Shirley is a single mum to Henry, who has a degenerative condition and needs help with every aspect of his daily routine. During lockdown, much of the support they rely on fell away – school, physiotherapy, respite. Shirley wasn’t only home schooling: she was nursing, doing physio, and administering medication for months on end. When the restrictions were lifted in the summer, many of those vital services remained closed, leaving them in a continued and isolated lockdown.

Deborah’s son, Charlie, has a rare condition with many complex medical needs. They were shielding from March, cut off from their crucial family support network. Deborah was due to start healthcare training this year, but had to defer due to the uncertainty. Charlie started nursery in September, but at the beginning of December they were told to shield again.

No wonder family carers are on their knees with exhaustion. Families like Shirley’s and Deborah’s are the unsung heroes of this pandemic, caring around the clock, being teachers, nurses and therapists, and often with little support.

Despite the tremendous effort going on behind closed doors, unpaid carers also face huge financial inequality – and like so much else, that inequality has been magnified by the pandemic.

Even before Covid, families with disabled children were at greater risk of living in poverty due to the difficulties of combining work with caring. One report from the Disabled Children’s Partnership, published in June this year, found that more than a third of families with disabled children (39%) reported a further reduction in income since the start of the outbreak, and 61% reported an increase in costs. One in five (21%) said they feared that they would go into debt as a result.

Since that research was done, there’s been an additional six months of job losses and squeezed budgets. That’s why a group of over 70 charities is urging the government to pay a £20 supplement to Carer’s Allowance for the duration of the pandemic. That uplift will match the increase in Universal Credit rightly brought in by the government in April 2020, in recognition of the specific financial difficulties caused by Covid.

Contact is the UK charity for families with disabled children. Our founding purpose is to support parent carers with information and advice so they understand their rights and can take action for themselves and others: never have those objectives been more important, and never has our family support and specialist financial advice been more needed, than during the pandemic.

Calls to our family finances helpline show the extra financial pressures parent carers are under. We’re hearing from more and more parents who have lost their jobs, or have been furloughed, and are struggling with the 20% reduction in income. On top of the extra costs of raising a disabled child, that can easily mean a downward spiral into poverty.

Carers UK estimates that unpaid carers save the economy and the NHS around £132 billion per year – an average of £19,336 per carer every twelve months. Despite that huge contribution, Carer’s Allowance remains the lowest benefit of its kind at just £67.25 per week, or £3,497 per year.

Families with disabled children qualify for Carer’s Allowance if they provide at least 35 hours of care per week, and their child is on the care component of Disability Living Allowance at the middle or highest rate, or if they get the daily living component of Personal Independence Payment. Research Contact undertook with the University of Leeds found that 24% of UK parents of disabled children provide an unimaginable 100+ hours of care every week: that’s the equivalent of working three full-time jobs simultaneously, and without pay, holidays, or a pension. Despite that, Carer’s Allowance has only increased by £1.33 per week since 2010.

At the start of the pandemic, we supported a parent carer who mounted a legal challenge against the failure to increase Carer’s Allowance in line with other benefit increases available during the crisis. The government argued that Carer’s Allowance can’t be increased temporarily without new legislation; permission to amend the claim was unsuccessful, but the parent is now seeking permission to appeal.

Regardless of that setback, we continue to campaign for a Carer’s Allowance supplement. The uplift of £20, while not a magic bullet, would go some way to help ease the financial struggle being experienced by many carers up and down the country. And it would also send an important message from government to carers – one that has been absent for much longer than the last nine months: that they are valued, particularly at this indescribably difficult time.