Why are parents of disabled children being refused the COVID vaccine?

(Before I jump on my soapbox, if you are being refused the vaccine as a carer and just want to know how to get it, skip to the end for the useful information)

There is a long held public perception that disabled people and their families are generally low income benefit claimants.

In many ways it’s true. According to Mencap just 17% of adults with a learning disability are in paid work and only 52% of adults with any disability are in paid work compared to 76% of adults in the general population.

Additionally parents of disabled children find it difficult to work finding the constant fight for healthcare, education and social care on top of the medical appointments, therapy sessions, school meetings and endless form filling almost a full time job in itself. Add to that a lack of suitable available after school childcare and no wonder so many parents lose their careers and have no choice but to rely on meager financial supports such as Carers Allowance at just £67.25 per week.

But this assumption of dependence on benefits is never made with kindness or understanding. These barriers to employment are rarely acknowledged, and judgement often sits side by side with the belief that many are claiming when they are not entitled despite disability benefit fraud being less than 1% of total claims.

But what does this have to do with the COVID vaccine?

COVID Vaccination Priority Group 6 includes Carers. The exact wording in the COVID bible also know as the Green Book, Chapter 14 is as follows:

“Those who are eligible for a carer’s allowance, or those who are the sole or primary carer of an elderly or disabled person who is at increased risk of COVID-19 mortality and therefore clinically vulnerable”

Read that again. It does not say that one must be in receipt of carers allowance. It says that one must be eligible for carers allowance OR be a sole or primary carer.

Parent/ carers of disabled children fall into the “primary” carer category. BOTH parents. They do not need to be in receipt of the £67.25 carers allowance.

The COVID vaccine is not means tested

Both Simon and I were refused the vaccine by our GP. We were told that as we do not receive carers allowance we are not eligible… and I am hearing this same story from our community over and over and over again. Parents having to fight, as we did, for the vaccine which they are entitled to under Priority Group 6.

My husband and I are extraordinarily privileged. We own our own business meaning we have the luxury of being able to chose our own hours and work around our children’s needs. We can take time off to attend medical appointments and school meetings. We haven’t had to sacrifice our careers or our financial security in order to support our child. We are not eligible for the Carers Allowance because we each earn over the measly £128 per week threshold. But we are still Primary Carers of our disabled daughter and so still eligible to receive the vaccine in Priory Group 6.

The COVID vaccine is not means tested, all primary carers are entitled to it regardless of their income. And that includes BOTH parents.

Just another battle to fight

I have heard reports of outrageous responses from GP staff when approached by parent carers who do not receive Carers Allowance:

“I hope you’re not just trying to get the vaccine early”

“Only the mother is eligible”

“You’re not entitled, you have a job”

Some healthcare professionals have tried to excuse this behavior as specific to the pandemic. Stating the guidelines are confusing (reads pretty clear to me) or that we should cut the GPs some slack as this is a new thing they are dealing with.

But to those of us in the SEND community this isn’t new. This isn’t unique to the pandemic. This is simply another fight, another humiliation, another opportunity for society to point the finger and accuse us of abusing the system, expecting special treatment or wanting free stuff.

The idea that the vaccine should only be given to those carers in receipt of benefits and that anyone not claiming benefits is “just trying to get the vaccine early” plays straight into the idea that all disabled people and their families are low income, benefit claimants. Society does not expect or want those from the SEND community to thrive or to have equal status to themselves and so anyone who does not fit into this narrow, distorted view of how our lives should be is met with suspicion and hostility.

Its been a long year

Disabled children and their families have been one of the hardest hit groups during the pandemic. With families seeing almost all support they rely on disappear. With reduced access to crucial therapies, medical support and education as well as respite care or even just their natural support system from family and friends restricted.

Its been a traumatic time for everyone, but some within the SEND community have been pushed to beyond breaking point. To finally reach what feels like might be the home stretch only to face yet another battle, yet another barrier, yet another refusal of support is beyond cruel.

So, how do you get the GP to provide you with the vaccine if you do not receive carers allowance?

OK, so now I’ve had my rant, here’s the important information:

1 You must contact your GP and request that if you are not already, you are marked as a Carer on their records

2 Request the vaccine as sole or primary carer

3 If you are refused report to your local CCG who will support you. Our CCG contacted our surgery on our behalf and made the appointments for us

4 If you are still not getting anywhere telephone 119 and they will book you an appointment. The downside is you may have to travel out of your area

5 Submit a formal written complaint copying your CCG. This is important and will help to ensure other parent carers are treated fairly

A couple of useful links:

Find your CCG:

https://www.nhs.uk/Service-Search/other-services/Clinical%20Commissioning%20Group/LocationSearch/1

The COVID Greenbook chapter 14a:

https://www.nhs.uk/Service-Search/other-services/Clinical%20Commissioning%20Group/LocationSearch/1

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