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Karen A

Mum in need of a hug.

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I returned home this afternoon to find the long awaited DLA brown envelope.We have been turned down on all counts.The DLA are not convinced that Ben will need help re mobility for longer than six months.They are not convinced that his care needs are sufficiently in excess of a child of his age for him to qualify for the care component.

Those who have been around a while may have picked up the hints.I had been considering returning to work.It is not really practical to do so because I currently spend two afternoons per week at CAMHS appointments.OH works extremely hard for a mental health trust and we have no practical support with Ben.I love Ben dearly but could not envisage attempting to juggle work with the level of support he needs.

I do not have to go back to work.I should probably be greatful in the current climate that OH has a safe job.However I am getting desperate for some independance.The DLA was not so much about the money.It was more about me feeling that I could describe myself as a carer which is the only role that fits at the moment.

I just end up wondering why I do this.Half the reason Ben has come as far as he has is that we have worked extremely hard for the last couple of years.

Sorry to rant.I am feeling upsett. :tearful::tearful::tearful:

Karen.

Edited by Karen A

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Sorry to hear this, you could appeal?

I receive carers for my son, but only receive a portion of it as I work partime, I would go insane not working, but thats just me, also my collegues are very flexible and will always swap with me if we have appointments, not many jobs would be so accomodating, so I do see your dilema, I would have a go at appealing. >:D<<'> Enid

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Please do appeal Karen. I think they routinely turn down as many as they can get away with. You'd be surprised how many succeed on appeal with very few changes to their original application. All we did was to get an extra letter from the HV and P got middle band. !!!

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Hi again.I am now not just in need of a hug.I now need a punch bag. :rolleyes::rolleyes::angry::angry::angry:

I phoned DLA.Evidently the decision was based on information provided by school.Evidently Ben is very accademically able and does not need more support than other children his age in school.I know Ben is very accademically able....he is brighter than me. :wallbash::wallbash: :wallbash:He also cannot bath himself, make a cold drink,cut up food,go to the toilet alone ,cross a road or cope on his own for any length of time.I know the school evidence was fine and supportive.The SENCO has a son with AS not unlike Ben.The DLA also said the decision was based on the fact Ben does not need significant support in school....he has a Statement for full time support which anyone who knows anything knows the LEA do not give out without good reason. :o

I think the person doing the assessment does not understand AS,dyspraxia or child mentalhealth needs well.

I have asked for a letter re appeal.I have also asked for a review by a second assesor.

I do not know if I would want to go to tribunal.I will have to talk to OH and consider if it is worth the stress.

At least having spoken to DLA I understand the the refusal has more to do with a lack of understanding than anything else.Karen.

 

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I think the person doing the assessment does not understand AS,dyspraxia or child mentalhealth needs well.

 

You should always presume that the assessor knows nothing about AS, etc. If you don't, you end up leaving some stuff out, and that is when you don't get the dla awarded. A lot of it is down to filling in the form correctly. Do get advice from CAB or a carers group on filling in the form.

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Ask for a reconsideration. It will mean that someone more senior reviews the evidence. DS had his mobility cut on renewal because the school in their wonderfully inclusive way said he played football. Never kicked a ball in his life. On review they gave us highest everything indefinitely. We did not submit any more evidence, but they did write to the school. Our parents group gets this a lot.

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You should always presume that the assessor knows nothing about AS, etc. If you don't, you end up leaving some stuff out, and that is when you don't get the dla awarded. A lot of it is down to filling in the form correctly. Do get advice from CAB or a carers group on filling in the form.

 

Hi.I used the NAS guidance which is very good.I was a district nurse for several years and trained with Health Visitors.I filled in many DLA forms for patients.I don't think it was my form filling that was amiss. :huh: ....it might have been CAMHS or perhaps the DLA person did not read it.Sorry if I sound off.It is just very frustrating having professional experience but no ability to get things done. :) Karen.

 

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Karen sending you huge hugs i was in the same position as you it was the school report that went against me. Like your son Callum cannot bath himself me or hubby need to to it as he is 12 and a half he is going through puberty so we shouldnt be doing this.

I remember after the appeal we were up at my younger sons parents night and the headmaster didnt even have the decency to ask how Callum was getting on in high school.

I would definetely appeal again.

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Hi Karen,

 

the appeal for DLA is alot less painful than filling in the orginal form. So go for it.

 

Thanks.That is good to know.The original form was horid.I was not sure I wanted to go through the pain again. :)

 

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For a reconsideration you just phone them and request it and it doesn't affect your ability to appeal later.

 

Thanks.I think thats what I did this afternoon.They are sending me out written reasons for refusal and a form to appeal too.Karen.

