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!

valid tabulah

DS's education is being affected, he is bright, 10 and within a very good aacademic school, in a small class (18).

I think if it were not something to be noted we'd ahve sorted it by now, and he goes to a 30 class size next term so I suspect the situation will explode.

But DLA is not based on means or income. The rules are the rules. You cannot get in a tizz about someone well off with a disabled child getting £20 a week that they are entitled to by the rules of the benefit any more than you can get a bee in your bonnet about the fact they are 'probably' claiming child benefit.

DAvid Cameron got DLA

Which he shoud ahve done

But then I think hmph tat Tory voters tell off poorer famillies for claiming it becuase of cuts]

How does that work?

Perhaps it should be income related, I don't know? But it's supposed to be for the disabled person, not their parents or carers, and they don't often earn much. If it actually costs more to administrate the means testing than just having a straight same for all payment, then so be it.

I am not in the best place to comment but no benefits earmarked for a specific purpose should be given as cash as they are frequently not used for the purpose given i.e. winter fuel allowance

HB and milk tokens are not given as cash for a reason.

Money pooled to meet a common need leads to greater efficiency gains and better outcomes with cooperation and collaboration.

I am yet to be convinced medicalising ODD/CD is of benefit to children and I think anyone who has seen a child wrap a chair around another childs face because they wouldn't listen to them and say "its not my fault I have a medical problem" would disagree

HB is frequently gicen as cash to private tenants

peopl trade milk tokens, or like when we had them find them useless as theyc an;t be used for special diet milk. cash could be.

' think anyone who has seen a child wrap a chair around another childs face because they wouldn't listen to them and say "its not my fault I have a medical problem" would disagree

'

My child does that a LOT, through his ASD. I disagree.

'I am yet to be convinced medicalising ODD/CD is of benefit to children and I think anyone who has seen a child wrap a chair around another childs face because they wouldn't listen to them and say "its not my fault I have a medical problem" would disagree'

But this isn't a thread about access to medicines or justification for violent behaviour, it is about what DLA can be spent on, and the truth is individual children with indivdiual families have individual needs.

The truth is also (I think you might agree) that many of these children are being failed by those people who are PAID to be helping them. This is one very small way for the parents to fund some element to their support that they believe will be beneificial without having to jump through beaurocratic hoops, even if the support is simply replacing their child's Iggle Piggle every month or replacing the regularly broken door in their child's bedroom.

Well said starlight

Can I have our diesel in vouchers for my ds needs, double the dla. And thats before all his other needs!

Still not listening to somethingwitty.

Lots of people have 'needs'

I don't buy into communitarianism, it leads to the 'soviet man'.

Without consequences there is little incentive to improve.

Many parents have shared needs and where it can be effective the state should provide resources not money.

Did someone speak? No, I didn't think so.

'Money pooled to meet a common need leads to greater efficiency gains and better outcomes with cooperation and collaboration'

Somethingwitty, - I am having trouble with your incongruity. Are you generally right wing or left?

'Many parents have shared needs and where it can be effective the state should provide resources not money'

Well when it does, I'll happily give up my DLA, and additionally I'll pay more tax!

I also swore to myself that I would hide these threads, am already feeling depressed and despondent.

However, I feel I have to say this:
I get DLA for dd1, who has AS. To all of the posters who say that we should receive resources, not cash - you need to walk a mile in our shoes before you judge.
It would take hours to explain on here how our lives are affected by dd's condition, and I honestly don't have the mental energy to do so at the moment.

Filling out the epic DLA form almost broke me, it was one of the most soul-destroying experiences of my life. It's a complex procedure which needs to be backed up with a mountain of evidence. It definitely isn't something any parent undertakes lightly.

Peachy thank you for your eloquent posts and for all of the work you do to raise awareness on this forum -it's appreciated.

I wonder if part of the issue about people not believing someone with ADHD/ASD/ADD/Dyspraxia, etc should get DLAis that these diagnosis have only become more common in the last 10-15 years?

I have worked with children and families struggling in different ways all my life and have provided at home respite care for disabled children. But it was only about 22 years ago that I came across the first child I had ever met who was diagnosed with dyspraxia.

I did know children from the beginning of my working life who were diagnosed with ADD, but this was a very rare diagnosis that many people had never heard of. Similarly children were diagnosed with autism and trainers/professionals would talk about how everyone is somewhere in the autistic spectrum, but I had never heard of a diagnosis of ASD until relatively recently.

Neither I hate that dichotomy and feel it no longer makes any sense, the last labour government was right wing (detention without trial, spying, hate crime)
and the condemns are mainly left wing (may work pay, equal opps)

I am described alternately as a marxist and nazi but philosophically subscribe to the Sottish School of Common Sense and believe in evidence based policys though I would class myself as a libertarian politically and there is no party that represents me.

Lesley

ASd is a new dx that is desiogned toa cknowledge that children move along the spectrum in terms of skills and a wider definiton is useful. For example a child who was non berabal but then agined speech (as with a friend) might well be barred from HFA facilities if their diagnosis is autism.

Aspergers's has only been a dx since the early 1990's when lorna Wing trnasl;ated Hans Asperger's work into English (though having read Kanner and Asperger I'd suspect half of Kanner have AS and half of Asperger's Auytism LMAO). However the NS did a retrospective study where they looked at the people on LD wards eyars ago and found that actually, prevalence rates haven't changed that much: just the titles given. And AS was also often clunted as childhood schiozophrenia also.

Something do you think no party represents yuou becuase prety much anyone infomrd thinks you talk nonsense, perhaps?

Ah yes, that explains it!

Informed on what? ad hominem attacks?

Something do you think no party represents yuou becuase prety much anyone infomrd thinks you talk nonsense, perhaps?

somethingwitty, I wish I could figure it out. I don't think you talk complete bollox but the sense you do talk is embedded in it and it just confuddles me.

Since when was Equal Opps a left wing policy for example?

I think there are three possibilities here , OP.

a) you are a troll and have made this whole story up

b) your BIL is cheating the system, and has lied extensively on the (very complex ) DLA form

or

c) your BIL's child does in fact have very severe SN, but you just don't know it as you (in your own words) "don't have much to do with that family" In which case get off your high horse and go round and offer some help.

It is a nightmarish form to fill in. and they say no to all but the most severe of cases. You certainly wouldn't just get handed the middle rate DLA for a mild case of Special needs (which ADHD isn't by the way, come round mine if you think it's easy - my boy has ASD and ADHD).

I haven't read the whole thread. Middle rate DLA care means that the main carer can claim carers allowance or the underlying eligibility. This means that their NI contributions are topped up so that they do not miss out on a pension because they cannot work full time because they are caring for someone. It is a way of running the system at minium cost, means tested benefits are expensive to administer.

Middle rate DLA care is to pay for the extra cost of having a disability. Most children that get middle rate care cannot access (for a variety of reasons) mainstream lesuire activities. I have found that this becomes more noticible as the children get older. People who are disabled earn less and suffer greater poverty over their lifetime (and their carers), they are also excluded (marginalised, to use a SW phrase!) from alot of what mainstream people take for granted, The aim of giving of disability benefits is to try to counteract this. It is cheaper than providing social care provision (and enough statatory run lesuire facilities) if families are given help to care for their relatives. Otherwise one problem impacts on another ie disabled child and shortage of income.