To be terrified about PIP?

[BobbyBiscuits]

I've tried to blank all this out for ages, but today it hit me when the government basically are saying I'm going to (they want me to) have my PIP cut off?
My main illnesses are severe depressive disorder, general anxiety disorder and severe anorexia. I've severe PTSD symptoms and also think I may have ADHD but have not been able to get diagnosed due to phobia of MH services since I got sectioned.
I now have physical symptoms also and severe osteperosis which I put on my last forms. But had no assessment for several years.
I'm praying this is BS from the Tories and they can't do it anyway as they'll be kicked out.
Or could labour still continue this assault against disabled people?
It would halve my already tiny income, other half is from ESA, and they could kick me off that too even though I can't do anything!?

What do people think?

So here are some further expense from the top of me head

1 Son on 0.5 percentile for motor - laptop and computer to develop typing skills as he otherwise needs a scribe he’s trying to work independently.

2 Also iPad for learning - likewise

3 Special cutlery to learn how to use cutlery

4 Special chopping board to develop chopping skills

5 Sailing lessons with disability sailing to develop self confidence

6 had to learn to swim 1:1 as could not access shared lesson or clubs ( hearing issues / ASD / motor)

7 Cost of accessing disabled social group eg shared taxi with other disabled £5 per week

8 Various computer programmes to access learning eg talk write or read.

9 I want to go on holiday - I have to take disabled adult son as there was no social care available to look after him - so his holiday costs enhanced because we needed to have better transfers. Also cost of aborted excursions as son refused. He needed own room. He did not want to go on holiday he dislikes it.

10 I want to go out - I have to take him my adult son as he can’t be left at home at night - assuming no social care / PA available. I can’t just go for a glass of wine out. Who buys his meal out of his drink or should I also stay in?

What should be allowed?

So why would a non disabled person parent need a special wills trust and that type of legal advice?

why would they need special disabled cutlery

why would they need as opposed to want a lap top if they don’t need scribing

why would they need as opposed to want 1:1 swimming lessons if they can hear , have no language disorder and ASD

Why would they need looking after at night time from aged 15 onwards so parents can go out

why would they need to go on holiday with parents as opposed to wanting to go on holiday - quite the reverse they want to stay home

Another example my son can join the politics a level class but the teacher has specifically requested we keep on the tutor to support as well - another expense requested by the college tutor as my son has really quite a lot of complex needs.

What about our trip to Great Ormond Street to access tertiary care - when we were the should have been in class sizes of 5 - not available on the part of the UK where we live.

Following on what about the cost of all the tutoring we paid for to compensate so we did not send him to a SEN boarding school we were entitled to send him to ( cost about 50,000 - 60,000) instead keeping him main steam ( lower costs or about 25,000 for a Velcro 1:1. Do not now say that all kids benefit from tutoring - not all kids have hearing loss , severe receptive language impairment and motor coord and ASD and told my NHS experts they needed classes of 5! He is high needs so you can argue what you like but you will come across as an idiot.

@Noras

Honestly I think some people reckon the country would be flourishing if none of it was allowed. They’re, unfortunately, ignorant and don’t realise that the cost of people in supported living and residential care homes has shot up through the roof. It is much more cost effective to keep someone at home and support them with benefits. For those who are not aware, anyone in residential care, has a personal allowance of £30 per week (for clothes, toiletries, any additional food and snacks, podiatry if not eligible) so they’re not receiving benefits in the same way as if they were living in a family home.

Oh and how many parents of disabled kids have the cooking.?

I hate it. The ‘ mum I’m going to make a dish’ - and you know you can’t eat it because it tastes like pants. What about those costs as you say ‘yummy’ and try to eat it because they are at life skills and you want to be enthusiastic.

