond other children their age.

The older ds gets the more obvious his differences become and dealing with his mobility becomes harder - its much easier carrying/getting in the car/getting in pushchair etc etc a 19 month old than a 2.9 yro! Whilst my ds's cp is also mild it still has a massive impact on his life/development and ability to access and experience all the things a NT child his age can.

Claiming DLA has certainly eased the financial burden for us, things like clothes and shoes getting worn really quickly and buying a suitable pushchair for him, I am also starting to save for a lycra suit for him as they are not funded by NHS in our area.

Do you see your physio at a child development centre or similar? We do, I was not happy with our first physio for several reasons so spoke to lead physio there and ds was moved onto her caseload instead - I would def consider talking to someone about your physio as she is giving duff advice which could be detrimental - and she could have a detrimental effect on your claim. Also, there is a specialist HV at our CDC who advises on all sorts, I went over my DLA form with her - both she and our physio were v v proactive helping us access all appropriate services/benefits.

We were awarded DLA within 2 weeks of applying, I think this is probably quite quick from reading other threads and don't know whether this was due to whatever i'd written or the support from physio or both.

Good luck with everything.

Thanks everyone. I think I'll definately phone the consultant tomorrow for a report- he's always been fantastic with pushing for treatment etc and seems to take the fact that ds has scp , albeit mild, much more seriously than the physio.
The physio is based in a CDC, but I have a feeling she's in charge! I've been thinking for a while that I'd quite like to change, at the moment lots of appointments get cancelled due to her sickness, which is frustrating.
I'm so pleased that you all agree that I was right to claim, as she made me feel quite guilty for doing so, even though when the consultant asked her a few weeks ago, she stll wouldn't say whether ds will ever walk unaided.

jjollie just reread my post and what I was, rather clumsily, trying to say was don't feel fraudulent about claiming as whilst carrying etc your DS at 19 months is not easy its a darn sight harder the older he gets and the money does make things a bit easier.