Are disabled children being refused the right to an early years education?

Every child is entitled to 15 hours of early years education each week. But when Stacie Lewis tried to place her disabled daughter in a nursery, she found she had a fight on her hands

Five years ago, I stood in the reception of our local primary. Rated "outstanding" by Ofsted, I hoped they would take my daughter into their attached Sure Start nursery. They not only refused to take her, they refused even to show us around. My daughter was one year old with gorgeous rolls of podge and an infectious laugh. She was also disabled.

According to the Department for Work and Pensions, there are 800,000 families in the UK with a disabled child. But research by the Papworth Trust has revealed that only 16 per cent of women with disabled children can return to work – and even then only 3 per cent full-time – compared to 61 per cent of mothers who don't have disabled children.

These children are being refused the right to an early years education and, as a result, their mothers are being denied their basic right to work and provide for their families.

When my daughter, May, was born severely disabled I wouldn't have called myself lucky. I would now. Unlike 84 per cent of women like me, I wasn't forced out of my job.

Five years ago, I wrote about my daughter for The Independent. "May is a delightful baby... she is an absolute pleasure. She remains unaware of the dire predictions for her future. Rather than lie in her cot, totally unresponsive, she took up Olympic-level bouncing and gorgeous squeals of pleasure at the sound of birdsong."

Naively, I thought other people would see her potential, too. In the end, we had the demoralising experience of more than 50 nurseries and childminders refusing to take her. There is no statutory requirement for even state providers of childcare to take disabled children, so they had no issue turning us away.

The primary that refused to show us around advertised that they prioritised special needs for admission. I asked for a copy of this admission policy but they admitted there wasn't one. They made us jump through hoops for months and then, when pressed, told us prioritising May would be "unfair on other parents". As an "outstanding" school, they made the outrageous claim that May only needed to attend nursery so I could work, not for any developmental benefit.

Finally, May was accepted at another nursery. Then, a month before I was meant to return to work, that nursery pretended they hadn't accepted her. They put her on a waiting list that we later discovered didn't exist. She was the only one on it and she never came off.

I can remember days on the phone sobbing, as I literally begged nurseries to take her so that I wouldn't lose my job.

When I spoke to my local council about it, they treated my return to work as frivolous. In contrast to endless political rhetoric about how mothers should return to work, these Government officials fought us every step of the way. They discouraged me and called returning to work a "lifestyle choice" as opposed to the economic imperative it felt like to us. Earlier this month, I participated in a Parliamentary Inquiry into childcare for disabled children chaired by the MPs Pat Glass and Robert Buckland. There, I heard stories from mothers across the country whose children were also denied their basic right to an early years education.

Stacie and May Lewis at their home in 2010 (Richard Mildenhall) Stacie and May Lewis at their home in 2010 (Richard Mildenhall)
Every three-year-old across the county is entitled to 15 hours of free childcare a week. In case after case, disabled children are denied this because the funding allotted doesn't cover the extra costs.

Children such as May are expensive. They need more supervision, training for staff, equipment and even changes to the infrastructure of buildings. When Government funding is made available, it isn't ring-fenced and nurseries and families are aware that it can be snatched away in a second.

The charity Contact a Family recently published research based on over 2,000 families with disabled children. Again and again, they heard from parents who said nurseries refuse to take these children unless parents cover the difference in cost; 82 per cent of parents surveyed paid significantly more towards childcare with over a third paying eight times more.

In our case, we paid £400 a month more than other families in the area.

But we were lucky. We had childcare. And then, only a month after May started, our local council sent this brief email to the nursery: "Unfortunately there is no budget now to pay for 1.1 support. Sorry!" With immediate effect, it cut May's one-on-one care. The nursery could not supervise May safely without this funding, and we couldn't afford the difference. I would have to quit my job.

Weeks of fighting, including an inquiry by our local councillor, forced its reinstatement. But soon after, the council sent an email to every nursery and primary school in the borough stating that it "will only be able to offer advice and guidance not 1:1 support, equipment or childcare" for any new case of a child under six with a disability or medical need.

