However, Kirsty Channing’s call for a review of the whole Child Personal Care Benefit system, which she said was failing some families as it did not recognise that children with complex needs are all very different, has not been accepted by ministers.
Social Security Minister Judy Martin has responded to a petition launched by Mrs Channing calling for the review as it has surpassed the 1,000 signature mark, which triggers a ministerial response. So far 1,162 people have signed.
In her response, Deputy Martin says: ‘Ministers will review support for children with serious medical conditions requiring feeding equipment. The CPC benefit provides fair assessment of personal care needs; there are no plans to review it.
‘A review of the policy for feeding equipment and other subsidised products is under way and the outcomes will be considered by ministers in terms of both the policy in general and how it is applied at specific age ranges.
‘Depending on the outcome of this review a business case for additional support may be put forward for inclusion in the 2022 Government Plan.’
She adds that the CPC, which is available to the parents or guardians of children below school-leaving age with very high personal care needs compared to other children of the same age, currently provides a ‘fair assessment’ and no review is needed.
Mrs Channing claimed that the application process for the benefit was a ‘tick-box exercise’ which did not properly reflect the needs of individual children. Her son Kian (5), who was born with heart and kidney problems – the latter of which will ultimately require him to have a transplant, needs dialysis five times a week for ten hours at a time. She said he did not earn enough points on the application form to qualify for the benefit.
The family will also face the financial challenge of having to pay for their son’s feeding syringes when he turns six in December, as they will then cease to be free.
Deputy Martin’s response, however, says: ‘This format of questions [on the benefit form] ensures that all children, whatever their medical background, have their personal care needs assessed in the same way. It should be noted that some children will have a serious illness or long-term condition that does not give rise to significant extra personal care needs, although the child does require specialist healthcare.’
She added that the government supported children with medical conditions and disabilities in a range of other ways, including through a dedicated child-development and therapy centre, specialist children’s social work, direct support with personal and nursing care and support within education.
‘Children with care needs are supported across government departments to meet those needs,’ the minister says. ‘This range of support can include the cost of prescribed items and feeding products – these are either free, or free up to a certain age and then subsidised as the child gets older. As noted above, this provision is under review.’