AIBU to just want to shout “ other disabilities exist “

[winterplease21]

it seems that everywhere at the moment including newspapers, forums , government are trying to cause debates surrounding the cost of disability to our country. This could be welfare costs, educations costs etc etc

every single one of theee debates turns in to only about those with ADHD and Autism.

the constant comments “ everyone wants a disabled child, they are all teaching eachother to get diagnosis’s “
I don’t have an opinion on this but don’t people realise that not all EHCP granted are for adhd / autism and as quoted the 1 in 10 secondary school children on disability benefits are not all autism and ADHD and there is a lot of other reasons why children may need extra funding at school and disability benefits.

every disability debate I’ve seen just turns on to those with her are nuerodivergent.
im not saying they they are not important but to those harping on how there is too many disabled people like sorry we can’t exactly reverse a brain injury, heart disease and organ failure 😩

The spin on this reporting is completely deliberate. YANBU.

The problem is the country can’t afford to give the current level of support for the number of conditions which are now identified.

No-one gets benefits because they have a particular "condition". Entitlement is determined by the extent to which their condition affects their ability to carry out a range of specific activities and the type and extent of assistance or support they need to do so.

But he didn't pay for a diagnosis. He paid for an assessment

I don't know about anyone else but I wouldn't pay to be assessed if it was highly unlikely that I don't have whatever I'm asking to be assessed for

exactly, i don't get pip because i have DDD, OA & Fibro. I get it because i need aids to do day to day stuff like cook/shower, and can't walk more than 50meters without crutches/a wheelchair.

Same with EHCP.. they're done based on need, the school has to prove it cannot meet need within their budget before one is issued.

You dont get support for s diagnosis, you get support for your NEEDS. A kid can have everg diagnosis under the sun but no on cares if he can live safely and normally as possible.

The issue is that the number or children with needs and the actual needs being higher is increasing.

Why?

More people, more people with needs.
Older pregnancies - pretty much everyone having babies much older.
Better survival in pregnancy and birth.
And probably other things too. A number of my friends who are NOT disabled have disabled children. Trust me, it is nothing we ever expected and it’s heartbreaking.

I think they believe that ‘naughty children’ are being dragged into the ASD/ADHD net and they want to try and prevent that probably because of financial reasons but possibly also because of safeguarding.

I had safeguarding training today and was really interested in new government led policy changes that requires schools to now ‘teach’ values. These were things that parents were historically expected to model -right from wrong, how to act in the world, manners, basic human societal interactions. In the same way that many parents are now handing over potty training to preschools and educational settings we are also now having to teach integrity and morality as though it was a brand new concept. Fascinating.

How many checks and follow ups are done after the award. Do they check that the claimants can't cook or wash themselves. Do they check people really can't walk, climb stairs etc. Awards are given on paper statements from GPS etc and its easy to exaggerate symptoms on the form. 0% fraud means they can't catch the fraudsters because proving they're fraudulent is very difficult.

Everyone at some point will be reassessed. There are no Lifetime awards unlike there was on DLA

The longest award is 10 years

Awards a varying lengths, so.somone might have to do another one three years later
They want evidence from professionals so of you are saying you can't walk evidence from physios ,occupational therapist, s etc.would be very helpful
With mental illness, evidence from CPN,s crises team etc..

Probably because it's mainly those with adhd/asd/anxiety or other hidden disabilities that are accused of faking it which is what most of these 'debates' end up turning into. Anyone claiming you're trying to fake your child's Down's syndrome or cerebral palsy....well they just wouldn't bother would they, they're a 'real' disability. But for some reason the hidden disabilities are fair game. I do see where you are coming from though op.

Well you’re incorrect. Autism and ADHD are known to be under diagnosed .

www.bbc.com/news/articles/cg5vp62dnnro.amp

Yep! I know kids who still have no diagnosis as mask so well. Life is horrendous for them snd their families.

Judging by the high rate of success at PIP appeals, I'd say that the number of PIP applications that are wrongly refused is probably far higher than the number wrongly awarded.

I've been helping clients with PIP applications since PIP started. We have access to good supporting evidence via our partner projects, who are part of the NHS. Our team does approx 200 applications a year and around 25%-30% are initially refused. We appeal most of those (clients don't always want to appeal). All our clients have MH problems and many have physical co-morbidities.

The team as a whole have lost precisely one PIP appeal in the 7 years the project has been running.

Anyone who manages to blag their way to a PIP award that they'r not entitled to deserves a fucking Oscar imo, never mind PIP.

GPs aren't qualified to diagnose asd and of course more people get diagnosed privately, they're not going to fork out 2-3k for an assessment unless they're 99% sure they will actually get a diagnosis.

I think there is a correlation between socio economic circumstances and conditions in some cases

If you're awaiting tribunal and there's no Ed psych report you can ask tribunal to direct the LA to get on and do it and they will give them a deadline by which it has to be done.

Aah some of the old chestnuts here being trotted out.

Support I get for my autism (diagnosed as an adult) - um... I wear earphones in the office sometimes. No benefits, not many things in the way of reasonable adjustments and if anything I work twice as hard to prove how good I am at the job. No benefits or extra support during school - in fact generally I just got beaten up by random people for being "odd" (proof you can't kick the weird out of people). Value of my diagnosis = priceless in terms of the ability it's given to me to understand, manage periods of dysregulation and work to my strengths.

