DLA - FRUSTRATED RANT!!

[stapo1]

Sorry to you all in advance but this is just a pixxed off rant.
Received ds2 DLA award today, lower rate care only!
He is 3.4 years & we have never claimed a penny, but was encouraged to do by everyone, (physio, occ therapist, SALT, consultant paed etc).
He has CP (mild spastic diplega), global delay, low muscle tone effecting his upper body, mild hearing loss, visual perception problems so cannot judge depth & distance speed shapes etc, asthma & we are waiting for a formal assessment regarding his behaviours, routines & anxieties but the paed believes him to have an ASD.
In my real life this definately adds up to more than 1 hr per day additional care. His morning baths to get him stretched & mobile can take this long without anything else. It took me 20 mins this morning to get a clean nappy on him.
He can walk for very short distances, if I am holding his hand as he falls over all of the time he will walk from the front door to the car, about 20feet. Other than that its lifting him from the car to the pushchair, the combination of his extreme fatigue when walking & being scared of his own shadow means he hardly walks at all.
I am considering asking then to reconsider but was wondering if it is worth the hassle. Does anyone know if they ever change their mind or does their decision tend to be upheld?
It took me long enough to apply with mixed feelings but the money would help, was going to contact BIBIC if we got a good award, but will struggle to find that money from elsewhere.

If anyone is still reading my self pitying rant thank you, any advice would be appreciated.

I;m sure a while back there was a fellow mnetter who worked/had experience with appeals but cant for the life of me remember the name or I would ask

I went to appeal for dd.

It was fine, bit nervewracking as a chap from the DWP was there to plead their side of the case (that doesn't always happen), and I was on my own. The panel were lovely, particularly the doctor who really 'got' dd's issues. We got mid rate care, probably would have got mobility too but I came over all positive and painted things rosier than they were.

We had to wait quite a while for the date. Once you go to appeal, the DWP don't do anymore and you have to chase up any outstanding reports yourself, but you are able to send in further evidence. We did a diary for dd, completely broke down her day and they went through it with me at the appeal. I think it was very useful. I also got the chance to talk through some of the other evidence and point out where the DWP had overlooked/underestimated the impact of stuff. There's a step by step guide to the actual process at www.bhas.org.uk. You must be mindful of the deadlines.

Shout up if there's anything else. Good luck!

Oh Jambuttie (sad)
What a nightmare, I,m sure the last thing you need is the hassle & stress of an appeal, but go for it, you deserve the higher award!
I'm sure there are plenty on here with some good advice.
Doesn't look good for our request for reconsideration either then...our ds2 sounds very similar to your little boy so I won't be planning how I spend any backpay just yet then!
Good luck
Stapo

Thanks folks for the messages

You know I feel crap because I am looking to appeal but he really needs the extra support.

I know it's my job as mum to do these things for my son and really I dont mind but feel the DWP is getting off too lightly too by saying no, I mean if they had to live a day in the life of us i'm damn sure they wouldnt give low rate nothing don't you agree??

I have just phoned them this morning to see why he was refused.

They say that as he is only 2.5 he does not qualify for mobility- knew that anyway.

Although he does need assistance in feedind he does not need more care for a child his age in other areas either day or night

So all the physio he needs, assistance in walking, his clumsiness, turning in the night cause hes painfully thin, falling out of bed need I go on

they really DO need to spend a day with families i think

next step appeal

any tips?

I've just skimmed the posts briefly, so I apologies if I'm repeating what someone else said. I was badly injured in an RTA about 6 years ago (I almost lost my leg amongst other things psychological) and applied for DLA. I filled it out myself, like many of you, not laying it on too think...and I was refused point blank.

I then went to the Social Work Department where they have in their employ Welfare Rights Officers. The women I got spent ages filling out my forms me, matching all the criteria and using the jargon that is needed to "pass". She also accompanied me to my appeal but in the end I didn't have to sit in front of the panel.

