Benefit system ‘failing’ families with ill children

Benefit system ‘failing’ families with ill children

Kirsty Channing described the application form for the Child Personal Care Benefit – which is worth up to £145.25 a week and is open to people of any income – as a ‘tick-box exercise which fails to recognise that all children with complex medical needs are very different’.

Her five-year-old son, Kian, was born with heart and kidney problems – the latter of which will ultimately require him to have a transplant – and currently requires dialysis five times a week for ten hours at a time.

Because it is such a specialist procedure it is conducted at home, overnight, by his parents who have been specially trained by doctors in Southampton.

Kian, who had his first open-heart surgery as a baby, also requires regular checks and medication throughout the day, as well as feeding via a tube.

As a result Mrs Channing and her husband, Shane, act as his carers but are having to do so while holding down full-time jobs. Mrs Channing works 12-hour shifts as a healthcare assistant at the Hospital. This week alarms have gone off on the dialysis machine up to eight times a night, requiring attention each time.

Having the extra financial support of the allowance would, Mrs Channing says, help to reduce the pressure on the couple.

They also face the financial challenge of having to pay for their son’s feeding syringes when he turns six in December, as at that age they stop being free.

‘Kian doesn’t get enough points on the form [to qualify for the benefit],’ said Mrs Channing, who has now lodged a petition with the government calling for a review into how the Child Personal Care Benefit is assessed. ‘He scores the highest he can in the medical aspect but because he doesn’t score for mobility or cognitive awareness, he doesn’t get anything.

‘The form asks questions like can they stand from a chair unaided, can they spoon-feed themselves, can they dress themselves. I feel like the form recognises very disabled children but does not recognise that not all illnesses are visible and physical. Just because Kian can stand up by himself does not mean he doesn’t require a lot of support.’

Mrs Channing, who is also mum to seven-year-old Mia-Louise, said she was aware of other families who felt similarly let down by the system.

‘I would like to see the form changed and it not to be about fitting people into a box,’ she said. ‘I want there to be a view taken on a case-by-case basis on individual needs, not just a tick-box exercise.’

She added that having been rejected again for the benefit, she had been advised to stop working and claim income support instead but said: ‘I am not asking for income support, I don’t want to go on income support. Myself and my husband have worked hard to carry on working so that we do not have to go down that route.’

She said she had written to Health Minister Richard Renouf, who forwarded her email on to Social Security, and Children’s Minister Sam Mézec, who did not respond.

Social Security Minister Judy Martin said: ‘While we can’t comment on individual cases, the Child Personal Care Benefit is provided to families who have a child with a high level of ongoing care needs. There are a number of requirements in order to receive the benefit which allows us to support those who need it most.’

Meanwhile, Senator Mézec confirmed that he was seeking further clarification from the Social Security Department and would contact Mrs Channing once he had received that information.

The petition, which attracted around 700 signatures in just over 24 hours since its launch, can be signed online at petitions.gov.je. If it gets 1,000 signatures. it will trigger a response from the relevant minister and, if it reaches 5,000, then it will be considered for debate in the States Assembly.

The government was approached for comment.

– Advertisement –
– Advertisement –