#GE24: Better Supporting Carers
Seventeen years ago I had little idea what the term ‘carer’ even meant. Perhaps someone paid to do ‘meals on wheels’ or sit in a big old dusty house, and read with an elderly person? Or, even better accompany Aunt March on a trip round Europe (for any fans of Little Women out there!).
So, when a temping agency placed me with a local charity for carers, and then that job turned in to a permanent post - establishing a befriending scheme for isolated carers - I had to learn quickly what this seemingly arbitrary label even meant.
One of my first appointments was with a mum, whose confidence had so been shaken by the weight of the (unpaid) caring responsibility she carried for her severely autistic nine-year-old daughter that she’ d given up a career, stopped driving and allowed friendships to fall by the wayside.
I remember her looking at my pregnant belly and saying:
“Imagine not being able to take your daughter to the park on your own."
I think about that woman a lot. I would love to go back, and tell her that I get it now. I understand the constant and enduring weight of responsibility for somebody else’s safety, personal care and health needs - sacrifices that are often required not just for one season of life, but way off into a distant horizon.
"In the last 7 days I’ve cared for 168 hours with a 4 hour break on one day when I could find support. Yes she’s my child. But she’s 21, she has complex needs, and requires 1:1 attention all the time. The care she requires goes beyond the mum role."
Carers providing a minimum of 35 hours per week of care are entitled to weekly Carers Allowance, but, unlike in a paid role, there is no upper limit to the number of hours an unpaid carer will work.
All the protections that sit within a paid role are missing, medication may be administered on little or no sleep, restraint or health & safety training isn’t on offer, and annual leave (or sick leave) from caring responsibilities is dependent on another trusted adult having the knowledge (and sometimes physical strength) to step in at short notice.
As well as forming an integral part of the fabric of society, the value of the work unpaid carers do comes in at a whopping £162bn a year* (yes, billion).
The actual cost of care recently hit home when we considered taking out a new life insurance policy that could contribute to the cost of our daughter’s care should anything happen to me, and then gave up because any payout barely scratches the surface.
In nearly two thirds of families with a child with additional needs, at least one parent has give up paid employment altogether, and many work night shifts in order to attend multiple healthcare appointments in the day.
The impact of costly decisions like this impacts the health and wellbeing of carers, but also increases the likelihood of the whole household experiencing poverty, contributing to the reality that nearly half of everyone in poverty is either a disabled person or lives with a disabled person**.
For those carers taking any tentative steps back in to paid employment, there is the constant need to monitor any income, and navigate one of the most archaic benefit systems out there. Earn just £1 a week more (I kid you not) than the earning limit and expect a hefty repayment notice, sometimes years later when their system flags up an overpayment. The system is inflexible when it comes to seasonal income, or one-off jobs that exceed the weekly earning limit.
(Just as an aside to illustrate how outdated the carers allowance system is, I contacted the Carers Allowance Unit to find out if in a self-employed admin role a laptop could reasonably be accounted as expenses. I was told that were I farming, a rake could be considered a viable work expense, but any IT to assist me to take a first step back in to the paid workforce was off limits.)
The lack of any tapering system also means carers must often dramatically increase their paid hours, rather than increase them incrementally (as would help anyone with significant caring responsibilities) if they don’t want to be worse off than they were before.
Before I became a carer I had no idea how difficult systems like these were to stay within, and how easy it was to unfairly be labelled as having committed benefits fraud (in recent weeks journalists have telling the stories of carers who through the slightest or most innocent infraction have incurred fines running in to the tens of thousands***), only exacerbating the likelihood of carers (and those they care for) experiencing poverty.
So, what can we do as voters, and more importantly as church members to recognise the contribution that carers make?
Voters:
For more detail on how reform could provide additional protections and relief for carers, check out the Carer Manifesto put together by Carers UK, and the report released this week by the Centre for Social Justice.
Then ask your MP how their party plans to reform the carer benefit system, and expand the provision of respite services?
Churches:
Is ‘carer’ a label used in the Bible? No. But the ministry of Jesus actively dignifies what, in all honestly, sometimes feels undignified.
I’ve found deep comfort in the reality that the God of the universe not only came to earth as someone needing to receive personal care, but also got down on his hands and knees and washed the feet of those around him.
Who in your church spends their days feeding, bathing, providing personal care for, hoisting or watching over a relative, or friend, in need?
The gift of encouragement, support and (where possible) the provision of a short break, all serve to dignify and recognise sometimes unseen sacrifices.
Becoming a carer is almost always an unplanned, unexpected detour in a person’s life, and a steep learning curve. Church-based carer support groups can be a helpful setting to share experiences, and pray or encourage one another (as well as help people navigate the existing benefits system, and support available).
Alternatively, if you have a number of young families adjusting to new caring responsibilities, why not consider running Growing Hope's four-week When Dreams Change course, which aims to help parents and carers reflect on their experience of having a child with additional needs?
-----
Written by Rachel Wilson, author of The Life You Never Expected: Thriving While Parenting Children With Special Needs (IVP, 2014)
References:
* https://www.jrf.org.uk/uk-poverty-2019-20
** https://www.carersuk.org/policy-and-research/key-facts-and-figures/
*** https://www.theguardian.com/society/2024/apr/07/unpaid-carers-allowance-payment-prosecution-earnings-rules
