For asking a serious non-judgy question about DLA...

[itisnearlysummer]

My BIL has 3 children. The middle one has recently been diagnosed with ADHD. We don't have a lot to do with them because our lives and interests are very different although we live close by so see them at family get togethers. So I am aware that we don't necessarily have all the facts.

Now, the other day BIL phoned DH to tell him that they'd "blagged" another £200 a month because of DS2. By this they mean they get middle rate DLA.

Both parents work and this isn't in addition to other benefits so I'm not bashing!

When my DH asked what the DLA is for, BIL replied that he didn't really know but they were happy to give it to him, so he was happy to take it. Which is fair enough!

So, genuine question for people in a similar position is what is DLA for in this situation? Our understanding previously was that DLA was a financial support for people who might incur extra costs as a result of disability, or because parents/carers might have to reduce work hours/stop working to care, extra parking/travel because of attending appointments, etc. But they've said that none of these apply to them.

Other family members have started to make negative comments about this, but it must be for something and not just compensation for having a more challenging than average child!

dealer, glad you don't need it, but it isn't for you it is for your child,

shoesy actually, he isn't being judged. Not by us at least. Just trying to gain some insight without bombarding them with questions that might make them feel like they're being judged.

And no, maybe he doesn't want to "big up" his sons problems, but he did phone DH just to tell him that they'd got the DLA and he was laughing as he said he'd "blagged" it. Which is hardly discreet!

dealer they only insist you apply: turn down rate is massive. Autistic ds3 was refused at first application after a paed-urged application (at appeal was awarded HRC, as he was then non verbal and incontinent seems fair)- my point is that paerds said we'd get it but DLA said no)

From reading these posts, there is clearly a heck of a lot that requires extra money that people with no experience would have no idea about!

Not all of these situations would apply to my BIL, simply because the issues are different, but crikey, there's a lot that people without that experience wouldn't even think about!

Shoesytwoesy, what would she do with it?

DD1 is now doing very well. She's nearly 20, works in telemarketing, shares a house with 3 other friends in London. I still need to loan her money as she WILL NOT SAVE for bills, but that's just typical teenage behaviour.

She even keeps her room tidy

use it to pay for the stuff she needs, anything to do with sn costs way more, if she isn't entitled to it, she won't get it anyway, even kids with sebere sn are often turned down

It's funny... I always know it's a slog with my three and I'm permanently exhausted but I've never known any different, that's just normal to me. I've never had kids without SN.

It's when I see their peers that I realise just how much extra help my kids have. They dress themselves, they don't just chow down into lunch with their fingers and smear it everywhere. They don't attempt to run off into the road or jump into ponds or throw themselves down stairs. They don't need toddler wrist straps or wheelchairs or anything like that.

Anything can be normalised if you live it every day and don't have experience of anything else. If my mum has the kids she points out just how much slog there is and how she's not surprised we're exhausted.

She's not a teen CD, and most people I know are vaguely on top of it by 20.

it's an acce[ted fact aht spectrum people (ADHD is art of that) fail to manage money well into adulthood. Actually I know someone of seventy whose x happened a decade ago when they blew all their redundancy and ended up with amssive financial issues and the NAS were called in by a suspicious neighbour.

There's a money awareness program out there- I think via the NAS but would be useful for ADHD too. Lots on budgeting for bills etc.

Glitta absolutely. DS4 hs a nusery induction nxt week and dh and I will get to see how he squares up to his peers; will be interesting.

Some kids are OK: they ahve needs that can be met with little cost, there is therapy and education available and DLA is not needed. Others not so lucky.

Only read the OP.

Lots of people who claim DLA do so after YEARS of not believing they are entitled to it because parents adapt and change their lives because they have no choice and often can fail to see how their lives differ or are made more difficult due to the disaibility of their child.

A scary number of children with disabilities, are subsequently living with lone parents as a result of the eventual marriage/partnership breakdown that ensues.

There is also a pride issue and those damn forms are so disheartening and miserable and complicated that I'm sure some people will feel very pleased with themselves indeed to have got through them and filled them in in the right way to get the money to which they are entitled. It really isn't enough to be entitled now, you also have to play buzzword bingo, and you still need a wealth of reports and evidence from independent professionals to support your claim.

Quite often at first people will not realise what it is they can do with the money to improve their lives as they are so used to making do and depriving their other kids of outings, or themselves of a babysitter.

