It's the off the scale entitlement isn't it. I know a bit about how it works cos of my sisters little one. The package of care you can access goes up in increments as the child misses generally accepted milestones. So for example she couldn't get free nappies prescribed on NHS at 3 and 4 cos non-disabled kids of that age very often aren't fully dry of a night either.
7 was a significant turning point in the care she was able to get because at that point you should have a child fully able to feed itself, verbal, not needing to be carried up stairs etc so her little one being incapable of that meant she could get respite care once a fortnight, a carer comes in once a week etc. You don't get to demand your perfect package of bespoke care. The (very generous btw) benefits you get for them allow you as the caregiver not to work. You have that 40 hours a week to be a carer that you would otherwise be doing wage labour in (my sis is a lone parent but able to run a lovely house, garden front and back, in a much better area than i live in, entirely off benefit income). So where you have the burden of the multiple clinics they are under, the appointments etc, that's offset by the fact that if you didn't have all that you'd be in work. That time wouldn't be your own anyway.
Those benefits you get for them are to cover the additional costs of dealing with their needs- there's no need for a begging bowl and a vague pulled out the air cheeky bastard demand for 20k. Some of the NHS stuff is crap and basic so your benefits allow you to upgrade and buy a better version. That's literally what it's for. You don't need to approach the public with a tear stained face- they're already paying you. So for example my sister is very active and has an older non disabled child she needs to get out and about with so because the NHS wheelchair is unwieldy and basic she's bought a much better one privately. Absolutely no need to post manipulative pleas 14 times a day pretending that unless everyone digs deep and gives generously your kid will be bottom shuffling in ragged trousers.
Anyway hope I haven't bored anyone to death, it just massively gets my goat how much she depends on ignorance of how it all works to portray they're in some Edwardian scenario where cold hearted appointees of the poorhouse laugh in her face and make her exhibit her son for shillings. Sickness benefit is generous in this country and non means tested (and a fuckload of ppl who shouldn't get it do so imo but that's another thread altogether) and it is enough to provide a dignified life for those who need it. It is she, his mother, who is stripping him of his dignity.