When my daughter Lulu was five years old she had a stroke which left her with severe disabilities. She had been born with Downs Syndrome and has always required extra care, but the stroke was a devastating blow to me and our family. She was in hospital for a long time and this had a huge impact on my mental health as I was anxious to find ways to support her with her recovery.
An uphill battle
We were living in Italy at the time and really struggling to get the support that we needed to care for her, as well as ensuring that I had enough support in place for me to care for her older sister too. When we moved to the UK I faced an uphill battle to secure the welfare benefits I needed to support Lulu. This was because the Department for Work and Pensions (DWP) viewed that Italy were responsible, whilst the view from the Italian service was that they were no longer responsible as I was no longer living in Italy.
I was able to find work at first, but then developed my own physical health problems which meant I was no longer able to work. Being a full-time carer for Lulu was enough of a job in itself!
Persistence and resilience
I was referred to the Community Law Service by the Citizens Advice Bureau. The marvellous lady I saw told me it was a complicated case – but she said she’d never give up on me. Those words stayed with me through the difficult days. It made all the difference to know that there was someone fighting on our behalf to get the best care for Lulu.
With the help of Community Law Service I was able to get access to housing benefit and to place Lulu in a school that could support her special needs. Community Law Service also got the mobility component of Disability Living Allowance for Lulu, but we were still battling with DWP over the care component part, as this was complicated. The case went to a tribunal in 2022 with Community Law Service representing me. Our claim was rejected, but still Community Law Service fought on for us. They identified that the Judge had erred in their decision as they had not used the law correctly.
Successful legal challenge
They successfully made a formal legal challenge and the case went to a fresh appeal. At the next tribunal, it was decided that my case could be upheld. I was overjoyed at that point as it meant that Lulu was awarded the high rate care component.
Even though the ruling was made in my favour, I was still not receiving the weekly benefit that I was entitled to. So CLS picked it up on my behalf once more. They continue to advise me and work on my case to get all matters finalised.
It meant such a lot to me to know that CLS were there to support me every step of the way. Without their help I wouldn’t have known where to turn. Having someone there saying they would not give up on me made all the difference.