Counting the Costs

Counting the Costs is our flagship survey run every two to get a picture of the finances of UK families with disabled children.

Counting the Costs surveys drive our campaign activity by identifying the challenges families face and why.

Counting the Costs 2021

Why we’re campaigning

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

• In the preceding 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.
• 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.

Counting the Costs 2021 also reveals that the squeeze and pressure on incomes comes at a cost to the wellbeing of families, with 92% of parent carers saying going without affects their own health and a third (34%) saying it affects the health of their child.

Worryingly, some families with disabled children don’t see a way out, with almost one in five saying 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].

How we’re campaigning for change

“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, CEO Contact

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.

Thank you to everyone who has got involved with our Counting the Costs campaign to call for a benefits and support system that genuinely values carers. 

Thousands of you have already shared your views, written to your local MP or helped our campaign by speaking out in the media. Get involved with the next phase by joining our campaign network

More information

Families with disabled children are still living with the financial fallout of the pandemic. Watch two families talk to Channel 4 News on how this affects them and their children.

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.

“I worked before I had the twins and hoped to return to work after my husband died. But it’s just impossible because my children need caring for and my energy is taken up with my constant battle for support. It’s been and continues to be a struggle every single step of the way.”

Mum Joanne

Past surveys

Counting the Costs 2018

Our 2018 survey found a sharp rise in disabled children going without essentials, including specialist therapies and equipment.

Read the full Counting the Costs 2018 report.

Counting the Costs 2014

Our Counting the Costs 2014 report [PDF] found:

• The number of families going without food and heating has doubled.
• The impact for many is debt, stress, ill health and for some marriage breakdown.
• Millions of pounds of benefits go unclaimed by families because of myths about DLA rules [PDF] and the increasing stigma linked to claiming benefits [PDF].
• More than half (52 per cent) of families with disabled children are worried or very worried about Universal Credit (a further 40 per cent don’t know how the changes to Universal Credit will affect their family).

Over 1,000 people wrote to their MP to tell them how the UK government and energy companies can do more for families going without.

The following winter, the Warm Home Discount Scheme (LINK) offered standardise access to low income families with disabled children (and those with children under five). A positive step in the right direction, but we continue to campaign for this discount to be offered to all disabled children.

In addition, the tax free childcare scheme was extended to recognise the higher childcare costs that many families with disabled children face (the first time extra childcare costs have been recognised in policy).