Forgive me. 12-13 years. Yes, I was previously on DLA. I wasn't stating that my experience was the norm, or that some people weren't failed by it. I was explaining that, despite other posters saying that it wasn't possible to not be assessed more often/without face to face/evidence, well that isn't the case for all.
As I'd said in my post, I wasn't explaining myself perfectly but I stand by the view. Someone unable to do a single thing, with two to one care needs, with 24/7 paid support in their own home, with different bits of electrical medical equipment to keep them alive, all costing money (with only some or not assistance from their NHS trust for the electrical costs) should not get the same amount of money as someone who manages all their needs independently.
I'm not saying the other group don't deserve support, but atm the two flat rates don't really reflect the variation of needs.
For example, my friend has received both DLA & PIP for a long time. When she started she could manage tasks, but it took her longer & she had some symptoms. She had four care calls a day. Walking was okay inside but needed a chair for distance. She received higher rate for both.
Fast forward 20 years & she can do nothing for herself, her capacity varies & has several electrical items to support her coughing, turning, mobilising etc. 24/7 waking support, two to one with partial health funding. She still gets higher rate PIP for both but the experiences are miles apart in the difference life stages.
It doesn't seem right to me.
The term severe disability is thrown around a lot these days but some people have no idea what it's like. Fundings the additional equipment needed & extra funding for things the system doesn't cover is very different to someone who needs funds for a mobility scooter & someone to do a bit of gardening twice a month. That's not to say both groups aren't disabled or indeed, entitled to PIP.
My friend can't even get a WAV to get out of their own home because they need their PIP is required for other basic needs for survival. Transport is a luxury at this end of the scale.
You are welcome to "take issue", but my life experience & that of those around me has shown the true cost of disability. It's not equal, but as always, those with the highest needs suffer the most. The system should reflect that.
Disabled people do face enough judgement, thankfully I'm not judging disabled people but the system that doesn't truly reflect the needs.