DLA - Concerned my son will lose it when we reapply soon

[cmuir]

Hi

 

I'll be reapplying for DLA for my son soon. I'm really concerned that he won't get it or it'll be cut substantially because of the welfare system changes, despite his needs actually increasing (been awarded over past 5 years - reapplied twice).

 

Anyone any recent experience of reapplying for DLA? For example, how long is it awarded for?

 

Thanks.

 

Caroline.

[Special_talent123]

thing is there be a big change,moving to P.IP soon . When i turned 18 I had reapply but had someone to help. I actually got someone from autistic society welfare person to help me with my ESA form tomorrow.

[trekster]

Mines been awarded for another 2 years when my needs have also increased. i got an indefinite award then my mobility and care needs deteirorated so i had to apply again. They didnt explain that even on indefinite your award can 'last a shorter time'. Now ive got potentially 2 less years because of updating my needs with DLA.

[Sally44]

My son's renewal was some years ago. But they recently sent me a letter saying that his payments had increased. As he has deteriorated over the last year we have put in a request for his care and mobility to be increased to high level support.

 

I had someone from our local Benefits Advice centre to help me complete the form. Apparently it will take about a year for it to be looked at. The Benefits person did say that the hurdle most parents fall at, is when the DWP contacts the school and they say they have 'no concerns'. We are not in that position as his school have been told they maybe contacted, and they will give a true picture of his needs.

 

So I think you need some help in re-applying because it is all about giving examples of behaviours and incidents that fit their criteria. For example we included in our request for high level care that my son can be awake at all hours of the night and insist on having a shower, and that he needs to be supervised by an adult because he dismantles the taps. Apparently it was the potential to scold himself and flood the house that was more important than being awake at 2.00am and in the bath! And that is not something I would have recognised myself.

[Sa Skimrande]

I was on middle rate DLA then when I reapplied, the same criteria, I was lobbed on lower rate and with that I lost the income support as well, so a major hit, I lost just about half of my income which was a pity because I was improving, but severely reduced funds i fell back a long way.

 

Now I am on ESA following the DWP/ASOS assessment I didn't have, where the DLA is I don't know, I have no idea to what I am entitled or even eligible for and I think my HB is wrong as with no income I am paying a third of my rent out of ESA.

 

No carers, no teams, no support , no nothing and online government websites I can't understand so I have no idea where I am at. Of help organisations, they are stacked out with applicants and am so on waiting lists, even the CAB have changed their methods and are not as helpful as they have been in the past.

[Special_talent123]

income support is means tested, where DLA isnt. income support dont count dla on the form. income support is moving to ESA but u have to be assessed if you are deemed fit for work then dont usually receive it, but if u get ESA u go on WRAG or support group. I had to renew mine again although done in novemeber but to be fair my needs have changed which means im not well in myself.

 

I am on middle rate DLA and Low mobility although the change to PIP will be different, which i believe my needs would have changed then i probably have to fill out another form which means autistic society welfare officer coming out to fill the form out for me

 

DLA pays for care for things u need help with.

Edited July 13, 2012 by Special_talent123

[coppertree]

HI, our son lost his dla when he turned 12 years old, they said his needs were no different to any other child his age! We did reapply but got nowhere, that was two years ago and my hubby also lost the ca he got for looking after him. I am just in the process of claiming at the moment as I have just got a diagnosis so wish me luck

[Special_talent123]

u can go a appeal process?

[coppertree]

Yes definately, they expect you to appeal if the decision does not go the way you want it to. I requested a pack from the NAS website which is fantastic for claiming or reapplying, it gives you loads of suggestions for what to put relating to the symptoms of AS and ASD and how to word them on the form. If the decision goes badly I am sure if you contact them they will be able to advise you on how to appeal

[Special_talent123]

I had a autistic society officer come to mine to fill out my ESA form, if it comes a time my DLA needs changing then I will contact them. The house staff maybe good at doing the form but they don't give examples in there and word it wrong so previous ones they had to reword and put the changes in there. They also told me if i need a medical then to contact them

[Sa Skimrande]

I am not good with forms and seeing as there is no help available when I need it, does anyone know of anywhere online that explains it all where I can calculate if I am eligible ? The Joke centre have already said they can't really help me find work and so of the six weekly interviews I have been having, my next one is in three months time which tells me they are losing interest. So I am stuck on ESA and it is not getting better, as of course worrying if one has enough to pay the rent at the end of the month all the time sort of hits one mentally and it does.

