Benefits for sick children "shouldn't be a tick box exercise"

Monday 12 October 2020

A mother is campaigning for a complete overhaul of how children’s carer benefits are assessed in Jersey, after being refused financial help several times, despite her young son's serious medical needs.

Kirsty Channing’s five-year-old, Kian, suffers from bilateral renal dysplasia, a rare condition where the kidneys do not develop properly in the womb.

As a result, Kirsty and her husband have to perform 10 hours of dialysis treatment on Kian five nights a week. This is in addition to a six-hour overnight feed through a feeding pump, performing regular checks and giving Kian 10 medications a day.

She and her husband are currently the only people fully trained in the island to treat the condition, due to its rarity.

Pictured: Kirsty says her and her husband will have to pay for Kian's medical supplies on their own once he turns six in December.

Kirsty told Express that she had tried getting the Child Personal Care Benefit for Kian on a number of occasions, but that she had been repeatedly told that he does not qualify for either Level 2 or Level 3, which is what is required to receive a benefit.

Level 2 children receive £107.24 per week, and Level 3 children receive £154.07 per week.

The Government website outlines the specifications for the levels as follows.

• Level one​​​​​​: Children with an impairment that affects some aspects of daily life, but who don’t need a high level of help.
• Level two​: Children with a high level of impairment who need help with a wide range of their daily activities.
• Level three​​​: Children with a severe level of impairment who need a high amount of help with everyday tasks, eg paralysis or very significant learning disabilities.

In the assessments, Kirsty says that Kian is classified as Level 1. The Government website states that children at Level 1 aren’t, “...eligible for Personal Care benefit, although you may qualify for additional help if you already get Income Support.”

However, as Kirsty doesn’t receive income support as both she and her husband work, she wasn’t even eligible for the Level 1 income benefit.

Equally, Kirsty described how the assessment itself was formatted into different categories, with a cap on how many points you can get in each one. While Kian scored highly on the medical care aspect of the form, he didn’t get as many points on other sections, and was therefore considered ineligible for Level 2 or 3.

Recalling her experience of filling in the form, she remarked how “one of the questions was something like whether they’re able to spoon-feed themselves”, to which she had to put ‘yes’, as, technically, Kian had the ability to do so.

However, his feeding is much more complex and she said she felt none of that had been taken into account, focusing far too much on mobility and more outwardly ‘visible’ aspects of disability.

“He appears a well child, he doesn’t look sick,” she explained. “Unless you take his top off you can’t see his tube… Not all disabilities are visible.”

Kirsty added that the current system “basically feels like it discriminates against Kian," as well as those with similar, less immediately visible illnesses.

Pictured: Kirsty appealed directly to both the Children and Health Ministers' departments, but received no support.

She added that this need for support will be made even more urgent when Kian turns six in December, as the responsibility to pay for his feeding equipment will be handed to the parents, including purchasing his milk syringes and prescribed milk.

Having had no luck with the form, Kirsty said her and her partner had asked whether a Minister would take up the matter, directly granting them support via an exceptional 'Ministerial Decision'. However, the pair were told they would have to show a 'financial deficit' before they could appeal.

When Kirsty was put on unpaid leave from work in July, she wrote to both the Childrens' Minister’s department and the Health Minister’s department to say there now was a financial deficit, and that they wanted their request for support to be granted via a direct Ministerial Decision.

However, she said the Children’s Minister, Senator Sam Mézec, did not respond, and the message to the Health Minister, Deputy Richard Renouf, was simply forwarded to Social Security by an Assistant Health Minister.

Pictured: Kian currently has to have 10 hours of dialysis treatment five times a week, on top of six hours of feeding through a feeding pump and 10 medications a day.

“It’s literally just banging my head against a brick wall," Kirsty said of the "circles" she feels she is going in with the process.

"If I was providing this level of care for any other individual, I would be recognised as a carer, but because it’s my son, I’m not," she added.

Aware that there are “so many other families in the same situation" having to pay for vital medical equipment, the mother has now launched a petition to review the Child Personal Care Benefit laws.

Since it went live earlier this week, the petition has already been signed by over 900 people - fewer than 100 signatures away from securing a response from a Minister. If the petition reaches 5,000 signatures, States Members will consider debating the proposal.

Sharing her ultimate goal, Kirsty said: “I’d like to see the whole form rewritten. It needs to be a case-by-case basis and not a tick box exercise.”

Responding to a request for comment from Express, Minister for Social Security, Deputy 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."