 

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My son is academically able he has dyslexia but we did not put this on the form and we get DLA. We got it first time and in a matter of weeks of putting our application in. We get care and mobility. I did not know that DLA measured there intelligence because if it did we would not get it. Just because a child is intelligent it does not make them any more able when it comes to care and mobility than a child who has specific learning difficulties on the spectrum. I have met children who are further down the spectrum than my son who are more able socially than he is. So for the DLA to tell you you cannot have it as he is too bright is utter rubbish.

 

From all the threads I have red on this it seems like everything else - 'a lottery'- It would be interesting to know if the refusal rate is higher in some counties than others, that would make it a 'postcode lottery.'

 

Good luck, I hope you can find the strength to appeal.

 

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Karen, Please do appeal, I had to when J was five as the school was refusing to address his needs in fear they would have to use more money to support him, when the panel saw his reports and evidence that J had severe impairments in social skills, communication, and behavoural they pleaded with me to go for a statement of SEN, J was acedemically bright and has average to high intelligence, but that doesnt mean he can transfer those abilities into all sanerios and he has severe impairments in many developments so just because the child is bright does not mean he does not have any needs, there is a 13yr old at Js special school doing a Science and Maths GCSE yet he has severe ASD and other significant needs.

 

The fact that you have supplied evidence to prove your son has intensive support from CAHMS will address his needs, it may be that school have not recognised fully his full needs.

 

Anyway I would appeal.

 

JsMum

 

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Karen it sounds as though you have a strong case for appealing - go for it.

 

I'm grateful that the DWP never contacted L's school for information when I applied for this.

 

Chin up - it's not over yet!

 

>:D<<'> >:D<<'>

 

K x

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My son is academically able he has dyslexia but we did not put this on the form and we get DLA. We got it first time and in a matter of weeks of putting our application in. We get care and mobility. I did not know that DLA measured there intelligence because if it did we would not get it. Just because a child is intelligent it does not make them any more able when it comes to care and mobility than a child who has specific learning difficulties on the spectrum. I have met children who are further down the spectrum than my son who are more able socially than he is. So for the DLA to tell you you cannot have it as he is too bright is utter rubbish.

 

From all the threads I have red on this it seems like everything else - 'a lottery'- It would be interesting to know if the refusal rate is higher in some counties than others, that would make it a 'postcode lottery.'

 

Good luck, I hope you can find the strength to appeal.

 

Hi.It is not supposed to be assessed on the basis of intelligence but of help needed with activities of daily living.However it appears that the person I spoke to on the phone did not know that. :whistle: Karen.

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Hi Karen

 

I'm fairly sure Stephen Hawking qualifies for DLA, and bright though I know Ben is.....

 

Like everyone else has said, I'd appeal. I'd also try and get a look at the evidence the school and CAMHS put in, so that you can deal with that on appeal if you need to. I haven't done the appeal process personally, but if you need a second opinion on anything you want to submit, you know where I am.

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Hi, karen.

 

i hope i can help a litt;e withthis.

 

When I applied for myself for DLA I was turned down for everything.. I called and was offered th eopportunity to go through th eforms with an advicsor. When I was filling in the brief description, I had said I use crutches for short journeys and a wheelchair for long journeys. (Unfortunately its now wheelchair for all journeys) She asked do you weight bear. I told her i didn't, exept only very occaisionally, to rest my hip. She said, well will change it to swinging through with your leg and say you don't weight bear as what I was doing wasn't proper weight bearing while walking, it was stopping and putting my foot down. I did and got full mobility and low care all based on that one change. One missing or wrongly worded bit and you're refused. Of course, that works to their advantage because some people will just guve up at that point.

 

Another thing I was told when filling out my son's, was do not put ASD or AS on the dx part. Apparently DLA takes a dim view on these terms and just sees them as minor concerns. Even though my son had a DX of AS, i was told to put Autism on his form. Its no lie, he is autistic like all AS kids are, but they can look at the same set of concerns and issues for one child with 'AS' and another with 'autism' and think they are a world of difference.

 

Did you rememebr to put lots of 'needs attention' and 'needs 'supevision' throughout your form? I swear they just count those up and make their decision based on that! (joke)

 

It is worth calling and going through the form with someone. They might be able to point out where you need to change things and also what you say to them is recorded and can be taken into consideration. Well it was like that 2 years ago, i don't think it has changed much.

 

Also, thye should not consider how things are whne interventions/assistance are used such as timetables, visual reminders etc. Like I now ho have a shower stool so i can shower but if i neede to re-apply, I would still put I cannot use an ordinary shower, i must have a stool, and need supervision in case of fall. I wouldn't put, I can shower as long as I am supervised. Then they would imagine me happily standing up like anyone else.

