Sarah Spoor is a London-based full-time carer and disability activist. She appeared on Channel 5 on Wednesday and this morning will appear on the BBC’s Victoria Derbyshire programme to talk about her experience with the government’s Universal Credit system, which has been widely condemned as damaging and ill-conceived.
It cost Sarah and her family £2,500 as soon as they were put onto it.
She told the SKWAWKBOX her story – here it is in her own words:
I have two disabled sons aged 17 & 20 years. Our Child Tax credits and Child benefit stopped in October last yr when my oldest turned 20 yrs.
I immediately lost of £690 per month = £8280 per year. This was tax credits of £7204.
We had no money at all for 8 plus weeks.
Then we started to receive payment of £250 per month 8 weeks later – so shortfall of £440 a month.
Then we had to complete Universal Credit (UC) Work Capability Assessment form.
Months passed whilst I tried, as a full time carer working 168 hours a week caring for my disabled children, to complete this form and gather medical reports.
UC wanted to interview my disabled son – that would have made him medically unwell . Many letters later from me and from medical professionals, Maximus finally backed down and did a paper based assessment – my son was awarded disability component of Universal Credit.
HOWEVER this disability component is not paid for first 12 weeks. That money is NEVER EVER paid . My son has been disabled since age 3 – the DWP has known he is disabled since aged 3. His DLA (Disability Living Allowance) has been paid since age 3 years . SO WHY no acknowledgement of his disability for the first 12 weeks of Universal Credit.
This angle of Universal Credit story has not been discussed in the press – as I don’t think anyone is aware its happening.
So the net result is I am £2,500 pounds down per year. I am still expected to be a carer paid 37p an hour caring 168 hours a week caring for 2 young adult children.
I live in West London. The breakdown of my tax credits is as follows:
Child 2780, disabled child 3149 plus high-level disability 1275 = £7204
Child benefit loss £1076
Universal credit for a 20 yr old is basic £251.77
Finally when the DWP agreed my 20yr old cannot work, they started paying additional £315.60 per month
That makes a yearly total of £6808.44
7204 – 6888 = £1472 loss per yr
PLUS the 12 weeks where the DWP does not recognise the young person as having a disability at all – despite the DWP knowing that for the last 17 years he has had a disability
So by my way of thinking the DWP cannot pretend that that there was no disability for 12 weeks. This should not be ignored.
Therefore I feel that I am owed 3 x 315.60 = £946.80
Total 1472 + 946 = £2418 LOSS for this year, then a recurring yearly loss of £1472
Both my children have Polyglandular Autoimmune Syndrome Type Two which is an umbrella name for a number of autoimmune conditions
Under that umbrella, they have:-
- Type One Diabetes (insulin Dependent)
- Hashimoto’s Disease (Thyroid Failure)
- Addison’s disease (Adrenal Failure)
- Pernicious Anaemia.
They wear 2 medical pumps (they are the only children in the world on two medical pumps).
I care for them for 168 hrs a week for 37p an hour.
I have been in a 4-year fight with Social Services to get any help. The Universal Credit application process has been humiliating & traumatic. It has pushed me to the edge.
I am hanging on to tax credits for myself and my younger son – and I do not want to change to Universal credit until forced to.
Re finances – I have had to transfer cash from my savings account every month so now I have barely any savings. I am terrified if anything breaks down – I already have repairs need doing that I can’t afford to do.
I feel emotionally broken by this addition to all the other stresses I am under.
The government is trying to destroy the disabled and their carers – its not just logistical, it runs much deeper. Disability hate crime is up 50 % and it is because disabled people are portrayed as scroungers .
God knows how the less eloquent and able manage to fight through the system.
You can see Sarah on the BBC News channel’s Victoria Derbyshire programme on Thursday 19 Oct. The programme begins at 9am.
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