Supporting Families

Making sure that the families of children, young people and adults with a learning disability are able to get the support that they need

What actions need to be taken?


1. Reform Carer’s Allowance 

Being able to get financial support can make a real difference to family members who support a relative with a learning disability, as well as all others who provide unpaid care. But there are serious issues with how Carer’s Allowance currently works in the UK. 

In the UK, you can only get Carer’s Allowance (£76.75) if you care for over 35 hours a week, and you have to have a weekly income of £139 or less – equivalent to £7228 per year. On the current National Living Wage of £10.42, this means you have to work less than 14 hours per week. You can’t get Carer’s Allowance if someone else who supports the same person claims Carer’s Allowance, even if you also provide 35 hours or more per week. It can’t be claimed if you study more than 21 hours per week, or if you receive a State Pension, and if you receive Universal Credit as well as Carer’s Allowance, Carer’s Allowance is deducted from your Universal Credit entitlement. 

These criteria mean that many people providing unpaid support to others, including family carers providing support to relatives with a learning disability, struggle with the cost of living. The high threshold for, and conditions of, eligibility mean that many people providing unpaid support cannot access it, and the low level of Carer’s Allowance means that even those who are eligible struggle to make ends meet.  

Research by Carers UK found that 2.6 million carers had given up employment in order to provide care and support in 2019 – and in 2023, 62% of carers had either given up employment (40%) or had to reduce their hours (22%) in order to provide care and support. A February 2024 report by the Centre for Social Justice found that 41% of carers who currently work are considering leaving the labour market or reducing their hours in the next year. However, many carers who have had to give up or reduce their hours want to work, but are barred from doing so by the eligibility criteria of Carer’s Allowance and because they cannot access other support for the person they support. 

The Joseph Rowntree Foundation (JRF) found that people providing unpaid social-care support are on average £414 a month poorer than if they were not providing this support – rising to over £600 a month (nearly £8000 a year) after six years of providing unpaid care and support. Family carers of people with a learning disability often provide continuous support throughout their relative’s life, including well into their own ‘retirement’ – far longer than six years. The financial impact of caring for long periods, including into older age, is exacerbated by the fact that people receiving a State Pension are unable to receive Carer’s Allowance, despite frequently providing significant amounts of support. 

Linked with the reduced ability to work, carers are more likely than the general population to be in poverty. The JRF found that 22% of people providing over 20 hours of unpaid social care support per week were in poverty, compared to 18% of the general population – a finding supported by the Health Foundation. The Department for Work and Pensions (DWP) found that 1 in 5 households that receive Carer’s Allowance live in food insecurity (nearly three times the rate of the general population), and 35% of carers receiving Carer’s Allowance have had to cut back on food and heating. 

The Government and the Department for Work and Pensions need to: 

  • Increase the rate of Carer’s Allowance 
  • Increase the financial threshold for eligibility to incentivise and enable carers to work if they wish to do so 
  • Change Carer’s Allowance so that it is not deducted from Universal Credit entitlements 
  • Enable people in receipt of a State Pension to claim Carer’s Allowance 
  • Enable people in more than 21 hours of education per week to claim Carer’s Allowance 


See below for further examples of calls to reform Carer’s Allowance, practical recommendations for how this can be done effectively, and evidence for why this is necessary: 


We have worked to co-produce these actions and asks, building on years of work that has gone before it. We are happy to engage with policy makers at a local, regional, and national level about how we can get things right for people with a learning disability whose behaviour challenges. If you would like to talk about any of the actions in this plan, or any work you are planning on doing, please email