We are forced into debt and go without food to care for our kids… we have to choose between heating or hospital travel
Mum Bisi Daniels is stuck between a rock and a hard place.
The 43-year-old insurance professional knows she may well have to give up her job to home school her autistic son - but like most parents, she can’t afford to give up work.
Those who do face untold financial problems and a new report today lays bare the number of parents of disabled children being plunged into poverty.
They are also burdened by the extra costs of therapies, diagnosis and extra help for their children.
More than six in ten have given up work or reduced their hours leading to an annual average loss of £21,174 per household, according to fresh statistics.
The Counting the Costs survey, by disability charity Contact, says that families are struggling to pay heating, 32 per cent of parents go without food and half have got into debt or borrowed cash in the last year to pay for basics.
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Bisi, 43, lives a few streets away from Prime Minister Keir Starmer in Camden, London - and is begging the Government to give more help to disabled families.
Her five-year-old son Shaka has non verbal autism and global development delay.
She said: “I worry that I will have to give up my job because of my caring responsibilities.
“As well as working full time when it comes to Shaka, I also have to be an occupational therapist, physiotherapist, speech therapist, educational psychologist , dietician and legal assistant making sure all Shaka’s paperwork is up-to-date.
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“Shaka is in a mainstream school and I have been trying to move him to a more suitable school since November 2023, but my concerns have been ignored.
“I can't afford the thousands of pounds in legal fees it will require to get my son the help he needs at school.
“When you are juggling all this and trying to make sure you have a roof over your head and pay all your bills it doesn’t add up.
“We are already under so much pressure without adding financial pressure too – caused because we are trying to fill the gaps in a system that intentionally fails families.
“Now I’m having to contemplate home schooling my son and leaving work. In my job I deal with stressful situations all the time but the battle to get things in place for my son is much more stressful.
“Keir Starmer is my neighbour – his road is right by mine. He needs to start paying attention to what is going on in his own borough.”
The report found that a third of parents carers say being unable to afford essentials is making them unwell while 20 percent say it has made their child’s condition worse.
The charity’s poll of 4,262 families found that 33 per cent of disabled children have been deprived of therapies and 23 per cent have gone without specialist equipment and much needed home adaptations.
The Sun has been running its Give It Back campaign to stop funding cuts to families.
The Counting the Costs report says that parents are paying an extra £322 a month due to their child’s condition and some are getting into debt paying for services because they are waiting for specialist help or diagnoses.
The charity is calling for urgent action including an ‘energy social tariff’ for critically ill disabled children, a benefit check for every parent carer in the UK and childcare options that meet the needs of disabled children.
We have to watch when we switch the heating on
Nicola Holmes
Bisi is far from the only mum to be impacted work wise.
Nicola Holmes, 54, lives in Tewkesbury with husband Wayne, son Ethan, 18 and daughter Ella, 12.
Ethan is autistic, has Down’s Syndrome, PDA profile, anxiety and sensory processing difficulties, Ella is autistic and has PDA profile, anxiety and sensory issues.
Nicola - an actor and beauty therapist- had to give up work when Ethan was born and has had to be careful with energy use and food bills. She has also had to borrow money to get through.
She said: “We watch when we put the heating on, I get some items from charity shops and I’m very conscious of the clothes I buy.
‘We’ve lost out financially but also physically and emotionally.
‘I haven’t been able to do ‘paid’ work for 18 years- caring for the children, going to appointments and meetings, fighting to get support is a 24/7 role.
“ Until last year Ethan was in nappies and has the mental age of a five-year-old. The system that you turn to for support causes trauma and puts barriers in place at every turn.
“Disabled families are falling though the cracks and many are suicidal.”
Counting pennies
Danielle Preston, 43, lives in Portsmouth with son Finlay, 12, who is autistic and daughter Thea, 9, who is autistic and has ADHD, ARFID (Avoidant/ Restrictive Food Intake Disorder) and an undiagnosed condition which affects her mobility.
She said: ‘I am a single mum and a parent carer.
“I am unable to work because Finlay’s condition means he has not managed a full year of school since he was five-years-old.
“He was out of school for 18 months and although he is now in a special school he is still on a part-time timetable, only attending for 3-4 hours a day.
“Thea is in nappies at nighttime and has ARFID so is on a special diet, which brings increased costs.
“I have to watch everything we spend as money is tight. Whenever you mention SEND everything doubles in price.
“Not working is bad for me mentally – I feel useless and society treats those who don’t work like the scourge of the earth. I want to work but it is impossible.”
"Nothing has changed"
In October, two new reports laid bare the lack of help for parents of disabled children.
A Children’s Commissioner Report revealed an estimated 400,000 children in England are seeking support for conditions like autism, ADHD, and cerebral palsy.
A House of Lords inquiry into the job opportunities for young disabled people found that they face "continuous barriers to securing long-term employment."
Writer Sam Carlisle, who has a 15-year-old disabled daughter Elvi, penned an emotional piece for The Sun's Give It Back campaign in the midst of the devastating reports.
Sam, who has been campaigning for more than a decade, aptly described the struggle faced by many parents to get help for their beloved children.
She wrote: "It was a tragedy that compelled me to start writing about my disabled daughter, Elvi, 15 years ago.
"A mother and father, distraught at their tetraplegic son’s death from a virus aged five, had jumped from well-known suicide spot Beachy Head together.
"Their boy’s lifeless body was in a rucksack strapped to the dad and the mum was clutching his favourite toys.
"In the inquest reports it sounded like they had very few people who understood the stress of their lives.
"I was so upset by what must have been their extreme loneliness and pain that I felt I had to write about what life was like with Elvi, then eight.
"I rarely saw stories about families like ours and felt a duty to bring our life into the open so that other parents didn’t feel so isolated.
"I never dreamed 15 years later how much worse the lack of support for Elvi, who has a rare genetic disorder, would become and how loud the cry would be from anguished parents at the inability of the system to assist the most vulnerable of children.
"I feel that over the 15 years I’ve been campaigning for disabled children and their families things have become far worse.
"In that time I’ve waded through oceans of paperwork for Elvi, spent hours in the “corridors- of-doom’ outside hospital consultants’ offices, gone into endless bitter battles with council officials and social care teams whose job appears to be to refuse help or equipment or the right school placement, given up my job and cried so bucketfuls of tears of frustration and anger.
"Elvi is incredible but the bureaucracy surrounding her and most disabled or neurodivergent children makes me and her dad feel like we are pushing a rock up a mountain. Every day, with the weight of the State pushing it back against us."
Anna Bird, Chief Executive of Contact, said disabled children “live in some of the poorest households in the UK.
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She said many are faced with impossible choices every day - “whether they can afford to attend a child’s hospital appointment or turn off the freezer to save electricity for their child’s oxygen concentrator.”
She said: “This research shows the Government needs a child poverty strategy that recognises the unique costs coupled with employment challenges that families with disabled children experience.”