What about the shopping when
darling son make a solo trip ( as part of life skills ) hand over a tenner and get £5 less change or worst still panic and walk out of the shop without any change or as on one occasion said ‘keep the change I don’t want to deal with it’

What about his life skills trip with college when you were hoping to drop him and go at a restaurant you don’t like ( a college trip) but DS decides to panic and you have to stay and pay for food you don’t want to eat when you were hoping for a coffee with friends

What about having to leave free accommodation in London (given to you by wealthy friends) but having to get another train back because son is having a fit about the city. So you have to cut short trip and pay for more train tickets

"As mentioned upthread, the exact same need resulting from the same condition may or may not qualify for PIP depending on how it manifests and how you fill in the forms"

Anyone with the same needs as my son would qualify for PIP. They bear no resemblance to the needs of people without a disability.

Some of the things you have listed are not that unusual in non-disabled children. My child needed two years of intensive private SLT and can only cope in 1:1 swimming lessons. We also had long stays in hospital when he was born and needs additional tutoring in some subjects at the request of the school. Most 'typical' children have 'atypical' needs in some areas. My daughter has needed to see a child psychologist for a year and needs a laptop to access the curriculum at her school.

I agree with you though that the range of needs your son has as a result of his disability would mean that he should of course receive additional funding. The level of this funding is something that society will need to decide both in terms of what it thinks is fair and what it is willing to fund. The cost of SEN school placements is currently a major reason why many Councils are facing bankruptcy so clearly a realistic plan for funding and what can be offered to disabled pupils needs to be agreed and paid for properly. If the country is unwilling to pay then we need to start managing parents expectations about the help they can expect from the state. The same is true across the board! If the state is unwilling to fund the support that disabled people want and need then more will inevitably fall on to parents and the extended family.

Please don’t be rude
I apologise for being rude. It's the frustration getting a bit out of hand because what you are saying is really not applicable to the NHS as a whole. Maybe to a few people, and you happen to know them, but that's all and your view on how to improve the system is not realistic nor relevant to the issues.

The example you have used is completely different and an obviously inappropriate comparison
Why though? In both cases, the need is to help a mother who is tired, doesn't help from another adult, and has hungry children, so how is her needs -to get a take away- any different to the single mum who is too very tired after along day, doesn't have help from anyone else and has hungry children because they don't get home until after 7pm?

Of course, overall, the needs of a family with disabilities are very different but this specific instance isn't.

I don't know your son so can't comment.

The statement you have quoted is true though for lots of conditions. If you have a short term bout of depression you will not be considered disabled but may well be experiencing depression during this period in exactly the same way as someone with long term depression. If you break your leg then you may well be just as incapacitated for a short period of time as someone with a disability. Many people claiming PIP know the importance of not letting assessors know about the variability of some conditions as it's likely to impact your claim. It is simply untrue to say that non disabled people cannot have the same needs as disabled people even if the time period of that needs may be different

A temporary condition, such as a broken leg, is not the same. You wouldn’t be able to claim PIP for any short term condition.

PIP is awarded if you’ve had x disability for a period of time, and if it’s expected you’ll keep x disability for another length of time.

Its not for short term problems.

“It is simply untrue to say that non disabled people cannot have the same needs as disabled people even if the time period of that needs may be different.”

This is utterly bizarre. Obviously all humans need food, water and shelter. Even if you break your leg, you may be able to use crutches whereas someone with progressive MS may not even be able to weight bear at all. Even if the person with a broken leg does need a wheelchair, their needs are incomparable.

The needs for benefits - and social care - must be above and beyond what is normal. Everyone needs to clean and tidy their house and many of us don’t enjoy it. Regardless, we muddle through the chores. Many of the people I work with who have learning disabilities, for example, cannot manage the task sequencing.

"I don't know your son so can't comment."

I think you can use your imagination about how severely disabled some people can be.

I know! That's my point.

Other posters are arguing that a non disabled person can't experience the same need as a disabled person. I was literally highlighting that the difference between the two is merely the period of time over which the need is experienced. It doesn't mean that on a day to day basis the person with a broken leg isn't struggling as much as a disabled person or the person with a short term bout of depression is less depressed than someone with long term depression.

@Noras, I don't dispute the needs of your son due to his disabilities, but you seem to compare him to non disabled children that seem to have no needs themselves and therefore cost nothing extra to the what? 'average' child or young adult?

Some of things you've written, I could relate to with my non disabled child/young adult.

I think some extra costs relating directly to disabilities are obvious but others much less so.