[Special_talent123]

I do not understand how your paying rent out of your ESA when u get housing benefit. The only rent im paying is stuff like electric, water a weekly contribution.thats the only thing that housing benefit does not cover.

 

http://www.turn2us.org.uk/benefits_search.aspx

Edited July 14, 2012 by Special_talent123

[Sa Skimrande]

I do not understand how your paying rent out of your ESA when u get housing benefit. The only rent im paying is stuff like electric, water a weekly contribution.thats the only thing that housing benefit does not cover.

 

http://www.turn2us.o...its_search.aspx

 

Well I just tried the link you provided, finding all the information was a bit of a nightmare as I have a rather haphazard filing system including unopened letters, but regards the link the DLA might be wrong in terms of care and I may be able to claim for ESA income related, I also found an unopened letter from the CAB saying my HB is wrong, so some work to do I think if I remember as doing all that I realised I had forgotten to fill in the forms from the council regarding council housing. But that is the problem living alone and having no one to keep an eye ball on what's going on I dip out and things turn to ###### and before I know it I have gone past financial difficulty and degraded to the point I don't care, it happens every time.

 

But benefits , what they are and eligibility I never understood, it has always been too much information or not enough, answers where I get stuck between yes and no and pure confusion resulting in the stuff it scenario which leads to the spiral down.

 

But thanks for the link

 

Now I have to find someone to give me a hand with this as I am on the edge of confusion now after using that link.

 

But yep I have not been getting the correct amount of HB despite a letter from them saying their rent officer says what I get is right, I wonder if they have the correct data to base their findings on.

 

Water and electricity I have letters stating I don't use enough of either, well they would say that, but then I am very sparing with what utilities I use, I ration because I have to, which means things aren't as good as they could be.

Edited July 14, 2012 by Sa Skimrande

[Special_talent123]

try an autistic society they may have an adviser come out to help u

[coppertree]

You could always try the CAB, they are fantastic about knowing how and what to put on forms. Do you have any disability advice centres where you live? There is a 2 month waiting list at ours which is not overly helpful when forms need to be in by a certain date but they might be worth investigating. Do you have a social worker? Again they help with this sort of thing if you can get one, I don't know how to go about getting one but the NAS would if you gave them a ring. But if I were you I would start with the CAB and giving the NAS a call, hope this helps

[oxgirl]

Hi Cmuir,

When my lad turned 18 I filled in the forms for him and just got him to sign them, well, actually I got him to sign the empty forms and then filled them in, but hey ho!! He was awarded lower rater, down from middle rate, but for an indefinite period. It's a shame he was reduced to lower rate because it means he isn't eligible for a consessionary bus pass and I can't get carer's allowance anymore, but at least he still kept something.

 

Good luck.

 

~ Mel ~

[trekster]

Oxgirl isnt the fact that he's at an ASD college overcompensating for his needs? i seemed OK when i lived with my gran but as soon as i moved out things slowly began to decline especially after the structure in my life went. Some areas do whats known as a '10 journey card'. i used to use them before my wheelchair need covered getting a bus pass. Is it possible your lad hasnt told you some of his difficulties that could go on the form further supporting his case.

 

I was on middle rate DLA then when I reapplied, the same criteria, I was lobbed on lower rate and with that I lost the income support as well, so a major hit, I lost just about half of my income which was a pity because I was improving, but severely reduced funds i fell back a long way.

 

Now I am on ESA following the DWP/ASOS assessment I didn't have, where the DLA is I don't know, I have no idea to what I am entitled or even eligible for and I think my HB is wrong as with no income I am paying a third of my rent out of ESA.

 

No carers, no teams, no support , no nothing and online government websites I can't understand so I have no idea where I am at. Of help organisations, they are stacked out with applicants and am so on waiting lists, even the CAB have changed their methods and are not as helpful as they have been in the past.

 

Did you seriously put on exactly the same information on the form as you did last time? Middle rate is when you need prompting to do tasks eg cooking or showering. i would download the taking responsibility report and print out the pages on practical support services.

