Research

We conduct research and surveys to understand the scale of some of the issues faced by families with disabled children. Thousands of families have contributed to our research, and our findings have helped us achieve a number of campaign successes.

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Finances, work and childcare

• 33 per cent of families have extra disability and care related costs of £300+ per month.
• 40 per cent of disabled children are going without birthday and Christmas presents; 26 per cent are going without essential therapies.
• 26 per cent of parents said their child’s condition has worsened due to going without basics (up 4 per cent since 2014).
• 33 per cent have taken out a loan to pay for food (compared to only 4 per cent a decade ago).
• 36 per cent said that changes to the benefits system in the past two years have left their family worse off (all Counting the Costs, 2018).

Browse our research publications on family finances.

Accessing services

• 76 per cent of families don’t visit the GP about their child’s disability or condition (GP involvement in disabled children’s care, 2011).
• The majority of disabled children participate in a limited number and range of leisure activities (Fair play for disabled children: Bevan foundation report, 2010).
• In relation to education, employment and training, outcomes are poor for young disabled people who have been looked after (How we set the scene, 2009-2012 (Scotland)).

Browse our research publications on accessing services.

Improving services

• Short breaks services appear to have prevented disabled children entering the ‘looked after’ system (Impact of the short break programme, 2011).
• Parent carer forums have contributed to the transformation of the way in which services for disabled children are developed, delivered and evaluated (How parent participation leads to better outcomes, 2011).
• The number of parent carers involved in planning services in their area has increased to 1,710 across 146 local authority areas, up from 465 in September 2008 (Towards a more ordinary life, 2008-2011).

Browse our research publications on improving services.

Family life and relationships

• One in five say that isolation has led to the break up of their family life (Forgotten Families, 2011).
• More than three quarters of families say that the opportunity to spend time with their spouse or partner away from the role of caring is poor or unsatisfactory (What Makes My Family Stronger, 2009).
• 53 per cent of parents say that caring for a disabled child has caused major difficulties or the breakdown of their relationship (No Time for Us, 2003).

Browse our research publications on family life and relationships.

Stigma and discrimination

• 22 per cent of parent carers say that their child is illegally excluded every week, and 15 per cent say every day (Falling through the net, 2013).
• 50 per cent of parent carers say their child’s illegal exclusions prevent them from working (Falling through the net, 2013).
• 96 per cent of parent carers said that their disabled child has been bullied at school (Bullying of children with disabilies in schools, 2011).

Browse our research publications on stigma and discrimination.

Facts about families of disabled children and young people

• In the UK, there are a million disabled children under the age of 16 – that equates to one child in 20.

• 99.1 per cent of disabled children live at home and are supported by their families.
• 52 per cent of families with a disabled child are at risk of experiencing poverty.
• The income of families with disabled children averages £15,270, 23.5 per cent below the UK average income of £19,968, and 21.8 per cent have incomes that are less than half the UK mean.
• Only 16 per cent of mothers with disabled children work, compared to 61 per cent of other mothers.
• It costs up to three times as much to raise a disabled child, as it does to raise a child without disabilities.
• 56 per cent of parents with disabled children and children with special educational needs reported there was a lack of sufficient childcare in their area.
• Caring for a disabled child can cause relationship problems. According to one study, 31 per cent of couples report some problems, 13 per cent cite major problems and 9 per cent actually separate. Stress, depression and lack of sleep are other commonly experienced problems.
• Only one in 13 disabled children receive a regular support service of any sort from their local authority.
• Pupils with special educational needs (with and without statements) account for 7 in 10 of all permanent exclusions from school. This is the highest rate of permanent exclusions.

Get involved in our research

We couldn’t conduct our research without thousands of parent carers sharing their experiences with us. If you’d like to find out about getting involved in our research, contact our campaigns manager Una Summerson at una.summerson@contact.org.uk.

Join one of our campaigns

We use our research to inform our campaign work, and in some cases our findings have led to changes in policy.

For example, our Stop the DLA Takeaway in Hospital report was used as evidence in the Mathieson case, in which taking away a young boy’s DLA while he was in hospital for a long time was found to be a breach of his human rights.

Find out more about getting involved in our campaign work.

Support our research work

We couldn’t carry out our research work without your vital support. If you’re able to, please consider making a one-off or monthly donation to help us identify the areas in which families with disabled children most need us.