When you care for a disabled child or adult, you are often not able to work full or even part-time, because of your caring duties. For this, you're entitled to the virtual pittance also known as Carer's Allowance. It's less than the out-of-work benefit of Jobseekers' Allowance. But your "job" is to provide sometimes 24/7 care, 365 days a year. It can be exhausting and back-breaking.
It's also a lot less than a local authority-provided carer gets. Under the Care Act 2014, family members of disabled adults cannot be automatically expected to take on a caring role. If they don't want to, or can't, the LA has to fund external carers. This, of course, costs far more than the amount a family carer would get from Carer's Allowance. How is this fair?
Yorkshire-based campaigner, Rachel Adam-Smith, wants to change this. Rachel is mother 17-year-old Francesca, who is non-verbal, severely disabled and has complex health needs requiring one-to-one care. In addition, Rachel has her own health issues, having been born with congenital heart disease. She previously brought a judicial review of Leeds’ education funding policy in 2018, after the LA tried to cut Francesca's education provision. More recently, she's been urging the Government to put plans in place for children with complex medical needs during the Coronavirus crisis.
Rachel has now started a crowdfunding page to raise legal funds to fight for an increase in carer's allowance to bring it in line with the minimum wage and she's here to tell us more about it and to ask for your support.
Carers deserve COVID-19 funding: my legal fight to increase Carers allowance by Rachel Adam-Smith
Each week I am paid an ‘allowance’ for caring for my severely disabled daughter. Carer's Allowance is only £67.25, having increased by just £1.15 in the last month. That equates to just under £2 an hour. The Government has repeatedly failed to recognise carers as workers, or to recognise that the amount they are paid, is not sufficient for the ‘job’ that we do.
There is a huge discrepancy in the amount carers are paid if they are caring for their relative, as opposed to working as a personal assistant (PA) through direct payments. When employing a PA through direct payments, the PA receives just over £8 an hour, or in some cases over £11.00 on the adult rate. While it could be argued this wage is not sufficient for PAs, they do at least earn the minimum wage.
In addition, local authorities (LAs) often use agencies to meet a disabled person's needs. The amount paid to agencies can vary between £17-£25 per hour. Consequently, there is a huge discrepancy in the amounts paid to relatives who are caring for their loved ones. A relative carrying out the very same role (and more) received much less. If a carer were on the same rates as a PA, working 35 hours a week, they would be receiving an income of at least £300 per week instead of just £67.25 a week for much more than 35 hours of work.
Carers are able to top up their allowance by £128 per week through outside paid work, but for some, this is just not possible which means carers allowance is their only source of income. Due to my caring responsibilities and my own health, I cannot take on additional work, so have never been able to top up my allowance. In any case, I'm already working full-time caring for my daughter.
Now, more than ever in this current crisis, the Government needs to recognise the financial value of our caring role.
An insult for our vital role
As carers, we are working from the moment we get up. For me, this is one-to-one care all day long. It's an insult that this incredible work isn't properly valued.
At the moment, during the COVID-19 crisis, there are no breaks, no respite and there is no support. I'm not just mum, as many others during this crisis are. I am a nurse, therapist, teacher, secretary and advocate. I cannot work to earn extra money, and I cannot just read books, relax, watch tv, or go for walks, as I would be doing if it were not for my daughter's disabilities.
At nearly 18 without disabilities, my daughter would be doing her own thing, albeit indoors at the moment. Instead, she is non-verbal. Francesca is on the high rate of the disability benefit, Personal Independence Payment (PIP), for mobility and care. She's visually impaired and has significant orthopaedic issues, making it difficult for her to walk unaided. She needs constant support and supervision. I would like to 'just' be mum, but my role as carer to Francesca means I am working all day long.
We're both at high-risk of Coronavirus
Additionally, as a mum with congenital heart disease, I’ve been told I must completely self-isolate. Of course, Francesca is also considered to be at serious risk. Therefore, to minimise our risk, and because of the lack of COVID-19 testing and PPE equipment available, I made the decision that no carers could come in to assist us during this time. I am aware that other families have had to make similar decisions.
As a result, my workload has increased significantly. I am now caring for my daughter seven days a week, from the moment she gets up, until she goes to sleep, and sometimes throughout the night. I know some parents whose disabled relative also needs care throughout the night.
COVID-19 means carers need more help
The vital work carried out by carers all around the country must be properly recognised. My campaign aims to investigate whether we have a strong enough case to bring judicial review proceedings against the Government for failing to recognise the vital role carers play in keeping the most vulnerable safe.
We require specialist lawyers to do this and therefore need to raise £5000 to fund our legal team at Bindmans LLP and barrister, Steve Broach. If there is merit in a claim, these funds will also pay for the necessary pre-action correspondence, a detailed legal letter setting out why the failure to increase Carers Allowance is unlawful and asking the Government to respond within 14 days.
Thank you for all your support. There has always been a need to increase the small allowance that carers are paid. Now, especially when it may be the only income a family has, it's even more vital.
Also read:
- Care in a time of Coronavirus: Using direct payments to pay family members for care -Steve Broach
- Care in a time of coronavirus (ii): Using health direct payments to pay family members for care
- SNJ's latest Coronavirus & SEND information- often updated list of official info and helpful resources
- Coronavirus and SEND Law - from SEN lawyer, Hayley Mason, including free ebook
- Calming Coronavirus anxiety in children (and everyone else)- Angela Kelly
- SNJ Resources for distance learning, fund and emotional health - often updated
- Coronavirus Lockdown with kids: Setting a steady pace for home learning
- The curious decision to keep disabled children at school despite the Coronavirus crisis -Tania Tirraoro
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Previously Renata has been at the forefront of successfully changing government policy so interventions are needs-led and no longer diagnosis-led, and creating the world’s first specialist nurse for undiagnosed children at Great Ormond Street Hospital.
She also helped establish and grow the first online support community for families of undiagnosed children and spearheaded the very first undiagnosed children’s awareness day, including producing information videos that were shown in parliament.
She is a regular speaker on TV and at events, is an RSA Fellow and the mother of three children with disabilities, two of whom have complex needs and one of whom also has complex medical needs.
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