I don't want to make assumptions.

You shouldn't assume either that I am so detached from disability that I have to use my imagination to know what severe disability can be like.

It’s the degree of the need - my son pragmatic and semantic language at 0.74 percentile - high needs receptive language 1 percentile high needs - motor coordination 0.5 percentile high needs. That’s the difference and yes on those percentiles mostly it’s permanent and moreover school would be alarmed and acting on it.

We are not talking about language delay but disordered language that remains.
it’s like comparing a twisted ankle with a comminuted fracture.

There is no reason why his needs should not be met - be definition he is in a very low number of people with those stats plus the added in ASD.

Sorry but we have large corporations setting up parent companies in Lichtenstein with fake licensing or loan agreements and not paying taxes or as much as they should in the Uk plus paying people so poorly they need to rely on universal credit. Off shoring is the issue not the cost of PIP. Literally how many large corporations are not paying taxes due to fake loan costs to parent companies at ridiculous interest or due to the cost of the franchise the cost of which remote to somewhere in the Caribbean

Who mentioned food, shelter and water?

Why are the immediate needs of a person who needs a wheelchair due to broken limbs incomparable to someone that needs a wheelchair for a physical disability? Why are the immediate needs of someone with short term depression incomparable to someone with long term depression? Keep in mind long term from a disability perspective is for 12 months so someone could struggle for quite some time and not being deemed disabled.

How on earth can you describe any of the above as not being a need that is 'above and beyond what is normal'?

Your teenager needs babysitting?

Being able to swim isn't a luxury. Some disabled people struggle to learn in groups

The argument about funding - money spent on these things doesn't just vanish into the void. It is taxed. It keeps the economy turning. People with the least money spend all of it to survive. Industries have built up around providing goods and services. Cut "benefits" that are spent on the care industries and the knock on effect is yet more shrinkage in the economy. Money is supposed to be a tool, not an end in itself.

It's not about offshore companies or other red herrings. All of these arguments around tax evasion and taxing corporations are notoriously difficult to actually implement and will often just push companies to set up in other countries that are more favourable (e.g. Ireland) resulting in less tax. We can't assume some money tree is going to appear and miraculously resolve the issue of spiralling disability costs and a population that is unhappy funding this.

The reason why you son's needs may not be met is because the state doesn't make the money available to do so. This will be decided at the ballot box and won't happen this election but I do fear for subsequent elections when the costs have increased by a further 50% and people have realised Labour don't actually have an answer and it maybe wasn't all the Tory's fault afterall. The trajectory is scary if you project how much this is going to cost in a few decades if costs continue to rise at this pace. Quite honestly there will literally be no chance of finding £50k plus school placements for anyone with public finances stretched so thinly.

"babysitting so parents can go out to drink wine"

It's called respite and it enables carers to continue their role of being a carer. And as another poster pointed out, non disabled teenagers don't need it.

Disabled kids have needs, non disabled children do to, for other reasons.

Not all needs can be met, disabled or not, so priorities have to be met.

Children are very costly. Parents of disabled children will have additional needs, but some will have less costs too in other areas.

I think using some of the examples Noras has shared really doesn't help reassuring the ignorant public that PIP is always well spent.

I don’t have teenagers yet, my toddler and baby however absolutely need babysitting and who knows what they’ll need in the future. That’s not my point though, my point is that there are some things the state should be funding and some things that shouldn’t be funded, and personally I don’t think luxuries should be funded when there is an increasing need for funding, services are stretched and many people are struggling with the cost of living so don’t have these luxuries themselves and can’t afford to pay more. We need to pay for the basics first and make sure those are in place for everyone before money for extras is given out.

And as another poster pointed out, non disabled teenagers don't need it
My best friend didn't go out once without her teenager for a few years because her son had sadly got into drugs and would invite his drug friends and leave the place in a state.

It was horrible for her and no help at all.

Nope, sorry that argument doesn't stack up.

If the government wanted to focus on growing the economy then disability payments are absolutely not the best way to do this. Major CAPEX projects are much better as they increase the country's asset base, infrastructure and create a lot of employment.