Families raising disabled children ‘being driven further into debt', reveals Cost of Caring report

Belfast Telegraph

6 days ago

In its Cost of Caring report, charity Family Fund said families struggled with additional costs for items such as specialist equipment, utilities, medical appointment travel, food and increased wear and tear on the home.
Its survey of 2,362 families UK-wide included testimony from 266 families in Northern Ireland, including Belfast single parent Julie Ann, who has two daughters: Ella, who's five, has autism, and is in a specialist unit in a mainstream school, while Niamh is two.
Julie Ann, who did not want to share her surname, is due to start a new job after having to give up her job of 18 years to care for Ella. She recently had to turn to Family Fund for help.
She said: 'I was mentally drained from everything that was going on, and the pressure of having two children, and then Ella having complex needs. Ella only goes to school for four and a half hours a day... so I can only work certain hours. It took them six months to get her into her new school.'
Julie Ann said her flexible-working request was declined and her nearest crèche didn't have availability.
'Ella doesn't have enough opportunities and I feel all this guilt,' the mum explained.
'Now my fridge-freezer is broken and I know I'm going to have to replace it. My washing machine is beeping every time it's on. It's working, but I'm guessing it's on its way out. Being a single parent, and then obviously with the two girls, the mortgage and everything else, it's a stretch.'
Through Family Fund, however, she received a grant for a bed and the mattress and was 'absolutely delighted' because her own funds would not have stretched to cover the costs.
She was able to move her two-year-old into Ella's old cot bed safely, with Ella using the new bed bought with the help of Family Fund.
According to Family Fund, families are struggling with non-stop caring and are unable to afford essentials such as food and heating.
Cheryl Ward CBE, Family Fund's chief executive, said: 'This report highlights stark findings, with no improvement since our 2022 surveys.
'As caring costs increase for families, barriers to paid work as a route out of poverty remain unchanged, including a lack of suitable childcare.
'Until these challenges are addressed, families raising disabled and seriously ill children can't escape the cycle of living in debt, going without essentials like food, clothing and furniture and experiencing poor mental health.
'We're supporting rising numbers of families each year with basic items like washing machines, beds, clothing and equipment.
'Parent carers are going to huge lengths to do the best for their children, regularly sacrificing their own wellbeing in the process.
'Families raising disabled children are at the sharpest edge of income instability. The Child Poverty Strategy provides an unmissable opportunity to listen to what families have to say and tackle the very real and pressing issues they face every day.'
The charity, which gives essential grants and services to families on low incomes raising disabled or seriously ill children and young people, shared key findings:
Benefits are not keeping pace with the cost of living
The survey found that 44% of families raising a disabled child cannot meet day-to-day living costs, despite receiving disability benefits. And 87% of parents and carers have no savings at all, so can't replace essential items when they break, like a washing machine or bed.
Caring is a barrier to work for most
Just 7% of parent carers say they're able to work as much as they would like to, as a direct result of caring responsibilities. They provide the equivalent of an extra full-time unpaid caring role every single day, across personal care, supervision, medication, therapies and medical appointments. And 60% of parent carers said having no suitable childcare was a barrier to work, with one parent saying they had been on a waiting list for five years. Just over two-thirds (77%) of families who responded said they have multiple disabled or seriously ill members being cared for at home.
Being unable to afford basic essentials
Families are now living without the basics, with a resulting poorer quality of life. Over half of parents and carers (51%) continue to report skipping or cutting the size of their meals (down from 54% in 2022), 33% can't afford to keep their homes warm, 46% can't afford necessary dental treatment, 17% can't afford over-the-counter or prescription medicine for themselves, and 11% are unable to afford basic toiletries.
Depleted mental and emotional health
The stresses on parent carers have left over a quarter (28%) reporting probable clinical depression; 68% of children are negatively affected by their family's financial situation, which impacts on emotional wellbeing, health, development, or education; and 22% of families say they're unable to celebrate birthdays and festive occasions due to financial pressures.
The charity said it gave over 200,000 grants and instances of support to families in 2024/25 compared to 150,000 last year.