I do understand the feeling that can go alongside explaining to another person that you get DLA, when you look and see their judgy eyes. I probably have smiled and talked enthusiastically about getting my DLA to someone I know would just not be able to handle a story of my real life and the misery that can come with having a child with a disability. I feel similar when judgy people ask where my ds is going to school in September because having a statement means he can go to our first choice in an area with many oversubscribed schools. When people hear of his school placement they are always surprised and say 'how did you get in there then?' and I usually say 'we were lucky we managed to get a statement'.

We are NOT lucky. But these people wouldn't understand. And my ds has a hidden disability which means that they would not tolerate me droning on for hours about why my ds really does need his statement.

Mine goes on special diet, equipment, therapies, making the home safe, training for myself & educational materials for him as I home ed in the afternoons as he can't cope with a school environment.

The form is 50 pages long and I sobbed my heart out when I finished it - everything is in in comparison to a "normal child" of the same age. There were 7 professional reports listing his needs for various specialists to accompany it, that's normal. He only attends school 3 hours a day with 1:1 assistance - that's not "normal", or possible to fake. The bar is set pretty high. He's on medium rate for care.

I can't work - there isn't appropriate childcare available, and if there was DLA would only cover a couple of hours.

To be honest I don't discuss it with anyone IRL - they aren't the ones going to bed at 4 am and getting up at 6 on a regular basis. I'm isolated enough without people pulling on their judgey pants.

Quite bochead

And whilst OP probably never meant it yet again we've somehow become immersed in a htread where we are self justifying life ecents we never would have chosen.

Dammit: I swore to walk away from these.

We are another family here who have adhd in the family and don't claim DLA. I can empathize with cognitive, your dd sounds like my dd, apart from the tidy room. We could do with waste disposal to clear up her mess from front door to bedroom. I could also add things lost as well as broken. I can also see the op pov, my dd would have got to the top of the stairs and shouted, what do I have to do. She was also a constant bed wetter, in fact it was a lake. Funnily enough I have applied to family fund via my ds for things my dd has broken or things due to both there needs. Again this is the norm for us and with 4 older siblings than her, 2 of whom have other special needs and a younger brother who is severe disability across the board, we don't see the extra goings on that she has.

jubilee10 please do re-apply at review for your DS, it'll be much easier to get it this time as you've already done the form before. If you can then get help from a money advice agency who can help you with the process. You are entitled to this money on behalf of your DS. Please, please claim

Nu-labour bribe
Vote for Torys they'll take it away - this is why it exists

It's actually pretty hard to get. DS3 has Downs Syndrome and is 7 1/2. I should have got the mobility part of the DLA 2 1/2 years ago, he is entitled to it. He does get the higher rate care part though, but that was a struggle to get.

It is true that when it is your own DC you forget how different life with them can be or how hard it might be, because you take it for granted. DS3, for example, has only just been able to walk any sort of distance, previously he was in a pushchair. He is still in nappies day and night, he would run into a road whether there was a car coming or not, he just doesn't understand the danger. The same applies to stairs, things that are high up etc. To me, he is just him and I am used to what he can and can't do and how much supervision he actually needs. However, my nephew is 5 weeks older and when I see him it reminds me of just how much a 7 year old can usually do. Most are starting to be allowed some freedom to play outside on their own, will be starting to get their own breakfast/lunch, can be left at Birthday parties etc alone, clubs such as youth clubs and scouts, can be taken places without having to watch them like an absolute hawk or force them to hold hands the whole time so that they don't suddenly run out into the road, they don't have tantrums still, don't need constant supervision in the bath any longer, don't need you at night etc.

Obviously on top of all that there are all the medical and other appointments to attend. Maybe not so many now, but certainly when DS3 was younger, no employer would have viewed favourably the time I needed to attend DS's appointments so for that reason I went self employed and worked restricted hours.

I take it something (un(witty you haven;t spent much time in the SN world?

becuase trust me Labour weren;t overly loved- the systems in palce were pretty shite.

people are re finding it harder under the tories (many anyway) but that doesn;t mean people liked or voted for Labour.

Oh and DLA? Tory Government introduced it.

I would say not but many of students at the PRU where I worked were indeed classed as SN, because with statements come extra funding for schools and for parents.

I don't remember ADHD/ODD existing under Major/Thatcher. It seems to me that these conditions show an uncanny correlation with the funding available, much like 'heavy legs' in France, which is a epidemic

So midori, you are going to re apply??
My ds is 10yo and has down syndrome among others, if you ever need advice for dla etc just pm me.

I'm not happy about claiming DLA for my son who has ADHD, but I need to.

The cost of childcare for him is going to be huge when I start working (if I ever find a bloody job to fit around him) because he needs extra supervision.

He destroys a lot of things some dangerous some not, so needs supervising for that.

