Compensation system for “failing” families with sick children

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Kian on his home dialysis machine (29356732)

Kirsty Channing described the Child Personal Care Allowance application form – which is worth up to £ 145.25 per week and is open to people of all income – as a ‘checkbox exercise that doesn’t recognize 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 ultimately requiring him to undergo a transplant – and currently requires dialysis five times a week for ten hours at a time.

Because it is such a specialized procedure, it is carried out at home, overnight, by her parents who have been specially trained by doctors in Southampton.

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

As a result, Ms Channing and her husband, Shane, act as her caregivers, but must do so while holding full-time jobs. Ms. Channing works 12 hour shifts as a health assistant in the hospital. This week, alarms went off on the dialysis machine up to eight times a night, requiring attention each time.

The additional financial support from the allowance would, according to Channing, help 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, because at that age they cease to be free.

‘Kian doesn’t get enough points on form [to qualify for the benefit]’said Ms Channing, who has now filed a petition with the government calling for a review of how the child personal care allowance is assessed. “He gets the best possible score medically, but because he doesn’t score for mobility or cognitive awareness, he doesn’t get anything.

“The form asks questions such as can they get up from a chair unaided, can they spoon feed themselves, can they dress themselves. My impression is that the form recognizes severely disabled children but does not recognize that not all illnesses are visible and physical. Just because Kian can stand on his own doesn’t mean that he doesn’t need a lot of support.

Ms Channing, who is also the mother of seven-year-old Mia-Louise, said she was aware of other families who also felt abandoned by the system.

“I would like the form to change and not to put people in a box,” she said. “I want there to be a case-by-case perspective on individual needs, not just a checkbox exercise.”

She added that having been rejected for the allowance again, she was advised to stop working and apply for income assistance instead, but said: “I am not applying for income assistance. , I don’t want income assistance. My husband and I have worked hard to keep working so we don’t have to go down this route. ‘

She said she wrote to Minister of Health Richard Renouf, who forwarded his email to Social Security, and Minister of Children Sam Mézec, who did not respond.

Social Security Minister Judy Martin said: “While we cannot comment on individual cases, the Child Personal Care Benefit is provided to families who have a child with a high level of continuing care needs. There are a number of requirements to receive the allowance that allows us to support those who need it most. ‘

In the meantime, Senator Mézec confirmed that he was requesting further clarification from the Social Security Directorate and that he would contact Ms Channing as soon as he received this information.

The petition, which has attracted around 700 signatures in just over 24 hours since its launch, can be signed online at petitions.gov.je. If he gets 1000 signatures. it will trigger a response from the relevant minister and, if it reaches 5,000, it will then be considered for debate in the Assembly of States.

The government has been approached for comment.


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