Stark research findings released today by national charity Family Fund show that families raising disabled, or seriously ill, children and young people across the UK now face serious financial jeopardy and are struggling to survive, due to the scale of the cost-of-living crisis.
“The Cost of Caring” covers research with 4,264 families across the UK, with a disabled child, showing that nine in 10 families are struggling, or falling behind on their regular household bills and many are forced to forego living essentials such as food, heating, basic furniture like beds, flooring, washing machines and fridges, to try to make ends meet.
Over half of parents and carers (54%) report skipping or cutting the size of their meals because there wasn’t enough money for food (a 9% increase since September 2021) and more than one in ten (13%) say they have had to cut back on items that are essential for their disabled children.
Four in five families (83%) raising a disabled child or young person are in debt, with rising debt levels for two in five families (43%) polled, and over 40% report they can’t afford to keep accommodation warm – a 13% increase since last December.
On average, families raising a disabled child live on £17,000 a year and spend 60 hours a week caring for their disabled children, with one third caring for over 100 hours a week. Families receive only one hour a week of respite and support, on average, and less than one in four parents and carers are able to work full time, with over half not able to work at all.
Family Fund’s report highlights the, now, unsustainable strain on families raising disabled and seriously ill children and young people , as they try to cover sky-high costs on top of severely reduced incomes due to intense caring responsibilities, three times higher costs to look after a disabled child and critical levels of debt.
With sustained cuts to support services, which have not recovered post-pandemic, families are now having to pay, themselves, for therapies and specialist equipment for their children, such as educational and sensory items and toys.
As the UK’s largest grant-making charity for families raising disabled and seriously ill children on the lowest incomes, Family Fund provides essential goods for families including kitchen appliances, clothing, bedding, play and sensory equipment and much-needed family breaks.
Last year, it delivered over 170,919 grants and services, worth over £37 million, to families on low incomes across the UK.
Wider research findings include:
· Almost all families raising disabled children (98%) report paying more than families with non-disabled children due to specialist needs – clothing (74%), food and groceries (73%), technology such as tablets (66%), toiletries and hygiene products (60%) and replacing worn or broken household items (60%);
· In September 2021, families raising disabled children reported an increase in their household bills of, on average, £800 a year. By June 2022, even before current price rises, this increase was over £1,500.
· Three in five families (62%) reported cutting back on play, leisure and recreational activities with their disabled children during the last year;
· In the past year, 50% of families report their disabled children’s physical health has worsened and 68% say their disabled children’s mental health has deteriorated.
· 1 in 5 families report taking on more credit to keep up with existing credit commitments
Cheryl Ward, Family Fund Chief Executive, said: “The outlook for families raising a disabled, or seriously ill, child is now graver than ever. They are unsure how to cope with ever-rising caring costs with winter approaching, they are having to borrow more credit to pay for intense levels of debt and feeling more isolated than ever, with worsening mental and physical health.
“These are families on the lowest of incomes, due to caring for their children round-the-clock and having far-reduced available support services, post-pandemic.
“When caring costs have spiralled so far out of control that families are having to cut back on the very essentials their disabled child needs, something has to change.
“Along with our sector partners, we are urging Government to ensure that family benefits are increased in line with inflation, rather than reducing at a time when the escalating costs of caring are already jeopardising families’ lives.”
West Midlands parent: “How will I be able to keep my disabled child warm for medical reasons…this coming winter when I’m struggling to pay gas and electric in summer?
“How will I afford petrol, which I need as I have two children with physical disabilities including one in a wheelchair. And the cost of food, and availability of safe food for an autistic child if shortages start happening. I worry every day and night over this.”
North West England parent: “Caring for our child is not the issue, she is the light of our lives. Being able to access the right care, education and support in order to provide me the opportunity to work is the key.”
The Cost of Caring features research from the charity’s last four quarterly family polls, from September 2021 to June 2022, ahead of a new September poll coming soon.
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