Provide day 1 financial support to parents caring for a seriously ill child

We are calling on the government to implement Hugh's law. We want the government to provide financial support to parents who have to press pause on their life to look after their sick child, from the day their child is diagnosed.

Parents often struggle for financial support should they find themselves with a seriously ill child. There is a gap before parents of seriously ill children can apply for financial help. Currently, approximately 4,000 children in the UK spend more than 60 days in hospital every year.

If the government were to provide support to those 4,000 parents each year for a 3 month period to support them with the costs before they are eligible for DLA, we don't think it would cost the government much compared to what is spent on other things. We are asking for a day 1 non-means tested grant available for the parents of seriously ill children.

The Government understands the difficulties and distress that children and young adults with serious health conditions or critical illnesses face. Young people, and indeed their families who are living with a medical condition will be facing a difficult time in their lives which is why the department provides a wide range of financial support for both individuals and their carers. However, the Government has no plans to introduce a day 1 non-means tested grant.

Disability Living Allowance (DLA) is available for children aged under 16 if a child’s condition or illness is both of a long-term nature and gives rise to care or mobility needs. It is a contribution to the extra costs that may arise as a result of a disability or health condition. For those in receipt of the highest level of benefit this means an extra £9,583 a year, tax free. The benefit is paid to the parent or guardian and they are free to use the money as they choose.

In line with DLA’s purpose of being available to those with long-term conditions, payment only commences once the three-month qualifying period has been satisfied. This period helps establish that the disability and resulting care and support needs are of a long-standing nature and provides a division between short- and long-term disability.

Nevertheless, claims can be submitted during the qualifying period as consideration will always be given to whether any of the qualifying period has already been completed prior to the date of claim.

In the most tragic of circumstances where children receive an end of life diagnosis, special rules apply and these cases do not have to satisfy a three-month qualifying period. These claims are also fast tracked, and recipients are guaranteed the highest rate of the DLA care component from the date of claim.