Facebook DLA group feels uncomfortable

[Furrzu]

My son has additional needs and I am in the process of applying for DLA. I have very little money and would be grateful for anything extra. I'd use it to make a sensory space at home for him, some clubs and for anything else that would help him. We've had a sensory profile done and there's a long list!

I joined a DLA Facebook group that has close to 150k people in it. Honestly, it's very uncomfortable. People posting about whether it's OK for them to use their backdated pay for a family trip to Disney. People going to tribunal to get high rate mobility because their child has flat feet and has to wear insoles but they're worried their child won't get it because they play football, so advised by others to omit this fact. Whether they can save the DLA and ask for UC to not class this as savings as they're saving it for their child for uni.

It's actually made me quite angry but not sure if I am BU. I only wanted advice on filling in the form as it is long and daunting!

So, AIBU? Is this a widespread issue?

I know, I should probably mind my business...

The shift happened at some point I can't exactly state but it went from benefits being for the people in the most need to benefits being something people are 'entitled to' and not based on need.

Whilst I do believe that the PIP process needs a complete overhaul, the fact remains that whether people think that they are entitled to this, or DLA, it is not just handed out because of what they believe. They have to provide evidence, and have proof of whatever difficulties that they are saying they have.

DLA is not based on points.

I agree that lots lack of understanding of what the criteria for SMI are. And that leads to some being frustrated at not being award HRM. The lack of understanding goes both ways. For example, there’s lots that don’t understand you have to meet every aspect of the criteria not just some or most. But equally there are lots who don’t understand some children can still be eligible (so long as they meet the other elements of the tests too) for HRM under the SMI criteria despite having an average or above average IQ (or even a low IQ but above 50) because they are unable to apply their intelligence in the real world so are still considered to have a severe impairment of intelligence.

Most claimants don’t have a F2F assessment for PIP any more. Most are likely to have a remote assessment either via the phone or a video call. A minority still have a F2F. And some have a paper based assessment.

I wonder if they will go back to doing ftf in most cases.

No it isn't you're right.

But some of the main PIP conditions that PIP claims are awarded for, are conditions which 100% rely on the narrative of the person when judging functional disability.

They can provide evidence of a diagnosis, they can't provide evidence of functional disability so it goes on what the person says.

Sure.

It doesn't just go on what people say. They do make ridiculous assumptions even with evidence.

I joined a DLA Facebook group that has close to 150k people in it.

Post a link. We can check it out then.

I know the group you are talking about. You do get people posting who don't understand the level of need required to get DLA (the highest rates in particular ) but they are put right by the vast majority of posters.

OP, your instinct is probably right. There are people who know how to game the system and so they do. In my own family, there are 2 autistic children. One, with their high level of needs, deserves everything they are awarded. The other, in the same family unit, is a world away. But the mother is the same and because of the very high needs child knows how to fill in the forms. So they both get awarded everything. The oldest now has PIP, a mobility car and likely a disabled badge, because one thing opens the door to the next and the next. It's bullshit. The system needs a massive overhaul. People are 'encouraged' by the community to fill in the forms thinking about their 'bad days' but if bad days only happen once every few weeks, it's not a truthful assessment. This government will do something about it and it will be draconian because the pendulum has swung too far in the entitlement direction, so genuine claimants are about to find life getting harder, which is very unfair.

@BrightYellowTrain , I will be honest I’ve always been confused by people have been awarded hrm under smi for average intelligence, because I know families that have had to go to tribunal, when there child has profound learning disabilities. I really don’t understand how the decisions are made .

It doesn't matter how well the mother has worded the application form you still professional evidence backing it up.

Because some children with an IQ above 55 (what was before case law changed it traditionally seen as the cut off for ‘severe impairment of intelligence’) cannot apply their intelligence in the real world so are still considered to have a severe impairment of intelligence. So, as long as they meet the other elements required for SMI they can still be eligible for HRM under the SMI criteria.

Many have to appeal regardless of their IQ.

You have no idea what the needs of the other child is. This family reads like mine - from the outside it looks like I have one very high needs child and another (whilst still autistic) doesn’t have the global/learning disabilities aspect. Both have high rate DLA, because of their evidenced needs. Not because I know ‘how to fill out the form’. People don’t see the issues at school, the years of difficulties with not sleeping despite being on melatonin, the inability to manage basic skills that a child of that age is managing well. Yes my child can talk to you but still needs full help with going to the toilet and bathing themselves. You do not fill out the form based on ‘bad days’, you write about what you/the school have to do to help them every day so they can just about manage the same as other children do without much thought.

Some things are difficult to get professional confirmation of though. For instance the difference between mrc and hrc is night time needs, so it is only the parents who actually see this and whilst a paediatrician may prescribe melatonin, they still have to go on what the parents say about how they are through the night.

Sometimes school can back this up if the child frequently appears tired during the day.

@LostTheMarble with respect, your experience is nothing like the family I referenced.

Unless you work for the DLA you do not need to assess the validity of anyone else’s claim. You can rest easy in the knowledge that people aren’t jumping into Scrooge McDuck style swimming pools of cash at the expense of the DLA. People are allowed to ask questions on a support group, even if you think the answers are obvious.

Unless you live with them every day, with respect I highly doubt you know daily needs and support in every aspect for that child/person.

They will, I would have thought, look at the what the claimant wrote on the form, and look at the medical evidence that they have provided, and that would build an overall picture if what the claimant is saying, is likely to affect them, in the way that they are saying it does. I am not saying that they do not get it wrong. I absolutely think that they do, there have been many a thread on this very topic. To suggest that they just go on what people say, and nothing else, is not true imo.

The oldest now has PIP, a mobility car and likely a disabled badge, because one thing opens the door to the next and the next.

If you are in England, the enhanced mobility component doesn’t always mean someone is automatically eligible for a blue badge. 12 points on the planning and following a journey activity doesn’t entitle someone to a blue badge.

They may apply and be assessed for a blue badge. That isn’t related to PIP and anyone can apply and be assessed.

To be eligible for a motability care you must be in receipt of enhanced mobility. The vast majority of those with ASD who qualify for enhanced mobility are eligible via having 12 points on the planning and following a journey activity. That means someone (or their appointee) has proven they “Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid.”

Just because you can’t see someone’s difficulties doesn’t mean they don’t exist. In order to receive an ASD diagnosis one must have difficulties that limit and impair everyday functioning.

@BrightYellowTrain Given that the claimant in question was able to make bus and train journeys unaided and unaccompanied, I am highly suspicious of what was written on the forms to enable higher rate mobility to be claimed. Like I said, the mother knows how the points system works.

Some of the replies on this thread highlight why some people in receipt of this help should keep it to themselves. Some people on the outside will have little knowledge about the day to day difficulties, but assume that they know everything, and then judge.

Again you would still need evidence to back it up.