At the Parliamentary Inquiry, I met Katherine Kowalski who had lived a few streets away from me when her son, who is two years younger than May, was born. Despite her son's complex medical needs, he was refused the very funding that we fought so hard for. Her family was forced to sell their home and move across the country to access childcare so that she could continue to work.

And yet, keeping our jobs is only one aspect of why childcare is important. For children, the benefit is enormous. At nursery, May interacted with other children in a stimulating environment led by experts in early years education. Previously, such situations had caused her severe anxiety. Moreover, she learned the basics, such as how to eat from a spoon.

It shows how shortsighted not funding these children is. May is no longer tube-fed – depending on the Government to provide specialised liquid meals, surgeries to insert the tube, endless NHS visits over infections and the lack of a normal diet.

Nursery taught her to eat from a spoon and, now, May's eating will cost our country nothing. For the rest of her life.

The most unexpected benefit was not for May at all. The nursery called caring for her a "privilege". Parents told me that their children came home singing songs about May. Children rushed to her side cheering when I wheeled her into the room. They brought her toys and turned the toys on when she couldn't do it herself.

Is this not a basic value of human decency that we want to instill in our youth? May attends a special-needs primary now. Nursery is the last chance for our children to fully engage with a severely disabled child.

Last week, I phoned the same "outstanding" primary that wouldn't even show us around. They continue to advertise that they prioritise special-needs cases. I explained that my daughter was disabled as if she were still that baby, five years ago. Their admissions policy had not changed in the slightest – meaning, there was no policy. But they did attempt to reassure me. There was no need for a policy; as long as they felt they could accommodate her needs, my daughter could probably attend.

How can a state-run nursery, housed in a completely accessible new-build school, be rated "outstanding" by Ofsted if it can't accommodate a disabled child?

The children at nursery loved May. Well, I love May, too. But it is not enough that she had access to childcare. All our children deserve that kind of affection and stimulation.

Stacie Lewis writes at mamalewis.com. Twitter: @mamalewisblog

Voices
A Russian hunter at the Medved bear-hunting lodge in Siberia
Save the tigerWildlife charities turn to those who kill animals to help save them
News
Davis says: 'My career has been about filling a niche - there were fewer short actors and fewer roles – but now I'm being offered all kinds of things'
PeopleWarwick Davis on Ricky Gervais, Harry Potter and his perfect role
News
i100
Sport
Frank Lampard will pass Billy Wright and equal Bobby Charton’s caps tally of 106 caps against
sportFormer Chelsea midfielder in Etihad stopgap before New York contract
PROMOTED VIDEO
Life and Style
ebookA wonderful selection of salads, starters and mains featuring venison, grouse and other game
Life and Style
ebookAn evocation of the conflict through the eyes of those who lived through it
Arts and Entertainment
The first film introduced Daniel Radcliffe to our screens, pictured here as he prepares to board the train to Hogwarts for the first time.
booksHow reading Harry Potter helps children grow up to be gay-friendly
Arts and Entertainment
A scene from Aladdin is performed at the Tony Awards in New York in June
theatreBrit producer Lythgoe makes kids' musical comedy a Los Angeles hit
Sport
Usain Bolt of Jamaica smiles and shakes hands with a competitor after Jamaica won their first heat in the men's 4x100m relay
sport
News
Chancellor George Osborne, along with the Prime Minister, have been 'complacently claiming the economy is now fixed', according to shadow Chancellor Ed Balls
i100... which is awkward, because he is their boss, after all
Life and Style
A small bag of the drug Ecstasy
Health
Life and Style
Floral-print swim shorts, £26, by Topman, topman.com; sunglasses, £215, by Paul Smith, mpaulsmith.co.uk
FashionBag yourself the perfect pair
News
news
News
Netherlands' goalkeeper Tim Krul fails to make a save from Costa Rica's midfielder Celso Borges during a penalty shoot-out in the quarter-final between Netherlands and Costa Rica during the 2014 FIFA World Cup
newsGoalkeepers suffer from 'gambler’s fallacy' during shoot-outs
News
people
Arts and Entertainment
Standing the test of time: Michael J Fox and Christopher Lloyd in 'Back to the Future'
filmReview: A week late, Secret Cinema arrives as interactive screening goes Back to the Future
Extras
indybest
News
i100
Independent
Travel Shop
the manor
Up to 70% off luxury travel
on city breaks Find out more
santorini
Up to 70% off luxury travel
on chic beach resorts Find out more
sardina foodie
Up to 70% off luxury travel
on country retreats Find out more
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    (Senior) IT Support Engineer - 1st-3rd Line Support

    £40000 per annum: Ashdown Group: A successful IT service provider that has bee...

