Families forced out of labour market amid rising costs

5 mins read

Wednesday 4 December 2024

62% of parent carers have given up work or reduced hours, on average losing £21,174 from their family income.

Together with enormous energy bills and rising costs of getting a diagnosis, therapies and help at school, many families with disabled children are in an impossibly precarious financial situation. 

These are the findings of latest Counting the Costs survey of 4,262 families with disabled children in the UK. Thank you to everyone who took part in the survey and the parents speaking out in the media this week.

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Families going without the basics, causing ill health and learning issues

Contact’s Counting the Costs research found that: 

  • 43% of families have gone without heating. 
  • 32% of parent carers have gone without food for themselves. 
  • 33% of disabled children have gone without therapies and 23% without specialist equipment and home adaptations in the last year. 
  • 50% have got into debt or borrowed money in the last 12 months to pay for basics. 

Going without essentials is causing: 

  • 33% of parent carers say it has made them unwell. 
  • 31% said it affected how their child can learn. 
  • 20% say it has made their child’s condition worse.

Cost of disability running to thousands each year

Caring for a disabled child involves many extra costs. On average parents are paying an extra £322 a month (£3864 each year) due to their child’s condition. Some of those are getting into debt because waiting lists are long and services have been reduced or cut so they are being forced to pay for therapies, diagnosis and special equipment.

Their unique costs include: 

  • Overall families with disabled children spend a third of their income on food. Half have children with a special diet such as ARFID or blended. 
  • 35% pay for therapies essential to their child’s condition at an extra cost of £805 per year. 
  • 44% must buy continence products at a cost of £522 each year. 
  • 9% have a child at home because they didn’t get a suitable school place this September. These parents must find an extra £27 a week to keep their child at home. 

Families to tell MPs the issues they face

We’re launching the findings in parliament today at an event sponsored by Ben Coleman MP for Chelsea and Fulham, where parents will speak out about the issues. 

Ben Coleman, MP for Chelsea and Fulham, said: “I know from working with disabled children, young people and their families over many years the extra costs they face and the difficulties that brings. It’s essential to give families with disabled children the opportunity to speak about the changes they want to see – whether that’s a chance to take part in paid work, better social care or educational support, or help with energy costs. 

“The Child Poverty Strategy is a real opportunity to make a difference to children up and down the country. To succeed, it must recognise the additional challenges faced by those with disabilities.” 

“The government needs a a child poverty strategy recognising unique costs and employment challenges”

Anna Bird, Chief Executive of Contact, said:

“Disabled children live in some of the poorest households in the UK. Many are faced with impossible financial choices every day – whether they can afford to attend their child’s hospital appointment or whether they need to turn off the freezer to save electricity for their child’s oxygen concentrator.  

“Life has undoubtedly become more expensive and families with disabled children are paying an additional price for delays in assessments, lack of therapies and children at home because there are no suitable school places. This research shows the Government needs a child poverty strategy that recognizes the unique costs coupled with employment challenges that families with disabled children experience. We need to see a strategy with clear and ambitious goals to improve their household incomes and reduce essential costs.” 

In response to the findings, we are calling for:  

  • An energy social tariff for critically ill disabled children.  
  • Breakfast clubs and childcare options that meet the needs of disabled children. 
  • Fix Universal Credit and unlock savings held in Child Trust Funds.  
  • Investment in support for disabled children through schools, social care and health to reduce financial burden on families. 
  • A benefit check for every parent carer in the UK. 

Our research also found that the benefit system feels like a minefield for most and many don’t trust it either. We are uniquely placed to help families get the financial support they are entitled to, making the process of claiming less stressful. 

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