 

So say you have a getting dressed checklist, and it works. Don't put he can get dressed without help! He isn't getting dressed w/o help!

"He needs attention while getting dressed or he will not get dressed" Ok, you may no be in the room giivng him hands on attenetion, but you needed to teach him the checklist and ensure he is still using it and check him when he is dressed to make sure its all there. I do not see this as an exagerration. He is getting attention, I give my son attention as in, i have to choose his clothes or it'll be shorts plus a wooly jumper and his walking boot socks plus a dressing gown! I lay them out in the same place, show hime whats there, each item, lay them in getting dressed order then remind him a zillion times to get dressed! Then i invariably have to untuck jumpers, pull his jeans out of his sicks, etc.... you know the routine!.. That is attention, not supervision. As the woman said about me, at any point do you have some one physically assissting you before, during or after getting dressed? For me, it was no. I do similar stuff with my 10 yr ols but thats just his laziness. He has SpLD and is atatemented but I knw if i said, get something warm on we're going out, he'd do fine, might not match but it'd do. I know I am telling you loads you already know but its easy to not see the truth of how much we do when we are so used to doing it. Go through and see if you have really, really enforced the extra needs your son has.

 

have a really good phrase ready for the 'intelligent' comments, should it come up. Personally, I would say something like,

 

being academically able in the structured, predictable environs of the classroom does not equate to being socially and emotionally able in the home and the outside world. Intelligince bears no relation to the needs of the autistic, to his self-help skills, to keeping safe, to personal hygiene etc..... They are as different as a skyscraper and a pig sty. Having the first does not aid his ability to acquire the second.

 

Oh, that sounds a bit sarcastic. But I have had this, from schools. he is intelligent, therefore he should be able to learn these things....

 

I better finish up before this turns into an essay.

 

Connor gets low rate mobility and middle rate care.

 

PLease do think about asking for a re-consideration and talk it through on the phone. This is much easier than going straight to appeal. I wish you allll the best with this. You are describing my son and so many other children on this site, no doubt, many of whom successfuly have won dla.

 

good luck

 

 

kelly

x

Edited by Kookoo123

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Hi Karen

 

I'm fairly sure Stephen Hawking qualifies for DLA, and bright though I know Ben is.....

 

Like everyone else has said, I'd appeal. I'd also try and get a look at the evidence the school and CAMHS put in, so that you can deal with that on appeal if you need to. I haven't done the appeal process personally, but if you need a second opinion on anything you want to submit, you know where I am.

 

Thanks.I asked the DLA to send coppies of the evidence out.

I'm fairly sure Stephen Hawking qualifies for DLA, and bright though I know Ben is..... :lol::lol: Karen.

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Karen,

 

Can't agree with Kelly more, I think it is imperative that you give a full and frank description giving a clear illustration of your son's condition, I remember remarking on the application form that austisim is a life long condition without cure or recovery.

 

My son gets High Rate Care and low mobility.

 

Oh yeah, love the Stephen Hawkings bit, so true so very true :D

 

Hope you are feeling a little better about things today, might be worth giving the subject a break for a couple of days to re charge your batteries and look at your application again with fresh eyes.

 

>:D<<'> >:D<<'> >:D<<'>

 

Clare x x x

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Karen,

Hi I applied for DLA a few years ago before my daughter was even diagnosed with anything, although she did have hospital appts for her bowels.

I was refused, I did appeal, and although daunting, it was worth it.

At the review stage the award was for high rate care, low rate mobility, with a view to it being high rate when it was time to apply again.

 

I did not re apply as everything was improving, how wrong i was.

I am still deciding whether to apply again.

You are correct that it is not down to how you filled in the form, I filled in my own form and at the time this was my job for others, I also had support from very senior staff as well and it was still turned down!

But.....at the review meeting, when I was asked questions, my ability to answer questions without looking at my notes, and my obvious distress at talking about my child's needs did make a difference.

I did point out to them that it felt like begging, but it was more about the recognition of how much support that drove me on.

 

Karen, I don't know if you have done this but it may help to get your needs assessed.

As a carer you have the right to ask your local social services to assess your needs.

This is always worth doing, it is not something I think is routinely offered but it is available. Even if they can not meet your needs, to have your needs recognised is worth it for this kind of thing.

 

Good Luck,

 

Nic x

 

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Do appeal! It's dead easy, even if it gets to Tribunal - the form is only like 4 pages!

 

In the last 15 months, J went from mid rate care and low mobility to NOTHING to mid rate care and low mobility again to high rate care and low mobility to high rate for mobility and care!

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