A parent who provides full-time care for her non-verbal, autistic son says she feels “failed by the system”, after being taxed on her home-carers allowance.
Kerry Marques takes care of her ten-year-old son Luis at home. He has Autism Spectrum Disorder and is non-verbal- they are also awaiting an ADHD assessment. He was diagnosed at age three, despite the standard age for starting testing being five years old.
Luis is currently attending Mont à l’Abbé School, however Kerry must always be on high alert in case she is needed to pick her son up early for various reasons.
A level 3 qualified senior carer for Family Nursing Jersey, Kerry was forced to give up her beloved career at the end of September 2024, as her home-care for her son was being viewed by the government as a second job and second source of income.
At the time, Kerry was working 15 hours a week, down from 20. She then found that she was being taxed on both incomes: her carer’s allowance and her job at Family Nursing. This meant her tax went up from 0% to 16%, without being informed by any relevant departments.
She said: “I don’t understand why they see carer’s allowance, having a disabled child, as my income. No one asks for this. So I now have a huge tax bill outstanding for a year too.”
“I have always worked. I’ve never not had a job, and I loved my job. I have been in the care industry since I was 18.”
Kerry explained that when she went off from work for a month due to stress, she was not deemed sick pay because she was not allowed to receive two ‘benefits’. However, she added that the carers’ allowance is not a manageable amount monthly. “I have lost £1,200 a month since leaving my job.”
Moving forward in to secondary school next September, the family have been told Mont a L’abbe school will no longer be able to accommodate him for his secondary school journey, due to the facilities and layout ‘not being able to support his needs’.
They have a scheduled meeting about options for Luis’ education going forward.
Kerry added: “I don’t actually know what is going to happen, but it’s a worry we could do without on top of everything else.
“He’s not in his class- he is on his own. He can’t manage being in a classroom because he has had to be out for so long.”
She explained that Luis gets little interaction with fellow students, and there is little support in place to help with this. Centrepoint visit their home for two hours a week, but that’s all for the moment.
Kerry originally cut down to 15 hours as she was told this would make her eligible for the carer’s allowance, which ended up putting them in a worse boat.
She was also told that if Luis ever needed residential care, he would need to be sent to the UK. Jersey’s currently primary short-breaks home for children with autism, Eden House, has around a five-year waiting list.
“Being told he would have to go to the UK for residential care, as a nine-year old child at the time, was very upsetting. The thought that they could send him away.”
Luis previously attended Happy Hatchlings and had a key worker, who Kerry commended for being ‘fantastic’. ROK Constructions built a sensory room within the nursery while Luis was attending, which proved a great help.
“It was great. Not necessarily just for children with special needs, but for any kids who were having a bad day. We asked to stay another year, but it ended up just not being for Luis. How can you put a non-verbal child in a mainstream environment?
“We then had to fight for a space elsewhere, at Mont à l’Abbé. Up until the last two years, that had been amazing”, she commented.
Kerry added that she adored her career in care and qualified with her level 3 RQF not too long before having to quit- and she feels “let down” by the system for being made to leave it due to her disabled child being viewed as a second income.