Support DD2 gets for her various diagnoses - severe verbal dyspraxia (had barely any intelligible speech till age 5), dyspraxia, autism, inattentive ADHD... no benefits or any kind - we got rejected for DLA as "X is a well behaved child" (sadly not joking) and I mentally was out of resilience to keep fighting the system. Support in school - she got to sit SATs in a less distraction filled quiet room with a staff member around to prompt her to get on with the paper and not daydream about fucking Pokemon. No other support - she's on the school SEN register and gets bugger all. Behaviourally she is incredibly anxious - but she's anxious in a way of wanting to please the adults around her and make everyone happy... so a dream kiddo to have in the class (scored like 4th highest in behaviour positive points across an entire secondary school last year). Still the diagnoses are of massive value in terms of us knowing where to target what we need to support her with (and when she's just having a nice skive taking the easy option and needs a bit of a rocket up her arse - she's got a lazy streak a mile wide as well bless her). But if you met her in a classroom (and didn't hear her speech which is still "distinctive") you'd assume nothing wrong with her - you don't see the executive functioning, the periodic bouts of faecal incontinence, the massive anxiety and emotional upset we get and meltdowns.

As well as being autistic, having ND kids - I'm also actually trained in autism assessment - so I think I see things from a fair few viewpoints in this argument!

I would say you are wrong about this. While "debates about benefits and stopping / stricter rules" are not specifically saying "if you have autism, this changes, but if you have other disabilities it doesn't" the way the measuring is done vastly disproportionally disadvantages those who struggle to define the exact limitations of their disability and prove those limitations.

Often gaining a benefit requires you/your carers to explain or show that you can't do a task alone. You and/or your carers, generally will be much more easily able to do this, if you/they can:

1. clearly define what you can't do (most things you can either always do, or never do)
2. clearly explain why you can't do these things
3. clearly explain what someone else or some piece of equipment must do to help achieve this task.

If we take a simple everyday task like having a wee. Saying

1. she can't move from the wheelchair to the loo without being supported because
2. she can't move her legs, stand or weight bear, and so
3. someone has to hoist her to the loo and back to her wheelchair each time. Is far far clearer, than saying
4. she doesn't always recognise the urge to have a wee and so sometimes may wet herself if she isn't reminded to go.
5. she may not work out the process of everything she needs to do in the right order, so may need prompting to remember to say take her pants down before sitting on the loo. The reality is that often people with autism may have an intermittent understanding of a task, or they may be highly stressed and therefore distracted and struggle when doing a task in a particular situation. For example someone with sensory issues associated with autism, might use their own loo at home fine, but struggle with the process in a public loo which is noisy and has bright lights. Here they might need help to focus, recall and follow the sequence of actions that make up going to the loo successfully, including cleaning up and washing hands. Explaining why the autistic person needs benefits to pay a carer in order to leave the house (or at least be out of it long enough that they need a wee out) is obviously going to be far harder than explaining the same for the wheelchair user.

YANBU to point out other disabilities exist too.

I think the reason that ADHD and autism are so often the focal point is that for those children and young people who can mask but still need support, their invisible disability is constantly called into question as credible.

It's an easy target for the government and media outlets.

Paying privately doesn't allow medical professionals to fake reports.

You might be surprised to learn case law (more than one in fact) shows the act of dressing/undressing is not considered in the PIP managing toilet needs activity. “any difficulties with respect to dressing and undressing are not to be taken into account with respect to an assessment of whether or not a person is able to manage their toilet needs unaided.” “”toilet needs” means – a) getting on and off an unadapted toilet; b) evacuating the bladder and bowel; c) cleaning oneself afterwards;…”

Also, people do begrudge you. I know you mean well, and think they don't, but they do. Children become adults and disabled adults are - to put it bluntly - a burden. It's all "hard-working families" with scant regard for the people who physically can't work.

My feeling is that if there's so many kids not coping with school that they need ehcps and have to be diagnosed then there's a problem with the school system not the children.

The fact that we have a school system that doesn't work for a significant minority seems barmy, especially if the blame is placed on the children or their parents for not fitting into a system they have little control over and harms their children.

As a parent of two ASD kids one of which had to go to specialist provision and I have recently been diagnosed with autism myself on the nhs at my big age of 37 I DO feel there is an element of parents “wanting a diagnosis for the DLA money” I have friends as teachers and they are saying there are parents deliberately delaying toilet training and other vital skills to try and say their kids have autism etc and it makes me so angry when I know the real life struggles that we actually have as genuinely diagnosed individuals. The stress the meltdowns the lack of communication abilities etc and the fact that it now means there are some (not all) people who now think it’s “just a fad” or “everyone has it” if you say your child is autistic and they need specialist support etc when your child genuinely needs specialist support!
one of my children (the one that doesn’t go to specialist provision) has other very serious and life limiting medical problems too and people get JEALOUS that we get DLA on her on an ongoing basis with no review, when in reality she’s nearly died from her condition 3 times and she may die early …. When I’d hand the money back in a heartbeat to have a healthy child!! Infuriates me to see the keyboard warriors online when they don’t actually know what I deal with as a single parent on a daily basis

Delayed toilet training isn’t going to get you an autism diagnosis let alone DLA.🤔

Struggling parents are struggling parents and I don’t think it’s ok to dismiss parents like this in the same way you don’t want your struggles minimised.