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.

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.

In addition to the extra cost benefit, help is also available via Universal Credit and receipt of DLA can passport to a range of additional support such as premiums in income related benefits, Carer’s Allowance, the Motability Scheme and exemption from the benefit cap.

The welfare support offered through the Department for Work and Pensions is just part of a much wider package of support offered across Government.

Department for Work and Pensions