Is it possible to have a sensible discussion about disability benefits?

[Pjnow]

According to Google 10% of working age people are in receipt of PIP and 6% of 0-15yos receive DLA.

I'm a proper lefty who believes absolutely in the welfare state, a safety net and that we should care properly for those with disabilities. A society should be judged on how it cares for its most vulnerable.

However 10% in receipt of disability benefits can't be sustainable. I know many people receiving PIP also work, it's not about that.

I'm just wondering what (if anything) can be done to make sure those who need support get it, without paying it to 10% of the population. I know not all disabilities are visble etc, but 10%?!

You do realise that i'm advocating for it being removed across the board. Including my family if that happens?

Yes if that did happen you'd have to cut your cloth.

In your opinion.

you've repeatedly misrepresented what i've written. It's very clear you don't like or agree with my opinion but as i've wrote multiple times, it is my opinion. Disability benefits need to be looked at.

Of course I realise that, but as you said - you’d be okay.

Spare a thought for those who wouldn’t be. It’s not always possible just to “cut your cloth,” and not everyone has the fortune to be able to plan for a disabled child.

As I said to you yesterday, ours is already cut. We work very fucking hard to make sure it is. DLA is our top up.

There are people who really rely on that money. Advocating to make them worse off is callous, and in your case hypocritical if you’re going to keep claiming money you don’t need in the meantime.

I have not misrepresented what you said.

Yes, my opinion. Just like you keep pointing out you can have one, so can I.

Why? Or is it so the conversation can be shut down?

I think we should be discussing benefits and how they're funded as a society. We should be discussing disability, we should be discussing pensions, the education system, asylum seekers etc no conversation should be shut down about any cost to the public. We should all be able to have open conversations.

The thing is i've repeatedly said those who are severely disabled should be looked after. I've also repeatedly said i believe in a welfare state but it is being abused and needs a reset.

"My point was removing pip won't impact many with the most need as it's removed anyway."

It will impact everyone on CHC which includes lots of those with the most need.

Of course you describe their worst day.

My daughter is capable of walking with crutches. That is her best day. On her worst day, she can’t walk at all, meaning she needs help with pretty much everything and relies on a wheelchair. The benefits she is entitled to means we can provide the things for her which protects her independence, which in turn protects her mental health.

Without those benefits, we could not provide her with the car she needs to be able to get out of the house. (The “free” car that we’ve just had to pay £3,500 for). She can’t travel by public transport because there is no safe route to the bus stop for her (no dropped kerbs, no pedestrian crossings, cars parked on the potholes pavements etc). Without those benefits she is entirely reliant on us for lifts everywhere as she wouldn’t be able to learn to drive, we couldn’t afford to insure a car for her. She wouldn’t have a blue badge to allow her/us to park where she can get out of the car. Ask anyone with a teenage daughter what it would be like for them to need their parent or another adult with them 90% of the time, to have to ask them to help her clean herself after a particularly heavy period, to need to ask for help in the middle of the night when they are unable to turn over in bed, to have to depend on their parents just to go to the cinema with their friends, every single time. Not tell me that if that only happened once a fortnight, that would be ok.

We wouldn’t be able to pay the “disabled tax” for holidays where our costs are around 30% higher than for non disabled families. We couldn’t afford to supplement the basic NHS and LA provision for her.

We have already had to entirely change our working life because after school and holiday provision for disabled children is woefully inadequate. I have 3 meetings at school for her since the beginning of term, and another next week. All this has impacted on our salaries. We’re fortunate to have decent jobs, but the costs of having a disabled child are very high. Even if her worst day is 1/7, or 1/14, you can’t predict when that will be, and the things you have to do to prevent the worst day are time consuming and costly.

Also worth noting, these applications are backed up with medical evidence of a child’s needs. If a claimant over states the problems, the medical records will prove them wrong. Given how damned depressing it is as a parent to sit down and fill out a form that makes it plainly obvious how difficult and different you and your child’s lives are, I don’t know anyone who would willingly put themselves through that.

You shouldn't describe the worst day because youre supposed to describe an average day.

You said the current system is unfair as 2 children with identical needs can get very different provision if one of the parents has the privilege to fund assessments/advocate strongly for their child.
So how would you redress that unfairness without removing parental input?

