The cost of caring: Families raising disabled or ill children are being driven into debt, York charity warns

Just under 45 per cent of families raising a disabled child said they could not meet day-to-day living costs, despite receiving disability benefits and over half of parents and carers (51 per cent) reported skipping or cutting the size of their meals. A total of seven per cent of parent carers said they were not able to work as much as they would like to, as a direct result of caring responsibilities, whilst 33 per cent said they couldn’t afford to keep their homes warm.

Summaira Azam knows how tough it can be. She lives in Bradford with husband Sikander and four children, including 18-year-old son, Haris, who has juvenile Batten Disease, a rare genetic disorder that affects the brain and nervous system.

He was diagnosed aged just four. Summaira recalls: “I remember this empty room with a tissue box on the table and the nurse took care of my daughter and my son and I was about six months pregnant with my third child, while the doctor spoke to me and my husband. We knew this was not going to be good news. They said ‘there is no cure’.

“I have had very broken moments, there were times when it was hard for me to look after him, to understand him...I'm his full-time carer. I do his feeding, his drinking, help dress him. He’s a tall lad and his mobility has got so bad that you have to be very patient. He’s such a lovely boy. Sometimes he says, ‘Mum, don’t worry, I am a big boy now.’”

The family had to move house to accommodate Haris’ needs. "It did make Harris’ life a lot easier because his room and bathroom are across from each other, but for us it's very hard because the bigger house, the bigger expenses...We can’t afford if something breaks. I feel capable of work and there was a time last year when I wanted to take on work as it was a real struggle. My husband has retrained and works hard to cover the bills and the mortgage but it's all the extra care that costs.”

Family Fund helped Summaira by granting a washing machine and fridge which helped furnish their home. They have also received items including toys, clothing and an iPad. More families than ever before are applying for support, the charity says. In the last year, it gave more than 200,000 grants and instances of support to families.

Chief Executive, Cheryl Ward says: “Our 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 well-being in the process.”

The Cost of Caring research recommends that additional costs of disability – both financial and emotional - must be properly recognised in the support available to families and that childcare and respite services must be available, affordable and tailored to children with complex needs.

A Government spokesperson said: “The evidence is clear that this government inherited a SEND system left on its knees – which is why we are looking at changes to improve support for children and stop parents having to fight for help.

“Through our Plan for Change this government is actively working with parents and experts on the solutions, including more early intervention to prevent needs from escalating and £740 million to encourage councils to create more specialist places in mainstream schools."