Closed petition Review the Law surrounding the Child Personal Care Benefit.
This benefit is to support families whose child needs a high level of personal care. The current format for assessment focuses on the child's physical ability, meaning that a child with complex medical needs who requires a lot of care and support is not currently eligible.
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The way that Child Personal Care Benefit is assessed and awarded is discriminatory, and the rules need to be reviewed and rewritten. For example, the assessment form includes questions such as "Can your child spoon feed themselves?" This doesn’t take into consideration the different ways a child with complex medical needs feeds when they’re not able to eat to obtain sufficient nutrition to survive and thrive.
Furthermore in Jersey, when a child turns 6 years old, parents or carers are required to pay for the child's medical feeding equipment (prescribed milk, giving sets, the containers the milk is put into to, any additional supplements) - all of which are required because of the child's medical requirements.
This petition is closed All petitions run for 6 months
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Ministers responded
This response was given on 23 November 2020
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
The Council of Ministers has pledged to put children first and will review the support available to children with serious medical conditions who require medical feeding equipment, to ensure that the needs of the parent and child are fully considered.
Ministers recognise that responsibility for supporting children with complex medical needs is shared between the Children, Young People, Education and Skills (CYPES) and Health and Community Services (HCS) Departments. A review of the policy for feeding equipment and other subsidised products is underway 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.
The Child Personal Care benefit (CPC) is available to the parent(s) or guardian(s) of a child below school leaving age who has very high personal care needs compared to other children of the same age. It represents a payment of some of the components of Income Support but unlike other parts of that benefit is available regardless of the parents’ income. This decision was taken so the benefit could be available to support all children with high extra personal care needs.
Ministers consider that the current benefit, introduced as part of Income Support in 2008 and reviewed as Child Personal Care in 2014, provides a fair assessment of personal care needs for all children and will not be initiating a review of the benefit at this time.
The benefit is assessed using a set of 20 questions which consider all aspects of “personal care” needs. The meaning of personal care needs is different from the state of having an illness or disability – a personal care assessment is designed not to rely on a specific diagnosis but to look at a person’s extra personal care needs when compared to another person of the same age without an illness or disability.
For children the term “personal care needs” relates to the help or supervision that a child needs to allow them to carry out normal everyday activities. All children need a certain level of care and supervision so the tests are applied at different age ranges.
The questions cover –
• the ability of the child to make physical movements
• the ability of the child to communicate
• the thinking, learning and other cognitive abilities of the child
• the additional care needs of the child in respect of receiving medical treatment or achieving developmental goals
This format of questions 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.
As stated, Child Personal Care was introduced in 2014. The number of children being supported by the benefit has risen from 173 at the end of 2017 to 209 at the end of 2019, increasing in cost from £1.2 million to £1.5 million.
The Child Personal Care benefit is targeted to parents who have a child that has significant extra personal care needs, but there are a range of other ways in which the government supports children with medical conditions and disabilities. In particular, children with healthcare needs receive specialist medical treatment and coordination for their care needs. This includes support provided from a dedicated Child Development and Therapy Centre, specialist children’s social work where needed, additional direct support with personal and/or nursing care, and within a range of educational settings designed around children with health or disability needs.
Children with care needs are supported across government departments to meet those needs. 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.