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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

176 replies

itisnearlysummer · 12/06/2011 08:34

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!

OP posts:
Riveninside · 12/06/2011 11:19

Ritalin is not helping yet. Sob. Its just giving her awful awful tummy pain.

somethingwitty82 · 12/06/2011 11:19

How many children diagnosed with ADHD have had MRI? Most will be diagnosed against criteria such as easily bored, restless, destructive
Where is the objective threshold for normal/abnormal behaviour? The threshold is socially constructed, and when there is an incentive to move that threshold for all parties it is easy to be 'better safe than sorry'
IMHO diagnosing children with ADHD is tantamount to giving up on them and slinging drugs in their mouths, there is a total lack of alternatives and puts everyone into a narrow 'normal' threshold, it allows too narrow a scope for neuro diversity and slings mud at those who dont easily pass through the sausage factory that is our education system.
I have rarely seen anyone brave enough to stand up and say maybe we cant cookie cut 'success' and maybe look at alternative ways to educate children rather than simplistic cram and regurgitate certificate collecting.
At the PRU i worked at we took complete charge of diet where we could and offered breakfast and an evening meal with snacks, with nutri supplements with extensive PE activities and a curriculum focused on their strengths rather than the weakness incrementally building up their working memory.
The effects of the drugs on young childrens cardio levels was frightening and I have serious concerns about the long term effects not to mention the self fulfilling prophecy of being labelled a 'poor learner' I also believe there is a gender slant to this, the education system is more attuned to a female learning style and boys too easily labelled as bad learners.

boldbanana · 12/06/2011 11:20

Ah, these threads are brilliant.

They always end up with people feeling they should justify themselves to other people about why they claim DLA for their child. And even better are those saints who could claim DLA for their child and everyone is telling them to but choose not to. Yep, well done - but your implication is that if you can manage without claiming it, why don't others?

Point 1: some people (most that I know) need their child's DLA to pay for things for their children.

Point 2: if your child doesn't need the money right now, it's OK to put it in a bank account in their name for them in the future.

It pisses me off that we need to justify the pittance that is paid for the care of disabled relatives/ children in this country. What I pay out for my son in terms of disability related expenditure far exceeds what he/ I receive to 'help' us. Lucky that I work and earn a decent wage cos we'd be screwed otherwise.

The 'I'm going to blag it and lie/ exaggerate on the form' people don't help but nor do the 'I could claim it but I don't know why people do because we're fine' brigade.

Peachy · 12/06/2011 11:25

They will be diagnosed under the DSM- crieria for ADHD which I shall go locate.

Many with ADHD do not give ritalin (Riv's situation is different). Most feed their kids well. I cook everything from scratch, we eat very well. Home made lentil chilli last night, flafel wraps with home made coleslaw tonight, river cobbler (cheap) veg and new pots on Monday. Sound nutrition. I geta sked into school to help with cooking as they know I am heavily into nutrition.

I agree that boys are easily labelled as bad learners, that it is a female learning style, that medication is scary and a last resort only. As for 'I have rarely seen anyone brave enough to stand up and say maybe we cant cookie cut 'success' and maybe look at alternative ways to educate children rather than simplistic cram and regurgitate certificate collecting' that is exactly what we do (am doing MA in Autism, an MA in SEN runs parallel).

Neuro diversity is worrying in some ways: within ASD it allows people with high functioning diagnoses to make board sweeping judgements about those with more severe impairments under the ehading of 'well this aplies to me'. Neuro diversity hs some merits of course: I coudl get an AS diagnosis, that's confirmed with psychs, but prefer not to and to try and follow a ND philosophy. My boys cannot though, their needs albeit with the same ASD headings, are more severe.

Peachy · 12/06/2011 11:29

DSM croteria, although this is being reviewed ATM. Assessment can be amde by psychs, utilisation of medical testing tools or increasingly through the use of tools such as 3Di which invovle inutting assessments of profesionals and aprents into an IT absed algorhythm based system.

Diagnostic Criteria

Diagnostic criteria for Attention-Deficit/Hyperactivity Disorder:

A. Either (1) o r (2):

(1) six (or more) of the following symptoms of inattention have persisted for at least 6 months to a degree that is maladaptive and inconsistent with developmental level:

Inattention

(a) often fails to give close attention to details or makes careless mistakes in schoolwork, work, or other activities

(b) often has difficulty sustaining attention in tasks or play activities

(c) often does not seem to listen when spoken to directly

(d) often does not follow through on instructions and fails to finish schoolwork. Chores, or duties in the workplace (not due to oppositional behavior or failure to understand instructions)

(e) often has difficulty organizing tasks and activities

(f) often avoids, dislikes, or is reluctant to engage in tasks that require sustained mental effort (such as schoolwork or homework)

(g) often loses things necessary for tasks or activities (e.g. toys, school assignments, pencils, books, or tools)

(h) is often easily distracted by extraneous stimuli

(i) is often forgetful in daily activities

(2) six (or more) of the following symptoms of hyperactivity-Impulsivity have persisted for at least 6 months to a degree that is maladaptive and inconsistent with developmental level:

Hyperactivity

(a) oft en fidgets with hands or feet or squirms in seat

(b) often leaves seat in classroom or in other situations in which remaining

seated is expected

(c) often runs about or climbs excessively in situations in which it is inappropriate (in adolescents or adults, may be limited to subjective feelings of restlessness)

(d) often has difficulty playing or engaging in leisure activities quietly

(e) is often ?on the go? or often acts as if ?driven by a motor?

(f) often talks excessively.

