7 year old tube fed child DLA renewal refused :(

wattdallas

Bumpmakesfour wrote: »

Got two of the dreaded DWP brown envelopes land on the mat this morning..was thinking and hoping it was good news but nope.One was acknowledging my request for a reconsideration and the second informed me that the wouldn't be looking at the claim again till 27th sept to give me a chance to submit more evidence.So there you go..me reiterating the whole darn lot has been fruitless and I'm going to have to pin down people to write me some reports.Anone under docs/paeds etc knows how hard it is to track them down so the chasing will be fun!

To really rub salt into the wounds DD has been rotten the past three days..a wheezing,retching,coughing and tired little girl either on the sofa or in bed...seeing the letter telling me she has no additional night needs whilst on night three of draining her stomach contents with a syringe from her feeding tube after her second nebuliser of the night at 4am doesn't sit well with me
So the saga continues......

Whats your daughters condition just wondering

Bumpmakesfour

Will contact my MP in the morning,not sure about the press tbh.

We will be "ok" without the DLA but I don't think that's the point.We use the DLA and carers to pay for the kids activities,DDs clubs that help her mix with peers after being painfully shy from spending a lot of time ill on a kids ward.It helps pay hospital and parking costs -just getting to great ormond street each time costs a packet..We lose the car we use every day,to get to other hospital appts,to get to school each day
So yes we can afford the bills and groceries but the extras that made her life better will be a struggle.
The implications of one wrong DLA award are huge for a family like us...

We get HRC/HRM taken away... we lose motability car..we have to buy car..pay tax/insurance/mot etc...costs thousands..or extend motability lease and pay out of our pockets each month but seeing as though an appeal is likely to take far longer than 6 months we will have to buy anyway.
We lose carers allowance due to rate reduction..bye bye another £48 a week ..
We lose severe disability element on tax credits..not sure how much tbh..
So it's not simply the DLA we lose,it has a knock on effect on the rest of the finances.. I know we couldn't rely on it forever but I don't think I'm in the wrong to believe that as long as the DLA guidelines stand as they are,and my DD needs the amount of care that she does(easily satisfying the citeria btw)that we WOULD be re-awarded.

With the supplementing my income tbh there's not loads I could do right now being pregnant.I'm pretty much tied and can get a call at any time from school to collect her or be in hospital with no notice.No school hour job out there would put up with the amount of time I'd end up taking off. So I'm doing things like Ebaying,and seriously cutting back and budgeting tx to the help of some fab MSE'rs on here.

Wattdallas..She doesn't really have one condition,she has various things resulting from arriving at 27 weeks x

Tx for the posts everyone xx

wattdallas

Oh okay i now understand- i too have a disabled child -good luck and hope it all works itself out

cosmic-dust

Bumpmakesfour wrote: »

We'll already be hundreds down from her award reduction,we have to now pay each month to extend the car lease from motability whilst they sort it and it is stressing me out to the point of feeling absolutely depressed thinking about it all now.

Haven't read the thread, just picking up on this point. Have you actually been in contact with motability? You get to keep the car whilst appealing a DLA decision, if you lose your award they don't charge you for the lease of the car, however if your appeal is successful you must pay back the months that it took for your appeal to be heard.

Bumpmakesfour

wattdallas wrote: »

Oh okay i now understand- i too have a disabled child -good luck and hope it all works itself out

Is that your daughter in your pic?She is beautiful xx

Bumpmakesfour

cosmic-dust wrote: »

Haven't read the thread, just picking up on this point. Have you actually been in contact with motability? You get to keep the car whilst appealing a DLA decision, if you lose your award they don't charge you for the lease of the car, however if your appeal is successful you must pay back the months that it took for your appeal to be heard.

Yep I've spoken to motability..they told me we can extend the lease by six months once the car is MOT'd on the 12th.The way I understood it was we pay the lease fee monthly or pay after the result of an appeal if it's unsucessful.So did I get that wrong??Are you saying that if we lose we don't have to pay?Sorry for being dense

We were also thinking that if the lease can be extended till march,then the appeal is likely to take longer so will have to buy one then,but at least that will give us time to sort funds.

SuziQ

Haven't read the thread, just picking up on this point. Have you actually been in contact with motability? You get to keep the car whilst appealing a DLA decision, if you lose your award they don't charge you for the lease of the car, however if your appeal is successful you must pay back the months that it took for your appeal to be heard.

That's great news for you, Bump!! One less thing to worry about x

Bumpmakesfour

SuziQ wrote: »

That's great news for you, Bump!! One less thing to worry about x

Yup..definately One less thing to stress about xx

Anubis_2

Bumpmakesfour wrote: »

Yep I've spoken to motability..they told me we can extend the lease by six months once the car is MOT'd on the 12th.The way I understood it was we pay the lease fee monthly or pay after the result of an appeal if it's unsucessful.So did I get that wrong??Are you saying that if we lose we don't have to pay?Sorry for being dense

We were also thinking that if the lease can be extended till march,then the appeal is likely to take longer so will have to buy one then,but at least that will give us time to sort funds.

You shouldn't need to pay during appeal. However, it can be dependant on garage, have you contacted the garage where your car is leased from?

Bumpmakesfour

Anubis wrote: »

You shouldn't need to pay during appeal. However, it can be dependant on garage, have you contacted the garage where your car is leased from?

Yup.When I spoke to them to book the MOT they said to contact motability.They were more interested in selling the car to us but after checking the price the offered it to us at on the motoring bit of the forum it's far too high.I'll call them again to see what we need to do to extend the lease and double check on the payment side of things tomorrow.Would be a big relief not to have to worry about the car till next year.Tx