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“I can’t do any more hours even though I’d like to, because of caring responsibilities. I can’t leave my son with anyone because of his condition and I can’t afford childcare which is so much more expensive for children who have additional needs. I have extra disability related costs of £400 - £500 each month. This includes transport. His condition means his sensory issues he can’t cope with crowds. This means it’s impossible to take the bus to his hospital or doctor’s appointments so I have no choice but to get him there by taxi which is a £30 round trip every time. When I don’t have the money to do this it means he has to miss out. He needs specialist clothing like seamless socks and they are £49.99 for a pack of 6 – compare that to a pack you can pick up in the supermarket for £2.99 for children who don’t have sensory issues.”
This is a mum’s life, a lone parent working part-time, who responded to our survey in 2018. She has a 13 year old son who has autism, communication difficulties, learning disabilities, ADHD and hypermobility.
Back in 2008 we wanted to find out how families with disabled children were affected by the economic downturn. We have now carried out five Counting the Costs surveys in a decade and our report in 2018 has shown that, “since then austerity, changes to the welfare system and cuts to local services have all had an impact on the lives of the families we support.”
During this time disability and care costs have gone up while financial support offered through the welfare system has dropped away. We reported that “at the same time the system of local support for disabled children such as short breaks (respite) and therapies has been hollowed out, creating a perfect storm.”
There were startling findings from our 2018 research into the family finances of 2,772 families across the UK, (281 parents in Scotland) including these key findings:
What is the impact on families and children’s lives?
For some of the most disabled children and their families, it is truly distressing to hear that disabled children are going without essential therapies and equipment and are unable to make vital visits to the GP and hospital and parents said this impacted on their child's condition.
These are not luxuries, they are essential to keeping disabled children well and able to do everyday activities that others take for granted like eat, talk, leave the house and go to school. Sadly, the findings in the report also suggest that at Christmas 2018 some disabled children went without presents and treats.
Another parent told us, “We are definitely worse off due to benefit changes – more than £30 per week. We are changing from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) in a couple of years and I am dreading that because from what I’ve heard many young people get less than they were getting. The DLA my child gets doesn’t cover the extra costs I have each month and I often have to borrow money from friends and family which of course then gets me into debt. My child is a December baby so this year I can’t afford the Christmas or birthday presents for him that I’d like to.”
Joseph Rowntree Foundation study concluded “that the minimum cost of raising a severely disabled child is, on average, three times more than for a child without a disability.”
CPAG Scotland has evidenced the financial impact on families with disabled children, finding that “additional costs arise for families caring for a disabled child. 38% of children in families where someone is disabled are in poverty, compared to 26% of children in families where no-one is disabled.”
There are changes in Scotland with the new Social Security Service and Scottish Government consulted on the new devolved Disability Living Allowance, Disability Assistance in Scotland, due to open to applicants in 2020.
But Contact has found that 100,000 families with disabled children (UK) will be worse off by more than £1,750 per year as a result of the 50% cut to the child disability payment under Universal Credit. That's £175 million less going towards helping disabled children with their extra care costs.
Contact provides an information service for the family around the disabled child, whatever the child’s condition or disability, with or without a diagnosis; signposting families to appropriate support and services, so parent/carers know how to get the support for their family; are confident to deal with the challenges they face; their financial disadvantage is alleviated. We engage families in shaping and influencing policy and services around the entitlements for disabled children, so families are understood, valued and included as equal participants in their communities and society.
Support the work for families with disabled children, leave your comment and follow us on Contact Scotland Facebook page.
Other articles published in our December 2019 newsletter