 

http://www.sacramentoasis.com/docs/8-22-03/taking_responsibility.pdf truthfully underline all the tasks you need help with, then use the benefits and work guides to describe those tasks in great detail. The 'decision maker' has no idea how your minds works (or in some cases how autism works) so unless you describe in great detail what your needs are (trick is to use extra sheets of paper typed out and saved so you have them for the next time) that is how your benefit was downgraded. http://www.benefitsandwork.co.uk/

 

http://www.turn2us.org.uk/benefits_search.aspx has a benefits checker on it.

 

A friend of mine got denied DLA twice in a row. i helped her fill out and describe her needs and she got awarded lower rate for both straight away. We did this online via her scanning in the document as she was filling it out an emaling it to me. i then asked specific questions about what she had written. It took about 13 emails in total but we managed it together. i know my friend though so harder to help a complete stranger.

 

Do you have any form of paid employment? Also you can't get any means tested benefits ie ESA income based (unsure about the name) if your income is 6k or more. If it is between 6k and 16k you can get some means tested benefits (unless the upper threashold has changed) and over 16k you cant get any means tested benefits.

 

Emailing NAS is also an idea welfare@nas.org.uk .

 

To the OP i really hope your son gets the level of DLA he deserves. Good luck to anyone else as well.

 

The CAB in my area are terrible with crisis situation people, they aren't used to autistics and dont know how to

respond to an autistic that turns up and 'doesnt take a hint'.

 

Coppertree hope you get a diagnosis soon.

 

Getting a social worker that gets autism is a minefield, mine doesnt get autism at all or how i present myself

with my combination of disabilities.

[Special_talent123]

is your child under social services oxgirl, if so it is possible to ask them for a blue card that says your child is registered disabled. I had to get one of those from social services to get my bus pass

[cmuir]

Hi

 

Thanks for the replies, however, I was really hoping for some more answers to my original question - does anyone have any recent experience of applying/renewing DLA for their child (in similar circumstances)?

 

Thanks.

Edited July 16, 2012 by cmuir

[Special_talent123]

try this link caroline http://www.autism.org.uk/living-with-autism/benefits-and-community-care/disability-living-allowance/dla-tips-for-parents-and-carers.aspx

[Sa Skimrande]

@Trekster, Ta for the additional links, i have down loaded and will try them at some point when the mind is that kind of mood to understand, as most of the time just looking at such literature makes my mind scream with panic as panic is all I know from dealing with such forms.

 

But the dla, I did use the forms from a previous successful application to complete my last application but the decision was different. The initial application was done in conjunction with someone that knew the key words to use, so I continued with that, but was down graded and well I hit major depression on that and did not come back up for about four months. But that is what I do every time, every time I fail to deal with authority or understand what they are doing, why they have decided what, I just crash and start the destructive thinking process.

 

Of course I have mentioned this to my doctor that I hit major lows, but they say when I am like that why don't I go and see the doctor, well maybe the doctor hasn't got the grasp of major depression, but the idea of going out of the house, let alone to do something positive like see a doctor is something that cannot be done as a major hit is self destruction, one does not want to be well, one just wants to waste away and not be a problem to anyone.

 

But adult AS, experiences no one wants to know and so AS is damned again, depression is bad enough, but add AS to it and it is even worse, it is very much like AS is a deadly contagious disease that no one wants to go near and the 'services', those I find and contact, it feels like I am being fended off with a barge pole it is that palpable.

 

Of course AS in employment when I get into what I am good at and thrive makes for positive business, I know AS is an enhancement, but Unemployed, I am not in business and the AS acts as a further smack in the teeth.

 

I got someone coming to talk about debts on Wednesday morning, I can't remember who sent them, but I will have to see if they are any help with benefits, because one thing is for certain, I can have all the information available in the world at my finger tips, but I can't put it together to sort a form out and so far ringing around various help agencies, it is a case of ''we will call you back'', and they never do, I spend my life waiting for phone calls that never come, I am that trusting of these so called caring individuals, but the point will come where I will not believe anything they say and that is the danger zone.

[trekster]

Being unemployed for all of my adult life i can totally get where you are coming from Sa Skimrade. i try and keep busy with my campaigning and social group work also done a few talks.

 

For cmuir and other parents needing to know where they are at benefit wise....

http://www.cerebra.org.uk/English/getinformation/finance/Pages/DisabledChildrenParentsGuideMoneyMatters.aspx

 

...it covers parents and their kids benefit entitlements.