Impulsivity

(g) often blurts out answers before questions ha ve been completed

(h) often has difficulty awaiting turn

(i) often interrupts or intrudes on others (e.g., butts into conversations or games)

B. Some hyperactive-impulsive or inattentive symptoms that caused impairment were present before age 7 years.

C. Some impairment from the symptoms is present in two or more settings (e.g. at school [or work] and at home).

D. There must be dear evidence of clinically significant impairment in social, academic, or occupational functioning.

E. The symptoms do not occur exclusively during the course of a Pervasive Developmental Disorder, Schizophrenia. or other Psychotic Disorder and are not better accounted for by another mental disorder (e.g., Mood Disorder, Anxiety Disorder, DissociativeDisorder, or a Personality Disorder).

Am a bit Shock actually as first time I have read it and ds2 meets EVERY criteria on there. Fuck.

nicevideoshameaboutthesong · 12/06/2011 11:32

statements do not necessarily come with extra funding. ours doesnt, despite DD1 having ASD and semantic pragmatic disorder, and a statement, CRISP doesnt rank her needs above 3 so she doesn't get ANY extra funding, the school are expected to meet her extra needs from within their budget.

MarioandLuigi · 12/06/2011 11:33

Its not something you can just 'Blag'

StarlightMcKenzie · 12/06/2011 11:40

In our LA statements only really come with funding if the parents spend £3k or more taking the LA to tribunal for it.

devientenigma · 12/06/2011 11:40

Ahh Peachy, hope you are ok, if it helps so does dd x

EllenJaneisnotmyname · 12/06/2011 11:42

Sometimes DLA awards do seem a little dependent on how the form has been filled out. My DS used to get HRC but, due to improvements in his sleeping habits it dropped to MRC, fair enough. But my friend, whose DD is arguably more severely affected by autism, ie is in a special school rather than MS with a statement, was only awarded LRC. Perhaps these inconsistencies could be the reason 'some people' have concerns. But please remember the statistic that the fraud rate for DLA is the lowest for all benefits.

StarlightMcKenzie · 12/06/2011 11:42

Somethingwitty I do have some empathy with your argument that the education system is not suitable for many children with a range of SN and that should it be more adequate there might be less 'need' for some drugs in some circumstances.

Riveninside · 12/06/2011 11:43

Somethingwitty - dd has had am mri. Massive damage and huge chunks missing. I dont think the paed is 'slinging drugs at her' by any means and its rather insukting to say so.

StarlightMcKenzie · 12/06/2011 11:44

I agree that there seems to be some arbitrary awarding of DLA which can lead to inconsistencies that mean people feel it is an unfair system. It IS an unfair system, but it doesn't mean that people have made things up. It is virtually impossible to make things up as you need so much evidence.

nicevideoshameaboutthesong · 12/06/2011 11:45

peachy: DD2, 2y 9mo, also meets most of the criteria in that DSM list - she has a dx of HF ASD already...

sometimes its like she's on speed, and usually when i know she's the most tired is when she behaves the worst.

Peachy · 12/06/2011 11:46

Now something I learned from JimJams is that biochem means that kids with ADHD respond differently to Ritalin 9which is after all akin to speed) and if it's not adhd the drugs don;t work

PonceyMcPonce · 12/06/2011 11:47

This reply has been deleted

Message withdrawn at poster's request.

saggarmakersbottomknocker · 12/06/2011 11:48

I do agree that there needs to be more consistency. It's a bit of a joke when an application gets turned down flat initially then gets a high award on reconsideration/appeal with no extra evidence.

We've just had dd's renewal and TBH I don't think I'm going to bother. I can't face it especially now she's considered an adult and probably won't qualify under the new criteria despite qualifying for the last 17 years.

Perhaps you'd like to come it for me ccpccp as you seem to think it's such a walk in the park.

nicevideoshameaboutthesong · 12/06/2011 11:48

peachy: i would disagree with that though - amphetamines and amphetamine-like stimulants will help ANYONE focus/concentrate.

Side effects vary and can overwhelm the positives, but amphetamines were given in WWII to soldiers to keep them awake, alert, focussed, etc. Not just the ADHD soldiers, but ANY of them. 'Go pills' they were called, apparently.

In kids with ADHD, they need the extra help to do so, so it is clinically indicated to medicate them to help them do what most kids can do naturally.

nicevideoshameaboutthesong · 12/06/2011 11:49

at uni, many of my friends were popping ritalin in the absence of ADHD, to help them focus on exams.

Peachy · 12/06/2011 11:50

Saggars that happens a lot doesn't it? Why, I wonder? I mean ds3 is in an SNU- can hardly be a mistaken award.

WRT to renewal if you decied to go for it oen thing I find helpful is tow rite a positive on a pieve of aper for every negative ytou have to wrte fn teh form, then stick it on the fridge to remind you. never send to DWP!

Peachy · 12/06/2011 11:51

Intersting as the lady who told me that has a Phd

I will ask at university (MA in Autism, I will know someone) on Moday for clarification

MarioandLuigi · 12/06/2011 11:52

saggarmakersbottomknocker - I agree. DS2's application was turned down when we first applied, after reconsideration he was awarded MRC, its quite a jump!

EllenJaneisnotmyname · 12/06/2011 11:52

Nicevideo, have you looked at GF/CF diets?

Riveninside · 12/06/2011 11:52

How do the uni kids get ritalin? Its taken a week to get dd script filled with a consultants prescription!

nicevideoshameaboutthesong · 12/06/2011 11:54

Riven: in the US in the 90s, all you had to do was know someone with ADHD - and Ritalin is rx like smarties now, its even worse than it was in the 90s...