The system does have flaws. DS3 has EOTIS now, but was on roll at an independent SEMH school for 1 academic year. He attended a grand total of 120 sessions on paper, but he was getting the afternoon mark as i picked him up just after registration, at the school's request. He stopped attending at all in the February, but the school was paid in full for the academic year. About 70k.

His EOTIS package is under 10k as he can't cope with much atm

You can describe your worst day. What you shouldn’t do is make out every day is a worst day if that isn’t the case. For most people and the majority of criteria, it is the majority of the time that counts, but there are some situations where that doesn’t apply and one can meet certain criteria without satisfying the majority of the time element.

Can you please clarify. 10% receiving PIP or 10% receiving disability benefits?
There are other disability benefits eg IIDB.

What counts as severe? Where is the cut off?

My daughter sits in the “too disabled but not disabled enough” category. What happens to her if her benefit is taken away? She becomes less independent and more reliant on state services. She would be less able to engage in life like her peers do. She would struggle to access tertiary education, will end up with a lower paid job (or any job at all) and will need out of work or income related benefits, as well as paying less tax. The benefits she gets has allowed her to have a life where she is headed for studying medicine. By taking them away, you severely impact her quality of life and her future prospects, and her ability to provide for herself.

We already don’t do enough as a society for disabled people. Suggesting we cut their benefits in order to make a tiny saving now which will make no difference to the £BBB of a problem in the economy is not only a callous thing to do, fiscally it is very short sighted.

If on chc at home they shpuld be having their needs met but yes i agree they would lose their pip. In residential i believe they already lose the care component depending on who funds what but they'd lose the mobility (i think, i'm genuinely not 100% so happy for you to correct me).

Cuts need to be made though. Things can't continue as they are.

On an average day, my daughter doesn’t need a wheelchair. Do you think it’s ok that on those days she is effectively restricted to the house, unable to eat or sleep, with very little we could to to alleviate her suffering? How many days in a month is it ok for her to do that?

The application doesn’t make it possible for most people to do that.

In residential i believe they already lose the care component depending on who funds what but they'd lose the mobility

Rules surrounding benefits for those receiving CHC funding in a residential setting, depends whether the placement falls under the hospital rules or not (not all with CHC funding will fall under hospital rules) and the age they move into the residential setting. For some, both components continue to be paid indefinitely.

It's not for me to address but it does need addressing. We currently have a two tier system which isn't right. Continuing with things the way they are just means that the kids right at the bottom get no or very little help while those with means get their needs met.

I think the send system will get overhauled, i'm hoping they bring in accountability but my guess is they'll remove many of the legal protections families have because the system is too expensive.

I fill the forms in regularly. You can. People can add extra information including on extra sheets if necessary.

There are no good or bad disabled people / people on benefits. There are people who genuinely need varying levels of help, some people will need it forever, some for a period or time and then there are the scroungers and freeloaders.

Its disingenuous to believe that everyone claiming benefits actually should receive those benefits. Its is also unrealistic to expect taxpayers to fund ever increasing costs for a system that does not address waste and that cannot be audited.

The social contract requires both sides to do their part.

It's not up to me to make those decisions.

Describing a worst day throughout the application as an every day isn't right.

The compassionate answer is that it’s okay for zero days.

It’s never okay to leave anyone’s child struggling with no relief available, to save the taxpayer a few pounds.

As you can see some people don't care whether the system is being abused or is unsustainable they want tax payers to just shut up and pay them what they are 'entitled' to.

But then by putting just worst days you're saying you're more disabled than you really are

I suspect because of the amount of people that only described worse days is part of the reason for all the reforms

We describe an average day, because in all honesty every day has one challenge or another in it. Everything on our forms happens regularly “enough,” there’s just lots of it.

Our “worst days” are at a minimum every other day, in some format. This week’s is smearing. Last weeks was trying to climb out of windows. The week before might have been ripping our hair out.

The other side of that however is that if you don’t make your worst days evident, you’re under supported on those days and don’t have the resource you need to manage them.

Depriving someone of access to a wheelchair, for example, because they “only” need it once a week is inhumane. That day they do need it, it should be available to them. To get that, you have to describe the need for it, however often that is.