Finances, work and childcare

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Counting the Costs 2021 [PDF]

Counting the Costs is our flagship survey run every two to get a picture of the finances of UK families with disabled children. In 2021, we survived almost 3,000 families.

Key findings:

  • 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.
  • 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.
  • 92% of parent carers saying going without affects their own health and a third (34%) saying it affects the health of their child.
  • One in five say they have increased care commitments due to the pandemic that will impact their ability to earn money in the future.


Contact helpline’s welfare rights team evaluation report 2018 [PDF]

This is a report of the independent evaluation of the Contact helpline’s welfare rights project, covering the period June 2016 to June 2018. This project was funded by the Big Lottery until May 2019. Read the executive summary of the report.

In the period covered by the evaluation, the welfare rights team provided 1,346 in-depth, one-to-one advice sessions by telephone, to approximately 1,175 families with disabled children.

Key findings:

  • Based on the families which were followed-up as part of this evaluation, the average increase in income was over £100 per week, or £5,200 per annum.
  • It was estimated that over the two years of this project, an additional £3million was secured for families annually, with around £2m secured over the past year alone.
  • The report points to other positive outcomes in terms of psychological, emotional and social changes. Families attributed these changes to the welfare rights team, and reported that they had unsuccessfully sought benefits advice elsewhere. Accurate advice for their individual circumstances had proved difficult to find.
  • The expertise offered by the Contact helpline’s welfare rights project is essential to helping families, already under great financial strain, to rectify erroneous decisions, receive their full legal entitlement and be better able to financially manage and provide care for their disabled children.

Read the executive summary of the independent evaluation of the Contact helpline’s welfare rights project.

Caring More Than Most 2017 [PDF]

Working with the University of Leeds we analysed the country’s largest datasets, including the census, to produce the most up-to-date and comprehensive profile of the half million households with a disabled child in the UK today.

Key findings:

  • 24% of parent carers provide 100 plus hours of care every week – the equivalent of working three full time jobs.
  • 1 in 5 parent carers leave paid employment because they are unable to stay in work and maintain their caring responsibilities.
  • Parent carers are more likely than other carers to say the care they provide has affected their health, with nearly a third (31%) saying that it had made them depressed.

Download a breakdown of local authority data for disabled children aged 0-15.

Don’t Miss Out campaign – impact report and next steps, 2014 [PDF]

Our partnership campaign with the Family Fund aimed to find out why parents aren’t claiming Disability Living Allowance (DLA) for their eligible child. As part of our research, we provided tailored helpline welfare advice to 110 parents, the majority of whom were advised to make a claim for DLA.

Key findings:

  • 44 per cent though their child’s disabilities wouldn’t count.
  • 24 per cent thought they needed a diagnosis for their child.
  • 18 per cent felt uneasy making a benefits claim for their child.

Stop the DLA Takeaway survey report: fairness for families when their child is in hospital, 2013 [PDF]

The government argues that DLA is no longer needed when a child spends substantial periods in hospital, and for this reason it removes the benefit after 84 days. This survey, conducted with The Children’s Trust, provides evidence that this is not the case.

Our research was instrumental in the Mathieson’s successful court case against the rules. Find out more about our Stop the DLA Takeway in Hospital campaign.

Key findings:

  • Almost all carers (99 per cent) provide more (68 per cent) or the same level of (31 per cent) care when their child is in hospital.
  • 93 per cent have increased costs relating to their child’s disability when they are staying in hospital.
  • 15 per cent have experienced their child’s DLA being suspended because they were in hospital for 84 days or more.

Out of reach: benefits for disabled children, 2005 [PDF]

Despite a range of government initiatives aimed at reducing child poverty and improving support for disabled children, families continue to experience poverty and social exclusion. With the Child Poverty Action Group, we published research looking at the problems faced by families with disabled children accessing welfare entitlements.

Join our campaign against cuts to benefits.

Key findings:

  • Access to disability benefits improves childhood experiences and life chances for disabled children.
  • Increasing take-up of DLA is an effective way of targeting support to the poorest families.
  • Poor service provision compounds problems on a daily basis and generates high levels of stress and ill-health.

Caring for sick or disabled children: parents’ experiences of combining work and care, 2006 [PDF] and appendix [PDF]

This study tracked parent carers of sick or disabled children over four years. Commissioned by Carers UK and Contact a Family, as part of the ACE National (Action for Carers and Employment) partnership.

Key findings:

  • Most parent carers find caring has an adverse impact on their own employment.
  • Many feel forced to look for a different type of work or to change their jobs.
  • At work some have been met with ignorance, disrespect or hostility because their need to work flexibly.

Flexible enough, 2004 [PDF]

This report describes the findings of a two-month consultation of 900 parents in the UK on the theme of flexible working in families where there are one or more disabled children. The aim of the report was to understand some of the barriers to employment that families with disabled children face.

Key findings:

  • Factors that prevent parent carers asking for flexible working include not being able to earn less and not knowing their rights.
  • There is an ignorance among parent carers about the law that gives employees the right to request flexible working.
  • Many parent carers turn down jobs, or did not apply for one, because it did not offer flexbility.

Debt and disability: the impact of debt on families with disabled children, 2004 [PDF]

In 2004, we conducted a survey into debt in conjunction with the Family Fund. The aim was to find out how families with disabled children manage their finances and whether they are more likely to struggle with credit commitments and debt than other households.

Key findings:

  • Families with disabled children are more indebted than the general population, with more of them in some financial difficulty.
  • Levels of housing arrears and arrears on Council Tax and utility bills are unacceptably high.
  • Many families link their debt to unavoidable and necessary additional expenses that come from caring for a disabled child.

Reaching families in Wales: mapping families with disabled children – Wales index of multiple deprivation child research, 2011 [PDF]

Research investigating the relationship between families with disabled children in Wales and child poverty by comparing data on families helped by the Family Fund by postcode with the areas of relative deprivation in the Welsh Index of Multiple Deprivation Child Index (WIMD) 2011.

Key findings:

  • The data shows a marked higher concentration of Family Fund ‘families helped’ in the most deprived WIMD categories 1 and 2.
  • Despite this, there are numerically more ‘families helped’ living the least deprived WIMD category 5.
  • There are clear areas in Wales where the higher density of ‘families helped’ in categories 1 and 2 stand our distinctly.