A mother says she is facing having to give up her job in the summer holidays and live off universal credit - because she cannot afford childcare for her disabled son.
Demi Winspear fits her job around school hours during term time to ensure she can look after her severely autistic and non-verbal six-year-old son Seth.
But she says she is “dreading” the school holidays as childcare will become unaffordable and she will be forced to give up her job.
She said: "In terms of special needs holiday clubs I have been searching for months and months and there's just nowhere I can find that will suit his needs because he needs one to one care."
"Once the word SEN is put in there - the price goes right up and parents just can't afford it.
"It's a real shame because it is really quite upsetting because we want our kids to have just the same as everybody else's but we just don't get that.
“I want him to have fun and do things that other children do but he can’t."
The situation is so dire Demi thinks she will have to give up work over the summer, and feels she has been left with no other option.
She says giving up her job would mean she would be relying solely on benefits to make ends meet.
“I won’t have an income so I would just be living off universal credit,” she says. “I would have nothing.
“If I am not working I am going to struggle to pay anything so I will be stuck in a limbo where I wont be able to pay anything, so yeah I do worry.”
The situation is so dire one charity worker believes many parents are being pushed into poverty because they have a disabled child.
Elaine Healey from the charity Our Kids Eyes in Tameside says stories of parents giving up work are all too familiar.
The charity offers support for families with children who have special needs.
Elaine believes many parents are being pushed into poverty because they have a disabled child.
Elaine said: "The minute they start school there is no childcare for children with complex needs, disabilities, SEN - there just isn't.
"Grandparents are expected to work until they are 67, 70...they're not at home anymore to help with childcare so our families are just giving up their careers.
"I know speech and language therapists; policewomen; social workers who are just giving up all their careers because they can't find childcare.
"And then you're plunged into poverty because you're not able to work anymore because you have a child with special needs. It's just shameful."
Figures reveal disabled children are most at risk of missing out on childcare during the summer holidays, forcing many parents to give up work to look after them.
More than 80% of parents of a disabled child say they struggle to access care during the school break, while those who can face extra costs of at least £538 a month.
Charities say the situation means disabled children are most at risk of missing out.
Figures from a number of charities show a bleak situation:
More than a million children live with disabilities in the UK and more than half of parents said they'd had to give up work to look after their disabled children.
80% of parents said they'd struggled to access childcare during the summer holidays.
Families caring for a disabled loved one face extra costs of £583 per month - with that figure likely to rise during summer.
Archie, 10, has Angelman Syndrome - a rare genetic condition causing severe physical and learning disabilities.
He needs one to one care and his behaviour can be challenging and unpredictable
His mum, Mandy Mattison, is a paramedic and works nights as there are no before or after school clubs Archie can go to.
But she says it is the summer holidays and lack of accessible childcare that pose the biggest problem.
"I always say I go to work for a rest which people think how can your job be a rest but it's my normality away from looking after a disabled child," Mandy says.
"There isn't any wraparound care. I work mainly nights because of it so I am here when he goes to school and when he comes home which if I'm on shift doesn't give me much sleep during the day.
"The holidays are a real struggle. I've got to use all my leave and obviously I don't have enough leave to cover all of them."
Mandy's husband is self employed so will not get paid if he doesn't work, and they don't have any family that can help.
Mandy thinks the void when it comes to childcare for children with disabilities is down to funding and a shortage of people with suitable skills to look after them.
The Department for Education said it is working on new schemes to provide respite breaks for families with disabled children
A spokesperson said: “We are rolling out the single biggest investment in childcare in England ever, set to save a working parent using 30 hours of childcare up to an average of £6,500 per year. “On top of this, our Holiday Activities and Food programme, backed by £200 million per year to 2025, provides heathy meals, enriching activities and free childcare places to children from low-income families over the holidays. “We are also investing £30m to test new and innovative approaches to short respite breaks for families of children and young people with special educational needs or disabilities.”