I'd highly recommend that if you're going to appeal you ask your social work department about your Welfare Rights Officer. They don't advertise them but they do exist! I wish everyone all the best and I hope you get some good news eventually.

Stapo contact BIBIC anyway, they have a policy of never turning away a family for financial reasosn. Their pack on fundraising helped us get sponsorship, you might also find this.

thnaks hun for the post

i will look into welfare officer at our local social work dept. Do I just phone and aske for an appointment with them or do I explain it's for DLA purposes?

thnaks hun for the post

i will look into welfare officer at our local social work dept. Do I just phone and aske for an appointment with them or do I explain it's for DLA purposes?

thnaks hun for the post

i will look into welfare officer at our local social work dept. Do I just phone and aske for an appointment with them or do I explain it's for DLA purposes?

oops

Worth doing. I will be filling in mine myself for DS1 any day now, but even I find it daunting and I used to fill in social services reports / grant funding applications daily for work!

Hi there,
Sorry it's taken me a while to get back, busy day! Ok, for those of you who are appealing: as far as I know your appeals are time-sensitive so the Welfare Rights Officer is duty bound to fit you in ASAP. I would give local social work office a call and say you would like an urgent appt with a Welfare Rights officer re a DLA appeal. I'm in Scotland and they're always really busy (with the usual workshy suspects!) so don't let them fob you off.

First time applicants, also go down the same route of calling and be persistant. Tell them it's about a first time claim and you really need help.

I can't stress enough in both cases not to put a brave face on things. Even if it hurts your pride or it makes it seems like you can't cope...that's what it's for. These people are professionals and have seen it all. I had a really lovely man doing mine was practiocally gnawing my arm off rather than tell him how bad it was. But it was him that reassured me.

There is also a Carer's Allowance that goes along with the DLA claim which sounds like most of you, as mothers, definitely should be entitled to. I was only claiming for myself so I can't advise on that, but def ask about that too.
In my case it wasn't a lot of money...but when you're in that position it really helps.

Much love Kxxx

Thanks SlightlyFamiliarPeachyClair!
I think I will contact BIBIC his behaviours are increasing slightly & wouldn't mind some input, we still havn't had an appt for his Autism assessment.
His paed has said she suspects HFA, would they still help.
Although I would have to get some clothes on him first, since the weather has improved he won't get dressed, just says "not cold". I don't think he sees the point of clothes if he isn't cold.

thanks kokeshi

i too am in scotland where abouts are you?? i am in livingston

stapo appeal!!!!!!!!!!!!!!!!!!!!!!!!
We got middle rate and higher mobility with dd who has the same visual problems and muscle tone issues but much less other issues than you for oen my dd was dry day and night
I'm astounded - have you included every specialist letter you ever got?
DD has nystagmus vision does your ds have this to? it really affect depth perception and has played havoc with dd and safety

It was the repoerts BIBIC did for us, that I photocopied and sent to his Paed, that got Sam his HFA DX! So yes, they would definitely still help, and it may well help you get to dx 'goal' as well.

Thanks Piffle, we were astounded too.
I did include his last 2 consultant paed reports, detailing his dx, I also inculded, physio & SALT reports but at the time didn't have anything on paper from the OT, but I have received that report now & have sent that too. Until the hospital transferred him to the community paed he was just being monitored by the hospital consultant he had in SCBU, it was only when it became clear that his delays & dx of cp meant that his problems would be long term that we have started to get things in writting iykwim, before that we ere always told & hoped that he would just catch up as it was just a result of his very prem birth.
His consultant also rang me at home to talk through what she was writting in the report for his DLA & was very supportive so I am amazed!
As for his visual perception problems, we havn't been given a name for it was the OT that picked up his inability to judge shapes & distance. He did have retinopathy from birth but was given the all clear by the eye clinic at about 1yr, but I guess they were looking at his sight rather than perception.
SlightlyFamiliarPeachyClair
I will ring BIBIC, just need to phsyc myself up for it..
Thank you both for your help!