He needs surpervising at bed time as if no one is watching him, he will flood bathroom, put water in sockets, he now needs a flush cealing light in his room to stop him taking out the lightbulbs and breaking them.

He needs 1-1 tuition at school, he needs extra help for after school activities, when I can find one suitable.

It's just too expensive to carry on the way I am. It's fustrating as I should have to constanly replace lightbulbs, shoes, paint the walls, bedding, toys but I have to and it's expensive.

Really?

Because we have MRI scans now that show clear congenital differences in people with ADHD. I can get you the exact details if you wish as I referenced it in my last MA essay. Differences sahred by a significant number on the ASD spectrum, corpus callosum IRC. We also knwo that ADHD is often genetically related to ASD. DS2 is beinga ssessed for ADHD, he ahs 3 siblings with ASD. go figure.

As for OCD LMAO. DH's childhood was made nightmarish by a mother with OCD. just becuase we didn;t recognise it doesn;t mean it didn;t exist! (also link genetically with ASD theoretically). Autism afer all wasn;t identified until the 1940's as a disorder, and AS wasn;t know until Lorna Wing translated Asperger's work into English in, IIRC, 1992.

Once upon the time these kids were just written off, we are now beginning to learn about the various categories of need within the range but we have a long way to go- autism will be broken down far further before we are finished. And mroe will come under the umbrella as well, becuase genetics and brain imagery is showing us how these things inter-relate.

As for the RU- if you are a etahcer in a specilaist facillity you should be aware that SEN covers the whoel range of educational need, something the Government is trying to address ATM. PRUs are where the kids who didn't get the help early enough end up (I am based in a SN Base) and where the kdis whose teahcers were appalling end up (I wish to god Sn teahcers were forced to ahve Sn qual, lives would change). PRUs are not a sample from which you can extract statements to make generalisations about all kids with certain disorders. teaching is ot a profession that makes you an SN expert either. By a mile.

somethingwitty82ADHD has been known about for over a hundred years but a lot of these kids where left to fail alot have as adults ended up in prison.My DS was queried at 2 as having it I didn't agree I knew he was boisterous and had LD's but thought his behaviour was a typical 2 year old. By the way he's nearly 17 now so another reason can't possible blame it on labour 'giving money away' as Tory's where still in power then.
As it turns out he has complex needs including probable ASD but you probably think that's an excuse as well.

DS2 has just been picked up as adhd, I too thought it was typical boy syndrome: as the otehrs have ASD and I am from a family of girls I knew no better.

It is the school who ahve raised issues, apaprently he is just like the Head's dx'd nephew. School won;t benefit- there is no plan to apply for a statement and he's year 5 anyway (new head).

We have no plans to ask for DAL for him. The ones that get it are in SNU placements. We can cope with ds2's needs, a lot of the ASD input works anyway and we already do that.

It does however affect ds2. In his SAt-like exams last month he achieved an age 14 for reading but a page into his maths test he wandered off into doodling on the back page, never cmae back and failed to commpplete the exam. This is typical him: he has short term memory issues that really affect him. In fact we are looking at ADD as a dx, although it might be adhd, like I said my version of average is seriously skiw whiff.

All I want to do is apre down where ds2's needs are, and make sure the comp he will attend deals with that. That's not grabbing, it's about making sure he ahs a future idnependent of state icome and gains the skills to self provide.

I would say not but many of students at the PRU where I worked were indeed classed as SN, because with statements come extra funding for schools and for parents.

I don't remember ADHD/ODD existing under Major/Thatcher. It seems to me that these conditions show an uncanny correlation with the funding available, much like 'heavy legs' in France, which is a epidemic
"

Complete bollocks. Dd already gets high rate care and mobilitlty due to severe cp but last week was diagnosesd with ADHD based on her behaviour and where her brain damage is. Clearly tne paediatrician wasnt angling for extra money for us as she gets high rate everything. The paed was trying to solve her awful behavioural issues so we could sleep. She is now starting drugs.
But years of adhd behaviour before it was diagnosed. Its not simple and is not made up ffs. We wont get blaggex money. In fact, should the ritalin help dd sleep we will lose money. She will go down to mid rate care despite need total care as she cannot move or speak. High rate is only givennif theres a sleep issue.

I missed that Riv, holler if any of teh stuff I might have can help OK? Love using my uni stuff to make a difference.

Dyscovery centre: try them, tehy do teh BIBIC style thing but more related to this are big into research etc. they may well be interested in the idea of trying to find ways to help your DD with her additional needs. Theya re university based so really quite good at that sort of thing.