‘Parent carer’ is a term widely used in professional circles to describe a parent of a child with a disability. Many parent carers do identify as such, but not everyone.
Some people have not heard of the term, or believe that as a parent you care anyway, so see it all as part of ‘the job’. It is vital that we continue to recognise parent carers as having a vastly different, and normally far more difficult role, than parents of non-disabled children.
Being a parent carer is, certainly in my experience, an entire job in itself. Add that to the ‘typical’ role of ‘standard’ parenting and you’ve got an incredibly full plate. The physical load (the extra cooking, cleaning, baths, bedding changes, appointments, assessments) and the mental load (the coordination of services, payroll, contracts, recruitment, holiday pay for enablers, supply ordering), combine to create an enormous weight for anyone to carry. One day I intend to write a job description to illustrate this.
Unlike most typical jobs, this role is charged with emotion and can give you soaring highs and crushing lows, often in the space of one day, or an hour. So it is vital then, that people around us, family, friends, public services and businesses, recognise this.
There is still much work to be done here.
Two examples spring to mind. The first, the local carers’ support. Our local authority used to class parent carers as ‘carers’ and the local carers service was open to us. This offered subsidised counselling (folded after Covid), a token wellbeing payment which, although small, was significant for so many (to allow access to a gym for example, or some counselling sessions), and a raft of other support. They also completed carers’ assessments (I think this is a legal requirement but I’d need to check). A few years back it changed. Now, parent carers are not eligible for some of this support (namely the wellbeing payment). It is for carers of adults only.
I am fortunate to be able to afford gym membership and counselling. This has changed my life, helps keep me mentally and physically fit and better equips me for my caring role. Some people would only be able to access this sort of support with that payment.
So what happened? I’ll guess. Some people (I am going to assume none of them were parents of disabled children) sat around a table and decided that parent carers do not qualify for this support. I would love to know why, and how, they think we have an easier job than someone caring for an elderly relative for example.
A parent carer role is often for a lifetime, is 24/7 and involves more fighting and advocacy work than I could have imagined. The emotional pain is indescribable (although I try). This sort of exclusion exposes a fundamental lack of understanding by decision makers. Note to self – write to MP on this.
Example number two, a local attraction.
My little girl requires 2:1 care so needs me plus another person on a day out. We recently went to a local farm animal attraction. The attraction’s policy on carers’ admission fees was as follows: Students and carers: £2 discount (tickets are £20). I could not believe what I was reading. Carers and students were lumped together as if they have the same requirements. I do not want a token discount for my daughter’s carer. I should not have to pay; she needs her there to keep her safe as much as she needs her disability buggy, her emergency medication or her epilepsy helmet. Another note to self – write to attraction.
These two examples show there is much to be done in educating the wider community on how the role of a parent carer is so different from that of a typical parent. As parent carers, we can all play our part in helping to get the word out there, but we shouldn’t have to of course. It’s another ‘to do’ on our infinite ‘lists’.
No one understands this like other parent carers, which is why communities, forums and charities are so vital. I love it when I see another parent carer out in ‘the wild’ and we share a look or smile, knowing that someone else gets it. When you know, you know.
Life with a Livewire 