“It’s through the Family Fund workshop that I realised I’m entitled to more money.”

Meet Hilda and Kalani

Mum Hilda lives in Birmingham with her eight-year-old son, Kalani. Kalani has complex needs. He’s been diagnosed with a severe type of epilepsy called Lennox-Gastaut syndrome, as well as autism and ADHD. On top of this, Kalani is non-verbal and has issues with sleeping.

Hilda explains, “The conditions have a great impact of Kalani’s life, and he’s restricted as to what he can do. It’s difficult to get him into afterschool and school holiday clubs, as those supervising him need specific training on his medical care needs, and the funding isn’t always there. It’s difficult to get Kalani out and about in the community and taking part in things.

Everyday life

“Kalani has frequent seizures, particularly if it’s too hot or cold. During the summer and winter months, we spend a lot of time in hospitals. Being autistic affects Kalani’s life in the sense that he’s unable to communicate his feelings. Also, the ADHD means that Kalani is on the go 24/7. I have a monitor on the door, so I know when it opens as Kalani can run outside. He has no sense of danger.

“Kalani’s conditions have a huge impact on my life. It affects my sleeping pattern and puts a strain on my financial situation.

“I’m unable to work full-time and equipment for disabled children are really expensive. With the cost of living crisis, bills have gone up and wages have remained the same. It’s difficult raising a child with additional care needs, especially now.”

Support through the ‘Check your benefits online’ workshop

Family Fund offers free online workshops that explain how to check carers are receiving the correct benefits.

Hilda said, “I first heard about this workshop through social media. I learnt a lot of new things, and the information provided was straightforward. I was taught how to use an online benefits calculator, where you input your details, and it tells you which benefits you’re entitled to. As a result, I discovered I was missing out on the Child Tax Credit element of my benefits. It’s through the Family Fund workshop that I realised that I’m entitled to more money.”

Hilda added: “I also found out that I could get more help with Kalani at home. We’re currently going through the process of getting a carer to visit the home to provide additional support and some respite.

“The sign-up process for the workshop was easy and attending the workshop on Zoom was fine. It allowed me to attend and supervise my son at the same time. I would definitely recommend the workshops to others.

“The session improved my mental wellbeing too, as I now know that I’m entitled to more support.”

“Family Fund is a fantastic charity with lots of support. If, for whatever reason, they’re unable to help you then they’ll find out who can, and point you in the right direction.”