How to claim carer’s allowance: What I learned from going through the process

Yvette is a full-time carer to her daughter Rosey, 25. They live in Norwich. Rosey has cerebral palsy, scoliosis and epilepsy, and is also blind. 

In this blog, Yvette shares what she’s learned over the years about claiming benefits as the parent of a disabled child, in particular: carer’s allowance. 

Since my daughter Rosey was born 25 years ago, every day has been a school day for me. 

Having a child with complex disabilities requires you to learn a lot, and fast. I had just wanted to be a mum, but over the years I found myself becoming an expert in my daughter’s rare medical conditions, and in the complicated benefits system. 

When Rosey was four and starting school, I applied for carer’s allowance. I’ve been receiving it ever since. 

I applied because I knew I wouldn’t ever be able to work while I have Rosey. To this day, I give her 24/7 care. I feed her through her PEG tube, and wake up to take care of her when she has seizures in the middle of the night. 

Carer’s allowance is the only thing available to me, but to be honest, it feels like an insult. It feels like pennies, and works out as less than minimum wage for round-the-clock caring. 

It’s also not a nice process to apply for it. Although it was over 20 years ago when I went through the process, I still remember how demoralising parts of it felt. 

I’ve dealt with the DWP a lot throughout Rosey’s life, and I’m happy to share the wisdom I’ve earned with other parents and carers out there. 

Gather all your information together

Before starting any benefits application, it’s a good idea to have all the information and evidence you need to hand. 

“I always tell new parents of children with complex disabilities: get yourself a good filing system. Try to keep everything in order. It can make it feel a bit less overwhelming.”

I used to be a secretary, and so I’ve got an iron-clad filing system at home for all of Rosey’s documents. I keep everything – letters from the hospital, care plans, award letters.

I always tell new parents of children with complex disabilities: get yourself a good filing system. Try to keep everything in order. It can make it feel a bit less overwhelming. 

For me, it helps me cope to approach it almost like I’m running a small business. I put my secretary head on. It gives me strength to deal with professionals like consultants – and to go through processes like the carer’s allowance application process. 

Before you start your carer’s allowance application, you need to have to hand:

• Your name, address and phone number, and those of the person you care for.
• Your date of birth, and that of the person you care for. 
• Both of your National Insurance Numbers, if you have them. (Or a Disability Living Allowance reference if the person you care for is under 16.) If you have a partner, you’ll need theirs too. 

• Your bank details.
• The details of your employment (if you’re employed) or course (if you study). 
• Details of any expenses you cover, such as extra care while you’re working.

It’s also worth having to hand any evidence that might support your claim, or help jog your memory as you fill out the form. 

Prepare to answer difficult and invasive questions

You can fill out the claim form online or by post. Back when I applied, it was only by post!

I remember finding the form heartbreaking and quite insensitive at times. You have to go over all the most difficult things. 

These forms make you feel like you are bidding for something you don’t deserve. In reality, carer’s allowance is much less than carers deserve. 

The form can also be quite hard to understand, if you’re not that academic (or just tired!). It can be a minefield. I think these days, some schools offer support to parents who are applying.

Once you’ve filled out the form, they say you need to allow three to six weeks for it to be processed. But it can take much longer – some have waited 15 weeks. 

If you don’t get the decision you believe you deserve, you can stand up for yourself and appeal. I didn’t have to challenge the decision about my carer’s allowance, but I have had to make other challenges over the years.

When we applied for Rosey’s Disability Living Allowance, they said she didn’t need care overnight. That was hysterical to me! I wrote an appeal, and I said: ‘I’d invite any member of your department to come and spend 24 hours in our house, and see how many seizures Rosey has overnight’. 

We did get the right award in the end. But we had to fight.

Lean on the people around you, and ask for the support you need

Back when I applied for carer’s allowance, we weren’t offered support with the process. 

“When it comes to things like applying for benefits, it’s hard work. You don’t have to carry it all yourself. It’s okay to need help sometimes.”

But since then, we have been offered support from a keyworker – an NHS worker whose job is to support young people with complex needs. I’ve also had a lot of support from my sister over the years. It makes the world of difference to have someone by your side when you’re going through a difficult process.

When I go to meetings or fill in applications about Rosey, my emotions are obviously heightened. After all, this is my child we’re talking about!

This can make it hard to fully digest the information that’s being given. 

Having a keyworker, or even a family member, with you through the process means you have another person to take it in, and help you understand everything.  

As a carer or parent of a disabled child, sometimes you feel guilty. That can drive you to martyr yourself, and to try and take everything on alone. You just want to do everything you possibly can for your kid. 

I understand how that feels. But when it comes to things like applying for benefits, it’s hard work. You don’t have to carry it all yourself. It’s okay to need help sometimes.