Families with disabled children left financially devastated by pandemic, new study reveals

3 mins read

Thursday 18 November 2021

Tags: counting the costs, campaigns, family finances, email your mp

Green banner that says: "What happened to the finances of parent carers who shielded during the pandemic? 30% went into debt or borrowed money; 15% fell behind on mortgage payments; 10% used a food bank for the first time."

Many families with disabled children are still living with the financial fallout from the pandemic.

Almost half of families with disabled children report a devastating drop in household income of £48 a week – or £2,500 a year. And that’s before the Universal Credit £20 uplift ended on 6 October 2021.

These are the findings of our Counting the Costs 2021 survey, this year’s edition of our flagship research into the finances of families with disabled children.

Join our Counting the Costs campaign to call for a benefits and support system that genuinely values carers. Email our template letter to your MP demanding change.

Thank you to everyone who took part in our survey and helped shine a light on the critical situation many families are in.

“I found myself having to battle to get the smallest bit of support during this time. I was registered homeless for nine months while I applied for council housing, homeschooled my twins who both have high-level needs, and juggled caring for my daughter who needs constant supervision while my son was in hospital with a post-operative brain injury.”

Joanne, mum of 14-year-old twins

Two-thirds of parent carers forced to give up work

Counting the Costs 2021, our major survey of almost 3,000 UK families with disabled children, found that:

  • Nearly two-thirds (61%) say that caring responsibilities mean they or their partner has given up paid work, on average losing £21,270 from their family income.
  • In the last 12 months, almost a third of parent carers have gone without heating (30%) and food for themselves (37%). Half have gone without toys, presents and computer equipment for their children.
  • 55% of respondents were shielding during lockdown. As a consequence of shielding, 30% report they got into debt or borrowed money, 15% got behind with mortgage payments, 10% used a foodbank for the first time and 7% lost their job.
  • Nearly a quarter (23%) of respondents claim Universal Credit and 40% of those said they are worse off since claiming, despite assurances from government that no one would be worse off.
  • 92% of parent carers say going without affects their own health and a third (34%) saying it affects the health of their child.
  • Almost one in five say they have increased care commitments due to the pandemic that will impact their ability to earn money in the future.

Download the full Counting the Costs 2021 report [PDF].

“Parent carers felt abandoned during the pandemic, filling the gaps not only with home education, but nursing and physiotherapy too. Financial difficulties combined with a lack of support have taken their toll. We must turn the tide and have a benefits and support system that genuinely values carers.”

Amanda Batten, chief executive at Contact

Join our campaign to take action

We can’t stay silent about these shocking findings. We are stepping up our campaign and calling for:

• An increase in Carer’s Allowance and child disability payments under Universal Credit.
• Energy companies to introduce a special tariff for households with sick and disabled children due to the rising bills facing families this winter.
• The government to invest in specialist independent advice services, to help families with disabled children claim what they are entitled to.

If you want to speak out too, the first step is to write to your local MP about these shocking findings and calling for urgent action.

Speak out now

We have set up a template email to your MP to make speaking out quick and easy for you.