    Wind Farm Civil Design Engineer

    £55000 - £65000 Per Annum: The Green Recruitment Company: The Green Recruitmen...

    Principal Marine Mechanical Engineer

    £60000 - £70000 Per Annum: The Green Recruitment Company: The Green Recruitmen...

    Principle Geotechnical Engineer

    £55000 - £65000 Per Annum: The Green Recruitment Company: The Green Recruitmen...

    Day In a Page

    Save the Tiger: Meet the hunters tasked with protecting Russia's rare Amur tiger

    Hunters protect Russia's rare Amur tiger

    In an unusual move, wildlife charities have enlisted those who kill animals to help save them. Oliver Poole travels to Siberia to investigate
    Transfers: How has your club fared in summer sales?

    How has your club fared in summer sales?

    Who have bagged the bargain buys and who have landed the giant turkeys
    Warwick Davis: The British actor on Ricky Gervais, how the Harry Potter set became his office, and why he'd like to play a spy

    'I'm a realist; I know how hard this business is'

    Warwick Davis on Ricky Gervais, Harry Potter and his perfect role
    The best swim shorts for men: Bag yourself the perfect pair and make a splash this summer

    The best swim shorts for men

    Bag yourself the perfect pair and make a splash this summer
    Has Ukip’s Glastonbury branch really been possessed by the devil?

    Has Ukip’s Glastonbury branch really been possessed by the devil?

    Meet the couple blamed for bringing Lucifer into local politics
    Dress the Gaza situation up all you like, but the truth hurts

    Robert Fisk on Gaza conflict

    Dress the situation up all you like, but the truth hurts
    Save the tiger: Tiger, tiger burning less brightly as numbers plummet

    Tiger, tiger burning less brightly

    When William Blake wrote his famous poem there were probably more than 100,000 tigers in the wild. These days they probably number around 3,200
    5 News's Andy Bell retraces his grandfather's steps on the First World War battlefields

    In grandfather's footsteps

    5 News's political editor Andy Bell only knows his grandfather from the compelling diary he kept during WWI. But when he returned to the killing fields where Edwin Vaughan suffered so much, his ancestor came to life
    Lifestyle guru Martha Stewart reveals she has flying robot ... to take photos of her farm

    Martha Stewart has flying robot

    The lifestyle guru used the drone to get a bird's eye view her 153-acre farm in Bedford, New York
    Former Labour minister Meg Hillier has demanded 'pootling lanes' for women cyclists

    Do women cyclists need 'pootling lanes'?

    Simon Usborne (who's more of a hurtler) explains why winning the space race is key to happy riding
    A tale of two presidents: George W Bush downs his paintbrush to pen father’s life story

    A tale of two presidents

    George W Bush downs his paintbrush to pen father’s life story
    Restaurateur Mitch Tonks has given the Great Western Pullman dining car a makeover

    The dining car makes a comeback

    Restaurateur Mitch Tonks has given the Great Western Pullman dining car a makeover
    Gallery rage: How are institutions tackling the discomfort of overcrowding this summer?

    Gallery rage

    How are institutions tackling the discomfort of overcrowding this summer?
    Louis van Gaal has £500,000 video surveillance system installed to monitor Manchester United players

    Eye on the prize

    Louis van Gaal has £500,000 video surveillance system installed to monitor Manchester United players
    Women's rugby: Tamara Taylor adds fuel to the ire in quest to land World Cup

    Women's rugby

    Tamara Taylor adds fuel to the ire in quest to land World Cup