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Financial support for Holi

Photo: DLA has been a financial lifeline for Holi's family

When Holi (3) was finally identified as profoundly deaf, after two and a half years of misdiagnosis, single mum Kate decided to apply for Disability Living Allowance (DLA).

It was an uphill battle for Kate to get her daughter Holi diagnosed as profoundly deaf. “Until her diagnosis at two and a half, she wasn’t doing well,” Kate explains. “I’m a former nurse and mum to a hearing child, Mia (13), and I knew something was different and that Holi was deaf. She would do lots of high-pitched screaming and had no speech.

“It took until March 2021 for Holi to be referred to Great Ormond Street Hospital, where they diagnosed her and said she needed an Auditory Brainstem Response (ABR) test. Once she was diagnosed, there was also a question regarding Holi’s levels of hyperactivity and possible ADHD.”

Armed with the diagnosis, Kate knew she’d need further support. “I hadn’t given DLA a thought until Holi was diagnosed and I called the National Deaf Children’s Society’s Freephone Helpline. One of the first things we discussed was that I ought to claim DLA,” Kate remembers. “I had already heard of the benefit, as my mum claimed it. I remember her finding the forms a headache to complete.”

DLA is a disability benefit which helps towards some of the extra costs of raising a child under 16 who’s deaf or disabled. It’s not means-tested, so it’s not affected by how much you earn, the level of savings you have or any other benefits you receive.

“I applied because it’s a non-means-tested disability benefit and I personally class deafness as a disability,” explains Kate. “A lot of disabilities are hidden. When I read the form, I felt Holi fitted so many of the criteria.”

There are two parts to a DLA award – Care and Mobility (getting around). It’s possible for deaf children to get both parts even if they don’t have any physical difficulties walking, but most deaf children will only be eligible for the mobility component after they turn five. “Even though she won’t be able to get the mobility rate until she’s five, one of the major issues with Holi is that she isn’t danger-aware at all,” says Kate. “It’s a problem indoors and outdoors, due to her deafness and her potential ADHD, and means she needs closer supervision.”

When applying for DLA, you can download an application form from the Government’s website, fill it in and post it back to the Department for Work and Pensions (DWP). Alternatively you can contact the DWP to ask for a hard copy of the form to be sent to you in the post. If your application is successful then DLA will be paid from the date of the call.

“It was quite tedious filling in the form,” says Kate. “I did it bit by bit across four evenings so it wasn’t as mind-boggling. It took 11 weeks for the decision to come back, which was fine as I’d applied by phoning and requesting a form so it was all backdated.”

When filling in the form, Kate made sure she collected evidence of Holi’s needs. “I kept notes on what I do for Holi that I didn’t do for Mia when she was little; I was amazed at the number of additional things I do.

“I was told that you can’t assume the person that’s picking up the form knows anything about deafness; it has to be spelled out for them. That was quite useful to know.”

Kate also included supporting evidence alongside the form. “I included two letters, one that had a clear diagnosis of deafness and the other with her audiograms,” she says. “It was proof of Holi’s deafness and that they gave her hearing aids, and I’d mentioned in the form that she could easily open them and once managed to put a battery in her mouth. It showed I needed to keep a closer eye on her than on another child.

“I’d recommend putting the form aside for a few days when it’s finished, then coming back to read it again to check you haven’t made any mistakes or left anything out.

“It’s quite a difficult process to go through. It focuses on all the negatives and paints such a bad picture of how your child’s doing. But that’s the sole purpose of it. You have to be honest about how bad or difficult it can sometimes be in order to get the support.”

Finally, the decision came through and Holi was awarded DLA. “I was so relieved, because a lot of people have to appeal and even appeal the appeal, and I was already dealing with fighting for Holi’s Education, Health and Care (EHC) plan. They’re not reviewing her DLA award again until she’s five.

“I was happy with what we got and, importantly, it has acknowledged her disability. Financially, it’s a lifeline for our family as we’re not well off at the moment. I’m a single parent, a student and I’ve not really got any other form of income.

“It’s Holi’s money, so it’s helped to buy additional things she needs, to help close the gap her late diagnosis has left, that I might not otherwise have been able to afford as easily. I’ve bought her a peanut ball to help with her balance and coordination, and Picture Exchange Communication System (PECS) charts to help her communicate. Hopefully next year, it’ll help pay for accommodation for the Elizabeth Foundation summer residential. The residential’s a week-long programme for pre-school deaf children and their families.”

See more information about DLA, including how to apply.

We run information events on benefits. You might also want to visit the Elizabeth Foundation’s website; they provide education services for babies and pre-school children with all levels of deafness.