To think disabled people and their carers are being screwed yet again?

[Bingbong21]

Disabled DC. Their father walked away 2 years ago as he couldn't cope with them.

Both my DC in their own right are entitle to someone to claim carers allowance for them. I can only claim for one.

Officially carers allowance is for at least 35 hours week care. DC1 does 9-2.30 5 days a week at school so 27.5 hours. There are 140 remaining hours, DC1 sleeps approx 3-4 hours a night so that's 28 hours. Leaving 112 awake hours with just me, over triple the 35 hours of carers allowance expectations. Both children are throughout their EHCPs noted to require 1-1 care. DC1 when out needs 2-1. Still just me.

Carers allowance is £68 a week for 35 hours care. This for one person is less than £2 per hour.

The short period we had respite (6 months whilst we were in crisis) the carer was paid £10 p/h.

They of course receive DLA which doesn't cover their disability costs.

The loss of the £20 uplift has been devastating for us. I lost my well paid job because of DC1's needs. We went from a 2 parent, 65k combined income a year to lone parent. I can't get any form of childcare for DC1 to enable my return to work. No one is willing to fund the 1-1 support DC1 needs to access holiday provision and universal credit childcare costs does not come close as there isn't an additional allowance to cover the extra care a child may need to enable them to attend. Likewise, EHCPs do not cover after school provision.

Budget just now has specifically penalised those of us not working, the disabled and their carers will be the hardest hit. I have no idea how we will survive winter.

AIBU to think its those least able to change their circumstances who are being most punished?

It’s exhausting explaining again and again that the fabulous benefits and support people think are available aren’t. That there are hundreds without schools, who score too many points for a blue badge, who receive no respite, a pittance and are unwelcome pretty much wherever they go.

Why is the father paying £75 per month?
Have you gone via CMS? I can see you were a 65k household when together, were you the high earner? I know it doesn't help in the grand scheme of things, but if there's a chance he should he paying more its worth looking into. More chance of that happening than the government changing policies in any meaningful way.

I was on my knees with chronic sleep deprivation caring for my severely disabled son. I went to the GP who told me he had the same problem with his two year old not sleeping. He offered me sleeping tablets!! My child was twelve at the time and needed watching over at night due to a risk of aspiration and being unable to move independently any part of his body. I knew then even the professionals just did not get it.
I was only given help when I wrote a letter to social services copied to the GP that I was so sleep deprived I just could not remember 5 minutes after giving my son medication whether I had actually done so. Things then moved quickly and I was offered some respite nights.
Carers save the NHS millions of pounds a year, properly supported they could save the NHS even more. Family Carers need to be fully integrated into any future plans for réorganising Social Care. Instead we are wheeled out at election times as deserving of help then promptly forgotten afterwards.
I met someone from Sweden once who told me that the parent Carer of children with complex medical needs was paid a wage equivalent to a health care assistant in recognition of the hours and expertise involved.